Sunday, September 30, 2012

Walk on the beach anyway.



I've felt hideous for the last few days.  My body temperature fluctuates; I'm always too hot or too cold.  The dyskinesia twists my torso back and forth, and now my lower back is objecting LOUDLY.  l have trouble sleeping and trouble concentrating; last night I lay in bed until after midnight, with my left foot and leg cramping and twisting up all the way to my thigh..  I'm weak and shaky and when I'm "off" my meds,  I have the worst bradykinesia (slow movements) I've ever had.  However...

We went to the beach yesterday anyway.  I figured I wasn't going to be feeling significantly better the next day, and I didn't want to miss the beautiful beach weather.  My husband looked at me like I was crazy when I said that, but we went ahead and packed up the dog and some drinks and stuff and went to the beach.  We had a lovely time, and even though I felt a little worse physically, my soul was peaceful and my mind refreshed.  I love it when I just do what I want, regardless of what PD wants...

Sometimes you have to stop waiting until you feel better, and just go to the beach anyway.

Saturday, September 22, 2012

I'm not worried.

My "Dday" (Diagnosis Day) anniversary just passed a couple days ago.  This year, my thoughts are all about DBS.  I'm really not worried about the operation; the risks are few and the payoff is potentially huge.  Why then am I so weepy?  I guess I just resent having to do this at all.  That's not right, though; I should be glad that this option is available now.  I AM glad.  I just wish I didn't have to have a couple of holes drilled in my head in order to feel normal.  Here's a list of "plusses" to DBS surgery:

1.) I can finally say "I can't come to work tomorrow; I'm having brain surgery".  I've always wanted to say that.

2.)  I won't have to go through that scanner thingy at the airport anymore.

3.) I can call myself a "Bionic Woman".  Just don't ask me to run in slow motion.

4.)  I can pretend to be in that episode of Star Trek where Spock's brain is removed and they were making his body work with a remote control device.

Well, all of that is on top of the main advantage; cutting down on medication and feeling normal again. A lot to look forward to!

Saturday, September 15, 2012

DBS Evaluation Appointment Made... Finally

Stanford Hospital finally called me and gave me the dates and times of the 4 appointments I apparently  need to assess whether I'm a good candidate for Deep Brain Stimulation (DBS) surgery or not.  I have 2 appointments on November 7th, and 2 on November 8th.  The first one is just a consultation; I think this is where I get a chance to ask my questions.  There are lots of little things I want to know about, like:  what are the risks and percentages? How long is the recovery time typically? Do I really have to shave my head?  Can I still go swimming (after healing)?  etc., etc., etc.  The next 3 appointments are to assess my symptoms , I gather.

I hope I "pass" these tests, whatever that means.  I know that people look at me and think I look fine most of the time, and I AM fine most of the time, but in order to stay that way, I am now having to take medication every 2 hours.  The side effects are starting to catch up with me, especially the dyskinesia (unwanted, uncontrollable movements ala Michael J. Fox).  Also, the effort necessary to do ordinary things and still look "normal" is becoming exhausting.  I'm looking forward to being able to cut down on my medications or maybe even do without them entirely for awhile.

DBS is not a cure, I know that.  It doesn't last forever; I can see that for myself.  However, if I can improve my quality of life as dramatically as DBS reportedly can, why not do that while I'm still relatively young and otherwise in good health?  It could give me years more of normal or near normal functioning; I could keep working and get my full retirement (for which I am eligible in about 2 and a half years).  On the other hand, it is BRAIN SURGERY, and those two words together make me a little nervous.

I take heart, though, when I hear and read about others' experience.  Case in point: my friend Sherri at Parkinson's Journey (see my blog list).  Sherri is just one of the toughest PD fighters there is.  Her positive attitude is hard to beat.  Here's a link to her article about the DBS surgery that she went through:
http://parkinsonsjourney.com/my-journey-with-dbs-deep-brain-stimulation/

I wish I didn't have to wait until November to get started on this side trip in my walk with Parkinson's.  Once I get the notion to do something, I want to do it and get it over with, or know a very good reason why I shouldn't!
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About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.