What's with my neck? A request for help

A new symptom has surfaced. When I'm "off", my neck seems to have a really hard time holding my head up.  I find myself looking only at the ground.   It becomes quite painful, though Gabapentin (Neurontin) seems to help.  When I sit at the computer,  I have to support my head on my hands/elbows to alleviate the pain.  The doctor says it's from working at the computer too much, but then why does it seem to get better when I'm "on"?

Anyone out there have this symptom?

Suffering and hope

For a while there, I thought I was never going to feel well again.  I was taking more medication than i was before, and having less 'on' time.   I am having a communication problem with my neurologist at Stanford.  She keeps telling me how i feel, and I keep telling her otherwise.  She doesn't listen to me sometimes.  She has all these charts and graphs and equations and algorithms that tell her how I am supposed to feel, but sometimes they are just dead wrong.  I am going back to my neurologist at Palo Alto Medical Foundation to see what he thinks.

All that being said, I suddenly started to feel better after my last "adjustment",  and now I have hope.  The doctor says that sometimes it can take a year to a year and a half to get it right.   Maybe  I just need to be more patient.

Bob and I are going to the Parkinson's Unity Walk in NYC on April 27th.  I can hardly wait!  Happy Parkinson's Awareness month to everyone!

Getting Better

I'm feeling better and stronger every day.  I have conquered the evil Mr. Nausea, and have found the secret lair of his boss, my nemesis, Dr. Parkinson's.  I am now doing battle with the infamous Dr. Parkinson's himself, using my new weapon; the DBS ray gun.

Meanwhile, in the real world...

I am feeling better every day.  I called Carlos and told him things were not working as well as I'd hoped, and he suggested I re-introduce my body to Sinemet (carbidopa/levadopa).  Just a little.  So, I did that and I feel pretty good, but I still think I need to "up" the voltage a little.  I'll find out on the 27th of March when I go back for my second "tuning".

It's a process.

Well, well.  That was harder than I thought it would be.  Turning the implant on and adjusting it was a  very interesting and tiring experience.  I had to be off my meds for one thing, and that is pure torture for me now.  I was so stiff and in so much pain!  They adjusted one side at a time, which meant that I was still in pain on the other side; very distracting.  They turned the voltage up slowly and waited for side effects to manifest, which, in my case meant dizziness.  For some people, it's tingling in the extremities, for others, one or two muscles start pulling on their own.  Others lose their powers of speech.  With me, if the voltage got too high, the room started spinning, and I started to feel disconnected from reality.  I then had to communicate this to the nurse (a very nice and patient young man named Carlos, with an engineer's understanding of how the implant was supposed to work and lots of experience in "tuning" people up).

I have been sick these last 4 days.  I mean sick to my stomach.  I think it's the Requip.  After all, I did stop taking it suddenly, then suddenly started again.  But for whatever the reason, I have been fighting nausea.  That is never fun.  So far this morning, it seems o.k. though.  Maybe I'm over it, and I can actually see how the implant is doing.  It's only just past 4:00 though, so we'll see when it's really morning....  Crossing my fingers...