Aug 18 - Nurse Practitioner Natalie Eddy with Porter Physician's Services at Westchester Medical Group, Chesterton, IN, will share her expertise on osteoporosis and it's influence on PWP.
Sep 15 - Doctors Tasha and Ronald Williams, Neuropsychologists,(no relation), will be sharing insights and expertise on Alzheimer's disease and how it relates to PWP.
October and November programs we are working on - constipation, podiatry, and/or optometry.
June Meeting
CARING AND SHARING
In keeping with our policy of confidentiality, we never divulge topics nor contributors from these sessions. One of the reasons these sessions are so popular is that no one worries that personal information is going to be tossed about without concern for the feelings of others. There is a healthy respect for others and their difficulties with Parkinson's.
We want to continue to project this feeling of support we have for one another, so we work at encouraging each other to share their concerns. Almost always there is someone who has had a similar experience with symptoms, medicines, caregiver or PWP, frustration, finding answers and/or the emotion of it all.
We truly want every attendee to have a chance to share their problem, frustration or solution.. If you haven't experienced a caring and sharing session, look in your newsletter for the next scheduled future session. You will be glad you came.
A special "thank you" to Mrs. Marcia McKibben for moderating the caregiver’s session, and to Mr. Ed Gatke for his help moderating the session for PWPs.
A NOTE FROM DAN SPANGLER
IT’S OFFICIAL – We can now announce that starting MONDAY, July 11, 2011, we will have exercise class on both Monday and Wednesday mornings. Our class has outgrown the room on Wednesday, and we are changing to a Monday-Wednesday format. Classes on both days will be in the room we currently occupy. The time will be 10:30–11:30 a.m. on both days.
Currently the caregivers meet only on Wednesdays during exercise class. This will not change. We will address any changes with the caregivers group as the need arises. Turnstone asks that we limit the exercise participation to twenty-five on either day. Also, because of the increased numbers, fitness staff will assist in setting up chairs in the room so we will have maximum space between participants.
Because the caregiver’s class meets only on Wednesday, if it is at all convenient, and, if you normally come without a caregiver, please consider coming to the Monday class. This would allow for increased participation on both days. The cost will be $10.00 per month if you come once per week, and $15.00 if you come twice per week.
For those of you who have never been unable to come on Wednesdays, we encourage you to take advantage of the exercise program on Mondays.
TIPS TO MAKE YOUR LIFE BETTER By Ed Gatke
- · Purchase or make a holder for eyeglasses, flashlight, pencil, Crossword or Sudoku puzzle books, and other items. For your bed, create pockets on one end of a length of fabric about twice the length of the distance between mattress and floor. Place half of the material, the end without the pockets, between the mattress and box spring, allowing the pocket to hang down the side of the bed to hold your things.
- · For the armrest of your favorite chair, create your own saddlebag-style holder for TV and DVD remote control devices. To make a holder, select two hand towels that fit with your decor and room colors and sew them together at one end to make one long piece. Then fold up each end to create pockets to hold your remotes. If possible, divide one of the pockets in half and use it to hold a pencil and note pad. You may also want to secure your holder to the arm of the couch or chair with a few stitches or Velcro. You may find a commercial version of these holders in specialty catalogs, on the Internet or in discount department stores. It could also be a project for a grandchild or other natural helper to make for the PWP.
- · Purchase a universal remote control and program it to operate the TV, DVD player, VCR and stereo. Universal remote control devices cost around $20.00 and can be bought at most department or electronic stores. (Note: If you are as electronically challenged as I am, borrow your grand-child or ten year old neighbor to program the control for you.)
- · Use a large-button remote control if you have trouble with fine motor movements. This applies to telephones also; most cellular phones have tiny buttons that are difficult to manipulate as do some of the regular phones. Again, a phone with large button number pads can make it much easier to use.
- · Take a plain adhesive-backed label and write the cable channels and their numbers on it. Put the label on the back of your remote control where you can easily consult it.
- · Calming videos and DVDs can provide relaxation and rest. Those with nature themes can provide natural relaxation and entertainment for people with dementia. Many have soft music in the background or nature sounds like waterfalls and forest sounds. This can provide mini breaks for caregivers also. Be aware that you can have a constant supply of tapes and DVDs through the local library at no cost to the borrower.
