Reporting My Malady
Malady identified. Parkinson’s. Time to report the medical story of my life.
I sought accurate, verified and crystal clear information: standard ingredients of good journalism.
I knew the playing field.
Google and the internet were first. The information there was voluminous, disjointed and often of questionable origin and intent, commercial or otherwise.
Next the websites of the four (soon to be three) major foundations focused on PD. They are the Davis Phinney Foundation, Michael J. Fox Foundation, National Parkinson’s Foundation and Parkinson Disease Foundation.
The information was straightforward and mostly well organized. My research found the sites trustworthy, accurate and reliable.
Each overlaps with the others but is somewhat specialized. Fox focuses on new drug research. Davis Phinney has exercise as its niche. NPF and PD, now merged as the Parkinson Foundation, are known for their patient care and patient advocacy work.
My friend Kirk Hall has assembled a comprehensive list of information available on the four sites, plus several more. It appears on his website http://www.shakypawsgrampa.comand is listed with is permission at the conclusion of this chapter. It is a wise compilation and deserves widespread attention.
Kirk, a Parkie, has devoted much of his great energy and intelligence to designing new care systems for PWP. I will write more about Kirk’s work in later chapters.
One of Kirk’s recommendations deserves special note: the invaluable PF publication Parkinson’s Disease Q&A Seventh Edition.
The most complete PD compendium is the Davis Phinney’s EVC xxxx
I give Q&Aand VC to newly diagnosed Parkies I meet. I deliver t]hem in medical offices that are likely to see PD patients. Order it free on www.pdf.org. Order xxx
When my initial reporting was done, I wrote a column for The Tampa Tribune(1). Excerpts follow:
It’s a snowflake disease.Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.
Some symptoms are invisible.Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.
A Parkinson’s specialist is invaluable.Many of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist (MDS). An MDS is a neurologist, who has undergone two years of additional training. An MDS can help us to better manage the disease and stay current on research and clinical trials.
Staying active is essential.Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustainedexercise (such as boxing, Tai Chi, Hatha yoga, interval cycling) can ease symptoms, combat fatigue and reduce stress. Regular daily activity (going for walks, doing the laundry) can also help improve life with Parkinson’s.
We can benefit from complementary care.In addition to medications, we can benefit from physical, speech and occupational therapy, the knowledge of nutritionists and psychotherapists and the wisdom and moxie of social workers. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery, it takes considerable effort to assemble that team.
All support groups are not created equal.Support groups have different constituencies (young/elderlyonset, newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.
There is a lack of localized information.Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended Tai Chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.
We can live well.Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties.
Here’s Kirk Hall’s useful resource guide (2):
Help locating a movement disorder neurologist and why this is important: – Michael J. Fox Foundation (MJFF):https://www.partnersinparkinsons.org/find-movement-disorder-specialist?cid=aff_00032
– Parkinson Disease Foundation (PDF):http://www.pdf.org/spring12_specialist
– Davis Phinney Foundation (DPF):http://www.davisphinneyfoundation.org/living-pd/10tools/?gclid=Cj0KEQjw75yxBRD78uqEnuG-5vcBEiQAQbaxSNfO0tFlTMxBMKAMkKJ6jp6-tzI7Y4nwRBFoEliVcgcaAkdv8P8HAQ
– Brian Grant Foundation (BGF): http://www.briangrant.org/
– National Parkinson Foundation (NPF):http://www.parkinson.org/understanding-parkinsons/treatment/Exercise/Neuroprotective-Benefits-of-Exercise
Newly diagnosed information:
– American Parkinson Disease Association (APDA): http://www.apdaparkinson.org/parkinsons-disease/understanding-the-basics/
Young onset information:
– APDA: http://www.apdaparkinson.org/national-young-onset-center/
Help locating a support group (PWP & care partner):
– APDA: http://www.apdaparkinson.org/resources-support/local-resources/
Help locating a caregiver support group:
– Parkinson’s Health (PH):http://www.parkinsonshealth.com/Caring-for-Someone-with-PD/Support-Groups.aspx
Talk directly to a person who can help:
– MJFF: https://www.partnersinparkinsons.org/parkinsons-advocate-program?cid=aff_00032
Three websites provide a wealth of reliable Parkinson’s information: Parkinson’s Foundation (parkinson.org), Michael J. Fox Foundation (michaeljfox.org) and Davis Phinney Foundation (davisphinneyfoundation.org).