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.