- · Family videos and DVDs with familiar faces and voices provide comfort to one with memory loss. If a loved one is lost in the past, transfer old photos or memories of a time they remember to DVDs or videos. If you need help putting this together you can find help in the Yellow Pages under "Videos: Tapes and Discs".
- · Try some of these ideas to make your life easy.
CAREGIVER’S CORNER By Ed Gatke
Not from David Letterman--
The popular late night entertainer has made the Top Ten Ways To...
very popular. These top ten ways to care for yourself are ways that caregivers can better survive the process of caring for their loved one.
1. Keep a diary. Start today. Describe your fears as well as your hopes, the reality of what each day is like. Don't be afraid to write about the losses, big or small.
2. Stick with your diary. Let yourself record the little victories, go back and review the earlier months and years. Notice the personal, physical, emotional goals and successes you and your loved one have achieved.
3. Create a simple communication network. Think of this as a designated communicator. Choose a friend or a relative who will make all the calls and tell all the news when there are calls to make and news to tell. You may want to save the "big successes and wonderful news" sharing for yourself, but you will be worn out if you are constantly on the phone retelling the details of the last days or weeks over and over.
4. Let your friends help you. When someone asks, "Can I do anything for you?" give him or her something to do. Let your friend run an errand or stay with your loved one while you take a break and get out on your own.
5. Visit with people you love. You may often have to ask your family or friends to come to your house or keep you company while waiting for your loved one's treatment to be over. You need to be a whole person who has friends and interests and can think about something besides the responsibilities of caregiving. You shouldn't have to reinvent your life when your caregiving responsibilities subside.
6. Stay involved in your loved one's personal life. Be careful that your loved one does not slip from the role of loved one, family member or friend into the role of patient. Don't let yourselves lose the relationship you had prior to the need for caregiving.
7. Talk about it. There are innumerable fears and anxieties associated with any disease or illness which can and will tear a person apart. Talk to your friends and your loved one about your feelings. The worst thing you can do is build a wall around yourself to protect others.
8. Keep the romance alive. Couples facing caregiving situations are apt to forget to nurture the relationship that brought them together up to this point. These relationships need just as much, if not more attention, now that one of you is ill, than they did before.
9. Include your loved one in your changes. As time passes we all change in big and little ways. If you find a new friend, discover a new interest in a new genre of books or music, find a new recipe or a great place to eat, share these as much as possible with your loved one. Introduce your new friends, have them visit, if your loved one cannot easily leave the home. Spend time reading the new books aloud, listen to the new music together.
10. Keep setting goals. Before you were a caregiver you set personal goals. Your life did not end. Continue to set and achieve realistic goals.
From Today's Caregiver Magazine
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Turnstone
Turnstone has several activities going on throughout the summer and fall:
"Cruise -In" - August 20 - Come to Turnstone to see some neat old customized cars and motorcycles.
"Harley Motorcycle Raffle Drawing" - September 3
"Golf Outing" - September 8 - At Autumn Ridge Country Club.
"Corvette Raffle Drawing" - October 13
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.
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FDA Warns of Parkinson’s Medication Error
- Jun 27 2011The US Food and Drug Administration (FDA) recently issued a warning about errors in dispensing ropinirole (Requip ®), a common medication used for the treatment of Parkinson’s disease.
In some cases, people with Parkinson’s have inadvertently been given a different medication, risperidone (Risperdal ®), an antipsychotic medication used to treat mental illnesses including schizophrenia, bipolar disorder, and irritability associated with autistic disorder.
The Parkinson's disease Foundation (PDF) recommends that people with Parkinson's who are taking Requip be alert to this potential medication error and check with their doctor and pharmacist about their prescription. See the FDA’s full statement below for further information.
If you have further questions about this warning, call PDF’s Helpline at (800) 457-6676 between the hours of 9 AM EDT and 5 PM EDT
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Early News About Experimental Gel Form of Parkinson’s Medication
- Jun 15 2011
Abbott Laboratories has issued an announcement about the interim results of its on-going Phase III 54-week open-label, multi-site study, which tested the use of levodopa-carbidopa intestinal gel for treatment of advanced Parkinson's disease. This investigational therapy – which is pumped directly during daytime hours into the small intestine via a portable pump connected to a surgically-implanted gastric tube – is still being studied.
The interim efficacy and safety results, covering the first 12 weeks of study, were reported last week at the Movement Disorder Society 15th International Congress of Parkinson's Disease and Movement Disorders.
