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Gayle’s Story (so far): A Care Partner’s Perspective

November 5th, 2014 by Guest Blogger

A care partner’s perspective about the things you learn living a life with Parkinson’s disease

By David M. Maloney, Husband and Care Partner, PUW Team Nashville

Gayle-and-David-one-image

David and Gayle Maloney

My wife Gayle was diagnosed with Parkinson’s disease in 1998 – 37 years old, two young children, and a husband trying to be supportive.

I don’t know how I would react if I had been diagnosed with Parkinson’s disease but Gayle’s reaction was no surprise.  She met the disease with determination, optimism, courage, and grace.  She was determined to lead a normal life.  She was confident that a cure would be found.

For almost ten years, Gayle’s medications were managed and allowed her to lead a somewhat normal life.  But those meds that we had been told would stop working, did.  Not all at once and not all of the time.  Shortened length of effectiveness.  Unpredictable dose failures.  Or, just as difficult, medication side effects such as uncontrollable excessive movement called dyskinesia.  We were fortunate.  Gayle was a good candidate for Deep Brain Stimulation (DBS) surgery.  Almost twelve years to the day following her diagnosis, Gayle underwent bilateral DBS surgery.

To say the surgery was a success is an understatement.  It was life changing.  Gayle got her life back, but we know that the underlying disease is still progressing.  Without DBS, her life, our lives, would be much more difficult.

Parkinson’s disease is a progressive disease without a known cure.  Our life with Parkinson’s has also been progressive.  With Parkinson’s having been part of our life now for 16+ years, it is difficult to remember our life without it.  Our life and a life living with Parkinson’s disease are the same.

Initially, there is the shock of hearing that the person you love has a disease that does not have a cure.  You first want to learn everything possible about the disease – surely people are working on a cure.  They are, but a cure takes a long time.  You learn to accept setbacks and settle in for the long term.  You think about the future differently.  You have to have direct and honest discussions about doing things now versus waiting until a future where doing some things may not be possible.  You have these discussions in addition to all of things that all families face and you have to have them with a partner whose emotions have become a little more fragile.

You adjust by doing small things like going to matinee movies because your wife can’t stay awake in the evening.  You plan for travel differently because she can no longer drive any significant distance by herself.  You want to help your loved one.  You learn to balance your desire to help, to speed things up, with the person’s desire, sometime stubbornness, to be independent and do things for themselves regardless of how long it takes.

Following DBS surgery, Gayle’s speech became more slurred.  This, coupled with the soft tone associated with Parkinson’s, often makes it difficult to understand her.  We have an ongoing dialogue about my “selective hearing” and her speech.

You also discover that unlike a single entity that was the beneficiary of the wildly successful ALS ice bucket challenge this summer, that there really isn’t a single voice for Parkinson’s disease.  You wish there was a single national entity for focused attention.  The Parkinson’s Unity Walk and Parkinson’s Action Network come the closest to being that entity.

Finally, you realize that this is your life together.  All people and all families face difficulties in life.  Living with Parkinson’s disease is just one of the things that makes our life a little bit unique.  Whether it is because of Parkinson’s disease or because I’m now older (I suspect a little of both), above all, you learn patience and hope.  You learn to appreciate all of the moments, both the large and small, of the life that you are living together.  You learn that people want to help and that you and your family can help others by participating in clinical trials, raising funds for research, by being available to them to listen, and by sharing your experience.

Caregiver Roundtable

November 4th, 2014 by Parkinson's Unity Walk Team
Double-photo-Booker-roundta

Photos are in Courtesy of the Parkinson’s Action Network and Lisa Paillex Griffin

On October 22nd, Sen. Cory Booker (D-NJ) and Rep. Bill Pascrell (D-NJ) hosted a roundtable on caregiving in Englewood, New Jersey. Sen. Booker and Rep. Pascrell also recently sponsored legislation about caregiving. The legislation called In-Home Caregiver Assessment Resources and Education Act or In-Home CARE Act would create a caregiving grant program to allow eligible organizations to carry out home visiting programs for unpaid caregivers.

Unity Walk participants and Parkinson’s Action Network (PAN) Assistant State Directors for NJ, Lisa Paillex Griffin and Joe Narciso were in attendance along with Joe’s wife, Charlene. For Lisa and Joe, this caregiver bill would have a direct impact on their lives. Lisa has been a caregiver for her father who has Parkinson’s disease and her mother, who recently passed and also had Parkinson’s.

Charlene shared her experience as a care partner, but also stressed the uniqueness of her situation. Unlike many of the people often thought of as care partners, Charlene is the care partner to someone who is not elderly. Her husband, Joe was diagnosed 13 years ago at the age of 33. She said that it was very difficult to not only find resources for younger people affected by chronic illness, but also for her young family.

