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Archive for the ‘Guest Post’ Category

Lifelong Journey as a Care Partner

Friday, November 7th, 2014

by Edna Ball, Care Partner and Co-founder, Team Parkinson

Edna and John Ball

Edna and John Ball

When I was 11 years old my mother was diagnosed with Parkinson’s disease (PD) at the age of 48, and so began what was to become my life long journey as a care partner. My mother lived with PD for 37 years. I also married a man who after our 10 year anniversary was diagnosed with the same disease. My husband now has had PD for over 40 years.

When this journey first began the term for me, and thousands of others, was caregiver. In recent years the term has evolved to care partner. This is a really important distinction because to achieve the most success, a working partnership is essential.

Over all these years I have learned some valuable lessons. The most important is that open and honest communication is vital. None of us are mind readers, and it is crucial for both the care partner and the person with PD, to have the freedom to express themselves without fear of hurt feelings. Walking on eggshells all the time in fear of stressing the other out is even more stressful than getting feelings off one’s chest and then dealing with the issues at hand. And stress is bad for all concerned. Honesty, mixed with kindness and compassion, is key.

It is also extremely important to take care of your own physical, mental and emotional health so that you can be fully present in the care of your loved one. Sometimes that means taking a break from the day-to-day grind. And that in turn might mean asking for help. Asking for help when you need it, without guilt, is one of the smartest things you can do. Surround yourself with family and friends who can chip in when needed.

Educate yourself about the disease, participate in support groups but don’t go overboard and don’t let PD become an obsession that robs you of all the good things you can and should still enjoy. Read about the latest research up to a point, accompany your loved one on doctor’s visits, and keep a current list of medications with you. Do whatever is necessary to stay on top of things, to be prepared and thereby to reduce your own level of stress on a daily basis.

John-Edna

John Ball with wife and care partner, Edna — at the Parkinson’s Unity Walk representing Team Parkinson

But always remember that not everything in the health of your loved one is about Parkinson’s. There is the normal aging process that visits all of us, care partners included, and it’s good to remember that and not get bogged down thinking everything is the fault of PD. And remind your loved one of that too as you work together on this mutual path to a better and easier existence.

If you practice mutual respect and maintain a sense of humor, life with Parkinson’s disease will be easier. Always remember that every day may not be good, BUT there is something good in every day. Give yourself permission to recognize that goodness and enjoy it.

You can learn more about Edna Ball’s journey as a caregiver and her work with Team Parkinson, via Team Parkinson’s website team-parkinson.org.

Caring From a Distance

Thursday, November 6th, 2014

By Sara Beam, Caregiver and PUW Supporter/Volunteer

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Joan and Jack Beam (L); Jack Beam and daughter, Sara Beam (R)

My Dad, now 83, was diagnosed with Parkinson’s in his mid-60s. He has remained remarkably active, both physically and socially, despite a steady worsening of symptoms over the years, which Deep Brain Stimulation (DBS) surgery a few years ago helped improve for a time.  However, a major component of managing his disease well was the steadfast, strong support of my Mom as his caregiver.  That changed dramatically when she was diagnosed unexpectedly with stage 4 terminal cancer in August of last year.  We couldn’t replace her excellent care, but as her ability to help my Dad diminished, my brothers and I learned to work together from afar to care for the both of them.

While one of my brothers and I were able to make frequent visits to their home in North Carolina from Texas and New York, respectively, much had to be done remotely.  Frequent phone calls were critical to help coordinate needed support and both their medical appointments.  But, with my Mom’s memory damaged by her disease, and my Dad’s cognitive and memory issues exacerbated by the stress of the situation, more help was quickly needed.  My brother from Massachusetts and his wife looked into care agencies in North Carolina and found a good one through online resources, which my parents reluctantly and sparingly began to use.

My Dad had never learned how to use email, another thing that my Mom took care of for him.  But, we still needed to communicate with him quickly in written form to compensate for his memory issues.  The initial solution was giving them a fax machine, so I could send reminders of doctors’ appointments, flight schedules for visits, etc.  Later, we also started using remote computing, so that I could access my parents’ home computer from anywhere to print clear, large-print copies of documents for my Dad, whose eyesight had worsened significantly in the past year due to his Parkinson’s.  We automated the few remaining monthly payments that my Mom hadn’t already done, so my Dad didn’t need to start writing checks on a regular basis.  By setting up online access for their bank and credit cards, I was able to monitor their accounts from afar.

As my Mom’s condition worsened, we convinced my parents that they needed more help from professional caregivers.  By the time my Mom passed, my Dad had gotten used to the caregivers and was willing to keep them in place for ten hours a day.  But, it soon became apparent to him and us that living in the house without my mother’s care was too much for him, as he began to have more falls and his reliance on the professional caregivers grew.  After much research by my brother and his wife, my Dad decided he would move to an assisted living facility in Massachusetts.  In August, five months after my Mom’s passing, I drove him 850 miles to his new home, just a few minutes away from one of my brother’s home.  He would now get to live near his only grandchildren.  It’s rare that anyone skips their way happily in the door to assisted living and he’s still adjusting to life there, but he’s confident it was the right choice for him.

This guest post was written by Sara Beam, who has been a longstanding supporter of the Parkinson’s Unity Walk–especially as a volunteer on Walk Day.

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

Wednesday, November 5th, 2014

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.

Resources for People Who Care for Someone with Parkinson’s

Monday, November 3rd, 2014

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

Thursday, October 16th, 2014

By Carol Walton, CEO, The Parkinson Alliance

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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.