What I posted the day I returned to medication in September 2003 (with follow ups below regarding current dosings):
Lauren Sue is finally back on medication! Just taking
baby steps, but taking them nonetheless. I had my first appointment with my new neurologist since switching insurance
companies. I admit, I was very apprehensive about this appointment, finding it especially difficult to start over with
a new neurologist. This new neurologist has an office located in a medical building called THE SAJAK PAVALION.
Yes, as in Pat Sajak of The Wheel Of Fortune. Apparently he donated enough money to the medical center they
named the building in his honor.
I've told a few of you this before, but I was having trouble imagining that
I could receive decent care for my PD in a building funded by the selling of VOWELS! I had images of the nurse looking
like Vanna, evening gowns and all. I imaged Pat, himself, telling me that if I spun the wheel just right I could win
myself either a life-time supply of Sinemet, a trip for two to YOPD convention or maybe even landing on "THE CURE" and walking
away completely healed. Oh, if only life were like a game show.
I wasn't thrilled when I showed up at the infamous SAJAK Pavilion at 11:15am
to find that not only was there no Wheel of Fortune to spin or studio audience to be seen, but I wasn't SEEN
either; atleast not until 12:30pm. That's a HECK of a long wait for anyone, let alone a 2.5 year old who has the attention
span of a fruit fly on a rotting banana. When I was finally called back for my appointment, I found out that my long
wait was a result of an emergency appointment with another patient. It's comforting to know that when someone is in true
need, he will take the extra time.
Well, once it was finally my turn to be his patient, he told me his diagnosis:
I have Parkinson's. Not only do I have Parkinson's, but he clarified himself and said you have YOUNG onset
Parkinson's. Wow. Really?!?!? (Sigh). You know, perhaps this is really silly (or maybe some of you do the
very same thing) but I think a HUGE part of me was hoping what I ALWAYS hope when I go to see a new doctor: I'd go in, have
my examination and then he'd take the glasses off the bridge of his nose and rest his hands on his chin, looking me square
in the eyes and say: "Lauren, you've been misdiagnosed. You don't have Parkinson's. You have 'blah,blah,blah-virus'
which I can cure with this simple pill". At that point, he'd put his glasses on the table with one hand while reaching
in to his white lab jacket with the other, pulling out his magic pill. He'd point me in the direction of the water
fountain and with one swallow the tremor, the stiffness, the fatigue and all the other symptoms of "parkinson's" would be
But alas, he said no such thing. He told me the same thing my other neurologist
told me and all the other doctors I've seen since Fall of 2001, including the staff at NIH: You Have Parkinson's.
Yes, I still have Parkinson's. He told me that he felt STRONGLY about my returning to medication. I know,
you're all nodding your head in agreement. He also said I need to educate myself about DBS, because I'll eventually
be a perfect candidate, to which I said "now THAT scares the crap out of me". Baby steps. I agreed to medication
and he said that there's no need to wait until my son is completely weaned; the time is now.
I'll be taking a small dose, very small. I'll be taking only one 25/100
sinemet 30 mins before Breakfast and 30 mins before Lunch for now. Just a little, but atleast it's a start. He
also told me something I'd heard before, but good news is always worth repeating. He said that tremor predominate PD
is usually the better type of PD, slower to progress and less debilitating in the long run. Another thing he said that
I had heard before from other neurologists is that he's seen many Young Onsetters that had depression and dystonia appear
years before the initial tremor. Interesting facts.
Well, if you read this far, thanks! And thanks for the "good luck" wishes
I received. I really liked Sinemet when I was on it before, so I'll let you know if it's a repeat success.
Small update: After returning to medication, we slowly increased the dose,
since I was still nursing my youngest child at that time. I feel great on the Sinement, especially when the medication is
"on". Sinemet is truly amazing stuff! For the following year, I took one sinemet 3 times a day...
On July 1, 2004, I finally weaned my son and was able to
begin Amantadine (twice a day) to help boost the effects of the Sinemet...
In Fall of 2004, we added neurontin to my daily doses of
medication, prescribed in hopes of holding off future migraines, which are unrelated to the Parkinson's Disease. Coincidentally, the
neurotin does help with the tremor a bit...
In the Summer of 2005, my neurologist finally convinced me
that I really need to be more proactive in my personal fight to control my progressing Parkinson's Disease. While my pilates
really helped my over all health and strength, it isn't going to slow the progression of my currently-incurable disease. My
mid dose tremor was getting stronger and I was spending more time "off" rather than "on". Following his recommendation by
increasing my medication has made a huge difference. I wish I had relinquished earlier, knowing now how much better I can
feel when properly medicated.
I currently take one Sinemet (25/100) every 3 hours while
I'm awake, Amantadine twice a day, Neurontin twice a day and 1 prozac each morning. At a follow up appointment in September
2005, my neurologist was very pleased with my steady hands, my improved balance; basically, one would never know I'm a person
living with Parkinson's disease; as long as I'm medicated. He told me this was the "honeymoon" period with the medication,
to take one day at a time and to enjoy it while it lasted, a grim but honest reminder that nothing lasts forever. But
to quote Christopher Reeves, "once we choose hope, everything is possible"...and I am hopeful that this is one honeymoon that
will never have to end...