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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).

PUW Memory Quilt is Done!

October 21st, 2014 by Helaine Isaacs, Event Director
2014 PUW Memory Quilt

2014 PUW Memory Quilt

Each year, the Parkinson’s Unity Walk has a drawing for the top 50 team captains. The winner receives a memory quilt comprised of team t-shirts from the current Walk. This year’s winner is David Lee, Team Captain of Team James Lee. The Walk has close to 500 teams and this is just a sampling of the creative team t-shirts that are worn proudly the day of the Walk. You can be in the running to win the memory quilt from the 2015 Unity Walk. All you need to do is register, get started on your fundraising and be among the top 50 team captains.

by Helaine Isaacs
Event Director

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. 

Your Dollars are at Work—2014 PUW Research Grants 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 (PUW). The foundations benefitting from the funds raised at the Unity Walk submit their research proposals for the current year as well as submitting updates on research projects conducted for the past two years. This information is posted on our website and shared with our supporters. We continue to fund research that will take us closer to finding a cure for Parkinson’s disease (PD) and at the same time, fund research that will improve the quality of life of those living with PD.

Research funded by the 2014 PUW focuses on a wide range of topics. Here are just a few examples:

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 as they 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 Clinical Research is using their 2014 PUW research 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.

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.

Read all the 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

Five Reasons I Advocate on Behalf of Clinical Trial Participation

October 2nd, 2014 by Guest Blogger

A Guest Post by Jean Burnsjean.burns.200

These are the reasons I have advocated on behalf of clinical trials for the past 12 years.

1.  Without clinical trial participation, there will be no new treatments.
2.  If people with Parkinson’s disease (PD) in the past had not participated, we would not have the treatments that we do.
3.  So future family members will not have to go through this.
4.  To help all people with PD everywhere.
5.  Because it might help you.

The first trial I joined was a phase 2/3 trial of a new drug that did slow progression or even stop it – in primates. This trial became notorious. The sponsor posted its premature ending on its website declaring the trial had failed and was over. FINISHED. They told none of the stake-holders. That experience was unsettling but it did not keep me from continuing to participate in future trials.

As a result of my participation in multiple trials over the years, I (or my data) are part of significant bodies of research. Coriell Cell Repositories, NIH’s Parkinson’s Disease Data Organizing Center, PDF’s Longitudinal and Biomarker Study in PD and NINDS’ Human Genetics Repository are just a few examples of the research that have benefited from my participation.

I am now patient #3 in a clinical trial funded by the National Institute of Neurological Disorders and Stroke – A Phase 1 Open-Label Dose Escalation Safety Study of Convection Enhanced Delivery (CED) of Adeno-Associated Virus Encoding Glial Cell Line-Derived Neurotrophic Factor (AAV2-GDNF) in Subjects with Advanced Parkinson’s Disease.

This Phase I clinical trial involving gene therapy and brain surgery is why my local family doctor calls me a “risk-taker.” Even though I don’t see myself in that way, I realize I have taken risks in participating in some Phase I clinical trials. As I tell my friends and families, it’s the one after the monkey trials end. This clinical trial involves risks to its human trial participants and requires a huge commitment of time and energy.

I am committed to participating for the next 5 years, and if my math is correct, during that time I will undergo the following:

  • 3 PET scans
  • 7 MRIs
  • at least 150 vials of blood
  • 3 lumbar procedures
  • 5 psych exams
    and
  • 60+ days traveling and in clinic days at the NIH (5 hour plane rides to and from Arizona)

You may have noticed that I use the phrase “human trial participant” in this blog. I do so because I believe we should never forget that it is human beings who volunteer for these trials. We often take great risks to our health, and we do so receiving no financial remuneration. We are lucky if the costs of being part of a clinical trial are fully reimbursed, and we are even luckier if the clinical trial sponsor makes the commitment to care for human trial participants who may be injured during their clinical trial.

So far, I have not personally benefited from my participation in these clinical trials. Yet, I am certain that my participation has furthered current research and will benefit those living with PD as well as those in the future who are at risk for being diagnosed with Parkinson’s disease.

This guest post was written by Jean Burns, Recipient of the 2011 Alan Bonander Humanitarian Award and Independent Parkinson’s Advocate & Activist (IPAA). For more information about Jean Burns’ work in the Parkinson’s community, please visit the following websites www.pdplan4life.com and www.pdblogger.com.