Monday, April 5, 2010

The Battle vs. the War

You're probably wondering, "Where is he? It's been almost 90 days since his last post. Is that good news or bad???

Okay, okay. What do you want to hear first - the good news or the bad news? Right. The good news is: the tremor is totally gone from my right hand and with it went the terrible ache that never let me relax my right arm for more that 30 seconds at a time... NO MORE TREMOR, NO MORE NAGGING ACHE. That's the good (great) news. The bad news is that the war still rages... a major battle has been won, but that monster is just below the surface, looking for a chance to break through.

That's actually why you haven't heard from me for a while. I didn't want to be negative.

There are two groups of people reading this blog: People who have PD and those who don't. For those of you with PD, it was very important for me to NOT disuade you from having DBS. This surgery was the best thing I could have ever done - and I'd do it again in a heartbeat, if I had to do it all over again. If you have PD and your movement disorder specialist thinks it will address your symptoms, then GO FOR IT! Don't be afraid and don't look back. Years ago people were in awe of heart bypass surgery. Now it's routine. Ten years from now... who knows - brain surgery might be routine, too.

Others of you are care givers, or maybe you know Beckie and I and just want to keep in touch with our progress. In any case, I didn't want to post a report with a negative bent.


It all comes down to what my expectations were vs. reality.

The first month of my battery operated brain was incredibly good. I haven't gone back to read what I said at that time, but I remember how I felt and thought. It was similar to the first dose of Sinemet (dopamine) five years ago. I felt NORMAL. I could think clearly, talk freely, type quickly, walk normally, with energy and a smile on my previously sagging face. I was ecstatic and I expected that freedom to continue.

Today, the honeymoon is over and like my doctor said to me a couple of weeks ago, "Ken, you have Parkinsons." That's not what I wanted to hear. (I just corrected my typing of the last sentence... and should have left it the way it was: 'That's not whaaaaaaaaaaaaaaat i wanted to hear." maybe thaaaaaaaaaaaaaa (there it goes again) will paint you a picture of what is going on.

DBS gave me a new life... but it didn't cure me. I really wanted to believe it would make everything excellent. Today, it's good - not excellent. More later...