Stories

Barbara

Running Through it All

Diagnosed at 36

The year was 1988. At 36, I was preparing to run my second Olympic Trials marathon. I had been noticing for months before that my toes on my left foot would curl under when I ran. It was starting to alter my gait. More visible to others, was the tremor in my left arm. It was in April that the neurologist finally named my symptoms Parkinson ’s disease.

I ran the Trials marathon in May, not as a contender for the Olympic team but as a qualifying participant, and finding some sort of perverted solace in the thought that I was probably the only participant with PD. I got off to a slow start, running in the back of the pack of the 200 fastest female marathoners in the country. I had a lot of time to think during that 26.2 miles and a lot of the thinking was about my recent diagnosis. How much longer would I be running marathons, or running at all? How would this impact my marriage which had been strengthened by a mutual love of active endurance activities like running, bike touring and hiking. And what about the family we’d hoped to start?

I dragged myself to the finish line in about 3 hours. It felt like the slowest time I’d ever run and it was perhaps the longest period of indulgent introspection I’ve allowed myself since that diagnosis 23 years ago. The next 10 years was characterized by the usual experimentation with various drug combinations. Sinemet helped but I was always afraid to “use up” it’s effectiveness because of my early onset. I was lucky in that the progression of the PD seemed to be relatively slow and I was able to continue working. Still, my walking gait became mostly a shuffle and running without tripping was highly problematic. I had to drop out of the orchestra I was playing viola in because I couldn’t keep my bow on the string or control my fingers.

Fortunately, my husband was unflinching in his support and understanding. With the assurance of the doctors that my PD was not genetic, we decided to go ahead with our family plan and had two wonderful, healthy daughters. I worried about such things as controlling the tremor in my hands while I was nursing them, concerned that they would be scarred for life. (At twenty years, there is still no noticeable result). And there is no question that raising kids provided a significant distraction from the challenges of PD. Being a mom trumps almost any occupation I can think of when it comes to demands on attention.

Sinemet along with every other drug had its share of side effects which eventually became less tolerable that the PD symptoms they were controlling. When I read about DBS in 1999, I immediately asked to be referred to Stanford and became the fourth patient to undergo DBS surgery there. When both electrodes were in place, it was like rewinding the clock. My most visible symptoms, the tremors and gait impairment virtually disappeared.
Unfortunately, there was a tradeoff. DBS seems to have negatively impacted my voice, both the volume and enunciation. It was a challenge to program the Stimulator to optimally to control the tremors but not make my jaw contort. For the most part, I feel like I’ve given up my voice to gain control of the rest of my body. While at first, that seemed a reasonable tradeoff, I have come to realize how much people’s perceptions of us are based on voice and how great an impact lack of vocal assertiveness can have on one’s self confidence.

I have been through several sessions of Lee Silverman Voice Training with 2 different therapists. I’ve picked up some valuable insights and exercises but LSVT’s effectiveness is limited unless you make an ongoing commitment to continue practicing the exercises and realize that your perception of your volume is not what others are perceiving.

At 58 now, 12 years after DBS and 23 years after initial diagnosis, and with my kids away at college, I devote a significant part of my day to maintaining functionality. I run (slowly) 3 to 4 miles a day and do a Pilates warm down routine. I bike to my various volunteer commitments. I do vocal exercises which are partly LSVT based and partly musical. I play the piano to reinforce my singing exercises, and to work my fingers and my brain in learning new music. I read newspaper or magazine articles out loud so someone else can understand them. I volunteer to take library books to shut-ins, do Friendly Visitations through my church, drive seniors to do their grocery shopping, assist seniors with their taxes, and visit regularly with a fellow LSVT alum, all of which help me practice my speaking with people who don’t hear very well. Sometimes, it’s really exhausting to do what feels like yelling for so long. But these are mostly people who don’t have a lot of social opportunities and are very patient with my need to speak slowly and loudly to be understood.

Although my doctors have prescribed a minimal dose of Sinemet, I have chosen not to take any PD medication for the last 8 years. Balance is my biggest risk factor now. I recently fell backward off a stair onto a utility sink and broke two ribs. But my greatest regret about early onset PD is that my kids never knew me without Parkinson’s. They never saw me play in a string quartet or win a race or go on bicycle tours that covered 100 miles a day. And yet, when I read their school essays in which I occasionally creep into the subject matter, I realize they’ve found other strengths in me.

2 Comments

Thank you for your post. I was diagnosed just one week ago and my biggest fear is how will this impact my kids. (I have 4 six year olds). I don't want them to simply know me as my disease. I am glad to hear yours are doing well, it's reassuring.

Stacy, Nov 29, 2012

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Ihave had Parkinsons for 14 yrs .I had dbs about 7 years ago (now 60) The op helped in that I was able to cut down on my medication and thus the usual side effects The op has also affected my speech quite badly,I take pexola slow release and a small dose of carbilev which helps me a lot ,I play golf at least 3 x 18 holes a week ,and travel about 1000 kms a week for my job, my biggest problem is a vvery tight cord ,a condition known as wire tethering. If and I have tried , I could get rid of this I would be the happiest person on earth.I would realy appreciate hearing from someone with a similar problem.

Darryl Foss, Aug 2, 2013

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