Mar 15 - Mark Church, James Medical, will discuss and demonstrate products and ideas for assistive devices, helps, as well as any new developments.
Apr 19 - Dr. Nancy Jackson, IPFW, will share results of the IPFW-Philharmonic-FWPSG Music Study recently concluded.
May 17 - Doctors Ronald and Tasha Williams, neuropsychologists, will return to discuss care giving for dementia, with an emphasis on Alzheimer's.
Jun 21 - Caring and Sharing
February Meeting
A special “Thanks” to Aimee Stir, OT at the Ft. Wayne Rehabilitation Hospital for her presentation on the “Older Driver”. She presented lots of valuable tips for us.
Driving is very important to all of us, whether we do it ourselves or have someone drive us from place to place. It is a convenient skill that we hate to lose.
In order to keep driving, we need to maintain the following skills: Visual, spatial skills, information processing, good judgment, good decision making, rapid reaction time, and good problem solving skills. Parkinson’s disease affects one’s ability to maintain these skills. A 2002 study directly links PD and the potential for car accidents. All of the PWP’s had been involved in accidents. Iowa University studies suggest PWP’s are much more likely to make errors in judgment, and they have more difficulty in unfamiliar territory, and make more safety errors. Multiple studies have been done and PWP’s always fair poorly in those studies.
When you feel that your spouse needs to “give up the keys”, there are five things you should do: Speak frankly to your spouse, consult with your adult children, consult with friends and other family members, talk with your physician, and consider a driving evaluation.
A formal evaluation requires a physician’s order, and it evaluates vision, musculoskeletal function, cognition, reaction time, attention, and processing. Then after the clinical evaluation, you get behind the wheel for your driving test depending upon the test results there are several recommendations range from continuing normal driving, to stopping completely….
Self-evaluation is always a great place to start. Do several things, including but not limited to:
· Do I use my turn signals?
· Do I wear a seat belt?
· Do I know the law?
· Am I bothered by busy intersections?
· Is merging into traffic difficult?
· Do I react differently now/
· How do I drive when upset?
· Are my thoughts wandering?
· Can I see well at night?
· Do my medications affect my driving?
· Are my “warnings and/or tickets “on the rise?
There are several transportation options:
Allen County Council on Aging – 424-2012
Citilink – 432-546
CTN – 420-3280
Gibson Mobility – 493-8070
JJR Mobility – 432-2486
Royal Transportation – 456-2311
St. Vincent DePaul Care Van – 46-3561
Various Taxi Services.
OTHER REFERENCES
www.councilonseniorservices.org
www.seniordrivingAAA.com
www.parkinson.org
Cancelations
When the city of Fort Wayne declares a “Level Two” emergency, Turnstone will close and all Parkinson’s Support Group activities will be cancelled until the emergency is lifted. This includes the monthly evening meeting, exercise, caregiver’s and speech classes.
In the event there is no “Level Two” emergency, but it is in everyone’s best interest to cancel the monthly evening meeting, the following media will be contacted:
• WOWO Radio – 1190 AM
• WANE-TV – Ch 15
• WPTA-TV – Ch 21
When Turnstone is open, exercise, caregiver’s and speech classes will meet, but you are urged to use your best judgment before you venture out into the weather.
A Note from Dan Spangler
In keeping with next month’s program from James Medical, I thought this article on the GaitAid device was timel
MediGait Announces: GaitAid Device for Parkinson's Disease Shows Significant Step-initiation Improvement in New Trial Study
PRWeb - Disorders of posture and gait are a major source of functional disability in individuals with Parkinson's Disease (PD). These problems often respond poorly to treatment with anti-parkinsonian medications as well as other interventions such as deep brain stimulation surgery.
The disturbance of gait initiation, referred to as start hesitation, is common in patients with Parkinson's disease and is linked with akinesia, or a lack of spontaneous movement and the prolonged time it takes to initiate a movement such as stepping.
The study by the department of Physical Therapy and Neurology at the Georgia Health Sciences University, published in the Dec. 2011 issue of the Journal of Novel Physiotherapies, included 47 patients with varying degree of Parkinson's disease. 21 patients were classified as moderately-severe while 26 were early stage not yet showing gait symptoms. The patients walked with a "closed-loop" cueing device called the GaitAid by MediGait.
Taken from the Feb 12 Northwest Parkinson’s Foundation newsletter
TIPS TO MAKE YOUR LIFE BETTER:
There’s No Place Like Home-------For Growing Old
Tips from the NATIONAL INSTITUTE ON AGING
"The stairs are getting so hard to climb."
"Since my wife died, I just open a can of soup for dinner."
"I've lived here 40 years. No other place will seem like home."
WHAT DO I DO FIRST?
Planning ahead us hard because you never know how your needs might change. But, the first step is to think about the kinds of help you might want in the future, Talk to your doctor about how these health problems could make it hard for someone to get around or take care of him-or-herself in the future. Help getting dressed in the morning, fixing a meal, or remembering to take medicine may be all you need to stay in your own home.
WHAT KINDS OF HELP CAN I GET?
You can get almost any type of help you want in your home--often for a cost. The following lost includes some common things people need. You can get more information on many of these services from your local Area Agency on Aging, local and state offices on aging or social services, or nearby senior center.
PERSONAL CARE: Is bathing, washing your hair, or dressing getting harder to do? Maybe a relative or friend could help. Or, you could hire a trained aide for a short time each day.
HOMEMAKING: Do you need help with chores like housecleaning, yard work, grocery shipping, or laundry? Some grocery stores and drug stores will take your order over the phone and bring the items to your home. There are cleaning services you can hire, or maybe someone you know has a housekeeper to suggest. Some housekeepers will help with laundry. And some drycleaners will pick up and deliver your clothes.
MEALS: Worried that you might not be eating nutritious meals or tired of eating alone? Sometimes you could share cooking with a friend or have a potluck dinner with a group of friends. Find out if meals are served at a nearby senior center, church, or synagogue. Eating out may give you a chance to visit with others. Also, meal delivery programs bring hot meals into your home.
MONEY MANAGEMENT: Do you worry about paying bills late or not at all? Are health insurance claim forms confusing? Maybe you can get help with these tasks. Ask a trusted relative to lend a hand. Volunteers, financial counselors, or geriatric care managers can also help. Just make sure you get the referral from a trustworthy source, like your local Area Agency on Aging. If you are familiar with computers, you could pay your bills online.
If you are signing up for Federal benefits for the first time, you must choose either electronic direct deposit or a special debit card. Go to www.godirect.org or call 1-800-333-1795, or stop by your bank, credit union, or Social Security Administration office to start the process.
Be careful to avoid money scams. NEVER give your Social Security number, credit card account numbers, or bank account numbers to someone on the phone (unless you place the call). Always check all bills, including utility bills, for charges you do not recognize. Even though you might not need it now, think about giving someone you trust permission to discuss your bills with creditors or your Social Security or Medicare benefits with those agencies. Or, you could give overall permission to handle a variety of legal matters for you in the form of a durable power of attorney.
"Durable" means the permission remains in effect if you cannot make decisions yourself, but you can change the power of attorney or cancel it at any time.
HEALTH CARE: Do you forget to take your medicines? There are devices available to remind you when it is time for your next does. Special pill boxes allow you or someone else to set out your pills for an entire week. Have you just gotten out of the hospital and still need nursing care at home for a short time? The hospital discharge planner can help you make arrangements, and Medicare might pay for a home health aide to your home.
If you can't remember what the doctor told you to do, try to have someone go to your doctor visits with you. Ask them to write down everything you are to do, or if you area by yourself, ask the doctor to put all recommendations in writing.
PRODUCTS TO MAKE LIFE EASIER: Is it getting harder to turn a door knob or put on your socks? Devices are available to make activities you do during the day easier, The Department of Education's website, www.abledata.com, has information on more than 30,000 assistive-technology products designed to make it easier for people to do things for themselves. If you can't use a computer call 1-800- 227-0216 to learn more.
GETTING AROUND---AT HOME AND IN TOWN: Are you having trouble walking? Perhaps a walker would help. If you need more, think about getting an electric chair or scooter. These are sometimes covered by Medicare.
SAFETY: Are you worried about crime in your neighborhood, physical abuse, or losing money as a result of a scam? Talk to the staff at your local Area Agency on Aging. Do you live alone, and are you afraid of becoming sick with no one to help? You might want to get an emergency alert system. You just push a special button that you wear, and emergency medical personnel are called. A monthly fee is charged.
HOUSING: Would a few changes make your home easier and safer to live in? Think about things like a ramp at the front door, grab bars in the tub or shower, non-skid floors, more comfortable handles on doors or faucets, and better insulation. Sound expensive? You might be able to get help paying for these changes. Check with your local or State Area Agency on Aging, State housing finance agency, welfare department, community development groups, or the Federal Government.
ELDERCARE LOCATOR PROGRAM: Through the Eldercare Locator, the Administration on Aging provides information on many different services in older people. The Eldercare Locater can give you the number of your local Area Agency on Aging. To use this service call 1-800-677-1116, or go to www.eldercare.gov on the internet.
HOW MUCH WILL THIS COST? An important part of planning is thinking about how you are going to pay for the help you need. Some things you want may cost a lot. Others may be free. Some may be covered by Medicare, private insurance, Medicaid, or long-term care insurance. Some may not. Check with your insurance provider(s). There is a chance that paying for just a few services out of pocket could cost less in the long run than moving into an independent living, assisted living, of long term care facility. And you will still have your wish of still living on your own.
Once you have thought about which services you will need, you can find out about Federal, State, and local government benefits at www.govbenefits.gov. If you can't get to a computer. Call 1-800-333-4636 for the same kind of help.
Are you eligible for veteran’s benefits from the Department of Veterans Affairs? The VA sometimes provides medical care in your home. In some areas they also offer homemaker/home health aide services, adult day health care, and hospice. You can learn more by going to www.va.gov or calling the VA Health Care Benefits number at 1-877-222-8387 or contacting the VA medical center nearest you.
Ed's note: The key concept in this article is to PLAN AHEAD. Father Time is no respecter of individuals or couples, and he has a tendency to sneak up on the unsuspecting. Many of us could benefit by taking a good look at our own situation.
If you have ideas to share with our readers on this general topic, or others, please submit them to Ed Gatke. Today's TIPS are courtesy of the National Institute On Aging
CAREGIVERS' CORNER—
Maintaining Emotional Intimacy When Your Loved One IS Ill
In our culture, when we discuss intimacy, many people think immediately of sexuality. While sex may be a part of an intimate relationship, it in no way encompasses it. When we think of intimacy as only sex it makes it difficult to focus on the other really satisfying parts of human relationships.
Development of truly intimate relationships is difficult during times of good health and general well
being. When someone is chronically or terminally ill, and is being provided physical care, they can
find it very difficult to ask to have their emotional needs met also. Caregivers are often overwhelmed and may have difficulties verbalizing their own emotional and physical needs. There may be feelings of guilt and shame attached to having any physical or emotional needs.
The primary concern of caregivers remains how to keep their relationship with their loved one at a level that provides emotional intimacy. In counseling sessions we advise our clients to remember the 3 A's:
ACKNOWLEDGEMENT
Good communication is the key to acknowledging your loved one. Remember, in order to communicate effectively you need to: accept your differences, listen to each other’s opinions, and not close the door on painful subjects--including the wants and desires of the caregiver. If your loved one is terminally ill, they may want to discuss their feelings about death. We would encourage you, as the caregiver, to be prepared for the inevitable and invite discussion whenever possible. As the caregiver, acknowledge the person's feelings--be supportive of their view of the
situation. Be careful not to take the attitude that "I know what is best" or, "Do what I say."
ATTENTION
Paying attention to someone involves a lot more than monitoring his or her physical wellbeing. You can let a person know that you are paying attention by listening attentively, making good eye contact and by being aware of "non-verbal" communication, including how the person holds their body, tension, and lack of eye contact.
AFFECTION
Emotional intimacy can be maintained through the simplest of physical gestures. A kiss on the cheek or forehead, coupled with a warm smile, a back rub, brushing the patient's hair, or just saying "I love you". In an intimate relationship, both parties have to maintain a balance between closeness and separateness. This allows people to maintain their individuality and a sense of intimacy. The caregiver and patient can sustain a quality of intimacy similar to what they had prior to the illness. Having a healthy respect for the situation "the other finds themselves in" is crucial to all relationships!
As the caregiver, you have emotional needs that your loved one cannot always meet due to their illness. You need to recognize that having your own needs does not take away from the wonderful relationship you have had or may still have with your loved one. They are a sign of your own "humanness". Care-givers need to maintain a network of outside support by keeping relationships with family members and friends who can provide the acknowledgement, attention and affection that is still needed and well deserved. Taking care of these emotional needs will allow you to be focused on your loved one with a relaxed, positive, loving attitude.
By: Rose M. Schreiber of TODAY'S CAREGIVER
A New Study for Cognitive Abilities
Indiana Department of Speech and Hearing Sciences is conducting research and looking for participants.
PURPOSE – Understand and describe the relationship between cognitive abilities like memory, reasoning, and reading comprehension in adults with Parkinson's
PARTICIPANTS NEEDED – Adults who have been diagnosed with Parkinson's, who have neither suffered any brain damage, nor have been diagnosed with a neurological disease, can see and hear fairly well, and are native speakers of English.
STUDY PARTICIPATION INVOLVES – 3 to 4 hours of participation spread across two sessions.
Completing short language, memory, and problem solving tasks that include speaking, listening, reading, and writing.
BENEFITS INCLUDE – Information concerning participant's current cognitive and communicative skills. When applicable, suggestions to help participants compensated for cognitive or communicative problems.
It is possible if we get enough participants, the researchers will come to Fort Wayne to conduct their research. If you have further questions contact: Stefanie Rutledge at (812)855-0666 or srrutled@indiana.edu
We will be asking for participants after the first of the year so we can participate in the spring of 2012.
Parkinson’s Disease Expert Briefings
THE Parkinson’s Disease Foundation announces its newest series of PD ExpertBriefings, free interactive educational seminars designed for people living with Parkinson’s, family members, and healthcare professionals. The seminars are available by telephone or on line and run through June 2012.
To join a PDExpertBriefing call (800) 457-6676, visit www.pdf.org, or email info@pdf.org. Pre-registration is recommended. Telephone participants will receive an event-specific telephone number which differs from the one above.
ExpertBriefings Schedule
A Closer Look at Anxiety and Depression in Parkinson’s
Tuesday, March 6, 2012, 1:00 – 2:00 PM EST
Faculty: Laura Marsh, MD
Michael DeBakey Veterans Affairs Medical Center and Baylor College of Medicine, Houston, TX
Parkinson’s Medications Today and Tomorrow
Tuesday, April 17, 2012, 1:00 – 2:00 PM EST
Faculty: Cynthia L. Comella, MD, FAAN
Rush University Medical Center, Chicago, IL
Understanding the Progression in Parkinson’s
Tuesday, June 26, 2011, 1:00 – 2:00 PM EST
Faculty: Ronald F. Pfeiffer, MD
University of Tennessee Health Science Center, Memphis ,TN
This series has been made possible by an educational grant from Teva Neuroscience. The article isd reprinted from the October 2011 issue of the Central Ohio Parkinson’s News.
