Wednesday, July 22, 2009

Improving at increments of .1 volts

So everybody wants to know... Did the operation work? Are you doing better? Do you feel better? The answer, like so many things in the Parkinson's world is coming slowly. But that answer seems to be yes.

How can I be almost a month down the road from the operation and just now coming up with that conclusion? There are a number of variables at play.

Variable one: the operation itself can cause a temporary lessening of symptoms. As the brain swells from the physical insult of the operation, it somehow copes better with the typical symptoms of Parkinson's: tremor, stiffness, slowness. This leaves the patient wondering post-op if it's the "Honeymoon" or the placebo effect or actual lasting improvement.


Variable two:
Once your stimulator is turned on, you begin to cut back on your pills, replacing medication with stimulation. So for a while you grope around with gradually raising your voltage while lowering your dosage. It takes time to find the balance. Because I move the voltage up in tiny increments of one tenth of a volt it has been a drawn-out process to replace the ability to move that I lost when I cut down my medicatiion. But I'm getting there.

Variable three: The head cold from Hell. My wife, son and Step mother all came down to help out and support me during the operation. They were punished for this good deed with a never-ending head cold that Pam is still recovering from. I got it too, presumably as punishment for their punishment. When one is sick on top of Parkinson's it ramps up your Parkinson's symptoms above their usual level. Throw that in with variables one and two, along with jet lag and lack of exercise, and you're looking through some muddy water.

Thanks to time and antibiotics some markers are emerging that add up to progress.

1.) TREMOR: What tremor?

2.) FREEZING: Episodes rarer as stimulation finally up to "critical mass"

3.) SINEMET INTAKE: About half the pre-operation level

4.) JOE COCKER: Amount of bizarre unwanted movements has been greatly reduced.

VERDICT: Progress!

9 comments:

Deirdre Helfferich said...

Excellent news, Peter. Fingers crossed up here at the 65th parallel. Keep sending me cartoons! They're great.

Peter Dunlap-Shohl said...

Roger Deirdre, and don't get heat stroke up there at the 65th!

Cybercartoonist

Tom in Nashville said...

I had my DBS surgery a little over 18 months ago. Finding the optimal setting has been & continues to be a slow process. Tremors down 90%, freezing down 50%. The off/too much med/ too little med cycle is down 80%.
Almost eliminated Sinemet, but still take Requip. Calf pain from dystonia is more noticeable, but PD is progressive & I have less of the other symptoms to complain about.
Overall, I am very satisfied that I had the surgery.

Peter Dunlap-Shohl said...

Hey Tom, thanks for the reassurance. Your numbers make me wonder, do you kep a log? If so, any tips? I'm topped out on my present voltage limit, will get further programming soon.

Take care, thanks for posting,

Pete

ps, you're not the banjo guy are you?

Tom in Nashville said...

Peter,

Yes, we do track daily, but not voltage. We log energy levels, mood levels, med's taken, etc.
I got tired of the constant adjustments +/- 0.1 to try to avoid taking PD meds (it was becoming a full-time job). So once we found the best leads for each side, I then tried to find a "comfortable" setting (for me 2.9V on the right & 3.0V on the left).
So in essence, I "set it & forget it" & supplement with meds.
The device works well enough that I can make it to the bathroom at night without help.

BTW, I can't carry a tune in a basket, so I'm not the banjo guy.

Tom

Peter Dunlap-Shohl said...

Wow, elaborate and disciplined. My hat is off to you. (Affording you a great view of my "Medical Mullet") Thanks for sharing your DBS strategy, will keep it in my mental toolkit for when I get frustrated with micro adjustments.

ps , to see the banjo man playing his banjo during his DBS operation, look up the post from a short while back entitled "In Case You Think You've Seen Everything".

Andrea said...

i am appreciating your posts, i just stumbled across your blog. my dad has pd and is thinking about dbs but has many reservations. it is good to hear both you and tom's experience. were there any resources you found especially helpful when you were in the decision making process?

thank you!

Tom in Nashville said...

Andrea,

Check out the manufacturer's website: http://www.medtronic.com/your-health/parkinsons-disease/treatment/index.htm. They also have a video you can watch.

My advice would be to see if he can qualify for the surgery with his insurance, before he makes a decision. It was $150K for the surgery, the device & one night in the hospital. (I waited for 9 months before I went ahead with the surgery).

If he is not a "good candidate" [doesn't respond to meds, shows signs of dementia, etc], then it's all academic.

If he can qualify, then you need to decide where to have the surgery. The local hospital will not suffice. It IS Brain Surgery, so check out different hospitals & their rate of "unsatisfactory outcomes."

I had my surgery at Vanderbilt.
Mayo Clinic, Cleveland Clinic & several Boston hospitals are also noted for their expertise.

Tom

Peter Dunlap-Shohl said...

Hi Andrea, thanks for your post. A great resource for me is http://health.groups.yahoo.com/group/DBSsurgery/messages?o=1

It's a Yahoo message list maintained by DBS veterans that is full of advice from people that have had the procedure. I get the digest version. Particularly helpful was Magda's pre-operation preparations list. You can search for it in the archives. It also gets re-posted frequently. Good luck to you and your Father.

Peter