a man reflects in a swarm of butterflies about Parkinson’s and change

Parkinson’s and the Evolution of Phil 2.0

I’ve just turned 80 and I’m not the person I used to be. I suppose that statement is an oxymoron.

Not so many years ago, I was quite comfortable, retired with a slightly self-isolating, hedonistic lifestyle with rich foods, alcohol, and a self centered perspective. Not really unhappy with myself but, at the same time, not really happy with myself. Actually, I’m pretty sure I did not like "me."

I’m not that person any more.

Enter Parkinson's

What happened? Drum roll ... wait for it ... wait for it ... enter from stage left ... Parkinson's.

Parkinson’s has brought significant negatives to my life. The loss of treasured activities like hiking, camping, fine woodworking, gardening. Throw in tremor, severe balance issues, severe neuropathy, a little apathy, depression, anxiety, and loss of my independence, and you have a present no one wants for any birthday!

In addition to the negatives, and they are serious, having Parkinson’s has also been a key positive contributor in my life going in directions I could never have anticipated.

Unexpected consequences

Being diagnosed with a chronic degenerative disease with no cure really sharpens your focus. After the usual denial, anger, and extended pity party, I gradually changed a few things about my life - some intentional, some accidental.

It’s an understatement to say organized exercise and I were never close friends. I had embraced couch potato on a professional level. Mentally kicking and screaming, I grudgingly bought into the fact that exercise was the only game changer for Parkinson’s and joined a Parkinson’s exercise class.

Two things happened: I found exercise improved my mood, pain level, and sense of self. Endorphins were good! And I found being with a group of people with similar symptoms and similar problems compelled involvement and generated friendships and feelings of empathy and intimacy on a level I had not experienced previously.

Parkinson’s symptoms aside, I now chase endorphins with about 10 hours of dedicated exercise a week and find myself in the best cardiovascular condition I’ve been in since my early 20s. I definitely have slowed my Parkinson’s progression!

In addition to just bemoaning the loss of my favorite activities, I looked at what I enjoyed about those activities and found other activities I could do that offered the same enjoyment.  I actively try to stay as busy mentally and physically engaged as possible.

Talking about the condition

My wife and I have made an effort to become knowledgeable about Parkinson’s. We share that information and sharing has caused a closer relationship with other people with Parkinson’s.

I noticed most people with Parkinson’s were reluctant to or had difficulty talking about how the condition was affecting their lives. I thought voicing my feelings might encourage others to do the same.

On a trivial level, it's the theory that misery loves company? I discovered talking and writing about my feelings was definitely not easy but was, at the same time, both cathartic and required me to lower walls and barriers I had spent a lifetime erecting. I have become an advocate and a mentor. Exposing your vulnerabilities and being open is a scary process.

Revealing my feelings about life with Parkinson’s caused me to recognize the damage that negative thinking, depression, apathy, and anxiety were doing to my relationships and mental health. For the first time, I sought help from a clinician and entered therapy. I am learning how to negate my negative thinking, learning and practicing new coping skills and dealing with things that have bothered me all my life. It’s a process.

Becoming a better version of myself

Parkinson’s may hurt me but it has been a catalyst for me becoming a better version of myself ... one that is happier, healthier, involved, and more open.

As Michael J. Fox said: "I often say now I don’t have any choice whether I have Parkinson’s, but surrounding that non-choice is a million other choices that I can make."

It’s strange to voice it but I like this new me much more than the old me. Am I there yet? No, I am, at 80, still a work in progress.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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