Participants Needed for PD Study on Exercise
Participants with Parkinson's disease are needed for a research study at the University of Indianapolis (Krannert School of Physical Therapy). The study is investigating long-term changes in hand strength, mobility, balance, and quality of life in persons with Parkinson's disease who exercise, and those who do not exercise. The study will help us to better understand the effects of exercise on the progression of Parkinson's disease. You must be able to travel to the University of Indianapolis for research sessions over a span of two years. Contact Dr. Stephanie Combs, PT, Phd, NCS, 317-788-3523. or email at scombs@uindy.edu if you are interested.
New Image Scan Helps Correctly Identify
Parkinson's Disease
wisn.com - New medical advancements are making tests for Parkinson's disease more reliable.
More than one million Americans are currently living with Parkinson's. The condition causes tremors, balance problems and speech issues.
Doctors often use physical examines to test for it, but 40 percent of Parkinson's patients are undiagnosed, and at least 10 percent who are diagnosed don't really have it.
A new image test called DaTscan is giving doctors a better chance of getting it right.
Doctors inject patients with a tracer then scan the brain for dopamine -- a chemical that Parkinson's patients lack.
"This is a game-changer. It's going to lead to earlier diagnosis and clearer diagnosis for patients with tremor," said Dr. Louise Thomson of Cedars-Sinai Medical Center.
An earlier diagnosis means patients can start treatments sooner and potentially slow down symptom development.
There is some debate about the effectiveness of DaTscan.
Some doctors said a negative test does not provide enough evidence to rule out Parkinson's completely.
Taken from the northwest Parkinson’s foundation newsletter
IPhone Application May Help Monitor Parkinson's Disease
Researchers at the Georgia Tech Research Institute (GTRI) have developed a novel iPhone application that may enable persons with Parkinson's disease and certain other neurological conditions to use the ubiquitous devices to collect data on hand and arm tremors and relay the
results to medical personnel.
The researchers believe the application could replace subjective tests now used to assess the severity of tremors, while potentially allowing more frequent patient monitoring without costly visits to medical facilities.
The program - known as iTrem - could be offered later this year by the App Store, an Apple Inc. website that sells iPhone applications. But iTrem will first undergo a clinical study at Emory University and must receive any required approvals from the Food and Drug Administration.
"We expect iTrem to be a very useful tool for patients and their caregivers," said Brian Parise, a research scientist who is principal investigator for the project along with Robert Delano, another GTRI research scientist. "And as a downloadable application, it also promises to be convenient and cost-effective."
iTrem utilizes the iPhone's built-in accelerometer to collect data on a patient in his or her home or office. The application directly tracks tremor information currently, and in the future will use simple puzzle games to record tremor data, which will then be processed and transmitted.
The researchers expect the clinical trial to show that data gathered by the program would allow physicians to remotely monitor the degree of disability, progression and medication response among patients with tremor-related conditions. In addition, iTrem offers a social component that allows people to share stories, pictures and data.
The program known as iTrem could be offered later this year by the App Store, an Apple Inc. website that sells iPhone applications. But iTrem will first undergo a clinical study at Emory University and must receive any required approvals from the Food and Drug Administration.
"We expect iTrem to be a very useful tool for patients and their caregivers," said Brian Parise, a research scientist who is principal investigator for the project along with Robert Delano, another GTRI research scientist. "And as a downloadable application, it also promises to be convenient and cost-effective."
iTrem utilizes the iPhone's built-in accelerometer to collect data on a patient in his or her home or office. The application directly tracks tremor information currently, and in the future will use simple puzzle games to record tremor data, which will then be processed and transmitted.
The researchers expect the clinical trial to show that data gathered by the program would allow physicians to remotely monitor the degree of disability, progression and medication response among patients with tremor-related conditions. In addition, iTrem offers a social component that allows people to share stories, pictures and data.
iTrem's developers are working with the Advanced Technology Development Center (ATDC) to form a startup company based on iTrem and future applications that might take advantage of iPhone capabilities. ATDC is a startup accelerator based at Georgia Tech that helps Georgia entrepreneurs launch and build successful technology companies.
The GTRI team plans ongoing development of iTrem's interface, based on responses from doctors and patients. They're also investigating other consumer technologies with diagnostic potential, including the tiny gyroscopes now available in some cellular phones.
Future developments will include the addition of several other Parkinson's related tests and investigation of gait analysis in a joint effort with the University of South Florida and the James A. Haley Veterans' Hospital in Tampa, Fla. Additional developments may utilize the phone for detecting and analyzing dyskinesia, a movement disorder.
More than 10 million people in the U.S. have tremor-related disease, including Parkinson's, essential tremor and multiple sclerosis, Delano said. Data collected by iTrem could enhance research on tremor disorders, in addition to supporting treatment for current patients, he added.
Most current measurement techniques used by doctors are subjective and are performed infrequently, Delano said. Complex diagnostic procedures such as electroencephalography and electromyography are objective and thorough, but are rarely performed because they're lengthy, expensive and require a clinical setting. The result is that little data about tremor has been available to track the effectiveness of medication and therapy over time.
By contrast, he said, the ease of gathering tremor data with iTrem could help lead to a significant expansion of research in this area, as a wealth of objective data is collected and analyzed.
"Even factoring in the cost of an iPhone, using iTrem is likely to be more convenient and less expensive for patients than office visits, and the data are accurate and abundant," Delano said.
A clinical study involving iTrem use is expected to start soon at Emory University's Movement Disorder Clinic. The study will be led by Dr. Stewart Factor, a researcher in the field of Parkinson's disease at the Emory School of Medicine.
The GTRI development team presented a paper on iTrem in January at the 2011 International Conference on Health Informatics.
Delano explained that the development of iTrem was linked to his own diagnosis with Parkinson's disease several years ago. He eventually became frustrated with the subjective approaches commonplace in the characterizing of patient tremor symptoms.
"Currently, doctors observe tremor during office visits and rate it on a subjective scale of zero to four. That approach seemed outdated to me, considering all the technology now available," Delano said. "My wife Heather, who's an engineer, remarked that maybe that we could try putting some accelerometers on my arm. That made me think of the accelerometer in the iPhone and here we are."
Source: Georgia Institute of Technology
taken from medicalnewstoday.com
December 2011
Dec. - NO MEETING. Celebrate the Christmas season with family and friends.
Jan. 19 - Caring and Sharing Concurrent Sessions.
Feb. 16 - Amy Stir, OT and Driver Rehabilitation Specialist with the Fort Wayne Rehabilitation Hospital will present the program "The Older Driver", and will show us ways to determine when and if it’s time to relinquish our driving privileges.
November Meeting
Thank you Dr. Lynn Stafford, Podiatrist from Aboite Podiatry Associates. In addition to brief reminders on Parkinson’s disease causes and symptoms, she really stressed how important exercise is… and she repeated this mantra several times.
Dr. Stafford stressed “high impact” repetitive motion exercises and stretching. She mentioned that postural instability is a major problem leading to hip fractures (the No. 1 cause of death in seniors), and the way to help is by strengthening your core muscles: ie your stomach or gut muscles. She also encouraged us to walk, walk, and walk.
She talked about the need to avoid dehydration by consuming lots of liquids and used the phrase “The solution to pollution is dilution”. In other words water, water, water. We heard how postural instability leads to “toe grabbing” for balance but that it really leads to more instability. There is orthotics to correct this. She also cautioned that going barefoot for extended periods of time is not good for your feet.
It is difficult to find shoe stores that fit shoes for you. If you don’t buy shoes at these establishments, make sure your shoes fit!!! Place your foot “on”, not “In”, your shoe. Can you see the sides of the shoe under your foot? Also do you have an index finger’s distance between your longest toe and the front of your shoe? If so your shoes fit. Also don’t buy the Sketchers rocker type shoes. They affect your postural stability and are not good for you.
Dystonia caused your big toe to elevate because of muscle contractions. If this describes your feet, see a podiatrist.
What is Edema? This is when your body doesn’t pump fluids through your body and your feet swell. This stretches the skin and can cause ulcerated skin. You can help this by over the calf compression socks.
Other thoughts from Dr. Stafford:
Podiatrists can help you learn to stabilize your posture
Custom orthotics may be what you need
Bunions are genetic
The percentage of falls doubles if you have Parkinson’s
Keep your cell phone with your at all times, especially when you walk
Buy shoes late in the day when your feet are the most swollen
Velcro straps are ok, but tie shoes are best
Dr. Stafford recommended:
Physical therapy for strength
Hand rails for navigating stairs
Exaggerated foot movement when walking
Take large steps, not short choppy ones
When walking put heel down first then the ball of your foot, then your big toe
Water aerobics are great because of the resistance water provides
Take up all throw rugs
Find a hobby to keep you active and moving
She then again challenged us to do more exercise. Be creative she said, there are no excuses.
What is Neuropathy? Dr. Stafford said it was nerve dysfunction caused by vitamin deficiency: B1, B5, B6, B12, etc. It is a progressive condition. You can’t feel heat, cold, pain, etc. If you think you have it call a podiatrist.
She shared that Medicare, Medicaid coverage is tricky, and you should check with them, and/or your doctor, to see about coverage.
Lastly, she warned about using some of the meds because of the potential side effects.
Thanks again to Dr. Stafford for a very informative talk!
The FDA soon may give the green light to Duodopa, a treatment which has been successfully used in Europe for several years to reduce motor fluctuations and dyskinesias in advanced Parkinson’s disease. The treatment requires an external pump attached to a gastric tube to continuously deliver small amounts of this gel formulation of carbidopa/levodopa directly into the part of the intestine where levodopa is absorbed. (Duodenum)
Researchers have been investigating the continuous infusion of levodopa for more than 30 years. Technical difficulties, however, made this approach impractical until recently, when the intestinal gel became available in a concentrated form and a pump was found that could continuously deliver precise quantities.
Although considered a safe treatment, there is the risk of infection or a displaced or broken gastric tube which must be corrected by a minor surgical procedure. Also the side effects of the intestinal gel are similar to those of the oral formulation of I-dopa (ie: dyskinesias, sedation, and confusion).
“The potential upside is far greater than the downside for patients who find it difficult to maintain good motor function,” said Dr. Michael Rezak APDA Midwest Chapter’s Medical Director. “The levodopa intestinal gel may be an alternative for those who could benefit from deep brain stimulation but are otherwise prevented from pursuing it”. *Reprinted from the Midwest APDA Chapter News - November 2011
In the event there is no “Level Two” emergency, but it is in everyone’s best interest to cancel the monthly evening meeting, the following media will be contacted:
• WOWO Radio – 1190 AM
• WANE-TV – Ch 15
• WPTA-TV – Ch 21
When Turnstone is open, exercise, caregiver’s and speech classes will meet, but you are urged to use your best judgment before you venture out into the weather.
From the National Parkinson Foundation...Facts about sexual dysfunction.
Sexual dysfunction (SD) in Parkinson Disease (PD) is common, affecting men more often than women. It remains under appreciated as patients, spouses and health care providers may not be comfortable with a frank discussion of sex.
Many factors contribute to good sexual health, and it stands to reason that the combination of aging, general physical decline associated with PD, and other medical conditions will undermine sexual interest and performance. In PD, SD may arise as a primary symptom. In addition, physical immobility bed, sleep disturbances, depression and disturbances in thinking can impact sexual desire in men and women.
PD itself may cause SD itself as a result of the loss of dopamine, the principal neurochemical mediator of reward and pleasure in the brain.
Sexual health should be as much a part of the conversation between the person with PD and his or her health care team as any other matter.
Various medications, including antihistamines, antidepressants, benzodiazepines, and drugs for high blood pressure and excessive alcohol or tobacco use can also contribute to SD. Fortunately, most anti-PD drugs are not associated with impotency or loss of libido, with the exceptions of the anticholinergic.
To the contrary, the dopamine agonists have been associated with disorders of impulse control such as:
· Uncontrolled gambling
· Uncontrolled shopping
· Uncontrolled eating
· Obsessive compulsive tendencies such as cleaning and organizing
· Hyper sexuality
· Patients with PD who are taking dopamine agonists and have developed hyper sexuality should discuss it with their neurologist. Usually decreasing the dose or complete discontinuation of dopamine agonists resolves the problem of impulse control.
While everyone is enjoying the hustle and bustle and the joy of the holiday season, there are many caregivers out there who just want the whole thing to end. Caregiving creates a level of stress unmatched by most endeavors. Add to that the extra stress of family gatherings, gift buying, cooking, and other obligations, and it is almost unbearable. How can caregivers better cope with this stress on top of stress?
The following tips may help you weather the holidays much better.
1. Start your own tradition. Often we feel bound by past holiday traditions, but it doesn't have to be that way. Instead of having 20 family members and guests in your home, and cooking for all of them, try a different approach. Suggest that someone else host "the event"/holiday. Or ,if your home is the only appropriate one, enlist the help of friends and relatives for everything from cleaning to preparing food. A potluck is a great idea--you can even assign specific dishes to ensure that a complete dinner is provided.
2. There are great ways to shop non-traditionally as well. The Internet is a fantastic way to shop for food and gifts without leaving home. Another way to shop from home is using catalogs (many people feel uncomfortable about putting credit card numbers out in cyberspace.) If you would rather go out, use the catalogs to make lists of specific gifts for each person. That way you know exactly where to go and exactly what to get.
3. Make sure you leave enough time to enjoy the holidays. It shouldn't be all about the hustle and bustle.
4. The motto "Everything in moderation" should be your guide through the holidays. There are many temptations abundant throughout the season--- alcohol, sweets, and rich food. Go ahead. Have some! Just don't over-indulge. It may make you sick or uncomfortable even through the following day.
5. Be prepared for unexpected circumstances. Something may come up, and probably will, so what can you do? If you can, change the situation. If you can't, accept it and move on. You cannot control life no matter how planned out you believe you have things. LAUGH a lot......
6. Try to keep up on your regular exercise routine, or start one, during the holidays. Walking 5 times a week is a great way to stay in shape. There is also something about pounding the pavement that helps release frustrations and clears your head. If you're looking out your window and the snow is flurrying and drifting, find an alternative. Many health clubs have indoor tracks. If that doesn't appeal to you, check with the nearest shopping mall. Some open early just for walkers.
7. Ideally caregivers SHOULD have a daily, weekly, monthly, and yearly/annual break.
DAILY: Half an hour of yoga, meditation, needlepoint, reading, etc.
WEEKLY: A couple of hours spent away from the house at the mall, library, coffeehouse, etc.
MONTHLY: An evening out with your friends, a play, a concert, etc.
ANNUAL: A well-planned (and well-deserved) vacation.
Planning ahead for these breaks is IMPERATIVE! You may need to arrange for respite care for your loved one. It can be done. You can care for your loved one, attend to your daily activities, AND enjoy the holidays. We all do what we can, and nobody should expect more than that from us. Especially us!
Happy Holidays!
From: Caregivers Newsletter
Indiana Department of Speech and Hearing Sciences is conducting research and looking for participants.
PURPOSE
Understand and describe the relationship between cognitive abilities like memory, reasoning, and reading comprehension in adults with Parkinson's
PARTICIPANTS NEEDED
Adults who have been diagnosed with Parkinson's, who have neither suffered any brain damage, nor have been diagnosed with a neurological disease, can see and hear fairly well, and are native speakers of English.
STUDY PARTICIPATION INVOLVES
3 to 4 hours of participation spread across two sessions.
Completing short language, memory, and problem solving tasks that include speaking, listening, reading, and writing.
BENEFITS INCLUDE
Information concerning participant's current cognitive and communicative skills. When applicable, suggestions to help participants compensated for cognitive or communicative problems.