Charlene found the roundtable very worthwhile. “I now know what Joe feels like at PAN events, when he gets to hear that people experience what he experiences,” Charlene said. “It felt like I had 1,000 pounds lifted off my back. I carry that and I didn’t even know it until I was there.”

Learn more about the advocates’ participation in the roundtable about caregiving via PAN’s site.

Resources for People Who Care for Someone with Parkinson’s

November 3rd, 2014 by Guest Blogger

by Cathy Whitlock, Director of Online Communications, National Parkinson Foundation

Caregiver blog graphic NPF
Taking care of someone with Parkinson’s disease (PD) is a journey. It is natural to have a lot of concerns and questions, and to look for outside support. Whether your loved one’s diagnosis is recent or you are a seasoned care partner, the National Parkinson Foundation (NPF) has resources to help you navigate the various challenges that may arise:

  • Toll-free Helpline: Call NPF’s bilingual Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org for answers to all of your questions about caregiving, referrals to health professionals and community resources, or emotional support. All calls are confidential and answered by nurses and social workers who are trained experts in Parkinson’s.
  • Caring and Coping Manual: Written for caregivers, this free book profiles caregiver roles and activities. Topics include what to expect, care options, activities of daily living, legal and financial planning, and a special section on taking care of yourself as a caregiver. Order your free copy at www.parkinson.org/store.
  • PD Library: The PD Library contains a number of articles, checklists, books, DVDs, videos and more that cover a wide variety of topics concerning caring for a loved one with Parkinson’s. Browse these valuable resources at www.parkinson.org/library.
  • Caregiver Forum: NPF’s online forum is a place where caregivers of people with Parkinson’s can connect, converse and address their unique concerns. Join the forum at www.parkinson.org/forums.
  • Parkinson’s Central Smartphone App: This free, easy-to-use smartphone app gives people with Parkinson’s and care partners access to PD-related information wherever and whenever needed. Download the app at www.parkinson.org/parkinsonscentral.

The National Parkinson Foundation is also here to help you maintain the balance between your daily caregiving activities and your commitment to taking care of yourself. These tips can make daily activities run more smoothly and help reduce caregiver stress and fatigue:

  • Take “me” time. You need to take care of your physical and mental health. That means getting plenty of sleep, eating healthy, exercising and socializing with friends.
  • Embrace technology. From health apps and health tracking tools to medication reminders and assistive devices, you can make your day-to-day routine easier by exploring technology options beyond the Internet.
  • Make small changes. Simple things like using satin sheets on the bed to facilitate turning can help make your days go more smoothly. Special kitchen utensils, such as easy-to-hold angled utensils and high scoop plates, can make mealtime easier.
  • Get the help you need. Family, friends and neighbors can all be a source of ongoing support. But if they can only help out in a pinch, consider hiring a cleaning service or home health aide.

Caring for someone with advanced Parkinson’s? Find yourself having more questions than answers? This November, NPF will launch CareMAP, (Managing Advanced PD), an online space where people who provide homecare – from family caregivers to paid caregivers to those who provide care from a distance – can receive helpful guidance.

For more information, visit www.parkinson.org, or call the NPF Helpline at 1-800-4PD-INFO (473-4636).

We Are Making Progress

October 16th, 2014 by Guest Blogger

By Carol Walton, CEO, The Parkinson Alliance

PUW2014IMG_4838

Carol Walton speaking about research at the 2014 Parkinson’s Unity Walk

Taking a step back to see how much Parkinson’s disease research has progressed

Every few years I believe that you need to step back and look at how Parkinson’s disease (PD) research has progressed.  Research takes so long and costs so much that sometimes it gets discouraging—but in the past few months I have read about some wonderful projects that tell me every penny we have spent on research has been well worth it!

Margaret Tuchman, President of The Parkinson Alliance, had Deep Brain Stimulation (DBS) almost 15 years ago.  The difference between what she went through over a decade ago to have this surgery and the practices and technology that are available today is amazing.  The Parkinson’s Unity Walk is funding research today that will potentially advance DBS even further, where if successful the outcome will be customized DBS in the future.  Many of you may have dogs that have a little chip put under their skin in case he/she gets lost for identification.  Technology is progressing towards that someday we will have a chip inserted into the DBS systems that will sense when your body needs electrical stimulation—what part of your body needs it and how much you need!

The National Institutes of Health (NIH) just funded a multi-center consortium collecting and analyzing thousands of pieces of data to develop a “global” view of neuromuscular diseases.  Dr. Clive Svendsen, professor and director of the Board of Governors Regenerative Medicine Institute, compared this shift in perspective to the way meteorologists began predicting weather years ago—viewing global trends and collecting vast amounts of data to create a forecast for a specific place and time.

