March 5, 2013

Yes, I Still Have Parkinson's Disease

That's right. Still have it. I haven't talked about it for awhile on the blog so I decided to give an update on where I am with my Parkinson's disease and then later on the current status of PD research. Today it's - -

Parkinson's and My Life Today
I got my diagnosis almost four years ago. At the time, I thought my life was about to change… radically. I made plans for a very different kind of future. I came THIS close to selling my house and moving into a senior residence where the help I thought I’d surely soon need was available around the clock. Worried about living a compromised life and burdening my children with anxiety -- and their inheritance with a massive resource drain – I read up on “self-deliverance,” setting the time and circumstances to bring one’s own life to an end.
It was my PD diagnosis – and what I then thought to be a miracle supplement, 5-HTP – that made me begin this blog. I guess I suspected my journey with Parkinson’s would become the main focus of my life. I was wrong.

Yes, I’m very careful to take my meds every day – and I take advantage of programs, like BIG and LOUD – but PD has not overwhelmed my life as I thought it would. Not yet, anyway.

It scares me now to reflect upon how close I came to making some catastrophic decisions, especially after a long life that’s been blessed with serendipity and – if I may say so myself -- filled with many good choices, too.

Instead of that grim imagined future, I’ve enjoyed the past few years spending time with family and friends, traveling, gardening, reading, savoring the peace and quiet of my house and back porch, and enjoying Washington’s bountiful theater and restaurant riches.

I've always loved research and writing and this blog gives me the chance to indulge in those hobbies. 

Sharing my house with Nimesh and Bhawana is an ideal living arrangement that gives me the love and support of a second family.  It sure as hell beats moving into a senior residence, at least for now.

Other than my PD, prostate cancer, and nagging (but improving) bad back, I feel blessed with good health. ("Other than that, Mrs. Lincoln, how did you enjoy the play?")

At the regular meetings of my Parkinson’s support group, I see friends who are much further down the path than I am. Some of them now have lots of trouble speaking and walking. I admire their pluck and continued, contagious good humor. I know my own good fortune has an expiration date.

I really believe the New Year's resolution I recommended for everyone: Live your life as though you have a progressive fatal illness. Make the most of today.  Remember we all have a fatal progressive illness -- it's called aging.

Yes, I still have Parkinson’s. And tomorrow, I'll summarize the specifics of my current treatments. Then I'll give an overview of where we are in PD research.


kaitlyn roland said...

thanks for sharing an update John!

Judy said...

Re. your prostate cancer, please see:

If you use the Budwig program (which is said to have 95% success rate when followed strictly), you would not need to use the DHA supplement that Dr. Fuhrman wrote about in the link posted on your vegan diet/Parkinson's page.

Best wishes, Judy