It is possible if we get enough participants, the researchers will come to Fort Wayne to conduct their research. If you have further questions contact: Stefanie Rutledge at (812)855-0666 or srrutled@indiana.edu
We will be asking for participants after the first of the year so we can participate in the spring of 2012.
Suncoast Neuroscience in St. Pete is looking for volunteers for a clinical trial of a new drug to treat Parkinson's Disease Psychosis. There currently is not a good medication for treating the various hallucinations, delusions and related "side effects" of Parkinson's disease. The common drug that is currently prescribed is seroquel. Its use for hallucinations in Parkinson's and for people with dementia is off label, but it is the best that is currently available. The clinical trial is for a medication that has had some early success treating these symptoms. The contact person is Lori A. Banctel, 727-824-7135 lbanctel@suncoastmed.com .
submitted by Pat
THE Parkinson’s Disease Foundation announces its newest series of PD ExpertBriefings, free interactive educational seminars designed for people living with Parkinson’s, family members, and healthcare professionals. The seminars are available by telephone or on line and run through June 2012.
To join a PDExpertBriefing call (800) 457-6676, visit www.pdf.org, or email info@pdf.org. Pre-registration is recommended. Telephone participants will receive an event-specific telephone number which differs from the one above.
ExpertBriefings Schedule
Driving and Parkinson’s: Balancing Independence and Safety
Tuesday, January 31, 2012, 1:00 – 2:00 PM EST
Faculty: Margaret O’Connor, PhD, ABPP, and Lisa Robins Kapust, LCSW
Beth Israel Deaconess Medical Center, Boston, MA
A Closer Look at Anxiety and Depression in Parkinson’s
Tuesday, March 6, 2012, 1:00 – 2:00 PM EST
Faculty: Laura Marsh, MD
Michael DeBakey Veterans Affairs Medical Center and Baylor College of Medicine, Houston, TX
Parkinson’s Medications Today and Tomorrow
Tuesday, April 17, 2012, 1:00 – 2:00 PM EST
Faculty: Cynthia L. Comella, MD, FAAN
Rush University Medical Center, Chicago, IL
Understanding the Progression in Parkinson’s
Tuesday, June 26, 2011, 1:00 – 2:00 PM EST
Faculty: Ronald F. Pfeiffer, MD
University of Tennessee Health Science Center, Memphis ,TN
This series has been made possible by an educational grant from Teva Neuroscience. The article isd reprinted from the October 2011 issue of the Central Ohio Parkinson’s News.
A Turnstone Center Opportunity
Substitute teachers are needed for Turnstone's Kimbrough Early Learning Center. You would assist staff in the classroom with lessons, food service, nap time routines, and any other activities that goes on in the classroom. (no changing diapers) Children range in age from 2-12. If you are interested contact Adrianne Lyon at 483-2100 x235. She can answer any questions you may have and fill in additional details and requirements
Participants with Parkinson's disease are needed for a research study at the University of Indianapolis (Krannert School of Physical Therapy). The study is investigating long-term changes in hand strength, mobility, balance, and quality of life in persons with Parkinson's disease who exercise, and those who do not exercise. The study will help us to better understand the effects of exercise on the progression of Parkinson's disease. You must be able to travel to the University of Indianapolis
for research sessions over a span of two years. Contact Dr. Stephanie Combs, PT, Phd, NCS, 317-788-3523. or email at scombs@uindy.edu if you are interested.
What role does exercise play in the management of PD?
Exercise is an important part of healthy living for everyone. However, for people with PD exercise is not only healthy, but a vital component to maintaining balance, mobility and daily living activities. NPF is studying exercise in the Quality Improvement Initiative. Every center agrees that they believe exercise is important to good outcomes in PD, and the data supports that. Doing exercise is associated with a better sense of well-being, even across stages and severity of the disease. This was expected: there is a growing consensus amongst researchers about the short- and long-term benefits of exercise for people with PD.
Exercise can benefit in two ways:
1. Symptom management. Research has shown that exercise can improve gait, balance, tremor, flexibility, grip strength and motor coordination. Exercise such as treadmill training and biking have all been shown to benefit, as has tai chi and yoga (although more studies are needed).
2. Possibly slowing disease progression. There is a strong consensus among physicians and physical therapists that improved mobility decreases the risk of falls and some other complications of Parkinson’s. They agree that practicing movement—physical therapy, occupational therapy, and participating in an exercise program—improves mobility. By avoiding complications, you can avoid some of the things that can make PD worse. Beyond this, we know that people who exercise intensely, for example by doing things like running or riding a bicycle, have fewer changes in their brains caused by aging. Studies in animals suggest that Parkinson’s disease is also improved by exercise. Many neurologists in the NPF Center of Excellence network recommend intense exercise to their patients and also to people who are worried about getting PD because of a family connection. One neurologist told us that he tells people with a relative who has PD to exercise 300 minutes a week, with at least half of it intense running or bike riding.
How can I benefit from exercise?
· The best way to achieve these benefits is to exercise on a consistent basis. People with Parkinson's enrolled in exercise programs with durations longer than six months, regardless of exercise intensity, have shown significant gains in functional balance and mobility as compared to programs of only two-week or ten-week durations.
· However, when it comes to exercise and PD, greater intensity equals greater benefits. Experts recommend that people with Parkinson's, particularly young onset or those in the early stages, exercise with intensity for as long as possible as often as possible. Your doctor might recommend an hour a day three or four times a week, but most researchers think that the more you do, the more you benefit.
· Intense exercise is exercise that raises your heart rate and makes you breathe heavily. Studies have focused on running and bicycle riding, but experts feel that other intense exercise should provide the same benefit.
· Regardless of your condition, you should always warm up and cool down properly, exercise in a way that is safe for you, and know your limits. There are many support groups, therapists, and exercise programs who can help with PD-safe exercise and help you to set up your own program if that’s what works best for you. Be sure to consult your physician. If your physician is not a PD expert, you can call the NPF helpline (1-800-4PD-INFO) to help you to explain to your physician the importance of exercise so that you and your doctor can put together a plan that will work for you.
How does exercise change the brain?
What happens in the brain to produce these visible benefits? Researchers at the University of Southern California (Fisher et al.) looked at the brains of the mice that had exercised under conditions parallel to a human treadmill study. They found that:
· Exercising changed neither the amount of dopamine nor the amount of neurons in the animals’ brains.
· But in the ones that had exercised, the brain cells were using dopamine more efficiently.
· They also found that exercise improves that efficiency by modifying the areas of the brain where dopamine signals are received — the substantia nigra and basal ganglia.
Scientists at University of Pittsburgh found that in animal models, exercise induces and increases the beneficial neurotrophic factors, particularly GDNF (glial-derived neurotrophic factor), which reduces the vulnerability of dopamine neurons to damage.
At the molecular level, at least two things are happening to make dopamine use more efficient:
1. Dopamine travels across a space between two adjacent brain cells called a synapse. This process is called signaling and it is essential for normal functioning. To end the signal, a protein complex called the dopamine transporter normally retrieves dopamine from the synapse. The first thing Fisher et al. found is that animals that had exercised possessed less of the dopamine transporter, meaning that dopamine stayed in their synapses longer, and their dopamine signals lasted longer.
2. Secondly, they found that the cells receiving the dopamine signal had more places for the dopamine to bind in animals that exercised, and so could receive a stronger signal. This binding site is called the D2 receptor.
3. They also studied the D2 receptor in a subset of the human subjects who were within one year of diagnosis and not on any medications, using the imaging technique known as positron emission tomography(PET). They found that in humans, too, exercise increased the number of D2 receptors.
What kinds of exercise are helpful for people with PD?
· Any exercise will be beneficial. Be sure to check out the tip sheet on exercises specifically helpful for people with PD.
· It is important to consult with your physician and, if available, a physical therapist that understands PD, but anything you do without injuring yourself will provide a benefit.
· Formal exercise programs balance several different fitness criteria: strength, balance and coordination, flexibility, and endurance.
· Each of these areas has been demonstrated to provide a benefit to people with PD, and none should be ignored. Achieving a balance that works for you and that engages you in a program that you can keep start, maintain, and, hopefully, expand upon is the goal.
Many programs target the rapid gains that can be achieved through a focus on improvements in functional capacity and mobility. These programs vary according component activities. Examples of exercise programs for people with PD include:
· Intensive sports training
· Treadmill training with body weight support
· Resistance training
· Aerobic exercise
· Alternative forms of exercise (Yoga)
· Home-based exercise (workout tapes)
· Practice of movement strategies
Working with a Partner
· Many people find that they achieve the most success when they work with a partner.
· Depending on the stage of the disease, it may be best for people with PD to train in an environment where there are others around, who could offer help if needed.
· Beyond this, partners can help to motivate and engage each other in their exercise.
· People new to exercise programs are generally best off working with an individual or group training leader; for people whose mobility is significantly affected by PD, a physical therapist may be the best choice for helping to start a program.
Should exercise be done well before major motor symptoms of PD occur?
YES! Everyone should exercise more, whether they have PD or not.
· In PD, a special kind of neuron—brain cells—that produces the chemical transmitter dopamine gets damaged and lost.
· However, there is a lag between the time when the loss of neurons begins and the time when Parkinson’s motor symptoms start to show.
· In fact, by the time most people are diagnosed, as much as 40-60 percent of their dopamine neurons are already gone.
· The reason that people with Parkinson’s don’t experience symptoms until they reach this point is that the brain can compensate for the loss of dopamine neurons by gradually changing to adapt to the situation.
· In fact, the brain reshapes itself throughout life in response to experience. Scientists call this ability to change and compensate experience-dependent neuroplasticity.
taken from the www.parkinson.org
Turnstone is a special place, with special people, helping special people. In your own way, if you want to be a part of all of this, visit www.turnstone.org for more details about all we have mentioned. Turnstone helps FWPSG, so get involved in helping Turnstone.
There are two sessions per week. ($6.00 for one session or $10 for both) Mondays and Wednesdays from 9:30 to10:15 a.m. at theTurnstone Auditorium, 3320 N Clinton in Ft Wayne.
Peg Maginn, Speech Pathologist, is instructor. (260-483-2100)(260-483-2100, Ex.229) The class addresses speech, voice, swallowing, and cognitive thinking.
Jan. 19 - Caring and Sharing Concurrent Sessions.
Feb. 16 - Amy Stir, OT and Driver Rehabilitation Specialist with the Fort Wayne Rehabilitation Hospital will present the program "The Older Driver", and will show us ways to determine when and if it’s time to relinquish our driving privileges.
November Meeting
Thank you Dr. Lynn Stafford, Podiatrist from Aboite Podiatry Associates. In addition to brief reminders on Parkinson’s disease causes and symptoms, she really stressed how important exercise is… and she repeated this mantra several times.
Dr. Stafford stressed “high impact” repetitive motion exercises and stretching. She mentioned that postural instability is a major problem leading to hip fractures (the No. 1 cause of death in seniors), and the way to help is by strengthening your core muscles: ie your stomach or gut muscles. She also encouraged us to walk, walk, and walk.
She talked about the need to avoid dehydration by consuming lots of liquids and used the phrase “The solution to pollution is dilution”. In other words water, water, water. We heard how postural instability leads to “toe grabbing” for balance but that it really leads to more instability. There is orthotics to correct this. She also cautioned that going barefoot for extended periods of time is not good for your feet.
It is difficult to find shoe stores that fit shoes for you. If you don’t buy shoes at these establishments, make sure your shoes fit!!! Place your foot “on”, not “In”, your shoe. Can you see the sides of the shoe under your foot? Also do you have an index finger’s distance between your longest toe and the front of your shoe? If so your shoes fit. Also don’t buy the Sketchers rocker type shoes. They affect your postural stability and are not good for you.
Dystonia caused your big toe to elevate because of muscle contractions. If this describes your feet, see a podiatrist.
What is Edema? This is when your body doesn’t pump fluids through your body and your feet swell. This stretches the skin and can cause ulcerated skin. You can help this by over the calf compression socks.
Other thoughts from Dr. Stafford:
Podiatrists can help you learn to stabilize your posture
Custom orthotics may be what you need
Bunions are genetic
The percentage of falls doubles if you have Parkinson’s
Keep your cell phone with your at all times, especially when you walk
Buy shoes late in the day when your feet are the most swollen
Velcro straps are ok, but tie shoes are best
Dr. Stafford recommended:
Physical therapy for strength
Hand rails for navigating stairs
Exaggerated foot movement when walking
Take large steps, not short choppy ones
When walking put heel down first then the ball of your foot, then your big toe
Water aerobics are great because of the resistance water provides
Take up all throw rugs
Find a hobby to keep you active and moving
She then again challenged us to do more exercise. Be creative she said, there are no excuses.
What is Neuropathy? Dr. Stafford said it was nerve dysfunction caused by vitamin deficiency: B1, B5, B6, B12, etc. It is a progressive condition. You can’t feel heat, cold, pain, etc. If you think you have it call a podiatrist.
She shared that Medicare, Medicaid coverage is tricky, and you should check with them, and/or your doctor, to see about coverage.
Lastly, she warned about using some of the meds because of the potential side effects.
Thanks again to Dr. Stafford for a very informative talk!
A NOTE FROM DAN SPANGLER
DRUG TO REDUCE DYSKINESIAS, MOTOR FLUXUATIONS NEARS APPROVAL.
DRUG TO REDUCE DYSKINESIAS, MOTOR FLUXUATIONS NEARS APPROVAL.
The FDA soon may give the green light to Duodopa, a treatment which has been successfully used in Europe for several years to reduce motor fluctuations and dyskinesias in advanced Parkinson’s disease. The treatment requires an external pump attached to a gastric tube to continuously deliver small amounts of this gel formulation of carbidopa/levodopa directly into the part of the intestine where levodopa is absorbed. (Duodenum)
Researchers have been investigating the continuous infusion of levodopa for more than 30 years. Technical difficulties, however, made this approach impractical until recently, when the intestinal gel became available in a concentrated form and a pump was found that could continuously deliver precise quantities.
Although considered a safe treatment, there is the risk of infection or a displaced or broken gastric tube which must be corrected by a minor surgical procedure. Also the side effects of the intestinal gel are similar to those of the oral formulation of I-dopa (ie: dyskinesias, sedation, and confusion).
“The potential upside is far greater than the downside for patients who find it difficult to maintain good motor function,” said Dr. Michael Rezak APDA Midwest Chapter’s Medical Director. “The levodopa intestinal gel may be an alternative for those who could benefit from deep brain stimulation but are otherwise prevented from pursuing it”. *Reprinted from the Midwest APDA Chapter News - November 2011
Cancelations
When the city of Fort Wayne declares a “Level Two” emergency, Turnstone will close and all Parkinson’s Support Group activities will be cancelled until the emergency is lifted. This includes the monthly evening meeting, exercise, caregiver’s and speech classes.In the event there is no “Level Two” emergency, but it is in everyone’s best interest to cancel the monthly evening meeting, the following media will be contacted:
• WOWO Radio – 1190 AM
• WANE-TV – Ch 15
• WPTA-TV – Ch 21
When Turnstone is open, exercise, caregiver’s and speech classes will meet, but you are urged to use your best judgment before you venture out into the weather.
CAREGIVERS CORNER by Ed Gatke
From the National Parkinson Foundation...Facts about sexual dysfunction.
