I’m Not Done Yet

I may be a Parkie, but I don’t see the future darkly

Robert Nadel

For the last 2 months, I have been participating in a writing group run by StoPD. There are about 10 people with Parkinson’s in the group which is facilitated by a professor from NYU, along with the founder of StoPD.  The goal for the group is to eventually create a script for a play about living with PD.   Each week we had a different assignment, from Haiku, writing a scene for a play, to writing about how we want to be remembered (it started out as an obituary, but we all objected to that!). The last assignment was to write “I’m Not Done Yet” in whatever form of prose that we wanted to use. I really liked what Robert Nadel wrote, so I asked him to contribute it for this week’s blog post. Enjoy.

Sunrise by Sharon Krischer

By Robert Nadel, June 4, 2020

My future is bright

I can see the morning Light

I may be a Parkie, but I don’t see the future darkly

It has opened me up to helping others and share what I have learned over the past years since I was diagnosed. I have participated in clinical trials which may have some short term and long-term benefits to me and for those who have been newly diagnosed.

I have extensively researched the disease and know with confidence, that while right now there is no cure, I can continue living a modified yet active lifestyle. And perhaps in my lifetime there will be a cure or way of reducing the symptoms.

I for one will continue to challenge myself both physically and mentally

While the pandemic has thrown new barriers in our path, we have to look forward to a new way of doing things, I for one will continue to challenge myself both physically and mentally. for not doing so may lead to consequences of losing some of the ground I have gained on this uphill battle 

I just got off the phone with a high school friend whom I haven’t seen in perhaps 40 or more years and not spoken to in almost as long.(will call him S) What I found most interesting, is what I have taken away from our lengthy conversation, We have traveled very different paths in our lifetimes, Both of us have had more than one marriage, and have had many experiences along this train ride called life.

Where our paths have diverged is S has for the past 46 years had the same job, and not to say that it is a bad thing, S has been quite successful. Whereas my train has had many pauses along the way with several side trips and starts and stops.

“ Exercise? What do you mean exercise?”

But he did say something that sparked a response in me, He said he is forgetting words, So I asked S what are you doing for exercise?  “ Exercise? What do you mean exercise?”

I than went onto explain that Parkinsonism may tell your body and mind  to chill out, just relax and let things go, the disease is very nefarious and I can truly say the lesson that PD has taught me is the consequences of not constantly challenging mind and body. In some distorted way I can say Parkinson’s has had a positive effect on opening me up to seek out new ways to stimulate the mind and body.

So  S thinking about what he has been doing for the past 46 years, is on cruise control with rote learning and repetitive actions. Not putting anything new into the hopper of challenge

I see myself helping others to be happier and more secure with themselves and consequently satisfying ME!

Relating another phone call, I received a few days ago was from one of my former MDS doctors, who asked if she could pick my brain, as she felt I am always seeking out new challenges and answers to problems related to PD.

Her organization is looking to expand online offerings and we spoke about the various groups of people to whom it would be targeted and the stumbling blocks to make it work.

I see my path working with others will help me

Rereading what I have written, I believe I have said in as many words “What is Next” through the many twists and turns I have related, I see my path working with others will help me.


2 responses to “I’m Not Done Yet”

  1. I am delighted to have found your blog! my mother was diagnosed shortly after coming through chemo. She’s been in a worse place than she is today but has lost her oompf due to FOF and inactivity. I’d love to hear your motivational thoughts from a person with PD, as I am a firm believer in keeping going, putting one foot in front of the other, challenging yourself daily, mentally and physically but I do not have PD so feel a complete arse for being this way towards my mother. She has a lot pain in one leg after walking, which in my opinion is related to PD but also to very long periods of sitting down/inactivity etc. Thoughts welcomed?

    1. Mary, I hope I can help. What I would suggest is that you take your mother to a physical therapist asap to deal with the issues and get her to start exercising. A walk to the corner is a good start. Gradually increase the distance and the speed. It should help the pain too. Exercise is essential for those living with Parkinson’s. It helps with balance, endurance, mood and so much more.

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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.