As many of you know, falling and freezing of gait (FOG) are two of the major challenges in Parkinson’s disease.  In some cases, that one fall is enough to cause problems for many years.  We are currently funding a fascinating project entitled: What Patients Look at When Walking.  The focus of this project is an eye tracking machine that allows patients to walk freely, and records a video of what is in front of the patient and then indicates exactly what the eyes are focused on.  Hopefully, the knowledge we gain from this project will help prevent some of the falls and FOG for people with Parkinson’s and that will greatly enhance quality of life.

Sinemet, (carbidopa-levodopa) is still the gold standard of medication for Parkinson’s.  Today we know of at least four new delivery systems for this miracle drug.  Some medications will be able to provide 24/7 continuous delivery resulting in less “off” time for those living with PD and others will act as a rescue drug for people with Parkinson’s.  Drugs that are already approved by the Food and Drug Administration (FDA) are being tested to determine which ones might help people with PD.  The following are some examples:

  • Cynapsus is developing APL-130277, an easy-to-administer, fast-acting reformulation of apomorphine, in a sublingual (oral) thin film strip for the acute rescue of “off” motor symptoms of Parkinson’s disease.
  • Civitas Therapeutics is currently testing an inhaled version of Levodopa, called CVT-301, which reduces tremors and reduced movement caused by Parkinson’s disease and can be used as a “rescue” drug.
  • Impax Pharmaceuticals has submitted a New Drug Application with the FDA for Rytary, an investigational extended-release capsule formulation of carbidopa-levodopa for the treatment of idiopathic Parkinson’s disease.
  • NeuroDerm’s ND0612L and ND0612H for treatment of moderate and severe PD respectively, are both in clinical trials.  The delivery systems administer Levodopa subcutaneously through a small belt-worn pump similar to the administration devices used to deliver insulin to diabetic patients.  A second generation product, using a patch pump to deliver LD/CD, is under development.

Progress is being made and although we all want to know the cause and cure, we have many therapies to help with quality of life until we have the ultimate answer.  Research is so critical and we must keep up the fight because we are making progress.

This guest post was written by Carol Walton who is the CEO of The Parkinson Alliance, as well as the Executive Director of the Parkinson’s Unity Walk. 

Donation Dollars are at Work—A Highlight of 2014 Unity Walk Research Grants That are Underway

October 16th, 2014 by Helaine Isaacs, Event Director
100% of donations to the Parkinson's Unity Walk goes to seven major U.S. Parkinson's disease foundations

100% of donations to the Parkinson’s Unity Walk goes to seven major U.S. Parkinson’s disease foundations

The fall is an exciting time of year at the Parkinson’s Unity Walk. The foundations benefiting from the funds raised at the Unity Walk submit their research proposals for the current year as well as provide updates on research projects conducted for the past two years. Proposals and updates are posted here on our website and available to all.

Research funded by the 2014 Unity Walk focuses on a wide range of topics. We continue to fund research that will take us closer to finding a cure for Parkinson’s disease and at the same time, fund research that will improve the quality of life of those who are living with Parkinson’s.

Here are just a few examples:

Levodopa-induced dyskinesia is one of the most debilitating symptoms associated with Parkinson’s disease. The Parkinson’s Disease Foundation is funding a research project to determine if a specific calcium channel in the brain contributes to Levodopa-induced dyskinesia, and whether silencing, or blocking this channel can alleviate these symptoms. If the research supports their hypothesis, it will provide a critical scientific rationale for design of clinical trials of current and new drugs to block this channel.

Research has proven that exercise improves the quality of life for those living with Parkinson’s disease but what kind of exercise will improve cognitive functioning, balance deficits, and aid in prevention of falls and injuries in PD? These are the specifics that the National Parkinson Foundation will study to compare the effects of skill-based vs. aerobic exercise vs. a control group. Post exercise changes in cardiovascular fitness, as well as executive functioning and cognition will be measured. Their hypothesis is that skill-based exercise will have the greatest improvement in executive functioning and lead to modification of the brain. We are interested to see what the research finds.

Currently, changes to Deep Brain Stimulation (DBS) only take place during a clinical appointment or within small ranges by a patient at home. What if research can help develop an adaptive or “intelligent” DBS that would record brain activity in real time and adjust the stimulation that responds to real time recordings of a patient’s movement and brain? The Michael J. Fox Foundation for Parkinson’s Research is using their funds to study this question; they will use a research tool to establish a connection between the implanted neuro-stimulator and an external computer that will allow for recording of brain activity in real time. The results of this research will help create the next generation of embedded adaptive neuro-stimulators used in DBS treatment.

Learn more about additional research projects funded by the 2014 Parkinson’s Unity Walk grants. It is your donations that make this research possible. Thank you for your continued support!

By Helaine Isaacs
PUW Event Director