Sexual dysfunction (SD) in Parkinson Disease (PD) is common, affecting men more often than women. It remains under appreciated as patients, spouses and health care providers may not be comfortable with a frank discussion of sex.
Many factors contribute to good sexual health, and it stands to reason that the combination of aging, general physical decline associated with PD, and other medical conditions will undermine sexual interest and performance. In PD, SD may arise as a primary symptom. In addition, physical immobility bed, sleep disturbances, depression and disturbances in thinking can impact sexual desire in men and women.
PD itself may cause SD itself as a result of the loss of dopamine, the principal neurochemical mediator of reward and pleasure in the brain.
Sexual health should be as much a part of the conversation between the person with PD and his or her health care team as any other matter.
Various medications, including antihistamines, antidepressants, benzodiazepines, and drugs for high blood pressure and excessive alcohol or tobacco use can also contribute to SD. Fortunately, most anti-PD drugs are not associated with impotency or loss of libido, with the exceptions of the anticholinergic.
To the contrary, the dopamine agonists have been associated with disorders of impulse control such as:
· Uncontrolled gambling
· Uncontrolled shopping
· Uncontrolled eating
· Obsessive compulsive tendencies such as cleaning and organizing
· Hyper sexuality
· Patients with PD who are taking dopamine agonists and have developed hyper sexuality should discuss it with their neurologist. Usually decreasing the dose or complete discontinuation of dopamine agonists resolves the problem of impulse control.
TIPS to Make Your Life Better By Ed Gatke
Holiday Stress and Caregiving
While everyone is enjoying the hustle and bustle and the joy of the holiday season, there are many caregivers out there who just want the whole thing to end. Caregiving creates a level of stress unmatched by most endeavors. Add to that the extra stress of family gatherings, gift buying, cooking, and other obligations, and it is almost unbearable. How can caregivers better cope with this stress on top of stress?
The following tips may help you weather the holidays much better.
1. Start your own tradition. Often we feel bound by past holiday traditions, but it doesn't have to be that way. Instead of having 20 family members and guests in your home, and cooking for all of them, try a different approach. Suggest that someone else host "the event"/holiday. Or ,if your home is the only appropriate one, enlist the help of friends and relatives for everything from cleaning to preparing food. A potluck is a great idea--you can even assign specific dishes to ensure that a complete dinner is provided.
2. There are great ways to shop non-traditionally as well. The Internet is a fantastic way to shop for food and gifts without leaving home. Another way to shop from home is using catalogs (many people feel uncomfortable about putting credit card numbers out in cyberspace.) If you would rather go out, use the catalogs to make lists of specific gifts for each person. That way you know exactly where to go and exactly what to get.
3. Make sure you leave enough time to enjoy the holidays. It shouldn't be all about the hustle and bustle.
4. The motto "Everything in moderation" should be your guide through the holidays. There are many temptations abundant throughout the season--- alcohol, sweets, and rich food. Go ahead. Have some! Just don't over-indulge. It may make you sick or uncomfortable even through the following day.
5. Be prepared for unexpected circumstances. Something may come up, and probably will, so what can you do? If you can, change the situation. If you can't, accept it and move on. You cannot control life no matter how planned out you believe you have things. LAUGH a lot......
6. Try to keep up on your regular exercise routine, or start one, during the holidays. Walking 5 times a week is a great way to stay in shape. There is also something about pounding the pavement that helps release frustrations and clears your head. If you're looking out your window and the snow is flurrying and drifting, find an alternative. Many health clubs have indoor tracks. If that doesn't appeal to you, check with the nearest shopping mall. Some open early just for walkers.
7. Ideally caregivers SHOULD have a daily, weekly, monthly, and yearly/annual break.
DAILY: Half an hour of yoga, meditation, needlepoint, reading, etc.
WEEKLY: A couple of hours spent away from the house at the mall, library, coffeehouse, etc.
MONTHLY: An evening out with your friends, a play, a concert, etc.
ANNUAL: A well-planned (and well-deserved) vacation.
Planning ahead for these breaks is IMPERATIVE! You may need to arrange for respite care for your loved one. It can be done. You can care for your loved one, attend to your daily activities, AND enjoy the holidays. We all do what we can, and nobody should expect more than that from us. Especially us!
Happy Holidays!
From: Caregivers Newsletter
A New Study is Coming Soon
Indiana Department of Speech and Hearing Sciences is conducting research and looking for participants.
PURPOSE
Understand and describe the relationship between cognitive abilities like memory, reasoning, and reading comprehension in adults with Parkinson's
PARTICIPANTS NEEDED
Adults who have been diagnosed with Parkinson's, who have neither suffered any brain damage, nor have been diagnosed with a neurological disease, can see and hear fairly well, and are native speakers of English.
STUDY PARTICIPATION INVOLVES
3 to 4 hours of participation spread across two sessions.
Completing short language, memory, and problem solving tasks that include speaking, listening, reading, and writing.
BENEFITS INCLUDE
Information concerning participant's current cognitive and communicative skills. When applicable, suggestions to help participants compensated for cognitive or communicative problems.
It is possible if we get enough participants, the researchers will come to Fort Wayne to conduct their research. If you have further questions contact: Stefanie Rutledge at (812)855-0666 or srrutled@indiana.edu
We will be asking for participants after the first of the year so we can participate in the spring of 2012.
Clinical Trial Opportunity
Suncoast Neuroscience in St. Pete is looking for volunteers for a clinical trial of a new drug to treat Parkinson's Disease Psychosis. There currently is not a good medication for treating the various hallucinations, delusions and related "side effects" of Parkinson's disease. The common drug that is currently prescribed is seroquel. Its use for hallucinations in Parkinson's and for people with dementia is off label, but it is the best that is currently available. The clinical trial is for a medication that has had some early success treating these symptoms. The contact person is Lori A. Banctel, 727-824-7135 lbanctel@suncoastmed.com .
submitted by Pat
Parkinson’s Disease Expert Briefings
THE Parkinson’s Disease Foundation announces its newest series of PD ExpertBriefings, free interactive educational seminars designed for people living with Parkinson’s, family members, and healthcare professionals. The seminars are available by telephone or on line and run through June 2012.
To join a PDExpertBriefing call (800) 457-6676, visit www.pdf.org, or email info@pdf.org. Pre-registration is recommended. Telephone participants will receive an event-specific telephone number which differs from the one above.
ExpertBriefings Schedule
Driving and Parkinson’s: Balancing Independence and Safety
Tuesday, January 31, 2012, 1:00 – 2:00 PM EST
Faculty: Margaret O’Connor, PhD, ABPP, and Lisa Robins Kapust, LCSW
Beth Israel Deaconess Medical Center, Boston, MA
A Closer Look at Anxiety and Depression in Parkinson’s
Tuesday, March 6, 2012, 1:00 – 2:00 PM EST
Faculty: Laura Marsh, MD
Michael DeBakey Veterans Affairs Medical Center and Baylor College of Medicine, Houston, TX
Parkinson’s Medications Today and Tomorrow
Tuesday, April 17, 2012, 1:00 – 2:00 PM EST
Faculty: Cynthia L. Comella, MD, FAAN
Rush University Medical Center, Chicago, IL
Understanding the Progression in Parkinson’s
Tuesday, June 26, 2011, 1:00 – 2:00 PM EST
Faculty: Ronald F. Pfeiffer, MD
University of Tennessee Health Science Center, Memphis ,TN
This series has been made possible by an educational grant from Teva Neuroscience. The article isd reprinted from the October 2011 issue of the Central Ohio Parkinson’s News.
A Turnstone Center Opportunity
Substitute teachers are needed for Turnstone's Kimbrough Early Learning Center. You would assist staff in the classroom with lessons, food service, nap time routines, and any other activities that goes on in the classroom. (no changing diapers) Children range in age from 2-12. If you are interested contact Adrianne Lyon at 483-2100 x235. She can answer any questions you may have and fill in additional details and requirements
Participants Needed for PD Study
Participants with Parkinson's disease are needed for a research study at the University of Indianapolis (Krannert School of Physical Therapy). The study is investigating long-term changes in hand strength, mobility, balance, and quality of life in persons with Parkinson's disease who exercise, and those who do not exercise. The study will help us to better understand the effects of exercise on the progression of Parkinson's disease. You must be able to travel to the University of Indianapolis
for research sessions over a span of two years. Contact Dr. Stephanie Combs, PT, Phd, NCS, 317-788-3523. or email at scombs@uindy.edu if you are interested.
Neuroprotective Benefits of Exercise
What role does exercise play in the management of PD?
Exercise is an important part of healthy living for everyone. However, for people with PD exercise is not only healthy, but a vital component to maintaining balance, mobility and daily living activities. NPF is studying exercise in the Quality Improvement Initiative. Every center agrees that they believe exercise is important to good outcomes in PD, and the data supports that. Doing exercise is associated with a better sense of well-being, even across stages and severity of the disease. This was expected: there is a growing consensus amongst researchers about the short- and long-term benefits of exercise for people with PD.
Exercise can benefit in two ways:
1. Symptom management. Research has shown that exercise can improve gait, balance, tremor, flexibility, grip strength and motor coordination. Exercise such as treadmill training and biking have all been shown to benefit, as has tai chi and yoga (although more studies are needed).
2. Possibly slowing disease progression. There is a strong consensus among physicians and physical therapists that improved mobility decreases the risk of falls and some other complications of Parkinson’s. They agree that practicing movement—physical therapy, occupational therapy, and participating in an exercise program—improves mobility. By avoiding complications, you can avoid some of the things that can make PD worse. Beyond this, we know that people who exercise intensely, for example by doing things like running or riding a bicycle, have fewer changes in their brains caused by aging. Studies in animals suggest that Parkinson’s disease is also improved by exercise. Many neurologists in the NPF Center of Excellence network recommend intense exercise to their patients and also to people who are worried about getting PD because of a family connection. One neurologist told us that he tells people with a relative who has PD to exercise 300 minutes a week, with at least half of it intense running or bike riding.
How can I benefit from exercise?
· The best way to achieve these benefits is to exercise on a consistent basis. People with Parkinson's enrolled in exercise programs with durations longer than six months, regardless of exercise intensity, have shown significant gains in functional balance and mobility as compared to programs of only two-week or ten-week durations.
· However, when it comes to exercise and PD, greater intensity equals greater benefits. Experts recommend that people with Parkinson's, particularly young onset or those in the early stages, exercise with intensity for as long as possible as often as possible. Your doctor might recommend an hour a day three or four times a week, but most researchers think that the more you do, the more you benefit.
· Intense exercise is exercise that raises your heart rate and makes you breathe heavily. Studies have focused on running and bicycle riding, but experts feel that other intense exercise should provide the same benefit.
· Regardless of your condition, you should always warm up and cool down properly, exercise in a way that is safe for you, and know your limits. There are many support groups, therapists, and exercise programs who can help with PD-safe exercise and help you to set up your own program if that’s what works best for you. Be sure to consult your physician. If your physician is not a PD expert, you can call the NPF helpline (1-800-4PD-INFO) to help you to explain to your physician the importance of exercise so that you and your doctor can put together a plan that will work for you.
How does exercise change the brain?
What happens in the brain to produce these visible benefits? Researchers at the University of Southern California (Fisher et al.) looked at the brains of the mice that had exercised under conditions parallel to a human treadmill study. They found that:
· Exercising changed neither the amount of dopamine nor the amount of neurons in the animals’ brains.
· But in the ones that had exercised, the brain cells were using dopamine more efficiently.
· They also found that exercise improves that efficiency by modifying the areas of the brain where dopamine signals are received — the substantia nigra and basal ganglia.
Scientists at University of Pittsburgh found that in animal models, exercise induces and increases the beneficial neurotrophic factors, particularly GDNF (glial-derived neurotrophic factor), which reduces the vulnerability of dopamine neurons to damage.
At the molecular level, at least two things are happening to make dopamine use more efficient:
1. Dopamine travels across a space between two adjacent brain cells called a synapse. This process is called signaling and it is essential for normal functioning. To end the signal, a protein complex called the dopamine transporter normally retrieves dopamine from the synapse. The first thing Fisher et al. found is that animals that had exercised possessed less of the dopamine transporter, meaning that dopamine stayed in their synapses longer, and their dopamine signals lasted longer.
2. Secondly, they found that the cells receiving the dopamine signal had more places for the dopamine to bind in animals that exercised, and so could receive a stronger signal. This binding site is called the D2 receptor.
3. They also studied the D2 receptor in a subset of the human subjects who were within one year of diagnosis and not on any medications, using the imaging technique known as positron emission tomography(PET). They found that in humans, too, exercise increased the number of D2 receptors.
What kinds of exercise are helpful for people with PD?
· Any exercise will be beneficial. Be sure to check out the tip sheet on exercises specifically helpful for people with PD.
· It is important to consult with your physician and, if available, a physical therapist that understands PD, but anything you do without injuring yourself will provide a benefit.
· Formal exercise programs balance several different fitness criteria: strength, balance and coordination, flexibility, and endurance.
· Each of these areas has been demonstrated to provide a benefit to people with PD, and none should be ignored. Achieving a balance that works for you and that engages you in a program that you can keep start, maintain, and, hopefully, expand upon is the goal.
Many programs target the rapid gains that can be achieved through a focus on improvements in functional capacity and mobility. These programs vary according component activities. Examples of exercise programs for people with PD include:
· Intensive sports training
· Treadmill training with body weight support
· Resistance training
· Aerobic exercise
· Alternative forms of exercise (Yoga)
· Home-based exercise (workout tapes)
· Practice of movement strategies
Working with a Partner
· Many people find that they achieve the most success when they work with a partner.
· Depending on the stage of the disease, it may be best for people with PD to train in an environment where there are others around, who could offer help if needed.
· Beyond this, partners can help to motivate and engage each other in their exercise.
· People new to exercise programs are generally best off working with an individual or group training leader; for people whose mobility is significantly affected by PD, a physical therapist may be the best choice for helping to start a program.
Should exercise be done well before major motor symptoms of PD occur?
YES! Everyone should exercise more, whether they have PD or not.
· In PD, a special kind of neuron—brain cells—that produces the chemical transmitter dopamine gets damaged and lost.
· However, there is a lag between the time when the loss of neurons begins and the time when Parkinson’s motor symptoms start to show.
· In fact, by the time most people are diagnosed, as much as 40-60 percent of their dopamine neurons are already gone.
· The reason that people with Parkinson’s don’t experience symptoms until they reach this point is that the brain can compensate for the loss of dopamine neurons by gradually changing to adapt to the situation.
· In fact, the brain reshapes itself throughout life in response to experience. Scientists call this ability to change and compensate experience-dependent neuroplasticity.
taken from the www.parkinson.org
We are now meeting for exercise on
Mondays and Wednesdays
10:30 a.m. in the usual place.
We hope newcomers will choose the Monday class, as the Wednesday class is running at, or near, capacity of twenty-five participants.Mondays and Wednesdays
10:30 a.m. in the usual place.
Want to volunteer at Turnstone?
Turnstone is a special place, with special people, helping special people. In your own way, if you want to be a part of all of this, visit www.turnstone.org for more details about all we have mentioned. Turnstone helps FWPSG, so get involved in helping Turnstone.
COGNITIVE COMMUNICATION CLASS
There are two sessions per week. ($6.00 for one session or $10 for both) Mondays and Wednesdays from 9:30 to10:15 a.m. at theTurnstone Auditorium, 3320 N Clinton in Ft Wayne.
