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.