According to the company press release, the medication’s design is intended to lessen the spikes associated with oral formulations of the medication; spikes which can be associated with an increase in dyskinesias. The company also reports that adverse events occurred in 87.5 percent of participants and appeared to be largely related to the surgical procedure. Additionally, the company notes that the medication is currently approved for use in 38 other countries.
PDF notes that the data has not yet been published in a peer-reviewed journal, so we cannot yet comment on the data itself. Our Medical Policy Committee is monitoring the situation and will report when more information is available.
Please see the statement below for more information on this development.
Abbott's Parkinson's Treatment Shows Promise in Early Tests
(AP) — Drug developer Abbott Laboratories said Thursday preliminary results from a late-stage study of a potential Parkinson's disease treatment showed that it helped provide longer periods of relief from symptoms of the disease.
The North Chicago, Ill., company also said its levodopa-carbidopa intestinal gel also increased the time in which dyskinesias was well-managed. Dyskinesias involves involuntary movements tied to most treatments used to manage the disease.
Abbott is conducting a 54-week study of patients and released results to show what happened after 12 weeks. The company will receive results from another late-stage study around the end of the year and then determine the timing of a possible submission to the Food and Drug Administration for regulatory approval, a spokeswoman said.
The gel is infused directly into the small intestine during daytime hours through a portable pump connected to a surgically-implanted tube. It is already approved for use in 38 countries.
Parkinson's disease is a debilitating brain disorder that has no cure and causes tremors and movement problems.
Abbott shares climbed 46 cents to $51.99 in morning trading.
Source Date: Jun 09 2011
Source Publication: Crain's Chicago Business
Increased Risk of Melanoma for People with Parkinson’s
- Jun 06 2011
Having Parkinson’s disease (PD) may be associated with an increased risk of developing melanoma, the most serious type of skin cancer, according to research published in the June 7, 2011 issue of Neurology.
Many studies have suggested an association between Parkinson's and melanoma. But linking them definitively has been difficult because doing so would require studying a large number of people with both diseases, and such cases are relatively rare.
In the new research, scientists led by Honglei Chen, M.D., Ph.D., at the National Institute of Environmental Health Sciences, used a statistical technique to overcome this obstacle. The technique, called meta-analysis, allowed them to combine data from 12 previously published studies carried out between 1965 and 2010. Most of these studies included fewer than 10 people who had both PD and melanoma.
Results
· Men with PD were twice as likely as those without the disease to have melanoma.
· Women with PD were diagnosed with melanoma 1.5 times as often as women who did not have PD.
· No link was found between PD and types of skin cancer other than melanoma
What Does it Mean?
People with PD have a lower risk of developing most types of cancer than the general population. The current study confirms that melanoma is an exception—people with PD are at a higher-than-average risk of developing this form of skin cancer. This study further confirms that melanoma is very rare among people with Parkinson's, and only analyses of 12 studies combined, provided sufficient data to assess this link. Based on these findings and previously published literature, melanoma is very rare among people with Parkinson's.
Researchers once suspected that taking the Parkinson’s medication levodopa increased the risk of melanoma, but this has proven not to be the case. Rather, according to the study authors, several lines of evidence point to possible biological links between Parkinson's and melanoma, such as shared environmental or genetic risk factors, or common molecular pathways. More research is needed to evaluate these ideas. Whether more rigorous skin examinations and self-examinations of people with Parkinson's are required remains to be studied.
Source Date: Jun 07 2011
The above information concerning Parkinson’s disease was found at PDF.org
I can still get everything done that I want to in a day…
It just takes me a week to do it.
Books and Videos
300 Tips for Making Life with Parkinson's Disease Easier
By Shelley Peterman Schwarz (Demos Medical Publishing)
Caring for the Parkinson Patient: A Practical Guide 1999
By J. Thomas Hutton, Raye Lynne Dippel, and Nathan Slewett. (Paperback published 1999 by Prometheus Books.)
Defying Despair: Feed the Mind, Train the Body, Nourish the Soul
By Anthony Scelta Jr., How One Man Is Winning His Battle Against Young Onset Parkinson's Disease. ( Myson Publishing, Inc., 2004 )
Every Victory Counts - The Davis Phinney Foundation
Every Victory Counts™ is Davis Phinney Foundation’s new program for living well with Parkinson’s. The cornerstone of the program is a progressive, interactive manual co-authored by experts in the care of people with Parkinson’s with contributions from leading movement disorder experts. Developed to inform and inspire people living with the disease—including care partners, family members and clinicians—some of the most powerful lessons come from the more than 50 people with Parkinson’s who share their personal insights and experiences.
