Scott - I don't recall any significant problems with neck stiffness,
so it may have been that it has subsided since surgery or it hasn't
been a problem to being with (lead insertion on 10/13).

I went to the chiropractor for the 1st time this week because of
lower back problems and the Doc whipped my neck around just
like old times....

My wires go down the left side of the back of my neck. My battery is under my left pec. I had the whole thing done in one day. The only problem I had was that they had to open up a space to work behind my left ear and after that would hurt like hell at times. That was when pain killers became good friends.
They did tell me that some people have trouble with the wires in the neck. Mine are a little sore still if I press on them but otherwise they never hurt. It's all less with the passage of time. (had mine 10/13 also)

My problem still is the effect that the old meds have on me. I am still taking 4 50/200 ER sinemet every day and they make my legs ache in the muscles. I can walk thanks to the DBS but I still have the feeling of dystonia still lurking.
I think food still effects me like before. I understand that DBS does not fix that.

That's interesting, I was told no neck adjustments.

I'm about 8 weeks out (Surgery 10/26; battery 11/2; programming started 11/9). Brain swelling can come down, but have dropped to 1/3 of my medications. Too little or too much caused stiffness, so quite happy to be on three 25/100 during the day. One 50/200 ER at night.

Battery location (pec), cable on left side of my neck. Best medicine is a great Massage Therapist. I've always had Dystonia issues, but really helps to get those knots out.

That's really interesting. I will ask the Doc during the 'adjustment' appt.
if I can DEFINITELY still see a chiropractor. I also couldn't believe what I
was hearing when I brought it up previously.

Once again, food seems to be the biggest challenge. I have gone back and
forth, desperate to find a combo that works. After the last change to 2.5,
I seemed OK, not great, taking the single 23.75 in the morning as well as
one at night. I'm still trying to get back to that after 'falling off the wagon'
last week and reverting to 5 (total) per day. But, last week I did have a
legitimate excuse, my mother was near death, with severe dementia. They
explained to me that they can program out much if not most of tremor, but
when it comes to high stress scenarios like the above, there is just so much
they can do. That makes sense to me. And even then I was at less than a 1/3 of the regimen before DBS. So, no, I will NEVER complain about that, or anything else that is part of the DBS experience, so far.

If somehow I can make the total of 2 work again, I really think it could be
a key for eliminating the overall food complications. My reasoning is one
capsule early, say 8 or 8:30, and one at bedtime, should allow me to eat
starting at 9 and on throughout the day, as long as DBS is adequately
doing it's thing. And by the time I take the 2nd capsule as I get ready for
bed, I will hopefully be asleep before the other complications return.

I will be ready to try 3, then 4, soon if the 2 'plan' fails me. NO complaints :)

sorry to hear about your mother. Unfortunately everything that happens in our lives has an effect whether they are good or bad. I lost my sister to cancer in August and haven't really mourned yet but I do break out crying every once in a while. My parkinson's was effected and still is I think cause I live alone so my mind goes wandering a lot. My mom at 89 still is not too bad but as my only family left I dread anything happening. I always had my sister to rely on. My doctor suggested that I might try an antidepressant. Does anybody take one that they had good results with? thanks.

just curious how many grams of protein you ingest in 1 serving? if you have to have a continuous supply of l-dopa getting into your brain to be functional and can't depend on l-dopa being stored in the brain, then eating too much protein even with a DBS can negate the affect of the L-DOPA from your meds. those little amino acids from your ingested protein compete for entry into the blood with the L-DOPA from your rytary thru the small intestine, same competition getting past the BBB and those AAs from your food will overwhelm the l-dopa from your pills and eventually the l-dopa in your blood will be broken down. So maybe try taking an extra sinemet 25/100cr or 50/200CR an hour before eating or at the same time to give you some extra l-dopa? might not help since this isn't much L-DOPA but since it released fairly slowly might be less chance of dyskinesias if your're worried about that.

You know, I think what Soccertese stated is absolutely correct.

Not sure why it didn't occur to me earlier, until I saw his Post.


Thanks!!!!!

just think about how little l-dopa your brain really needs. 18mg of long lasting requip is all you need, and i''m assuming there's a 1:1 equivalence between requip and l-dopa, i.e. only 1 molecule per dopamine receptor. so if your're at the point where your brain isn't manufacturing or storing l-dopa, you need a constant tiny supply getting to your brain. if you take too much you'll get dyskinesias so you take just enough l-dopa and it doesn't take much protein to interfere with this delicate balance. so the strategies have been eat too much protein and deal with the inevitable OFF's, i can be off for 4 hrs if i lose self control and eat a can of tuna fish. another is to eat very small amounts of protein and another of course is to eat more protein in the evening when being off isn't fun but manageable.
i have tried this and it has worked at time, if you know in advance when you are going to eat take more C/L 20MIN before you eat, starting with 50mg and advancing no more than to 150mg if 50mg or 100mg doesn't work. of course you have to be careful. you basically want to get a C/L headstart over the amino acids you are ingesting. if you couldn't take the extra C/L before you eat, then you can still take it within 2hrs after you eat. just a thought.

i can eat a meal of 3/4 cup of brown rice, 1.5 cups of mixed vegetables which can contain some legumes, i use frozen vegetables so the protein content is on the package, and add whatever protein i want to to get to 4grams of protein and this doesn't interfere. pretty boring. i do suffer thru many offs because i'm hungry!

i have friends with DBS who i watch in disbelief/envy eat a turkey sandwhich and have no off's.

me thinks you'll just have to bite the bullet, find out how much protein you can eat at 1 sitting and adapt recipes. i'll post a link to a site offering meals for pd'ers later.

Today I had a little setback. I found out I have an infection. That's nothing to take lightly.I had complained about a stiff neck and the dr was observing me. I had sent him a half dozen pics. A small spot on my head they pressed on, and it opened up.Then he pressed on the side of my head, and it was quite tender. The odd thing is when he pressed on the Neurotransmitter,it wasn't sore, and it had quite a bit of infection on it. They drained blood from me to use with cultures, to narrow the antibiotic down.When I come home, I'll be on a pic line to finish the course of treatment, over the next couple months.Not helping my cause!