How can I be so happy with PD? (1,200 words)

How can I be so happy with PD? (1,200 words)

OJO: I TRIED TO POST THIS A FEW DAYS AGO IN ANSWER TO A JOEALT THREAD...I HOPE THIS GOES THRU.

How can I be so happy with PD? (1,200 words)

I am 58 and was diagnosed just over a year ago. My symptoms are relatively mild. So I’m still a newbie, I guess. But I have learned this: everybody’s PD is unique. Not only because the disease affects people in such wildly different ways. It’s also the case that we start out form unique baselines. We all bring different emotional strengths and weaknesses to the table when we first get our diagnosis. We have our own healrh histories. Also we have different material resources (income, family, health care, housing). So naturally we all respond in our own way to our condition as it evolves over time.

Before I was diagnosed I had been clinically depressed for four or five years. I experienced no pleasure in anything I did, I felt so inadequate in every way that I believed I scarcely deserved to live. I changed jobs, I worked hard with a psychotherapist, and eventually saw a shrink who put me on anti-depressants and other meds. The meds cancelled out my death thoughts, but I was still miserable. PD symptoms began to manifest themselves (micrographia, a frozen shoulder, and a tremor that my useless psychiatrist ascribed to anxiety) and finally my primary care doc took me seriously and referred me to a neurologist, who immediately diagnosed PD. A second opinion and a few tests confirmed the dx. I got off the antideps and began to treat the PD with the usual drugs as well as exercise, meditation, massage, acupunture, physical therapy, PD dance…the works.

Now, the dx scared me badly. My father has an advanced case of PD and I knew how devastating the condition can be. I realized that my extreme fatigue and inabilty to multi-task or generate long-range plans made it impossible for me to keep working as an elementary school teacher. I was approved for disability retirement and three months after my dx I was out of my classroom.

Pretty soon I was feeling…great! My undiagnosed PD had made it so hard to work, and the job that had once meant so much to me and that gave me so much satisfaction had become a horrible burden. No more. And the depression just vanished. I think the Sinemet cured it, who knows? A few simple meditation practices and Buddhist principles helped me to develop some very basic mental habits that ameliorated negative ruminations. I forgave myself for all my inadequacies and poor choices, real and imagined, and began to find pleasure in my simple joys again.

The PD diagnosis gave me some positive things. My depression was cured, my enjoyment of life restored, my retirement was secure, I had motivation to exercise regularly, and most of all I had a plausible reason for all the misery of the preceding four years. I wasn’t crazy, or lazy, or stupid: my brain chemistry was off, I had PD. It wasn’t my fault.

So now I practice an attitude of gratitude. I reflect on my many blessings: my family, my little house (paid for!), my friends all over the world who have shown me such love, healthy solicitude, and respect. I am able to perform my music frequently, sometimes in dark basement studios, sometimes in a sunny park, and sometimes on prestigious stages to large and discerning audiences. And happy as I am on stage, I always get the tremor, and while I don’t exactly wave it around, I don’t hide it either. Let them see! I even sing about it, with ironic humor and qualified optimism. After these events, people always approach me. “Oh, my father has PD!” “Oh, I have MS, I have MD, I have cancer, thank you so much!” I feel so connected to the audiences then, and even more so to the musicians and poet/singers who accompany me, who inspire me, and who invite me, a very small fish in this artistic milieu, to perform alongside them, some of the world’s best.

What can I feel but grateful? Happy to be alive? It’s already slipping away, a bit...my hand hurts, and my arm, it’s hard to play my percusssion instruments, but I was never that good anyway. And I find it hard to move around a crwded stage. But as long as I can think and remember and improvise, I can sing or even declaim my poetry, which is the heart of what I do. And if I lose that, there are many other pleasures to look forwards to.

I said my dad has PD. He was a highly regarded symphonic musician for 50 years. He retired and soon after had to give up playing. He says now he doesn’t miss it. He finds his pleasures in other ways he enjoys intensely. He’s nearly 90, very frail. I know that he will be gone someday. But he’ll leave me a great model for dealing with PD.

So I don’t worry about what is gonna happen. Tomorrow I could get hit by a bus. Or a cure could be announced. Maybe both on the same day. I look for the beauty around me, and for the love I have for my family and friends. When I do get down, and it happens every few weeks, I try to do something for someone else; showing a little compassion or selflessness gets me off the pity pot PDQ. Participating in a clinical trial, for example, got me out of a little slump.

I indulge myself, too. If I want a glass of wine (for example), I go and get it, in moderation of course. If I want to take a nap in the middle of the day I do it, or l doze while listening to NPR. I read serious books, but also enjoyable fluff. And I amuse myself on-line, or simply daydream about whatever I might find entertaining. Sometimes I even…well, you get the idea.

Now, I know that right now I have it easy compared to most. A violent fall or two, a humiliating lapsus on stage, bankruptcy of my state pension plan, and I could be singing a different tune. As I said, it’s already getting harder. A little pain changes everything. But I’m still mostly happy.

And it shows. People who know about my diagnosis and who see me for the first time since my retirement often say, with a distinct note of surprise, “Wow, you look great!” And I smile broadly and stand up straight and say “I feel great. I’m retired! I’m happier than I have been in years. How are YOU?”

I’m not “being brave” or “beating the disease” or “putting a good face on things”. I’m not in denial either, nor ignorant, nor smug. I don’t claim to have transcended anything, or that PD has somehow made me “a better person”. I’m not working super hard to transform my consciousness.

I’m just happy RIGHT NOW, to be in the moment enjoying what presents in this moment, grateful, aware, humble, peaceful, glad to be alive. That’s what I want to share with you, brothers and sisters with PD.

11 Replies

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  • I have also been told, after retiring from teaching, how much better I look. Don’t have the stress, have time to eat correctly, exercise and sleep whenever I need to.

    Can't forget the help of this blog.

  • Thank you for your candid posting. People in the Parkinson's Community need to be reminded that life goes on with or without them, so we all might as well enjoy our selves. Moping sucks.

  • p.s. I read your posting yesterday but accidently deleted it while I was trying to update my "Self Pity" posting. Fortunately I had a back up copy of my daily blog to repost. Sometimes I wish that I had a backup copy of my life.

  • thx for clearing that up...I knew you would not have deleted it on purpose, but I feared I was having a little dementia episode.

    BTW I think there is a difference between self-pity and mourning the loss of beloved elements of your own life.

  • Yes. I needed to read that difference.

  • absolutely amazing blog - i loved everthing you said and what you do too- carry on getting high on pd ..

    love from sha and fred - en france

  • merci bcp

  • thanks well put

  • I so enjoyed reading your post, well said. Thanks.

  • thanks all for reading thru my long-winded rant.

  • you described alot off things that are the same 4 me at first i was in shock i am 54 yrs old they told me 3 yr ago i had prob had it 13yrs my life was a turmoil of ups and downs things i was doin were totally out of charecter 4 me now im beginning to feel like my self again and enjoyin life while i can

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