Must Read, Palliative Care, Parkinson's Disease

A Resource Guide For The Newly Diagnosed Parkinson Patient

This authoritative guide was created by my colleague Kirk Hall and  first published on his blog shakypawsgrandpa.com. It is a wise and comprehensive list of existing resources. His advice deserves widespread attention.

This resource guide has been assembled by an experienced patient/caregiver group and members of the Parkinson’s disease (PD) medical/research community who share a common goal, which is to improve quality of life for people with Parkinson’s (PWPs), care partners, and their families.  A common concern of the newly diagnosed is how to find the information that they want and need.  In this brochure are links to resources that will provide helpful basic information regarding Parkinson’s, including young onset.  In the future a comprehensive guide will be available that will allow you to access a wide range of additional information.  If you are unable for any reason to obtain information you seek, there are services that will enable you to speak directly with someone who can help.

But first, our PWP/care partner members want to share a few things they have learned that are important for you to know:

  1. Give yourself some time to “process” your diagnosis.  This is a major unanticipated change in your life.  Do not give in to feelings of fear or anxiety!  Yes, your life will be different, but you will be surrounded by many people in support groups, PD organizations, and the medical community who are dedicated to making your life better!  Not to mention the support of family and friends (the same people you would support if they were going through something like this).  As soon as you are ready:
  2. Your #1 priority is to be sure you are working with a doctor that has appropriate experience, training, and education for your condition.  Do not assume that your doctor, no matter how much you may like him or her, meets this description!  Not all neurologists, for example, have movement disorder expertise that will enable them to recognize the subtle symptoms of PD and recommend appropriate medications and/or therapies.  If your doctor is not a good fit for you, or even if you are not sure and want a second opinion, we will provide information in our resource guide to help you locate a movement disorder neurologist in your area.
  3. Your #2 priority is to understand that exercise has been proven to be the single most important thing you can do for yourself to improve your condition and how you feel as well as potentially slowing the progression of the disease.  It will help you stay positively engaged and fight off the apathy that some of us experience.
  4. Your #3 priority is to take ownership of your situation by learning about PD and how you can live well with it.  This will enable you and your care partner to take an active role in the management of your condition, including providing information about your symptoms, any changes you have experienced, things that concern you, medications you are taking, other conditions you may have and more.  If you have concerns, ask questions!  If your doctor consistently does not take the time to answer your questions, find a new one!  Your obligation is to yourself and your family!
  5. Your #4 priority is to locate and join a PD support group.  “Test drive” one or two, if necessary, to find one that is comfortable for you and your care partner.  Get involved!
  6. If you are in a remote area, your options may be limited.  We know people who have teamed with a local neurologist working in conjunction with a movement disorder specialist that you can visit occasionally.  Another option is telemedicine, which allows you to receive care using communication technology.  Explore these options with your doctor to find an arrangement that works for you.
  7. Stay engaged!  The steps above will get you moving in a positive direction.  It is OK to have a bad day here and there, but own it and don’t let it turn into a bad week.  You do not have to go through this alone!

 

Help locating a movement disorder neurologist and why this is important

Exercise information

Newly diagnosed information

Young onset information

Help locating a support group (PWP & care partner)

Help locating a caregiver support group

Talk directly to a person who can help

 

Parkinson's Disease

Upgrading PD Patient Care

I have previously written about plans for a Denver meeting of neurological experts and specialists to discuss Parkinson’s disease and palliative care. It occurred Oct. 3-4 sponsored and funded by the Parkinson’s Disease Foundation. I was privileged to take part as a patient presenter of the plan I outlined in my Sept. 26 post.

You will recall palliative care focuses on providing maximum comfort to patients. Kirk Hall, my co-author, and I prefer to call it the Life Enhancement plan for Parkies at all stages of their disease. (See below for Kirk’s fuller explanation of palliative care.)

I was one of several patients who told our stories about living with Parkinson’s disease in its various phases of progression. The stories were enormously powerful and the feedback from the professionals wtion.as supportive and enthusiastic. Our narratives ranged from the shock at diagnosis to how alone and confused we felt after learning that we had a progressive and incurable neurological disease—a disease that affects not only the neuro-muscular system but many other functions such as digestive, smell, sleep and thinking (cognition).

My first impression of the experts in the hotel meeting room was how young they looked. Here we were, a group of 60-plus-year-old patients and caregivers, talking to aces who could be our grandchildren. And these were awfully smart and dedicated young people whom I quickly came to respect for their dedication and knowledge.

The primary difference between we patients and caregivers and the various neurological pros was our focus on qualitative actions versus their need to validate results by quantitative measures.

The patients favored action steps, such as one-stop shop for authoritative information for patients and caregivers.

By contrast our audience lived in a far more quantitative world that is required by their disciplines. Life experience truths were not sufficient for the work they needed to do in their world of high-powered measurement and proof.

It was clear to me and the other patients that an organized and efficient system of treatment utilizing the right professional at the right time in disease progress was a no-brainer to establish. The researchers, by contrast, even if they agreed with us, bore the burden of proving with bullet-proof data that the new system would produce better results for patients than the current system (or better, non-system).

