Reflecting on 12 years since my Parkinson’s disease diagnosis
The early days were hard, but I fought hard, too
Anniversaries can be good and bad, loving celebrations or reminders of past tragedies. For me, the anniversary of my diagnosis with Parkinson’s disease is a bit of both.
It was awful and tragic and life-altering in some ways. But it’s also the day we named the monster that was draining my energy and eroding my mobility. It was the day I could start fighting back.
This month marks 12 years since that day. Twelve years is a long time. It’s the length of time it takes to receive a high school education. It’s how long it took the Voyager 2 spacecraft to reach Neptune. It’s the age of a quality Scotch whisky, for Pete’s sake!
At times, my diagnosis seems like only a moment ago; at others, I can’t remember life without this dreaded disease. I was just 36 when my early-onset Parkinson’s disease was diagnosed. I was one of the lucky ones because mine was diagnosed quickly and accurately. But it still means a lifetime of uncertainty.
Looking back
This anniversary is always a time for me to reflect on how things are going. I can say this: After my diagnosis, it got worse before it got better. In those initial years, I dragged my exhausted body on business trips and to conferences when I could barely walk. I have vivid memories of walking in a Las Vegas convention hotel with terrible gait freezing and shuffling feet. I was sweating with the effort and focused on just staying upright.
Deep brain stimulation (DBS) surgery, six years after my diagnosis, completely changed my life. It gave me so much of my mobility and energy back. It’s not a cure, but since I had the procedure, my life has expanded again. It proved to me that you should never give up hope.
I was reminded of both how hard my early years with Parkinson’s were and how hard I fought when a memory from eight years ago popped up on my phone recently. I wrote the following note two years before my DBS surgery, when I was just 40 years old:
“Four years ago today, I was diagnosed with Parkinson’s disease.
“I am not heroic or brave.
“I’m too busy living my life.
“I kind of wish I had some profound bit of wisdom, but meds and PT [physical therapy] and getting stuck in place by a line on the floor are normal now. Which, I guess, is the point.Â
“One of my favorite quotes is,’I’ve had a bad day. Another one. One in a series of bad days. I’m not complaining. Bad days are my bag. They’re time-consuming, however, and I’m a busy girl.’ — Tom Robbins, ‘Still Life with Woodpecker’
“I’m not complaining. Parkinson’s disease sucks. My life doesn’t. Parkinson’s disease is something about me. It’s not what I am. So bring it. I’m busy, so I eat bad days for lunch. Four years ago, I was terrified by this incurable, degenerative disease. Now I know it’s a war of attrition. I will outlast. Bring it, Parkinson’s disease. I’ve done this for 1,460 days. Give it your best shot, because I have more important s*** to do.”
I was smart back when I was 40, wasn’t I? It was good to be reminded of how far I’ve come, too. I’ve been doing this for 4,380 days now, and I’ll never give up. And don’t any of you give up, either — on day one or 10,000.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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