Monday, February 27, 2012 Getting Better? or As Good As it Gets?
Today’s post includes three entries. The first two were originally published on Kate Kelsall’s blog,“Shake, Rattle and Roll.” I follow up with a third entry responding to the first two. The topic is about getting better with PD. Thanks to Diane Marty for getting this conversation going. Betsy
Choices
By Diane M. Marty
Copyright © 2012
In retrospect, there had been some chilling clues.
I had shrugged off my personal trainer’s observation that my left arm didn't straighten completely. I had felt like an imposter in an advanced knitting class when my fingers fumbled at the familiar task of casting on stitches. And I had laughed uneasily when my spouse teased me about falling asleep in a noisy Las Vegas restaurant.
So, when a friend asked me what was wrong with my arm, my reply was ready. Maybe too ready. Probably carpel tunnel, I told her. If my new ergonomic keyboard didn’t relieve the stiffness, some physical therapy would surely cure the problem, I added with a quaking conviction.
When a doctor delivered the diagnosis of Parkinson's disease, I was shocked—and yet I wasn’t.
Life can change in the single beat of a hummingbird’s wings. And some changes are not for the better.
Sometimes, we’re left sifting through ashes of what had seemed a steady and sturdy world, the stunned look on our faces evidence of an inescapable eruption.
Now, many people who have stared down physical challenges extol the insights that came with their hardships, especially when talking to the untouched. The personal growth! The newfound liberation! The streamlined clarity!
It’s true. Contact with life’s fragile constitution resets perceptions and priorities—my own included. I won’t deny that I’ve discovered rapture embedded in the ordinary. A baby’s head resting on my shoulder. Scarlet petals bursting from tight buds in the garden. The expansive freedom of driving fast under a starry sky.
And I’ll admit that sharing time with friends and family has a heft and a force that overrules the tilting stacks of dirty dishes, the drops of red wine on white carpet or the sudden sagging of energy.
Yet, beneath this sweet shift in reality lies a bitter truth.
And that is that any one of us affected by life-altering challenges would exchange our enlightenment for the blind arrogance of an indefinite future and the blissful hubris of a healthy body.
But trading is not an option.
Instead, my choice comes down to this. Today, I am better than I'll ever be again. It’s that simple. I can spend my time contemplating the future with foreboding, or I can concentrate on the present.
I've made my decision. Every moment counts. Every day.
© 2012 Diane M. Marty
Since her diagnoses in 2005, Diane Marty has done things she never considered doing before that point—like eaten gelatin with vegetables and worn black with brown. However, she has yet to purposefully look down into a reflective surface. Diane can be reached at dianemarty@aol.com.
Kate Kelsall’s Response to Diane Marty’s Post
“Today, I am better than I'll ever be again.” I was jolted when I read Diane Marty’s statement in her inspirational story about her diagnosis of Parkinson’s, Choices, at http://katekelsall.typepad.com/my_weblog/2012/02/choices.html
I would have made the same statement in my earlier stages of Parkinson’s, but after nearly sixteen years of living with Parkinson’s, I respectfully disagree.
A friend of mine with Parkinson’s said that her neurologist said she was better at her current appointment than she was at her previous appointment. The same friend thought that she might be getting better every day with Parkinson’s.
Although no one would probably state that I was getting better every day with Parkinson’s, I’ve been struck with how many times those from my earlier Parkinson’s days have said how “great” I now looked. Did they mean that I looked terrible before and now looked presentable? Some have gone as far as to say that “you look like you don’t have Parkinson's.” Initially, I felt misunderstood when receiving such comments, but now I gratefully accept these as compliments as they were intended.
It also confuses me that sometimes I can look good on the outside when I feel sick on the inside, due to my on/off medication/stimulation fluctuations. Equally confounding are times when I can move with ease, yet simultanneously my speech and voice are weak or slurred, or vice versa, when my movements are slow and stiff, yet my speech and voice are strong and clear.
Without a cure for Parkinson’s on the near horizon and with progression of the disease, I continue to ponder if it’s possible to get better with Parkinson’s. I believe that I am currently functioning “better” due to a supportive husband, family and friends, fine neurological care, medications, Deep Brain Stimulation and competent programming, exercise, yoga, dancing, massage therapy, acupuncture, traveling, volunteering, blogging, a positive mental attitude, and likely a plethora of other factors.
Now when people ask me how I’m feeling, I'm going to change my response to “I am getting better every day." Call it stubbornness, denial or delusional thinking, I am unwilling to resign myself to “this is as good as it gets for me living with Parkinson’s and Deep Brain Stimulation.”
Betsy Vierck’s Response to Diane Marty’s and Kate Kelsalll’s Posts
I have two disclosures to make: 1. I am the friend Kate refers to in her post. i.e. I am the getting-better-every-day person. 2. I used to be a this-is-as-good-as–it-gets person.
I was also taken aback when I read Diane’s eloquent post. I flashed back to the early days after my diagnosis almost three years ago. I believed whole heartedly that I was on a downhill slide into a nursing home. “That is the way this disease works," I assumed.
This belief was based, in part, on my mother’s severe disability caused by PD, which left her in a heart - breaking fetal position for the last year of her life.
My mother almost always took her dopamine during dinner, which, for her, was a cheese snack and steak or hamburger. She didn’t believe it when her doctor told her that protein blocks dopamine from reaching the part of the brain where itis needed. She believed that – typical of her generation – protein could do no wrong! So her medication could never do its job to the maximum.
She also was probably under medicated to begin with, didn’t exercise, didn’t take part in physical therapy, and was sadly pessimistic. These factors are all predictive of disability for people who have a chronic disease. No one explained to my mother how much phsycial theapy and oher measures would help.
In fact, at that time the medical community wasn’t paying attention to the impact that exercise and other treatments could have on the progression of neurological problems. Fortunately times have changed!
The second factor that led to my cheerless assumption about PD was the common wisdom at the time. The collective belief was that a diagnosis of Parkinson’s meant a ticket to advanced disability and cognitive “issues.” Everything I read, almost everyone I talked to, assummed a gloom and doom posture about the diagnosis. (With the exception of my neurologist who painted a very positive picture.)
Since my diagnosis I have had the good fortune to spend lots of time with PWPs at every level of advancement and I ‘ve attended two international meetings on Movement Disorders. I’ve watched a lot of people with PD get better. ( To me “better" means a tremor reduced, a mask removed, an improved walking gait; anything Parkinsonian that diminishes.) So I no longer believe that I can’t be better than I am on any given day.
Proof Positive: Kate Kelsall was one of the first people I met after I was diagnosed. My first impression of her was that she was a warm, loving person who was working hard to hold on to her spunk. These days when you meet up with Kate you see and experience the spunk right away – even if her voice isn’t great that day, even if her walk is a little off stride, always if everything is mostly in working order. The vitality has re-emerged. WOW that’s a big, inspiring improvement when you are talking about someone who has had PD for 16 years!
Bottom line: I can’t promise that I will always provide the same answer when asked how I am. One day it might be “Much better, thanks.” Another day it might be something like, ”A little shaky actually.” I’d like to have many “getting better” days! And I wish the same for Diane Marty and all PWPs on the new frontier of thinking about our disease. And thanks Diane for getting us going on discussing this important topic.
Betsy
Next post: akinasia
Reader Comments (2)
Interesting that this discourse should appear along side a review of "The Anatomy of Hope." Perhaps one should strive to do all one can right now, with the attitude that this may be as good as it gets, but don't take your eye off the golden ring of hope and a cure in the near future.
As usual, beautifully summed up, Kitsi! Thanks for posting!