Peg Maginn, Speech Pathologist, is instructor. (260-483-2100)(260-483-2100, Ex.229) The class addresses speech, voice, swallowing, and cognitive thinking.
November 2011
Nov. 17 - Dr. Lynn Stafford, podiatrist, will be discussing how podiatry issues (feet, posture, balance, etc.) affect Parkinson's patients.
Dec. - NO MEETING. Celebrate the Christmas season with family and friends.
Jan. 19 - Caring and Sharing Concurrent Sessions.
Feb. 16 - Amy Stir, OT and Driver Rehabilitation Specialist with the Fort Wayne Rehabilitation Hospital will present the program "The Older Driver", and will show us ways to determine when and if it’s time to relinquish our driving privileges.
Thank You to all the wonderful Doctors, nurses, friends, neighbors, caregivers, and all the other people that touch our lives daily. You make the lives of a Parkinson’s Person richer and fuller, healthier and with more hope than ever before, because you care. Thank you for your contribution to our lives. MS
October Meeting
A special “Thanks” to Dr. Barbara Habermann, Asst. Professor of Nursing, IU School of Nursing, Indianapolis, for sharing here research results regarding
“Couples Living With Parkinson’s disease: Needs and Concerns at Advanced to End Stage”. Dr. Habermann included five Fort Wayne support group couples in her research. Her specifications were to identify and describe:
Perceptions of troublesome symptoms
Needs and concerns during advanced stages
Preferences and decisions for end of life care
There were fifteen couples included in the research. Their mean ages were 73+ years for PWP, 72+ years for spouses, and marriage duration was 49+ years.
Data was collected over three meetings by teams of up to three interviewers. The four main troublesome symptoms were:
Falling (up to 8 times daily)
Aspiration (audible speech)
Intelligible speech
Swallowing
The most prevalent caregiver concerns were:
It’s difficult to care give a spouse with PD
What happens if I get sick
When I’m gone who will take care of my PD spouse
Other major concerns centered around the financial burdens on families.
The biggest unmet need of caregivers is the need for respite care. Caregivers cannot get away, or have some time for themselves.
There was also concern about end of life planning of finance, (wills, power of attorney, etc.) The major reasons planning does not take place is:
Lack of information on what to expect and/or do
The difficulty of the conversation
Communication challenges between spouse and PD mate.
Dr. Habermann encouraged us all to make sure our end of life planning is completed as soon as possible, and mature children, be included in the discussions so they are aware of what to expect.
These decisions are never easy but must be done. End of life planning needs to be in place so “Uncle Sam” and the IRS don’t do it for you. If the courts are involved, your assets are in jeopardy! Contact your family attorney and get started if you have not already done so.
A NOTE FROM DAN SPANGLER
It seems early to be talking about winter weather but we need to send you
this reminder. Soon bad weather will be upon us and the possibility of cancellations will be here.
The following reminder will also appear in future newsletters until spring:
When the city of Fort Wayne declares a “Level Two” emergency, Turnstone will close and all Parkinson’s Support Group activities will be cancelled until the emergency is lifted. This includes the monthly evening meeting, exercise, caregiver’s and speech classes.
In the event there is no “Level Two” emergency, but it is in everyone’s best interest to cancel the monthly evening meeting, the following media will be contacted:
• WOWO Radio – 1190 AM
• WANE-TV – Ch 15
• WPTA-TV – Ch 21
When Turnstone is open, exercise, caregiver’s and speech classes will meet, but you are urged to use your best judgment before you venture out into the weather.
TIPS To Make Your Life Better By Ed Gatke
With the holidays coming some of us will be traveling by air or possibly train. Here are some ideas from Shelley Peterman Schwartz's book TIPS.
* If you must travel with medication that needs to be refrigerated, bring along a thermal lunch bag that will hold a few doses of the medication. Insert a cool pack into the bag until you can give it to the flight attendant to refrigerate. It is also a good idea to have a letter from your physician stating that you are taking medication and need to travel with syringes and needles.
* Select the right bag. Before you plan your next trip, upgrade your luggage. Lightweight, durable Walking Bag luggage helps reduce stress on knees, back, elbows, and shoulders. It rolls in all directions and is very easy to maneuver in crowded places. Available in assorted styles, sizes, and colors, the luggage is made of rugged Teflon-coated 1,200-denier polyester fabric. It is very stable and can be leaned on or sat on. Overall, it takes about one-sixth of the effort to use Walking Bag luggage compared with other types of luggage.
* Soft cushioned handles and shoulder straps made of neoprene gel, make carrying luggage, briefcase, musical instruments, carts and the like easier on the hand. Bright colors also serve as a luggage identifier as well.
* Use Ziploc bags (or similar zipper-slide plastic bags) to pack similar items of clothing together (undergarments, in one bag; t-shirts in another) and zip 1/2 way. Then, sit on the bag or squeeze it so that all the air comes out, then zip it tight. You'll find that you can pack your clothing into a smaller more manageable suitcase. Be sure to pack a change of clothing in your carry-on bag, just in case your luggage is delayed.
* Taking along these items when you travel can really save the day:
*a collapsible cup & drinking straws *a tape measure
*cellophane *an extra wristwatch & pair of glasses
*paper clips *a calculator
*Ziploc plastic bags *a small spiral notebook & pencil
*a small folding suitcase *a small flashlight
*packets of instant coffee, creamer, *an electric water heater to heat water
sweetener, bouillon cubes and instant soup
*Pack your prescriptions and other medications in your carry-on bag. If you pack them in your suitcase and the airline misplaces your luggage, you may be stranded without your medicine for at least 24 hours. Also, in case of an emergency, carry information including your diagnosis, medications, and family and doctors' contact information.
*Before you go on vacation, contact the hotel where you will be staying and speak with the concierge. She can make dinner reservation, arrange for play tickets, and provide information about other sights to see that otherwise might be unavailable to you. The concierge service is free, but tips are appreciated.
*If you travel with a wheelchair, bring along a length of string that spans the width of your wheelchair or a tape measure. Before checking in at the hotel or motel, ask the desk clerk to take the string pr measuring tape and use it to measure the width of the door to your room, the bathroom, and the hotel elevator (if applicable). If there is enough clearance, you can check into the hotel with confidence (booking a "handicap" room will assure these widths are already fine.
Have a good holiday! Bon Voyage!!
Clinical Trial Opportunity
Suncoast Neuroscience in St. Pete is looking for volunteers for a clinical trial of a new drug to treat Parkinson's Disease Psychosis. There currently is not a good medication for treating the various hallucinations, delusions and related "side effects" of Parkinson's disease. The common drug that is currently prescribed is seroquel. Its use for hallucinations in Parkinson's and for people with dementia is off label, but it is the best that is currently available. The clinical trial is for a medication that has had some early success treating these symptoms. The contact person is Lori A. Banctel, 727-824-7135 lbanctel(AT)suncoastmed.com . submitted by Pat
Parkinson’s Disease Expert Briefings
THE Parkinson’s Disease Foundation announces its newest series of PD ExpertBriefings, free interactive educational seminars designed for people living with Parkinson’s, family members, and healthcare professionals. The seminars are available by telephone or on line, and run through June 2012.
To join a PDExpertBriefing call (800) 457-6676, visit www.pdf.org, or email info(AT)pdf.org. Pre-registration is recommended. Telephone participants will receive an event-specific telephone number which differs from the one above.
ExpertBriefings Schedule
Caring for a Person with Late Stage Parkinson’s
Tuesday, November 22, 2011, 1:00 – 2:00 PM EST
In recognition of November as National Family Caregiver’s Month
Faculty: Joan Gardner, RN, BSN, and Rose Wichmann, PT
Driving and Parkinson’s: Balancing Independence and Safety
Tuesday, January 31, 2012, 1:00 – 2:00 PM EST
Faculty: Margaret O’Connor, PhD, ABPP, and Lisa Robins Kapust, LCSW
Beth Israel Deaconess Medical Center, Boston, MA
A Closer Look at Anxiety and Depression in Parkinson’s
Tuesday, March 6, 2012, 1:00 – 2:00 PM EST
Faculty: Laura Marsh, MD
Michael DeBakey Veterans Affairs Medical Center and Baylor College of Medicine, Houston, TX
Parkinson’s Medications Today and Tomorrow
Tuesday, April 17, 2012, 1:00 – 2:00 PM EST
Faculty: Cynthia L. Comella, MD, FAAN
Rush University Medical Center, Chicago, IL
Understanding the Progression in Parkinson’s
Tuesday, June 26, 2011, 1:00 – 2:00 PM EST
Faculty: Ronald F. Pfeiffer, MD
University of Tennessee Health Science Center, Memphis ,TN
This series has been made possible by an educational grant from Teva Neuroscience. The article isd reprinted from the October 2011 issue of the Central Ohio Parkinson’s News.
Podiatry and Parkinson’s: common foot problems and treatments
Feet carry the body’s entire weight and provide an important function: walking. It is therefore vital to seek advice on foot problems as, if left untreated, they may become painful, reduce mobility and falls could become more likely.
Those with Parkinson’s may be particularly susceptible to certain foot problems and may also find it harder to care for their feet – leaning over to cut toe nails for example or safely using nail scissors. The following outlines some of the problems that may arise:
■ gait – in ‘normal’ walking the heel strikes the ground first and the toes are the last point of contact as the foot lifts from the ground again. But in Parkinson’s a more flat-footed style of gait tends to occur as stride length is shortened and the ankles are more rigid. This can lead to a shuffling walk which poorly absorbs the impact of the foot making contact with the ground, potentially resulting in foot, leg and knee pain. It can also make balance and mobility more difficult.
In contrast to flat-footedness, some people with Parkinson’s tend to walk on their toes as rigidity in the ankle can also lead to the foot pointing downwards. This ‘toe-walking’ adds pressure on the toes and may impact mobility and balance.
A podiatrist, usually working with a physiotherapist, will be able to suggest exercises and strategies to correct poor gait or prevent ‘toe-walking’, as well as ways to ensure that the stride is more even and the foot more flexed to improve heel-to-toe contact with the ground.
■ stiffness – stiffness or cramps in the calf muscles can make it harder for the foot to absorb the impact of it striking the ground when walking and pressure problems may arise, such as calluses on the soles of the feet. General stiffness can affect walking and prevent the foot from making proper contact with the floor.
A podiatrist will help with this and may also refer you to a physiotherapist. They will suggest exercises to stretch the muscles to reduce stiffness. A podiatrist can also advise on specially tailored devices called orthoses which are custom-made to fit your foot and will help spread the impact of making contact with the ground across the whole foot. This can improve gait and mobility and allows the muscles in the calves and feet to work properly.
■ dystonia – dystonia and muscle cramps frequently occur in the feet. Typically the toes curl into a claw-like position, the foot turns inwards at the ankle (inversion), and occasionally the big toe sticks up (hyperextension). This position, caused by spasms in the calf muscles, can be very uncomfortable and make it hard to fit feet into shoes. The toes may also rub on footwear and pressure problems may arise on areas of the foot not designed to withstand pressure.
The Achilles tendon may also tighten as a result of dystonia which can cause ‘toe walking’ as the foot is pulled downwards.
Your podiatrist will be able to suggest ways to prevent toe-curling, possibly using orthoses such as toe splints. Such splints can help prevent toe-curling and are made of silicone which gives the toes something to grip on when walking. If splints do not help sufficiently, then a podiatrist can also make a special mould from quick-setting silicone rubber which forms a casing around the toe and, when set, helps to keep the toes straight. In some cases adjusting medication can help with dystonia so discuss this with your doctor or your Parkinson’s Disease Nurse Specialist.
edema – this is swelling resulting from the accumulation of excessive fluid in the tissues and is more likely to occur in those who experience bradykinesia, i.e. slow or reduced movement. If you have swollen feet or ankles you should visit your doctor to eliminate other causes, such as heart or renal problems or Deep Vein Thrombosis.
For people with Parkinson’s the swelling may be caused by reduced movement and prolonged periods spent sitting. Blood circulation back through the veins relies on the movement of leg muscles, so if movement is reduced the veins can become congested and the pressure forces fluids into the surrounding tissues. Those who spend excessive amounts of time standing may suffer from postural oedema as gravity causes excess fluid to collect around the ankles when upright.
Oedema can be alleviated by lying flat for at least an hour during the day to improve circulation, or by keeping the legs raised when seated. Your doctor may prescribe a diuretic - a medication which increases the production of urine and stimulates the movement of toxins through the kidneys.
A podiatrist or physiotherapist can help with exercises, such as ankle rotations to prevent fluid build-up in the legs, and as oedema can make it difficult or uncomfortable to wear shoes, a podiatrist will be able to advise on comfortable forms of footwear, for example shoes that can be loosened during the day if swelling occurs. Both therapists can also show your carer how to give you a gentle foot or leg massage to improve circulation taken from Rewritetomorrow.eu.com
A Turnstone Center Opportunity
Substitute teachers are needed for Turnstone's Kimbrough Early Learning Center. You would assist staff in the classroom with lessons, food service, nap time routines, and any other activities that goes on in the classroom. (no changing diapers) Children range in age from 2-12. If you are interested contact Adrianne Lyon at 483-2100 x235. She can answer any questions you may have and fill in additional details and requirementsParticipants Needed for PD Study
Participants with Parkinson's disease are needed for a research study at the University of Indianapolis (Krannert School of Physical Therapy). The study is investigating long-term changes in hand strength, mobility, balance, and quality of life in persons with Parkinson's disease who exercise, and those who do not exercise. The study will help us to better understand the effects of exercise on the progression of Parkinson's disease. You must be able to travel to the University of Indianapolisfor research sessions over a span of two years. Contact Dr. Stephanie Combs, PT, Phd, NCS, 317-788-3523. or email at scombs(AT)uindy.edu if you are interested.
We are now meeting for exercise on
Mondays and Wednesdays
10:30 a.m. in the usual place.
We hope newcomers will choose the Monday class, as the Wednesday class is running at, or near, capacity of twenty-five participants.
Want to volunteer at Turnstone?
Turnstone is a special place, with special people, helping special people. In your own way, if you want to be a part of all of this, visit www.turnstone.org for more details about all we have mentioned. Turnstone helps FWPSG, so get involved in helping Turnstone.COGNITIVE COMMUNICATION CLASS
There are two sessions per week. ($6.00 for one session or $10 for both) Mondays and Wednesdays from 9:30 to10:15 a.m. at theTurnstone Auditorium, 3320 N Clinton in Ft Wayne.Peg Maginn, Speech Pathologist, is instructor. (260-483-2100)(260-483-2100, Ex.229) The class addresses speech, voice, swallowing, and cognitive thinking.
October 2011
Oct 20 - Dr. Barbara Habermann-IUPUI will be sharing the results from her 'Assistive Devices' research. She used people from across the state, including several from our support group.
NOTE: Dr. Jackson's philharmonic research was originally scheduled but will now be presented at a later date after all of her research is completed.
Nov. 17 - Dr. Lynn Stafford, podiatrist, will be discussing how podiatry issues (feet, posture, balance, etc.) affect Parkinson's patients.
Dec. - NO MEETING. Celebrate the Christmas season with family and friends.
Jan. 19 - Caring and Sharing Concurrent Sessions.
Feb. 16 - Amy Stir, OT and Driver Rehabilitation Specialist with the Fort Wayne Rehabilitation Hospital will present the program "The Older Driver", and will show us ways to determine when and if it’s time to relinquish our driving privileges.