Nonetheless at the conclusion of the two-day meeting, there was a remarkable accord about next steps in moving toward a new system of organized care.

To give you some examples, one of the tasks the group will undertake is “theoretical model and practical next steps for caregiver research and support.” A second was “an outcome measures working group including review paper summarizing state of evidence with recommendations.” On the qualitative side was a recommendation to publish in a neurological journal a letter suggesting what neurologists should be doing better for patients. One very ambitious recommendation was “categorizing, summarizing and critiquing what resources are currently available for patient education…”

There were other recommendations to create new committees and coordinating bodies to make permanent the palliative (“Life Enhancement”) movement with an ongoing series of caucuses and professional interest groups.

My colleague Kirk Hall describes an ongoing next step: “A new clinical research study titled ‘Does outpatient palliative care improve patient-centered outcomes in Parkinson’s disease?’ has begun at University of Colorado Hospital Anschutz Campus and is actively seeking interested individuals over the age of 40 that have been diagnosed with probable Parkinson’s disease and their care partners. Dr. Benzi Kluger is the principal investigator for the study, which is being funded by the Patient-Centered Outcomes Research Institute (PCORI) and will take place over a period of three years. There are two additional sites at the University of Alberta and the University of California San Francisco. Information regarding this study is available on the Fox Trial Finder site: https://foxtrialfinder.michaeljfox.org/trial/4202/.

“Many people are confused by the term palliative care. It is a treatment approach focused on improving quality of life by relieving suffering in the areas of physical symptoms such as pain, psychiatric symptoms such as depression, psychosocial issues, and spiritual needs for PWPs, care partners, and families at all stages of PD. Hospice and palliative care are not the same thing. Hospice can be an extremely valuable end-stage service and is an under-utilized subset within the palliative care spectrum. This study plans to learn more about the effect of palliative care on patients with Parkinson’s Disease and their care partners.”

To summarize, through the leadership of Dr. Kluger, who organized the Denver conference, a very large ball in the treatment of Parkinson’s has begun rolling. There is no reason that parts of the larger three-site study can’t be implemented now in other cities.

Uncategorized

Tampa gets grant for Parkinson wellness program

 

The Jewish Community Center of Tampa and University of South Florida Health have won a competitive, $150,000 joint grant to establish a Parkinson’s Disease wellness program.

 

The National Parkinson Foundation (NPF) of Miami chose the Tampa application in a national competition, funding the effort with a three-year, $75,000 grant to the Jewish Community Center (JCC) and a similar $75,000 grant to USF.

 

The JCC-wellness concept was piloted successfully in New York City. NPF is extending it to Tampa, Boston and Washington. The programs emphasize wellness for Parkinson’s patients through physical exercise, education and social interaction. The programs offer what NPF describes as low-cost services and will be open to anyone with PD.

 

The JCC’s partner is USF Health’s Byrd Parkinson’s Disease and Movement Disorders Center. According to NPF, the programs will deliver services to “help people living with Parkinson’s stay active, connected and empowered.”

 

Recent research has demonstrated that regular exercise is a key factor in PD patients’ retaining a sense of well-being and continued involvement in normal daily activities.

 

The Tampa center will offer three Parkinson’s-specific fitness classes per week, a weekly care partner support group and seasonal educational events. The program will be located at the Jewish Community Center in the Citrus Park area at 13009 Community Campus Dr.

 

For more information contact Jen Goldberg at 813-264-9000 or jennifer.goldberg@jewishtampa.com. She said the program will begin in January

 

“We are excited by this opportunity to bring needed services to the Parkinson’s community and to partner with USF and its nationally recognized mobility center,” said Goldberg, the JCC’s executive director of education and special projects.

 

According to Robert Hauser, MD, Director of the USF Health Parkinson’s Disease and Movement Disorders Center, “…research has demonstrated that regular exercise improves quality of life and may slow progression of disease.”

 

 

NPF recognizes the Byrd Center as a National Center of Excellence, a prerequisite for a city to gain a JCC Parkinson program.

 

The program is open to the full community – no matter a participant’s medical or religious affiliation, PDF says, adding: “Classes are offered at low-cost, and JCC membership is not required to participate in the program.” Charges have not yet been set, Goldberg said.

 

The program is funded through the support of The Edmond J. Safra Philanthropic Foundation. “This program is on the cutting edge of the international movement towards greater collaboration between patients, providers and community organizations,” said Amy Lemen, managing director of the Edmond J. Safra National Parkinson’s Wellness Initiative.

 

 

The nationally recognized, three-year-old Parkinson Place in Sarasota already serves the South Tampa Bay area. It is funded by the Sarasota-based Parkinson Research Foundation The 11,000 square foot facility is open five days a week, offering a broad range of educational, exercise and social services at no charge.

 

The new JCC-USF program will bring less frequent patient support services to the North Bay area. Both are connected to USF Health through faculty members who practice at both institutions.

 

Parkinson’s disease is a progressive neurological disorder that affects nearly one million people in the U.S. Although promising research is being conducted, there is currently no cure for PD.