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Things I Wish I Had Heard At Diagnosis

My Davis Phinney colleague Rich Wildau shared a short and lovely piece of writing about Parkinson’s. Its title is “A Letter to My Clients: Things I wish I could have told you on the day you were diagnosed with Parkinson’s.”

The piece goes to the heart of what it means to “Live Well With Parkinson’s, the Davis Phinney charge.

Here are three points I particularly liked. The entire post is at  http://www.invigoratept.com/blog//a-letter-to-my-clients?awt_l=DeIAr&awt_m=nDT1wGzMkwN.Li

“Your Future has Not been decided for you. There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in your hands, no one else’s, and your attitude is everything.

“Start Exercising. Now. The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime.The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!

“Take Action Now, don’t wait. You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong– I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them.Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health andfuture your top priority.”

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Update on Shuffling Editor’s Tampa and Macon Work

I wrote the following letter April 10 to donors to Struby’s and my Parkinson’s work in Tampa and Macon.

Dear xxx,

I write to bring you up to date on my Parkinson’s work. I thank you again for your indispensable help to the Davis Phinney Foundation and Me-Over-PD Foundation.

I work in two geographic and Parkinson communities. One is in the Northern Tampa Bay region (Hillsborough, Pinellas and Pasco counties) where Struby and I lived happily for almost 20 years.

The second is Macon, GA, where Struby and I moved in November 2017. Our new home is the splendid continuing care community, Carlyle Place.

My Tampa Parkinson’s community revolves around eight Parkies and their care partners in an unusual support group, the Parkinson’s Disease Action Group (PDAG). I describe it this way in the mission statement:

“No accountability organization or system exists for strongly aspirational and persevering Parkies. We have created one, the Parkinson’s Disease Action Group (PDAG)…

“Our goal is to help one another out-wit, out-flank and counter-punch this unwelcome tenant in our brains.”

PDAG’s action program is development of a groundbreaking program Me-Over-PD (MOPD) to reach newly diagnosed people with Parkinson’s. Those newly diagnosed individuals will receive — for the first time anywhere — real-time, verified, actionable, local information to assist them in navigating this mysterious malady.

The consortium comprises Tampa graduates of the PD Self Actualization Program of the Parkinson’s Foundation and faculty and students at the University of South Florida’s Zimmerman School of Advertising & Mass Communications.

The heart of MOPD is a live database of crucial resources that include neurologists specializing in mobility diseases, physical therapists, speech therapists, occupational therapists, dietitians and personal trainers.

No such database exists anywhere for the newly diagnosed Parkinson’s person and his/her general practitioner or treating neurologist.  Existing “help lines” have limited highly local information and lack resources for constant verification and updating.

The database will be used to prepare a brochure (“Road Map”) distributed through hospitals, neurology clinics, drug stores, YMCAs, agencies for the aging and doctors’ offices, to name but a few.

The target audience, for starters, is Parkinson’s sufferers in the northern Tampa Bay region.  Based upon lessons learned from the Tampa Bay rollout, MOPD intends to extend its reach by partnering with local and regional community support agencies.

We believe that newly diagnosed Parkinson’s sufferers can substantially increase the suitability of their treatments along with the quality of their lives if they are fully informed of what resources are needed, where these resources are available and how to access them.

MOPD is a Florida non-profit corporation. It received 501C(3) approval in April 2018. MOPD received a start-up contribution of $5,000 from a Detroit donor.

MOPD plans to be operational by the end of 2018. Janelle Applequist, assistant professor at the Zimmerman School is leading operations. I am president.

In Macon, Struby and I host meetings in which Parkies and care partners discuss the nuances of PD and design action steps to improve care for all patients in Middle Georgia. Those have included a lite version of MOPD resources and pursuit of additional exercise programs.

I am working with Mercer University’s medical school to improve Parkinson’s awareness among future physicians.

As of mid-2018, Georgia —  like most other states — lacks a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We are working to pool the university and health-care-organization assets available in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

All the best,

Gil