What an informative treat to hear from neuropsychologists Dr. Tasha Williams, Phd, ABPdN, HSPP, and Dr. Ronald Williams, Phd, ABN, HSPP regarding Alzheimer’s disease.
Alzheimer’s disease, Lewy Body Dementia, and Parkinson’s disease Dementia are all classified under the larger ‘Dementia Umbrella’. Using the reference guide provided by our speakers, what follows are some of the components of the above three dementias as they are compared.
ALZHEIMER’S
Key Features
Persistent and worsening forgetfulness
Disorientation and confusion
Difficulty with abstract thinking
Difficulty with familiar tasks
Personality changes
Changes in judgment
Onset
Gradual with progressive worsening
Sudden appearance following illness or injury
Caregiving
Calm and stable home environment
Reassurance and support
Mental stimulation /social interaction
LEWY BODY DEMENTIA
Key Features
Shared characteristics w/ Alzheimer’s and Parkinson’s
Visual hallucinations
Masked facial expression
Bradykenisia
Delusions
Cognition deficits
Sleep problems
Onset
Gradual onset
Worsens more rapidly than Alzheimer’s
Caregiving
Clutter and distraction free environment
Reassuring and validating responses
Break tasks into small parts for success
Structure and routine
PARKINSON’S
Key Features
Slowed processing speed
Impaired mental flexibility
Visual-spatial deficits
Memory Loss
Motor symptoms predate cognitive decline
Hallucinations
Onset
Progressive-Dementia usually starts at least 2 years after diagnosis
Variability in symptoms present
Caregiving
Clutter and distraction free environment
Reassuring and validating responses
Break tasks into small parts for success
Structure and routine
Both presenters wanted to discuss caregiving in more detail but time was short. Both agreed they would like to return at some future date to present a detailed plan for caregiving as it relates to the dementias.
IMPORTANT ANNOUNCEMENT
WE NEED AT LEAST 20 MORE PEOPLE WITH PARKINSON’S TO PARTICIPATE IN THE IPFW-PHILHARMONIC MUSIC RESEARCH STUDY COMING UP SOON. THE DEADLINE TO REGISTER IS OCTOBER 1, 2011. PLEASE BE INVOLVED IN THIS RESEARCH! HELP IN THE DEVELOPMENT OF MORE KNOWLEDGE ABOUT PARKINSON’S. RESEARCH IS THE MAJOR AVENUE FOR FINDING A CURE FOR, OR, AT THE VERY LEAST, AFFECTING THE SYMPTOMS OF, PARKINSON’S. CURRENT CONCERT DATES ARE OCTOBER 9th, 16th, and 30th, AT SWEETWATER SOUND AUDITORIUM.
WON’T YOU HELP US? CALL OR EMAIL TODAY:
Dr. Nancy Jackson – 260-481-6716 or jacksonn(AT)ipfw.edu
Dr. Pam Kelly -260-615-6777 or kevkelly82000(AT)yahoo.com
THANK YOU
Nine Ways to Get Someone to Eat
A common nutritional problem that can affect care recipients in poor health is Cachexia-anorexia and it especially involves those in advanced stages of Alzheimer's cancer, and AIDS. It is a syndrome in which progressive and involuntary weight loss occurs. The people with this disorder are "wasting away" from the lack of vitamins and nutrients, and as a caregiver, this can be a difficult and frustrating event to witness.
This syndrome can be attributed to, among other things, medications and psychological problems like depression. It is also possible the person you are caring for has a loss of appetite simply from not feeling well. Caregiver.com has come up with a list of ways to help your care recipient eat. This list doesn't necessarily reflect the needs of care recipients on special needs diets such as diabetes or restricted salt intake diets. Remember to consult your physician about the specific dietary needs of your loved one.
1. Water, Water, Water. Make sure the person you are caring for has plenty of water to avoid dehydration, which can lead to appetite suppression.
2. Keep it small. Instead of three large meals a day, which can look overwhelming to someone in poor health, serve six small meals day.
3. Bulk up on the amount of calories per meal. For instance, you can add protein powder mix to shakes or drinks to increase calories.
4. Soft is better. Serve soft foods such as pudding, ice cream or fruit smoothies because they can be tasty and easy to digest.
5. Make it tasty. Don't serve bland or sour tasting food.
6. Put the power in their hands. When possible, give the person you are caring for the decision-making power to decide what they would like to eat; it helps them to feel in control.
7. Make it pretty. Present appetizing looking meals by accenting the plate with a garnish (i.e.strawberry or melon). Also, make the dining experience pleasant for the person you are caring for by playing soft music or talking to them about the day's events while they are eating to take their mind off not feeling well.
8. Write it down. Keep a food diary about the person you are caring for and include: what food they have problems or complications digesting and their daily food menus, and review it with their doctor or dietician for feedback. They may be experiencing digestive problems or irritable bowel syndrome due to their menu.
9. Work it out. Try to get them moving to work up an appetite. If overall exercise such as walking isn't possible, have them fold the laundry or peel vegetables.
Borrowed from Caregiver.com
Please join us for a Special Caregiver’s Meeting on Wednesday, October 12th, 2011, at the Turnstone Auditorium, from 10:30 am – 11:30 am.
Bonnie Davis, of Visiting Nurse and Hospice, will address the needs and issues of caretakers and discuss more effective ways of meeting the needs of our PD spouses.
Further study on music and its effect on symptoms of Parkinson’s disease is being planned.
The Fort Wayne Philharmonic and the IPFW Music Therapy Department are planning this study. The study is going to explore and compare the impact of live, recorded, and video-taped music on symptoms of Parkinson’s disease. THE PROGRAM NEEDS A MINIMUM OF FORTY-FIVE (45) PARTICIPANTS.
You are invited to participate. The concerts will all be on Sunday afternoons. The times will be different for each session because each group of participants will be experiencing the concert in a different format each time. One will be a live performance, one video-taped, and one audio-taped. All concerts will take place at the Sweetwater Sound Auditorium on US Route 30 west of the city, and will be about fifty (50) minutes in length. The first two dates are October 9, 2011, and October 16. The last date is unconfirmed at this time, and will either be October 30, or November 6.
If you are interested in volunteering to participate in this study, you must be at least 18 years of age, and be diagnosed with Parkinson’s disease. Please contact either Dr. Pam
Kelly (260-615-6777 or kevkelly82000(AT)yahoo.com) or Dr. Nancy Jackson (260-481-6716 or jacksonn(AT)ipfw.edu) for more information about becoming a participant.
CALL AND SIGN UP NOW! LET’S SHOW OUR SUPPORT FOR THIS PROJECT!
Substitute teachers are needed for Turnstone's Kimbrough Early Learning Center. You would assist staff in the classroom with lessons, food service, nap time routines, and any other activities that go on in the classroom. (no changing diapers) Children range in age from 2-12. If you are interested contact Adrianne Lyon at 483-2100 x235. She can answer any questions you may have and fill in additional details and requirements
Participants with Parkinson's disease are needed for a research study at the University of Indianapolis (Krannert School of Physical Therapy). The study is investigating long-term changes in hand strength, mobility, balance, and quality of life in persons with Parkinson's disease who exercise, and those who do not exercise. The study will help us to better understand the effects of exercise on the progression of Parkinson's disease. You must be able to travel to the University of Indianapolis
> for research sessions over a span of two years. Contact Dr. Stephanie Combs, PT,Phd, NCS, 317-788-3523. or email at scombs(AT)uindy.edu if you are interested.
WHAT: AARP 55 Alive Defensive Driving Class
WHEN: 10:00 am - 3:00 pm, Wednesday, October 12, 2011
WHERE: Community Center 233 W. Main St . Ft. Wayne
This is an "open" course so you do not need to be over 55 years of age to register.
Lunch break with your own sack lunch or at nearby fast food restaurants.
FEE: $14.00 or $12.00 for AARP members with AARP ID card. Make checks payable to AARP.
Registration deadline is October 5, 2011. Call the community Center 260-427-6460 to register or for more information.
Editor’s Note:
The articles you normally would find each month would complement the FWPSG topic for that month. However, this month you will find a list of assistive devices grouped so that you can find the help for the particular need you may be facing this very day or perhaps next week. This resource may alert you to products you were not aware were available for help. It may also be beneficial as a guide to select the right jargon to help locate and ask for these products my name, so that you can find just the right assistance for the Parkinson’s person under your care. Members who receive this by email should be able to click and go right to the webpage. Happy hunting. And for more ideas you will not want to miss the coming meeting for more great ideas. We will see you there.
Assistive Devices to Help People with Parkinson’s disease.
Caregiver Resources
· Family Caregiver Alliance
· National Family Caregiver Association
· Family Caregiving 101
· Caregiving.com
· Alzheimer's Association
· Choice Advisory Services
Eldercare advisors
· Assist Guide Information Services
Eldercare, Long-term Care, and Caregiving
· Lotsa Helping Hands
An online scheduling tools for caregivers
Devices to Help with Activities of Daily Living
Adaptive Clothing
· www.blvd.com
Assistive, Medical, and Exercise Devices and More
· www.makoa.org
· www.dynamic-living.com
· www.seniorsuperstores.com
· www.liftchairs4less.com
· www.make-life-easier.com
· www.maxiaids.com
· www.ustep.com
Chairs
· www.phc-online.com
· www.liftchairs4less.com
· www.spinlife.com
Computer assisted aids and other devices
Adaptive Technology Resources
· Assistive Technology for Computers and Printed Material
This site provides links to articles and assistive technology resources for people with disabilities.
· AssistiveTechnologies.com
Assistive Technologies strives to remove the "dis" from disability and encourage each person's ability through the implementation of modern Technologies.
· Microsoft Accessibility Resources
Microsoft Accessibility makes the computer easier to see, hear, and use. Discover what's possible with Accessibility Today and read inspiring Profiles of Accessibility in Action.
Assistive Technology Product Reviews
· Who Should Use an On-Screen Computer Keyboard?
· New Mobility
A great site to read reviews on the latest assistive technology devices from actual users.
Assistive Technology Products
· MagicCursor 2000-Alternative Clicking Solution
MagicCursor 2000 is for people who can't, or don't want to click the mouse button. MagicCursor 2000 performs all the mouse button functions automatically through software. All you need to be able to do is point: MagicCursor automatically takes care of the rest. It is an ideal companion for the Tracker head operated mouse products. Instead of clicking the mouse button, simply dwell over the item you want to select. After a preset amount of time, MagicCursor will automatically perform the click for you. Compatible with Windows Vista,XP, and 2000. For people using a headpointer like Tracker who have difficulty using a standard mouse to supply mouse clicking functions, including individuals with Quadriplegia, Cerebral Palsy, Multiple Sclerosis, Muscular Dystrophy, ALS, Carpal Tunnel Syndrome and any other disability where the user has little or no control of their hands to use a standard mouse.
· Dragon NaturallySpeaking
Dragon NaturallySpeaking, the world’s best-selling speech recognition software, gives you everything you need to be more efficient with your PC.
· SteadyMouse
SteadyMouse is free software designed to assist people with hand tremors commonly associated with Parkinson's and other neurological disorders.
· Jobs Access with Speech (JAWS) for Windows
For Windows 95, 98, ME, 2000, XP, and Vista, this popular screen-reader can pronounce American English, Brazilian Portuguese, British English, Castilian Spanish, Latin American Spanish, Finnish, French, German, and Italian.
· WindowEyes Professional
A widely-used screen-reader for Windows 95, 98, ME, 2000, XP, and Vista that supports speech synthesizers and over Braille displays.
· Apple's Tiger & Leopard Operating Systems for Mac
Includes a variety of accessibility features that allows those with vision, hearing and motor skills disabilities to more easily use their Macintosh computer.
· iBraille
A user friendly Braille editor for Macintosh users.
· Google Accessible Web Search for the Visually Impaired
Google search with audio component.
· WebAnyWhere
A web-based screen reader that enables blind people to access the web from any computer with a sound card.
· BrailleConnect 12
This 12-cell refreshable braille display can be used to write and read SMS text messages and operate your mobile phone or PDA.
· Vocal-Eyes
Designed to enhance career opportunities for the visually-impaired by providing fast and flexible access to the wealth of software used by business and professionals.
· Books-To-Burn
A text- to-speech file for making books on CD on Macintosh computers by translating text files into audio files that can then be converted to mp3's.
· EmacSpeak Complete Audio Desktop
A free text-based UNIX system which works with Emacs that can speak the information on visual screen displays.
· e-Speaking Voice and Speech Recognition
Enables you to control your computer, dictate e-mails and letters, and have your computer read documents back to you.
· Lynx 2.8.5
A free text-mode browser with voice-synthesizers and Braille-based technology, Lynx works on diverse platforms including MacIntosh MacLynx, Windows, DOS, UNIX, and VMS.
· Proloquo 2.0
With speech to iPod-ready iTunes tracks and quick voice access, Proloquo offers a multi-lingual speech and communication system for Mac OS X users who cannot speak.
· IBM Easy Web Browsing
Helps people with limited vision access Web content more easily.
· Speakup for Linux Operating System
Provides access to all console programs for Lynx, Pine, and GNU/Linux operating systems.
· Hal Screen Reader
For Windows 95, 98, Me, NT4, 2000, XP, and Vista, Hal includes the Dolphin Orpheus Speech System and Microsoft's MSAPI Speech Synthesizer that can pronounce words in English, Dutch, French, German, Italian, Spanish, and Swedish, as well as Grade 1 and 2 Braille.
· Brailliant 24
A 24-cell refreshable Braille display that serves as a Braille terminal for PC screen readers.
· BrailleSurf 4
Offers English, French, and Spanish versions of its Internet browser for Windows 95, 98, NT, and 2000 that displays on a Braille bar or can be spoken by a speech synthesizer.
· Supernova
Offers magnification, speech and Braille support to give people with visual impairments the ability to access Windows.
· EIA Web Browser
A specialized Web browser, suitable for touch-screen systems, with fully integrated Web awareness, assessment and training modules.
· LightWriter
A text-to-speech communication aid for people with speech impairments offering a dual display option, choice of keyboard layouts and languages.
· LunarPlus Screen Magnifier
Offers people with visual impairments the advantage of speech output.
· The Magnifier
Offers 2x – 10x screen magnifier amplification for Windows 3.x, 95, 98, NT, Windows 2000, and Vista that can be positioned anywhere on your computer screen.
· ZoomText 9.1
Level 1 provides 2x – 16x magnification, Level 2 provides synchronized magnification and screen reading. Works with Windows Vista, XP, ME, 2000, NT4, 98, 95, and DOS.
· Kurzweil 1000
A system for scanning books and other printed materials into a computer and then speaks it aloud through a voice synthesizer.
· Cicero Text Reader
This device turns a computer or scanner into a reading machine for people with a visual impairments. Documents placed on the scanner can be translated into speech or Braille.
· OpenBook 6.0
Allows books and text embedded in graphics to be spoken back through a voice synthesizer, including the ability to create MP3 and WAV file as well .brf and .brl Grade 2 Braille formats.
· Telesensory Ovation
Scans and translates text from books and other printed matter into speech.
· i-Scan
This document reader includes a DEC talk Voice, an OCR reader, a flat bed scanner, a computer, and a screen reader.
· Poet Compact: Scan & Read Standalone Reader
This compact machine includes an internal hard disk, flat bed scanner, a text recognition program, and a speech synthesizer.