Getting Started: The Medical Research and Development Primer -- FasterCures
FasterCures offers this short, easy to understand backgrounder on the different stages of medical research required to develop a new drug, and on some of the hurdles that slow progress toward breakthroughs.
Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia
By Thomas B. Graboys, MD (Sterling Publishing, 2008)
Living with Parkinson's Disease
By Kathleen E. Biziere, MD, PhD, and Matthias C. Kurth, MD, PhD (Demos Medical Publishing)
Motivating Moves for People with Parkinson's
A seated exercise program on videotape and DVD to improve breathing, flexibility, sense of balance, vocal range and more.
My Grandpa Has Parkinson's
By Margot Grant Evans (Vantage Press, 2006)
Parkinson's Care Series
Eight-volume video tape series and training manual for professionals seeking to deliver optimal care for people with Parkinson's. Professionals can earn CEU credits upon completion of the modules.
Parkinson's Disease and Quality of Life
By Lucien J. Cote, Lola L. Srinzeles, and Robin Elliott (Haworth Press, 2000)
Parkinson's Disease and the Art of Moving
By John Argue (New Harbinger Publications, 2000)
Parkinson's Disease and the Art of Moving Video Companion
By John Argue. New Harbinger Publications, Oakland, CA, January 2000
Parkinson's Disease for Dummies
By Michele Tagliati, MD, Gary Guten, MD, MA, and Jo Horne, MA. Foreword by MJFF co-founder Deborah W. Brooks. (Wiley, 2007)
Parkinson's Disease: A Complete Guide for Patients and Families
By William J. Weiner, MD, Lisa M. Shulman, MD, and Anthony E. Lang, MD. (Paperback published 2001 by Johns Hopkins University Press)
Parkinson's Disease: A Guide for Patient and Family
By Roger C. Duvoisin, MD, and Jacob Sage, MD. (Paperback published 2001 by Lippincott Williams & Wilkins)
Parkinson's Disease: A Self-Help Guide
By Marjan Jahanshahi, MD, and David Marsden, MD (Demos Medical Publishing)
Parkinson's Disease: Diagnosis and Clinical Management
By Stewart A. Factor, DO, and William J. Weiner, MD (Demos Medical Publishing)
Parkinson's Disease: The Complete Guide for Patients and Caregivers
Abraham N. Lieberman, MD, and Frank L. Williams. (Fireside, 1993)
Parkinson's: A Patient's View
By Sidney Dorros. (Paperback published 1981 by Seven Locks Press)
Parkinsong
Parkinsong's "Songs of Hope" double CD features a superb collection of music from a virtual "who's who" of singers/songwriters, including Bonnie Raitt and David Crosby & Graham Nash.
Saving Milly: Love, Politics, and Parkinson's Disease
By Morton Kondracke. (Public Affairs, 2001)
Shaking Up Parkinson: Fighting Like a Tiger, Thinking Like a Fox
By Abraham N. Lieberman, MD. (Paperback published 2001 by Jones & Bartlett Publishers)
Silence of the Bunnies: Tales of Life, Love and Survival
By Dan Stark (Tewksbury Tales Press, 2007)
Take Me Home: Parkinson's, My Father, Myself
By Jonathan Taylor, Granta Books (London)
The Case of the Frozen Addicts: Working at the Edge of the Human Brain
J. William Langston, MD, and Jon Palfreman. (Random House, 1995)
Understanding Parkinson's Disease: A Self Help Guide
By David L. Cram. (Paperback published 1999 by LPC)
Voices from the Parking Lot: Parkinson's Insights and Perspectives
Compiled and edited by Dennis Greene, Joan Blessington Snyder, and Craig L. Kendell. (Published by The Parkinson Alliance, 2000)
\When Parkinson's Strikes Early: Voices Choices, Resources, and Treatment
By Barbara Blake-Krebs and Linda Herman. (Paperback published 2001 by Hunter House)
Taken from michaeljfox.org
Chair Yo-lates is a new exercise program beginning at Turnstone April 12ththrough May 18. Participation is open to all Turnstone groups including members of the Parkinson’s support group and exercise class. Call Candace Risch, Fitness Specialist at Turnstone for times, dates, costs, and a program explanation. 260-483-2100 ext. 277 or 290.
