From the City of Angels to Miracles
Diagnosed at 35
If you had been in my neighborhood park (La Cienega Park) this morning at about 9:30 A.M., you would have seen an odd sight: a man in a fedora hat, with ugly (or at least unstylish) glasses, a very stylish snap-brim hat, carrying a cane in his right hand. None of this was itself unusual, or particularly
interesting, except for two facts: the man was jogging, and smiling. And of the greatest interest to me I was him (or he was me, or whatever).
Let me take a step back and explain to you who I am, and how I came to be here. My name is Dan, and I've been living with this horrible disease for 13 years now diagnosed 12 years ago, which was preceded by one year of nonsense by doctors and others assuring me that I couldn't possibly have Parkinson's.
My back story is far too long to tell here, and I find that I'm less interested in telling it as the years go by. I'd prefer to focus on the now, and try to prepare for the future. Suffice it to say that by the end of last year, I was taking some 20 pills a day (1 Stalevo 150, 3 Stalevo 100, 1 Azilect, 4 Amantadine, 2 Buspirone, 2 Clonazepam 0.25, 1 Clonazepam 0.5, 1 Lexapro, 2 Requip XL, and 3 Trihexaphenidyl). I was taking all of these wonderful medications and I was miserable.
Because I am so sensitive to Sinemet, it has been an increasingly difficult balancing act (pun fully intended!) to take care of the dystonia, tremors, and bradykinesia without sending me into a full-on dyskinetic episode. The wire on which I was balancing was getting narrower, and it felt like someone had said "As long as you're up there, would you mind juggling these three balls, as well?"
I had considered DBS (deep brain stimulation) surgery for about a year, when suddenly, at the beginning of this year, my world changed. I could no longer run -- I had fallen at least 50 times, and just couldn't take it any more. Running kept me sane, and probably helped my PD -- although research is inconclusive on this point, I strongly believe that vigorous exercise can be neuroprotective. (Ask me where I went to medical school, and I'll tell you -- none of your business!)
This spring, I finally decided to have the DBS surgery. I had the surgery one side at a time (this is quite common), and initially had the implant placed in the right side of the brain (which controls the left side of the body) at the beginning of July. Then, after an unanticipated "complication" namely, a hematoma the size of a tennis ball between my right shoulder and the right chest cavity in which the surgeon had placed the DBS battery -- was dealt with and explained, I had the surgery for the second side done on August 17th.
Which brings me back to the park today. The fedora covers my scars (I still have about 15 staples to be removed from my head), the cane is really sort of a metaphorical crutch (I haven't fallen in a while, but it's good to have the cane just in case), and the glasses -- well, they are what they are.
My first surgery restored my natural left arm swing, which I had not experienced in over a decade. The second surgery took care -- overnight --- of the "toes curling under" dystonia, which had made it impossible to move for the first 45 minutes of the day -- that is, until I took my first dose of pills.
Behind all of this protective gear, that was me, jogging and smiling. Jogging because I could; smiling because I could jog. I still have a number of symptoms that may or may not be addressed by my DBS surgery, but the DBS has given me something I haven't had in a long time -- hope. For this, I am grateful to my neurologist, neurosurgeon, and nurse practitioner (all of whom were, and are top-notch), and my wife (who is also top-notch). For the swinging left arm and the non-dystonic right foot, which feel to me like minor miracles, I am grateful to whoever is in charge of miracles around here.