· SARA Scanning & Reading Appliance
Scan reading materials and have them read back to you as continuous read, line-by-line, word-by-word, or letter-by-letter. Includes 29 voices in 19 language dialects and 12 major languages.
· Click-N-Type Virtual Keyboard 3.03
A free Windows and DOS application that displays a virtual on-screen keyboard for people who cannot type using a physical keyboard.
· QPointer Keyboard
Use your keyboard as a pointing device to perform computer operations without taking your hands off the keyboard.
· Flexiboard
Built-in optical overlay-detection, allows the keyboard to detect which overlay is placed on top of the keyboard. Overlays can be changed without commands to the computer thus allowing users to handle a large range of overlays independently.
· KeyStrokes 4 for the Mac
A virtual on-screen keyboard that allows you to type using a mouse, trackball, head pointer or other mouse emulator to type characters into Macintosh applications.
· Dwell Clicker
A free utility for people who can move a mouse but have difficulty clicking the mouse buttons.
· Dasher
Data entry interface driven by a mouse, stylus, or eye-tracker.
· BigKeys
Offer keys that are 4 times larger than a typical keyboard and works with both Windows and Macintosh computer.
· Magic Wand Keyboard
Windows or Macintosh keyboard with built-in mouse that allows people with disabilities easy access to the Internet, e-mail, and computer programs with a hand-held wand or mouth-stick.
· VirtualKeyboard for Macintosh
An on-screen keyboard that offers point-and-click typing using pointing devices such as a head pointer, mouse, trackball.
· SmartNav
A hands-free mouse for people with carpal tunnel, RSI and other disabilities allowing you to control your computer by simple head movements.
· EyeGaze Communication System
Enables people to use their eyes to operate a computer or telephone.
· VisionKey
Combines an eye tracker and a viewer that measure the position of the eye. Users look at a specific word, letter or character in front of their eyes and "type" by holding their gaze until a selection is confirmed by light and sound.
· Assistive Mouse Adapter
Filtering unintentional movements caused by hand tremor, this device allows for much smoother movement of the cursor for improved accuracy of mouse operation.
· Boost Tracer
Improves mouse control for people with Quadriplegia, CP, MD, MS, ALS, CTS and other disability where lack of hand control does not allow you to use a standard mouse.
· Quadjoy Mouse
Mouse for quadriplegics with all of the functions of a standard 5-button mouse or wheel mouse.
· Headmaster Plus
This head pointing device provides full mouse control of computers for persons who cannot use their hands. Compatible with Macintosh, IBM 2 or 3 button serial mouse, or IBM PS/2 mouse.
· Smart-Nav AT Package
A hands-free cursor control system for people with ALS, spinal cord injuries and other disabilities.
· HeadMouse
Wireless head-pointing device for Macintosh and Windows includes a "sip-and-puff" switch.
· NaturalPoint Head-Tracking Mouse
A hands-free mouse alternative that connects to your computer through a USB port allowing precise cursor control through simple head movements.
· TrackerPro
Computer device takes the place of a mouse for people with little or no hand movement.
· Skipper
This free package for Linux describes simple sensors allowing people with severely limited or involuntary movements to operate a computer.
Medication Reminder Alarms
· http://www.epill.com/
Personal Security and Alert Systems
· http://www.x10.com/security/personal_alert.html
Products for Eating, Dressing, Toileting, Etc.
· www.disabilityproducts.com
Recreation
· http://www.landeez.com/
Circulation
· www.healthylegs.com
Driving
· http://www.dol.wa.gov/driverslicense/seniors.html
Exercise
· "Motivating Moves for People with Parkinson's"
Video and DVD featuring seated exercises, now available through the Parkinson Foundation of the Heartland. Cost: $19.95.
Their website has viewable samples. (You need either QuickTime or Windows Media Player plug-ins to view the samples.)
· "Parkinson's Disease & The Art of Moving"
Oakland-based John Argue's exercise book and video/DVD for PD patients. Cost: $19.95 book, $47 DVD or video.
A few of the exercises are intended to be done seated.
· "Move It! An Exercise and Movement Guide for Parkinson's Disease"
Book and DVD for PD patients developed by Kevin Lockette, a Hawaii-based physical therapist. Cost: $40.
Some of the exercises are meant to be done while seated.
Incontinence
· www.dmponline.com
· www.geriatricstore.com
· www.woodburyproducts.com
PD Information and Support
· American Parkinson Disease Association
· National Parkinson Foundation, Inc.
· Michael J. Fox Foundation
· Northwest Parkinsons Foundation
Prescription Assistance
· Partnership for Prescription Assistance (PPA)
(800) 477-2669, info(AT)pparx.org
This organization researches the various drug assistance programs currently available and helps find
programs to help lower medication costs.
· NeedyMeds.org
www.needymeds.org
This web-based service shares information on cost saving ideas and includes drug coupon programs,
disease-specific assistance programs, information about discount drug cards and more.
· TogetherRx
(800) 444-4106, www.togetherrxAccess.com
This pharmaceutical sponsored program offers a 40-60 percent discount on certain brand name and
generic medications for those who do not have prescription coverage.
· Parkinson's Disease Foundation (http://www.pdf.org/en/saving_meds)
This organization provides some guidelines for reducing medication costs and lists pharmaceutical
companies that currently have drug assistance programs.
· Rx Help
(866) 906-9497
This organization provides drug discount cards.
· Rx Assist
(401) 729-3284, www.rxassist.org
This organization has information about patient assistance program and drug discount cards.
· Extra Help with Prescription Drugs For those on Medicare
www.ssa.gov/prescriptionhelp Phone: 1-800-772-1213
· Patient Advocate Foundation - Co-Pay Relief
www.copays.org
Seniors
(Resources for Seniors with or without PD)
· www.seniorservices.org
· www.scn.org/seniors/
Speech and Hearing
Lee Silverman Voice Treatment
· www.lsvtglobal.com
Music Therapists
· www.cbmt.org
Voice Amplification/Hearing Aids
· http://www.tedpa.org/member/washington_telecommunication_equipment_distr...
· www.consumer.att.com/relay
· www.maxiaids.com
Vision
· www.independentliving.com
· www.maxiaids.com
We are now meeting for exercise on Mondays and Wednesdays
10:30 a.m. in the usual place.
We hope newcomers will choose the Monday class, as the Wednesday class is running at, or near, capacity of twenty-five participants.
Doug and Marcia Lary
Familiar Faces say “Hello” to their PSG friends in Fort Wayne
Members, Bill and Mary Stratton paid a visit to the Lary’s in their new Oregon residence. They found the Doug and Marcia well and busy. Doug provided the leadership for our group before passing it on to our current leader, Dan Spangler. The Lary's moved to Portland, Oregon to be near their daughters and their grandchildren. We were invited to a gourmet dinner at their community dining center, where Doug shared the details of his busy life there in the community.. He continues to create woodcarvings of his loved one, which you can see in the picture behind Doug. Not only is he carving, but working with genealogy and facilitating that group. In addition, he leads the Parkinson’s group and the exercise class. Doug also finds time once a month to pastor at the complex. In the workout room he has recently achieved a milestone of lifting 1 million pounds and is well on his way to the 2 million pound goal. Marcia is also enjoying their new lifestyle because everything that they need is just around the corner and readily accessible. A big thanks to Marcia and Doug for showing us the new home.
NOTE: Dr. Jackson's philharmonic research was originally scheduled but will now be presented at a later date after all of her research is completed.
Nov. 17 - Dr. Lynn Stafford, podiatrist, will be discussing how podiatry issues (feet, posture, balance, etc.) affect Parkinson's patients.
Dec. - NO MEETING. Celebrate the Christmas season with family and friends.
Jan. 19 - Caring and Sharing Concurrent Sessions.
Feb. 16 - Amy Stir, OT and Driver Rehabilitation Specialist with the Fort Wayne Rehabilitation Hospital will present the program "The Older Driver", and will show us ways to determine when and if it’s time to relinquish our driving privileges.
September Meeting
What an informative treat to hear from neuropsychologists Dr. Tasha Williams, Phd, ABPdN, HSPP, and Dr. Ronald Williams, Phd, ABN, HSPP regarding Alzheimer’s disease.
Alzheimer’s disease, Lewy Body Dementia, and Parkinson’s disease Dementia are all classified under the larger ‘Dementia Umbrella’. Using the reference guide provided by our speakers, what follows are some of the components of the above three dementias as they are compared.
ALZHEIMER’S
Key Features
Persistent and worsening forgetfulness
Disorientation and confusion
Difficulty with abstract thinking
Difficulty with familiar tasks
Personality changes
Changes in judgment
Onset
Gradual with progressive worsening
Sudden appearance following illness or injury
Caregiving
Calm and stable home environment
Reassurance and support
Mental stimulation /social interaction
LEWY BODY DEMENTIA
Key Features
Shared characteristics w/ Alzheimer’s and Parkinson’s
Visual hallucinations
Masked facial expression
Bradykenisia
Delusions
Cognition deficits
Sleep problems
Onset
Gradual onset
Worsens more rapidly than Alzheimer’s
Caregiving
Clutter and distraction free environment
Reassuring and validating responses
Break tasks into small parts for success
Structure and routine
PARKINSON’S
Key Features
Slowed processing speed
Impaired mental flexibility
Visual-spatial deficits
Memory Loss
Motor symptoms predate cognitive decline
Hallucinations
Onset
Progressive-Dementia usually starts at least 2 years after diagnosis
Variability in symptoms present
Caregiving
Clutter and distraction free environment
Reassuring and validating responses
Break tasks into small parts for success
Structure and routine
Both presenters wanted to discuss caregiving in more detail but time was short. Both agreed they would like to return at some future date to present a detailed plan for caregiving as it relates to the dementias.
A NOTE FROM DAN SPANGLER
IMPORTANT ANNOUNCEMENT
WE NEED AT LEAST 20 MORE PEOPLE WITH PARKINSON’S TO PARTICIPATE IN THE IPFW-PHILHARMONIC MUSIC RESEARCH STUDY COMING UP SOON. THE DEADLINE TO REGISTER IS OCTOBER 1, 2011. PLEASE BE INVOLVED IN THIS RESEARCH! HELP IN THE DEVELOPMENT OF MORE KNOWLEDGE ABOUT PARKINSON’S. RESEARCH IS THE MAJOR AVENUE FOR FINDING A CURE FOR, OR, AT THE VERY LEAST, AFFECTING THE SYMPTOMS OF, PARKINSON’S. CURRENT CONCERT DATES ARE OCTOBER 9th, 16th, and 30th, AT SWEETWATER SOUND AUDITORIUM.
WON’T YOU HELP US? CALL OR EMAIL TODAY:
Dr. Nancy Jackson – 260-481-6716 or jacksonn(AT)ipfw.edu
Dr. Pam Kelly -260-615-6777 or kevkelly82000(AT)yahoo.com
THANK YOU
CAREGIVER’S CORNER By Ed Gatke
Nine Ways to Get Someone to Eat
A common nutritional problem that can affect care recipients in poor health is Cachexia-anorexia and it especially involves those in advanced stages of Alzheimer's cancer, and AIDS. It is a syndrome in which progressive and involuntary weight loss occurs. The people with this disorder are "wasting away" from the lack of vitamins and nutrients, and as a caregiver, this can be a difficult and frustrating event to witness.
This syndrome can be attributed to, among other things, medications and psychological problems like depression. It is also possible the person you are caring for has a loss of appetite simply from not feeling well. Caregiver.com has come up with a list of ways to help your care recipient eat. This list doesn't necessarily reflect the needs of care recipients on special needs diets such as diabetes or restricted salt intake diets. Remember to consult your physician about the specific dietary needs of your loved one.
1. Water, Water, Water. Make sure the person you are caring for has plenty of water to avoid dehydration, which can lead to appetite suppression.
2. Keep it small. Instead of three large meals a day, which can look overwhelming to someone in poor health, serve six small meals day.
3. Bulk up on the amount of calories per meal. For instance, you can add protein powder mix to shakes or drinks to increase calories.
4. Soft is better. Serve soft foods such as pudding, ice cream or fruit smoothies because they can be tasty and easy to digest.
5. Make it tasty. Don't serve bland or sour tasting food.
6. Put the power in their hands. When possible, give the person you are caring for the decision-making power to decide what they would like to eat; it helps them to feel in control.
7. Make it pretty. Present appetizing looking meals by accenting the plate with a garnish (i.e.strawberry or melon). Also, make the dining experience pleasant for the person you are caring for by playing soft music or talking to them about the day's events while they are eating to take their mind off not feeling well.
8. Write it down. Keep a food diary about the person you are caring for and include: what food they have problems or complications digesting and their daily food menus, and review it with their doctor or dietician for feedback. They may be experiencing digestive problems or irritable bowel syndrome due to their menu.
9. Work it out. Try to get them moving to work up an appetite. If overall exercise such as walking isn't possible, have them fold the laundry or peel vegetables.
Borrowed from Caregiver.com
Wednesday Morning Caregiver’s Corner
Please join us for a Special Caregiver’s Meeting on Wednesday, October 12th, 2011, at the Turnstone Auditorium, from 10:30 am – 11:30 am.
Bonnie Davis, of Visiting Nurse and Hospice, will address the needs and issues of caretakers and discuss more effective ways of meeting the needs of our PD spouses.
ATTENTION…ATTENTION…ATTENTION
Further study on music and its effect on symptoms of Parkinson’s disease is being planned.
The Fort Wayne Philharmonic and the IPFW Music Therapy Department are planning this study. The study is going to explore and compare the impact of live, recorded, and video-taped music on symptoms of Parkinson’s disease. THE PROGRAM NEEDS A MINIMUM OF FORTY-FIVE (45) PARTICIPANTS.
You are invited to participate. The concerts will all be on Sunday afternoons. The times will be different for each session because each group of participants will be experiencing the concert in a different format each time. One will be a live performance, one video-taped, and one audio-taped. All concerts will take place at the Sweetwater Sound Auditorium on US Route 30 west of the city, and will be about fifty (50) minutes in length. The first two dates are October 9, 2011, and October 16. The last date is unconfirmed at this time, and will either be October 30, or November 6.
If you are interested in volunteering to participate in this study, you must be at least 18 years of age, and be diagnosed with Parkinson’s disease. Please contact either Dr. Pam
Kelly (260-615-6777 or kevkelly82000(AT)yahoo.com) or Dr. Nancy Jackson (260-481-6716 or jacksonn(AT)ipfw.edu) for more information about becoming a participant.
CALL AND SIGN UP NOW! LET’S SHOW OUR SUPPORT FOR THIS PROJECT!
A Turnstone Center Opportunity
Substitute teachers are needed for Turnstone's Kimbrough Early Learning Center. You would assist staff in the classroom with lessons, food service, nap time routines, and any other activities that go on in the classroom. (no changing diapers) Children range in age from 2-12. If you are interested contact Adrianne Lyon at 483-2100 x235. She can answer any questions you may have and fill in additional details and requirements
Participants Needed for PD Study
Participants with Parkinson's disease are needed for a research study at the University of Indianapolis (Krannert School of Physical Therapy). The study is investigating long-term changes in hand strength, mobility, balance, and quality of life in persons with Parkinson's disease who exercise, and those who do not exercise. The study will help us to better understand the effects of exercise on the progression of Parkinson's disease. You must be able to travel to the University of Indianapolis
> for research sessions over a span of two years. Contact Dr. Stephanie Combs, PT,Phd, NCS, 317-788-3523. or email at scombs(AT)uindy.edu if you are interested.
