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Archive for the ‘Guest Post’ Category

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. 

Five Reasons I Advocate on Behalf of Clinical Trial Participation

Thursday, October 2nd, 2014

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.

My Spiraling Road into the World of Advocacy for PD

Tuesday, April 8th, 2014

Myra Hirschhorn is a shining example of someone who has found multiple ways to serve as an advocate for Parkinson’s disease in her local community. We are grateful that she lives in New Jersey!

Helaine Isaacs
PUW Event Director

Myra Hirschhorn.pngParkinson’s disease (PD) has been in my life for as long as I can remember. As a child I watched my grandmother live with the complications. This was before the gold standard drug, Sinemet became available. The symptoms and complications were much quicker to surface and the prognosis for patients was much dimmer back then.

Fast forward to September, 1999. My husband, Stu noticed a tremor in his index finger. This led him to a movement disorder specialist and he was diagnosed with PD at the age of 53. This brought PD back into my life. Fortunately, Stu was able to continue to work for five more years. During that time I began attending the Parkinson’s Disease Support Group at Virtua Memorial Hospital in Mt. Holly, NJ. Through this support group I learned about various Parkinson’s organizations and conferences. These organizations and meetings made me aware of local resources and programs that were beneficial to me and my husband.

As I learned more, I became an advocate and found ways to provide education, resources and information to members of the Parkinson’s community.

Since 2009, I have been the facilitator of the Virtua Parkinson’s Disease Support Group. I offered to take on this role and have never regretted it. The members of this group are so supportive of one another. I’ve secured speakers on relevant topics, and provided information on current issues and upcoming events for the group.

Myra Hirschhorn 2I became involved with Parkinson’s Action Network (PAN) and am currently the NJ State Director of PAN. I’ve traveled to Washington, DC to attend the PAN Forum and have met with representatives of Congress to lobby on behalf of the Parkinson’s community.

A couple of years ago, Voorhees Senior Living, a local assisted living facility developed a PD Support Group. I assist the support group by sharing information on issues and events that may be of interest as well as helping to secure speakers. People in that area are very pleased to have a group available to them.

I was part of a group of people who worked to bring Dance for PD’s program to our area. I am thrilled that the Virtua Parkinson’s Movement Class has been in existence for a year now, with Stacey Macaluso as the talented and caring instructor.

Last year, I worked with the Willingboro Library to schedule periodic speakers at the library for people with Parkinson’s disease, their care partners and friends. In addition, the library now offers classes in Qi Gong and Delay the Disease for people with Parkinson’s as well as the general public.

At all of these venues and at senior expos, health fairs, freeholder meetings, and local Parkinson’s walks, I am “armed” with brochures and share information about the various Parkinson’s organizations. This raises attendees’ awareness of all the support that is available, provides opportunities to learn about living well with PD and how people living with PD can advocate for themselves.

Recently I attended an LSVT-BIG training for occupational therapists and physical therapists, with attendees from all over the world. I provided them with information they can in turn share with their clients. All of the PD organizations have been more than happy to provide me with information to share.

Returning to the Parkinson’s Unity Walk in Central Park each year is always a high point for my husband and me. It is empowering to see the thousands of people all gathered for this cause and to be able to touch base once again with all the organizations that provide so much support to the Parkinson’s community. The Unity Walk is the best source of information and inspiration for people with Parkinson’s disease and their loved ones.

We each need to find a way to make a difference. I encourage you to find opportunities to raise awareness and educate people in your own community about Parkinson’s disease.

Myra Hirschhorn
Team Captain, Stu’s Supporters

Ken Aidekman, PUW Co-founder reflects on the First Parkinson’s Unity Walk and its Meaning to the Parkinson’s Community

Tuesday, April 1st, 2014

To kick-off Parkinson’s Awareness month, we’ve asked Ken Aidekman, Co-founder of the Unity Walk to reflect on the first Walk in 1994 and how far we’ve come over the past twenty years. We are grateful to Margot for her vision and Ken’s commitment and support throughout the years.

Helaine Isaacs
PUW Event Director

1stWalkand2012Walk

Twenty years ago, I witnessed 200 walkers come together in Riverside Park to raise $16,000 for Parkinson’s research. This year, over 10,000 walkers will gather and raise over 100 times more than we did at that first Parkinson’s Unity Walk!

I have seen the amazing things that a Parkinson’s grassroots effort can accomplish. I watched a small band of advocates succeed in raising awareness and funds for research in Washington. I saw Margot Zobel take a simple idea for a walk and turn it into a dynamic force for good. She sensed a vacuum in New York and turned it into an opportunity for people around the world. Her strength derived from her conviction that individuals have the power to change their lives through creative cooperation.

The energy that Margot brought to the Walk remains with us today. You can see it in the faces of family members who have traveled great distances to be here. You can hear it in the voices of people living with Parkinson’s who describe how it helps get them through the difficult the months ahead. And you can feel the love that goes into every t-shirt and sign supporting a grandparent, parent, spouse, child or friend.

What is it about this Walk? Joan Samuelson, the founder of the Parkinson’s Action Network, talked about it at the second Parkinson’s Unity Walk.

“I don’t know how many of you were in the same situation I was when I decided to come and people said “Are you going to walk?” and I said “No, I can’t walk that far.” Because often I can’t. And it was pretty nice for me to be with others in the same situation – who didn’t know if they could make it for sure the whole way.

One thing I knew was that it would be OK if I didn’t, which isn’t always true in the world we live in. We try to be equal to everyone else around us. We want to be able to do all the things that we used to do. It’s hard to give those things up. But, it was nice to walk today knowing that if at some point my foot started doing the crazy things it does or if I got tired that it would be OK. And that somehow, somebody in this crowd would make sure that I got here by the end.”

The Walk is about a day of faith, trust, friendship, love, commitment and empowerment. There are many individual teams at the Walk, but no matter what, we are all members of the same team – the team to end Parkinson’s disease.

Together, we take pride in our accomplishments in fostering community and funding research. We find inspiration in our growth and empowerment. But, there’s a long road ahead before we cross the finish line. We want nothing less than the total banishment of Parkinson’s disease from the human condition. Let our battle be remembered as a glorious triumph by those who believed that one person can make a difference.

Each step in Central Park brings us closer to our goal.

Join us on April 26th. We can’t wait to see you!

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Ken Aidekman
Co-founder, Parkinson’s Unity Walk