What does Parkinson's Feel Like...Now

I thought that since my PD has advanced and my weapons against it have been upgraded, I should revisit the "What Does Parkinson's Feel Like" article.

Because of the DBS implant, i don't often have really bad symptoms, but sometimes...you remember that old Mickey Mouse cartoon where Mickey and Donald and Goofy end up in a giant's castle and Goofy falls into the Jello on the dinner table?  It was so funny to watch him struggle to get out of the gelatin, moving so slowly and getting very frustrated.  Well, that's what Parkinson's feels like to me sometimes.  Not so funny.  I try to walk faster and I simply can't.  I try to unscrew a cap from a bottle or jar and I move so slowly!  And then there's my face.  Mom always used to say "don't make faces; what if your face froze that way?" What if, indeed... I feel myself sitting there with an idiotic look on my face, usually an entirely inappropriate look, and it's very hard to change expressions.  I'm sure people must think I'm either a sour old lady, or a harmless, grinning idiot.  My voice is getting softer, my speech slurs like I've had one too many martinis.  I have too much saliva in my mouth, so when someone asks me a question, sometimes all that comes out is a bubble.  The fatigue is overwhelming, even if the other symptoms are under control.  Our house is deteriorating around us, i can't do more than about half an hour of housework at time, and since I'm still working full time, I'm usually not up for even that when we get home.

I know that I'm very lucky; the DBS is working like magic for me, and I shouldn't complain.  I'm just getting a little tired of the whole thing.  I need a cure.

If this is Parkinson's Disease, he can have it back...

It's all in your...neck.

Not everything is Parkinson's.  I have to keep reminding myself of this.  Remember when I said the pain in my neck, shoulders, upper back and arms was getting better?  It wasn't.  It's back, and worse than before.  I went to a bright young doctor in physical medicine, and he ordered xrays of my neck and shoulder.  My shoulder was fine; here's what the report on my neck said:

"Prominent degenerative changes at C5-6, primarily characterized by marked disc narrowing, endplate sclerosis and moderate marginal hypertrophic spurring.  Mild disc narrowing at C3-4 and C4-5.  Mild scoliosis convex to the left and scattered bilateral facet hypertrohy."

I, of course, had to look all this up to find out what it meant in English.  Turns out, the "C" numbers refer to the 7 vertebrae in the neck (cervical vertebrae). "Disc narrowing" (AKA "Cervical Stenosis") means narrowing of the channel in the vertebrae where the spinal chord goes, sometimes causing pressure on the spinal chord, which, of course can wreak havoc on your body. "Endplate Sclerosis" is a  thickening of the bone in the upper and lower ends of the vertebrae.  Why this is a problem, I don't know.  "Hypertrophic spurring" means bone spurs; growths of bone which sometimes impinge on nerves or the spinal chord or something which shouldn't be impinged on.  "Scoliosis" is a tendency for the spine to curve in the horizontal direction one way or another. "facet hypertrophy" is an enlarging of the facet joints of the spine sometimes causing pressure on adjacent nerves.

None of this sounds good to me, especially disc narrowing, which often has to be treated with surgery.

i thought my pain was parkinson's related.  Guess not.  It's all in my neck...

What a difference!

This is the first morning in 6 months that I have woken up with hardly any pain and no Parkinson's symptoms at all.  I went in to Stanford for a DBS adjustment last week, and not only did they adjust it so that the right and left sides of my body match, they also gave me the power of adjusting it myself a little bit.  I took advantage of this yesterday and bumped up the signal on the left side of my body just 0.1V (from 2.9V to 3.0V).  What a difference!  The pain in my neck, arms and shoulders slowly faded away.  Walking became easier.  Tremor disappeared entirely, rigidity melted to almost nothing.  I hope this lasts!

The Acid Test; went to Disneyland

We went to Disneyland for the first week of August; boy, what a test of my wellness and endurance!  I have a handicapped placard now, and the only time we used it was when we parked at Universal Studios on the one day we went there.  The rest of the time we walked.  We walked to the IHOP for breakfast, then to Disneyland and Disney's California Adventure where we walked all day, then we walked back to our hotel at night.  According to Bob's pedometer, we walked an average of 15 miles a day for 6 days!

And through all this, i felt great.  that's the bottom line; I have reached stability.  Thank goodness for medical science.  i can't imagine what hell people went through before we had medications and surgeries for parkinson's.