I don’t remember exactly when in the Spring of 2010, but I remember where.
I first started to notice that during our weekly Church service that the program would bounce gently on my wife’s knee. Nearly indiscernible, yet constant. She, of course. dismissed it as nothing, and I, for the most part didn’t think much about it for the next several months, neither of us recognizing that this would be our introduction to what some have referred to as our “uninvited guest”.
Summer came and went, a new school year upon us, and given the state of the local economy a complete lack of teaching positions that Carol was qualified for. Substitute teaching kept her busy throughout most of the Fall.
Life was pretty normal - except for “the bounce”.
The holiday season came and went and with the advent of a new year came a new teaching opportunity to finish out the school year as a maternity leave replacement. Neither she, nor I, were prepared for the stress that would be attendant to that position. We were also not prepared for the seeming annoyances, a bit of a tremble in the right hand, a bit of difficulty in handwriting while grading papers, or the occasional internal flutter, that were collectively warning us that our lives were about to change.
I’m the worrier - she’s the warrior.
That’s how it’s always been. For me the days that preceded her initial appointment with the neurologist were filled with prayers for her well-being and hours of internet searches for meaning in her symptoms and possible prognoses. Essential Tremor? Brain Tumor? Stress-related Anxiety? Menopause? I sought out physician friends of mine, (one whose mom had had PD, one of whom had recently received his own PD diagnosis). Each were generous with their insights into what could possibly be the root cause of her symptoms.
There would be numerous subsequent tests over the coming weeks; MRIs, blood work, etc.. However, prior to all those tests - as the Doctor instructed her to walk down the hallway, and as she did, as he turned to me and quietly said; “no right arm swing”, I knew.
Up until that point I had relied on the statistical probabilities that it couldn’t be Parkinson’s Disease. It is estimated that PD afflicts just over 1 million folks in the United States, with 50,000-60,000 newly diagnosed each year. Those with a PD diagnosis are predominantly male, over the age of 60. We were clearly residing at the outer edges of the bell-shaped curve.
A Parkinson’s diagnosis is essentially a clinical diagnosis so we were not surprised, (though we were a bit relieved), when the diagnostic test results all came back negative. (you don’t die from Parkinson’s - you die with it) This, combined with the statistical probability of a 48 year old female having PD may explain why the neurologist could not bring himself to say that she indeed had Parkinson’s. So I did.
He recommended two options; 1) return in six months for a follow up or 2) seek a second opinion. Though we still had much to learn, the one thing we did know was that Parkinson’s was not going to wait for us so we were certainly not going to wait for it. We chose the latter.
I wish I could say that I had bravely faced the next couple weeks after the neurologist appointment. I didn’t. She did. I cried. A lot. If anyone “deserved” a chronic, progressive degenerative disease it certainly was not her. In spite of this, not once have I heard her utter “why me?”.
We are people of faith, not the “oh, everything will be alright" version, more the “opposition in all things - endure to the end” variety. It has been in our faith we have sought and found great comfort. For me it was a particularly choice blessing at the hand of a trusted friend in which I found solace and hope. Indeed, an epiphany and with it the strength, courage, and resolve to face Parkinson’s head on. Together. Partners.
September 2011 - fifteen months after “the bounce” we found ourselves at the Oregon Health & Science University Parkinson’s Center of Oregon, one of the premier Centers of its kind. There we received the formal diagnosis of Young Onset Parkinson’s Disease.
It is with her “team” at OHSU that Carol continues to receive some of the finest PD treatment available. Including, due its geographical closeness, her participation in a clinical trial involving a potential neuroprotective treatment. In this we are truly blessed.
Nearly three years have passed since that D-Day. Her symptoms, remain about where there were at that time. Parkinson's does not take a day off. It is with us 24/7. We have not allowed it to significantly alter or diminish our quality of life. Her handwriting, fine motor skills with her right hand, a bit more pronounced tremor, and a good night’s sleep are the prevalent challenges she currently faces. We both remain active runners. (Carol will run her 2nd Marathon later this month - more on that later)
We are not fragile. We are not victims.
We have learned much about PD and the Parkinson’s community since that September day. We have discovered that it truly is the “boutique” disease. Everyone’s manifestation of symptoms vary - like snowflakes - some have said. We have learned that everyone has their own unique story of discovery and how they face the daily challenges that PD presents. We have learned we are in a race of a different kind. Can we do all that we can do to remain active to slow the progression of the disease while medical research efforts and innovations to speed disease modifying treatments and possibly a cure come to fruition. This is our challenge.
It is in this challenge that we have come to appreciate the amazing work of the Michael J. Fox Foundation, it’s team, and its work to ultimately find a cure for Parkinson’s. It is an effort we are proud to be part of.
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| with Debi Brooks Co-founder MJFF |
Five million people worldwide are living with Parkinson's disease - a chronic, degenerative neurological disorder. There is no known cure for Parkinson's disease.
Team Fox is The Michael J. Fox Foundation's (MJFF) grassroots community fundraising program. It is made up of thousands of people worldwide who raise funds and awareness for Parkinson's disease research. All funds raised through Team Fox go directly to MJFF to further its mission to accelerate the delivery of life-changing treatments, and ultimately a cure, to people with Parkinson's disease.
Until now only our family and a few close friends were aware of her diagnosis.
In my wife's words;
"Reason one for full disclosure now is that some people know, others don’t, some who see me in person may suspect but don’t want to say anything. It’s awkward. Fortunately my symptoms aren’t too obvious, yet. I can still do most of what I want to do, including running.
Reason two ... is to ask for your help. In less than two weeks I will be running 26.2 miles (yes, consecutively!) in the Pocatello, ID Marathon. To give this craziness some purpose, I’m teaming up with the Michael J Fox Foundation to ask people who may want to help me and others with Parkinson’s, by sponsoring me in this effort. My hope is to have as many of you as possible sponsor me with an amount of $26.20 to honor the marathon distance. (Of course, any amount would be fantastic)."
The following link will take to our Team Fox NW donation page -
To read Carol's Story -
For More Information on MJFF, Team Fox & Team Fox NW -
This year, thanks to the generous support of an anonymous donor, 100% of Team Fox proceeds will go directly to research efforts to help speed a cure for Parkinson's.
Help us speed a cure for Parkinson's!
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