Focus on Inspiration and Hope

So much to be grateful for these days. I met with my oncologist this week, and nearly five years out now, everything looks clear.  The chances for a recurrence go way down at the five-year mark, so all is good on that front!

I was diagnosed with Parkinson’s about five years ago as well, and have for most of that time been on a dopamine agonist drug, which imitates and supplements the lost dopamine  in the brain.  But about 6 months ago, I began to notice that movement was really becoming a challenge .  Walking actually became a chore, something I had to work at and concentrate on.  I would see people strolling along, or jogging by on the road and wistfully remember when I could do that without a second  thought.  And  I wished I had been more grateful then for that gift.  The following poem reflects that thought. When I saw my neurologist two months ago, we decided it was time for me to start taking Sinemet, the gold standard drug for Parkinson’s.   It actually replaces the lost dopamine, but not without a price.  A little too enthusiastic about its job, after prolonged use, it causes excess movement called dyskenesia: rapid or jerky,uncontrollable movements, fidgeting and the like.  Thus the reason not to use it too soon.

But it makes a world of difference.  My natural arm swing has returned, I can walk more easily.  In my exercises, I can move faster and do things I  haven’t been able to do for years.  My husband and I took a walk this weekend and I actually enjoyed it.  We even  interspersed some intervals of jogging into our walk.  I don’t know how long this gift will last, but I’m going to make the best of it while it does.  I know the clock is ticking in regards to the side effects, but there is hope ahead.  Researchers are working on ways to address this and my hope is that they will  do so before I run out of time.

And now to the Inspiration part of this essay.  Whenever someone is given a diagnosis of a disease or chronic condition, it is so helpful to have someone to look to for inspiration.   For me that would be Michael J. Fox.  We’re all aware of Michael and his dedication toward  finding a cure for Parkinson’s disease, which he has had for 20 years.  Admitting he has bad days too, he prefers, however, to focus on the positive.  Founding the Michael J. Fox Foundation for Parkinson’s Research he has worked continuously to speed the race for a cure.   I believe if a cure is found in our lifetime, a big slice of the credit goes to Michael’s efforts to get researchers to share ideas, to get people to volunteer for clinical trials, to get congress behind the drive for funding this important work.  And he still finds time to act as well.   He was recently named  person of the week by ABC News. Go, Michael!

With so many dedicated scientists, researchers, clinicians and doctors working on this , I am very hopeful we will succeed.

For those looking for inspiration, I urge you to read Michael’s books.  Even the titles reflect his upbeat attitude: Lucky Man,  Always Looking Up: The Adventures of an Incurable Optimist and Something Funny Happened on the Way to the Future: Twists and Turns and Lessons Learned.  Written with humor and honesty, they will inspire.

And although, with 2 left feet, I  was never destined to win the mirror ball trophy, for now I can spin and twirl with my grandchildren, and that is  good enough for me. And the next time you take a walk, remember to be grateful that you can.

Belated Wishes

I wish that I had learned to dance
to glide with grace
my feet in place
I wish that I had learned to dance

(long ago I had the chance)

I wish that  I could really sing
notes as pure
as birds in spring
to be in tune with everything

(I would have loved to sing)

I wish that I could walk with ease
to amble or stride
as light as the breeze
and never worry my feet might freeze

(I wish I could walk with ease)

moving is a challenge now
count your steps
heel to toe
moving is a challenge

(though it wasn’t always so)

I should have taken time
to learn to dance and sing
to appreciate a morning walk
in tune with everything

(when I had the chance
I should have learned to dance)
— pc 2011


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