Fighting Parkinson’s, and “okay”

“Okay” is the word I have come to use to denote acceptance followed by dealing with the issue and working toward a solution. There is a certain emotional detachment that comes with “okay,” but that type of clear-headed emotional detachment is what we need to beat this disease. However, I have to admit that it was Sally who first used the “okay” strategy when we realized I had Parkinson’s.

When I first realized I had Parkinson’s and Sally and I discussed it and then cried together, she settled down and said, “Okay, we need to put a plan together and figure out what we are going to do about this.” Looking back, I know this was the most loving thing she could have done because I had to put my “poor me” away and start to work on a solution. As I went through my recovery, I learned that “okay” meant acceptance. Remember, please, that acceptance does not mean acquiescence.

For me, “okay” came to mean, “I accept the situation as it is, right here, right now. What is my solution? What am I going to do about it, right here, right now?”

I have tremors all the time…”okay.”
My legs hurt…”okay.”
My back hurts…”okay.”
I am constipated…”okay.”
I have to hold on to the railing when walking up the stairs…”okay.”
I can’t get my utensil to my mouth…”okay.”
(I think you get the point)

Each “okay” meant this: “‘Okay,’ this is what is happening right here, right now, what am I going to do about it.” As you can see, this is quite different from, “My legs hurt, this means my Parkinson’s is worsening, soon I won’t be able to walk without a walker, soon after that I will be in a wheelchair.” “Okay” is a call to action. It identifies an issue and works toward a solution. The other response is emotions. It is fear and worry and anger about the future. It causes paralysis of the spirit, which causes paralysis of the mind, which causes paralysis of the body. This is the one situation where our fear of the walker and wheelchair, and doing nothing about, will provide us the paralysis we need to end up with the walker and wheelchair…we will get what we fear. Why not try, “okay,” and then do something to provide a solution to the problem.

What if we could say, “I have Parkinson’s and this is my Parkinson’s body…’okay.'” Accepting our Parkinson’s and our Parkinson’s bodies, with all of our newly discovered physical limitations and pains is part of the process of recovery. After Sally said let’s put a plan together, I read the book, What your doctor may NOT tell you about Parkinson’s Disease, by Dr. Jill Marjama-Lyons. It covered the medication and alternative approaches to dealing with the disease.

The thing is, I did not want to “deal” with the disease and I did not want to “maintain” the best possible life with the disease. Simply put, I did not want to have the disease, which is something we all have been told is impossible. However, recovering from Parkinson’s without medications was the only alternative for me. Faced with what I felt was the only alternative for me, I got on the path toward recovery and I never got off.

From what I had learned in Dr. Marjama-Lyons’ book, it seemed to me that Parkinson’s sufferers had been medicated for such a long time that experiencing the disease from a non-medicated body would be the way for me to best understand what was going on. I decided that if I experienced Parkinson’s as it was with no medications and no supplements and no pain killers, then I would understand Parkinson’s as it was…raw and unaltered…from inside a Parkinson’s body, and that would provide me the best opportunity to solve it and recover.

As it worked out, it was a good thing that I saw this as my only alternative because it was not easy. I was reminded of this in a coaching Skype recently when I said to the person, “Thank you for working so hard and sticking with the Recipe.” She looked at me and said, “What’s the alternative?” I smiled and explained that was exactly how I felt.

Back to “okay.” We need a lot of faith to take an “okay” attitude toward our Parkinson’s. It is the type of faith that says, “I know I will recover and I am getting on my path and I am not getting off until I recover.” And, as a person pointed out to me yesterday morning, “After I finish doing the Recipe in the morning, everything else that goes on after that is my life, and I understand that for now, Parkinson’s is part of my life, but I also understand it is not my whole life and it will not always be a part of my life.” I thought, “He gets it!”

So, you have Parkinson’s…”okay!” What are you going to do about it, right here, right now? Why not say, “okay,” get on your path to recovery, and stay on your path to recovery until you recover. Aren’t you worth it?

All my best,

Howard

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6 Responses to Fighting Parkinson’s, and “okay”

  1. Thank you Howard… for me, this reminder and focus is inspiring and affirming of the path I am choosing. I am so grateful for your continuing support…I have the sense that I am part of a team…. you’re our wise and compassionate coach and I’m working my buns off, really trusting what you are offering not only me but others on this path with you…. I want to celebrate by shouting yeah team!!!! We can do it!!!

  2. Howard says:

    Penny,

    You are welcome. You are working your buns off, as are others, and I am happy to be walking beside you on your path to recovery. I like your shouting “yeah team!!!!” Thanks!

    Howard

  3. Leontina says:

    draga antrenor al sufletului meu ,suflet umilit,uitat de preteni si colegi ,inghesuit intr-un trup ghirbovit,tremurind cu 20 de ani mai batran decat trebuie care se ascunde in cel mai intunecat colt al camerei ca stie ca e hidos si neplacut la vedere,tu spui sa zic ok celui ce mi-a facut asta,bine asa fac; ok parkinson ,am puterea sa ma vindec,acum plang. cu speranta leo

  4. Howard says:

    The above comment from Leontina translates to:

    Dear coach of my soul, my humbled soul, friends and colleagues, in a cramped worn out body, trembling 20 years, he is hidden in the darkest corner of the room, he knows he’s an ugly and unpleasant sight. You say ok to say to him that he did this, well so be it. Ok Parkinson’s, I have the power to heal myself now. Crying with hope, leo

    My response to Leo:

    Da, Leo, da, aveţi puterea de a te vindeca! Mă bucur să văd că sunteţi lectură posturi si tineti speranţă în viaţă. Sunteţi merită!

    Binecuvântări pentru tine,

    Howard

    Translation:
    Yes, Leo, yes, you have the power to heal yourself! I am pleased to see that you are keeping hope alive. You are worth it!

    Blessings to you,

    Howard

  5. john says:

    Just a note of gratitude for the insight gleaned from reading your post. Sometimes I struggle with my right arm in dressing…today, after putting my t-shirt on backwards I immediately caught myself from stressful negative thoughts by quickly responding with, the Rx,”okay.” Felt good to be okay with my life just as it is. Thank you Howard for your keen insight in avoiding the limiting and contracting mental habit-patterns that would, thought-by-thought, erode freedom of movement.

  6. Howard says:

    Hi John,

    You are welcome. You are right on point about where our “mental-habit patterns” take us. Simple bumps in the road that did not overwhelm us pre-Parkinson’s seem to consume us with negative thoughts and fears when they occur while having Parkinson’s. The ability to catch ourselves, recognize what is happening, and shift our thoughts to “okay” really takes us to a better emotional level in dealing with our lives. I am so happy that you shared with us your real life experience on how this process works in practice.

    Thank you!

    With gratitude,

    Howard

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