Sunday, December 30, 2012

Awake again at some ungodly hour; it's almost 5:00 a.m. and I've been awake for 3 hours now.  i've heard that some large percentage of Parkinson's patients suffer from insomnia, but I wonder if it's the disease or the medication that causes it.  Probably a little of both.  It's so quiet; I wonder how many other Parkies like me are awake now? So strange; I never was an early riser until now.  The good news is that I won't accidentally sleep through "Sunday Morning"!  Always a silver lining.  Well, I guess i'd better go take some dangerous drugs now...

Thursday, December 27, 2012

Getting excited about DBS, now!

Woo hoo! I just found out that Healthline has picked my blog as a candidate for the 2012 health blog of the year.  If I win, I get $1000, which I would use to get myself and my husband to the Parkinson's Unity Walk in NYC in April if I'm up to it.  If I'm not up to it, I will donate half of the money to the Michael J. Fox Foundation for Parkinson's Disease Research and put the rest towards a family vacation when I am up to it.  Actually, I'm just thrilled to even be nominated, so I'm content right now.

I find that I'm looking forward to DBS surgery more and more.  Not to the surgery itself, of course (although that is very interesting), but to how I'm going to feel afterwards.  DBS is NOT a cure, and does NOT slow the progression of the disease, but it can be like a temporary miracle for those of us who struggle with PD every day.  Sometimes it's difficult, tiring, or even painful to do the simplest things, and most of the time I can't even read a book comfortably.  So, Creator, if you're listening, here is my wish list of things that I hope and pray that DBS will do for me.

1.)  That it will help me to keep working for at least a couple of years, so that I can get my 30 years in (I have 28 years now).
2.)  That it will even out the peaks and valleys in my PD symptoms, so that I can plan my activities a little better.
3.) That I can cut down on my medications and thus avoid the more severe side effects.
4.) That it will help me sleep a little better.

And one more wish, if at all possible, my dear Creator:

I would like to be able to dance again, and not just for one dance..

Sunday, December 16, 2012

A whole new me?

I am scheduled! I have a surgery date now.  Well, dates, actually; it takes more than one operation to get this DBS system up and working.  My pre-op appointment which includes an MRI and an EKG as I understand it, will be on January 15th.  On the 24th of January, I get my head shaved and several metal pieces screwed into my skull.  These "fiducials" will guide the surgeon in finding the appropriate area of my brain to install the electrodes.  After they are installed, it's back to the lab for a CAT scan.  This CAT scan image will be combined with the MRI image to provide a brain "map" for the surgeon with everything lined up with the fiducials.  They will send me home that night with a turban of gauze, and when I come back the next day, (OFF medication) the real fun begins.  Holes will be drilled, electrodes will be implanted, fiducials removed.  I will have to spend a night or two in the hospital, then I can go home for a few days before the next stage; implantation of the stimulator control box in my chest and connection of the electrode wires to it.  There will be a break for a few weeks, and then the magic moment: they will turn the stimulator on, and I will get to begin my new life.

I can hardly wait! It sounds like a lot of discomfort and inconvenience to go through, but if I can cut down on the meds and feel better through the day without the fluctuations, it will be COMPLETELY worth it....

Friday, December 7, 2012

Why they call us "patients"

I knew that it would take time to travel from where I was back August to DBS surgery, but I had no idea it would take this much time.  The referral from my neurologist went out on August 14th, but I wasn't scheduled for the screening until November 7th.  My last screening appointment was on November 12th, and the doctor said that since the Movement Disorders review Board was meeting on November13th, I should be getting a call "soon" to let me know what the decision of the board was and to schedule an appointment with the surgeon.  Well, the weeks went by and nobody called, so I called them and found that my test results hadn't even been presented to the board yet.  So, after the next board meeting, I started calling every other day until finally I got through to someone who knew what was going on and scheduled my appointment with the surgeon.  I told her I guessed that that meant I had passed the review board's scrutiny, and she laughed and said "yes".   I guess I kind of knew that, but it would have been nice to get a reassuring phone call about it.  The next step will be to go see the surgeon next week and hopefully it won't take too much longer to get this surgery done and get on with life.

Sigh.... I guess this is why they call us "patients".

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.