WHAT: AARP 55 Alive Defensive Driving Class
WHEN: 10:00 am - 3:00 pm, Wednesday, October 12, 2011
WHERE: Community Center 233 W. Main St . Ft. Wayne
A One day driving course for seasoned drivers.
This is an "open" course so you do not need to be over 55 years of age to register.
Lunch break with your own sack lunch or at nearby fast food restaurants.
FEE: $14.00 or $12.00 for AARP members with AARP ID card. Make checks payable to AARP.
Registration deadline is October 5, 2011. Call the community Center 260-427-6460 to register or for more information.
Editor’s Note:
The articles you normally would find each month would complement the FWPSG topic for that month. However, this month you will find a list of assistive devices grouped so that you can find the help for the particular need you may be facing this very day or perhaps next week. This resource may alert you to products you were not aware were available for help. It may also be beneficial as a guide to select the right jargon to help locate and ask for these products my name, so that you can find just the right assistance for the Parkinson’s person under your care. Members who receive this by email should be able to click and go right to the webpage. Happy hunting. And for more ideas you will not want to miss the coming meeting for more great ideas. We will see you there.
Assistive Devices to Help People with Parkinson’s disease.
Caregiver Resources
· Family Caregiver Alliance
· National Family Caregiver Association
· Family Caregiving 101
· Caregiving.com
· Alzheimer's Association
· Choice Advisory Services
Eldercare advisors
· Assist Guide Information Services
Eldercare, Long-term Care, and Caregiving
· Lotsa Helping Hands
An online scheduling tools for caregivers
Devices to Help with Activities of Daily Living
Adaptive Clothing
· www.blvd.com
Assistive, Medical, and Exercise Devices and More
· www.makoa.org
· www.dynamic-living.com
· www.seniorsuperstores.com
· www.liftchairs4less.com
· www.make-life-easier.com
· www.maxiaids.com
· www.ustep.com
Chairs
· www.phc-online.com
· www.liftchairs4less.com
· www.spinlife.com
Computer assisted aids and other devices
Adaptive Technology Resources
· Assistive Technology for Computers and Printed Material
This site provides links to articles and assistive technology resources for people with disabilities.
· AssistiveTechnologies.com
Assistive Technologies strives to remove the "dis" from disability and encourage each person's ability through the implementation of modern Technologies.
· Microsoft Accessibility Resources
Microsoft Accessibility makes the computer easier to see, hear, and use. Discover what's possible with Accessibility Today and read inspiring Profiles of Accessibility in Action.
Assistive Technology Product Reviews
· Who Should Use an On-Screen Computer Keyboard?
· New Mobility
A great site to read reviews on the latest assistive technology devices from actual users.
Assistive Technology Products
· MagicCursor 2000-Alternative Clicking Solution
MagicCursor 2000 is for people who can't, or don't want to click the mouse button. MagicCursor 2000 performs all the mouse button functions automatically through software. All you need to be able to do is point: MagicCursor automatically takes care of the rest. It is an ideal companion for the Tracker head operated mouse products. Instead of clicking the mouse button, simply dwell over the item you want to select. After a preset amount of time, MagicCursor will automatically perform the click for you. Compatible with Windows Vista,XP, and 2000. For people using a headpointer like Tracker who have difficulty using a standard mouse to supply mouse clicking functions, including individuals with Quadriplegia, Cerebral Palsy, Multiple Sclerosis, Muscular Dystrophy, ALS, Carpal Tunnel Syndrome and any other disability where the user has little or no control of their hands to use a standard mouse.
· Dragon NaturallySpeaking
Dragon NaturallySpeaking, the world’s best-selling speech recognition software, gives you everything you need to be more efficient with your PC.
· SteadyMouse
SteadyMouse is free software designed to assist people with hand tremors commonly associated with Parkinson's and other neurological disorders.
· Jobs Access with Speech (JAWS) for Windows
For Windows 95, 98, ME, 2000, XP, and Vista, this popular screen-reader can pronounce American English, Brazilian Portuguese, British English, Castilian Spanish, Latin American Spanish, Finnish, French, German, and Italian.
· WindowEyes Professional
A widely-used screen-reader for Windows 95, 98, ME, 2000, XP, and Vista that supports speech synthesizers and over Braille displays.
· Apple's Tiger & Leopard Operating Systems for Mac
Includes a variety of accessibility features that allows those with vision, hearing and motor skills disabilities to more easily use their Macintosh computer.
· iBraille
A user friendly Braille editor for Macintosh users.
· Google Accessible Web Search for the Visually Impaired
Google search with audio component.
· WebAnyWhere
A web-based screen reader that enables blind people to access the web from any computer with a sound card.
· BrailleConnect 12
This 12-cell refreshable braille display can be used to write and read SMS text messages and operate your mobile phone or PDA.
· Vocal-Eyes
Designed to enhance career opportunities for the visually-impaired by providing fast and flexible access to the wealth of software used by business and professionals.
· Books-To-Burn
A text- to-speech file for making books on CD on Macintosh computers by translating text files into audio files that can then be converted to mp3's.
· EmacSpeak Complete Audio Desktop
A free text-based UNIX system which works with Emacs that can speak the information on visual screen displays.
· e-Speaking Voice and Speech Recognition
Enables you to control your computer, dictate e-mails and letters, and have your computer read documents back to you.
· Lynx 2.8.5
A free text-mode browser with voice-synthesizers and Braille-based technology, Lynx works on diverse platforms including MacIntosh MacLynx, Windows, DOS, UNIX, and VMS.
· Proloquo 2.0
With speech to iPod-ready iTunes tracks and quick voice access, Proloquo offers a multi-lingual speech and communication system for Mac OS X users who cannot speak.
· IBM Easy Web Browsing
Helps people with limited vision access Web content more easily.
· Speakup for Linux Operating System
Provides access to all console programs for Lynx, Pine, and GNU/Linux operating systems.
· Hal Screen Reader
For Windows 95, 98, Me, NT4, 2000, XP, and Vista, Hal includes the Dolphin Orpheus Speech System and Microsoft's MSAPI Speech Synthesizer that can pronounce words in English, Dutch, French, German, Italian, Spanish, and Swedish, as well as Grade 1 and 2 Braille.
· Brailliant 24
A 24-cell refreshable Braille display that serves as a Braille terminal for PC screen readers.
· BrailleSurf 4
Offers English, French, and Spanish versions of its Internet browser for Windows 95, 98, NT, and 2000 that displays on a Braille bar or can be spoken by a speech synthesizer.
· Supernova
Offers magnification, speech and Braille support to give people with visual impairments the ability to access Windows.
· EIA Web Browser
A specialized Web browser, suitable for touch-screen systems, with fully integrated Web awareness, assessment and training modules.
· LightWriter
A text-to-speech communication aid for people with speech impairments offering a dual display option, choice of keyboard layouts and languages.
· LunarPlus Screen Magnifier
Offers people with visual impairments the advantage of speech output.
· The Magnifier
Offers 2x – 10x screen magnifier amplification for Windows 3.x, 95, 98, NT, Windows 2000, and Vista that can be positioned anywhere on your computer screen.
· ZoomText 9.1
Level 1 provides 2x – 16x magnification, Level 2 provides synchronized magnification and screen reading. Works with Windows Vista, XP, ME, 2000, NT4, 98, 95, and DOS.
· Kurzweil 1000
A system for scanning books and other printed materials into a computer and then speaks it aloud through a voice synthesizer.
· Cicero Text Reader
This device turns a computer or scanner into a reading machine for people with a visual impairments. Documents placed on the scanner can be translated into speech or Braille.
· OpenBook 6.0
Allows books and text embedded in graphics to be spoken back through a voice synthesizer, including the ability to create MP3 and WAV file as well .brf and .brl Grade 2 Braille formats.
· Telesensory Ovation
Scans and translates text from books and other printed matter into speech.
· i-Scan
This document reader includes a DEC talk Voice, an OCR reader, a flat bed scanner, a computer, and a screen reader.
· Poet Compact: Scan & Read Standalone Reader
This compact machine includes an internal hard disk, flat bed scanner, a text recognition program, and a speech synthesizer.
· SARA Scanning & Reading Appliance
Scan reading materials and have them read back to you as continuous read, line-by-line, word-by-word, or letter-by-letter. Includes 29 voices in 19 language dialects and 12 major languages.
· Click-N-Type Virtual Keyboard 3.03
A free Windows and DOS application that displays a virtual on-screen keyboard for people who cannot type using a physical keyboard.
· QPointer Keyboard
Use your keyboard as a pointing device to perform computer operations without taking your hands off the keyboard.
· Flexiboard
Built-in optical overlay-detection, allows the keyboard to detect which overlay is placed on top of the keyboard. Overlays can be changed without commands to the computer thus allowing users to handle a large range of overlays independently.
· KeyStrokes 4 for the Mac
A virtual on-screen keyboard that allows you to type using a mouse, trackball, head pointer or other mouse emulator to type characters into Macintosh applications.
· Dwell Clicker
A free utility for people who can move a mouse but have difficulty clicking the mouse buttons.
· Dasher
Data entry interface driven by a mouse, stylus, or eye-tracker.
· BigKeys
Offer keys that are 4 times larger than a typical keyboard and works with both Windows and Macintosh computer.
· Magic Wand Keyboard
Windows or Macintosh keyboard with built-in mouse that allows people with disabilities easy access to the Internet, e-mail, and computer programs with a hand-held wand or mouth-stick.
· VirtualKeyboard for Macintosh
An on-screen keyboard that offers point-and-click typing using pointing devices such as a head pointer, mouse, trackball.
· SmartNav
A hands-free mouse for people with carpal tunnel, RSI and other disabilities allowing you to control your computer by simple head movements.
· EyeGaze Communication System
Enables people to use their eyes to operate a computer or telephone.
· VisionKey
Combines an eye tracker and a viewer that measure the position of the eye. Users look at a specific word, letter or character in front of their eyes and "type" by holding their gaze until a selection is confirmed by light and sound.
· Assistive Mouse Adapter
Filtering unintentional movements caused by hand tremor, this device allows for much smoother movement of the cursor for improved accuracy of mouse operation.
· Boost Tracer
Improves mouse control for people with Quadriplegia, CP, MD, MS, ALS, CTS and other disability where lack of hand control does not allow you to use a standard mouse.
· Quadjoy Mouse
Mouse for quadriplegics with all of the functions of a standard 5-button mouse or wheel mouse.
· Headmaster Plus
This head pointing device provides full mouse control of computers for persons who cannot use their hands. Compatible with Macintosh, IBM 2 or 3 button serial mouse, or IBM PS/2 mouse.
· Smart-Nav AT Package
A hands-free cursor control system for people with ALS, spinal cord injuries and other disabilities.
· HeadMouse
Wireless head-pointing device for Macintosh and Windows includes a "sip-and-puff" switch.
· NaturalPoint Head-Tracking Mouse
A hands-free mouse alternative that connects to your computer through a USB port allowing precise cursor control through simple head movements.
· TrackerPro
Computer device takes the place of a mouse for people with little or no hand movement.
· Skipper
This free package for Linux describes simple sensors allowing people with severely limited or involuntary movements to operate a computer.
Medication Reminder Alarms
· http://www.epill.com/
Personal Security and Alert Systems
· http://www.x10.com/security/personal_alert.html
Products for Eating, Dressing, Toileting, Etc.
· www.disabilityproducts.com
Recreation
· http://www.landeez.com/
Circulation
· www.healthylegs.com
Driving
· http://www.dol.wa.gov/driverslicense/seniors.html
Exercise
· "Motivating Moves for People with Parkinson's"
Video and DVD featuring seated exercises, now available through the Parkinson Foundation of the Heartland. Cost: $19.95.
Their website has viewable samples. (You need either QuickTime or Windows Media Player plug-ins to view the samples.)
· "Parkinson's Disease & The Art of Moving"
Oakland-based John Argue's exercise book and video/DVD for PD patients. Cost: $19.95 book, $47 DVD or video.
A few of the exercises are intended to be done seated.
· "Move It! An Exercise and Movement Guide for Parkinson's Disease"
Book and DVD for PD patients developed by Kevin Lockette, a Hawaii-based physical therapist. Cost: $40.
Some of the exercises are meant to be done while seated.
Incontinence
· www.dmponline.com
· www.geriatricstore.com
· www.woodburyproducts.com
PD Information and Support
· American Parkinson Disease Association
· National Parkinson Foundation, Inc.
· Michael J. Fox Foundation
· Northwest Parkinsons Foundation
Prescription Assistance
· Partnership for Prescription Assistance (PPA)
(800) 477-2669, info(AT)pparx.org
This organization researches the various drug assistance programs currently available and helps find
programs to help lower medication costs.
· NeedyMeds.org
www.needymeds.org
This web-based service shares information on cost saving ideas and includes drug coupon programs,
disease-specific assistance programs, information about discount drug cards and more.
· TogetherRx
(800) 444-4106, www.togetherrxAccess.com
This pharmaceutical sponsored program offers a 40-60 percent discount on certain brand name and
generic medications for those who do not have prescription coverage.
· Parkinson's Disease Foundation (http://www.pdf.org/en/saving_meds)
This organization provides some guidelines for reducing medication costs and lists pharmaceutical
companies that currently have drug assistance programs.
· Rx Help
(866) 906-9497
This organization provides drug discount cards.
· Rx Assist
(401) 729-3284, www.rxassist.org
This organization has information about patient assistance program and drug discount cards.
· Extra Help with Prescription Drugs For those on Medicare
www.ssa.gov/prescriptionhelp Phone: 1-800-772-1213
· Patient Advocate Foundation - Co-Pay Relief
www.copays.org
Seniors
(Resources for Seniors with or without PD)
· www.seniorservices.org
· www.scn.org/seniors/
Speech and Hearing
Lee Silverman Voice Treatment
· www.lsvtglobal.com
Music Therapists
· www.cbmt.org
Voice Amplification/Hearing Aids
· http://www.tedpa.org/member/washington_telecommunication_equipment_distr...
· www.consumer.att.com/relay
· www.maxiaids.com
Vision
· www.independentliving.com
· www.maxiaids.com
We are now meeting for exercise on Mondays and Wednesdays
10:30 a.m. in the usual place.
We hope newcomers will choose the Monday class, as the Wednesday class is running at, or near, capacity of twenty-five participants.
Doug and Marcia Lary
Familiar Faces say “Hello” to their PSG friends in Fort Wayne
Members, Bill and Mary Stratton paid a visit to the Lary’s in their new Oregon residence. They found the Doug and Marcia well and busy. Doug provided the leadership for our group before passing it on to our current leader, Dan Spangler. The Lary's moved to Portland, Oregon to be near their daughters and their grandchildren. We were invited to a gourmet dinner at their community dining center, where Doug shared the details of his busy life there in the community.. He continues to create woodcarvings of his loved one, which you can see in the picture behind Doug. Not only is he carving, but working with genealogy and facilitating that group. In addition, he leads the Parkinson’s group and the exercise class. Doug also finds time once a month to pastor at the complex. In the workout room he has recently achieved a milestone of lifting 1 million pounds and is well on his way to the 2 million pound goal. Marcia is also enjoying their new lifestyle because everything that they need is just around the corner and readily accessible. A big thanks to Marcia and Doug for showing us the new home.
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