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By oshroshr On 2013.01.17 19:47
I read all of the posts and find me in all of them in some way, 8 years into this and now facing the DBS and all those issues for my husband.

I missed the forum but we moved cross country to be by our kid and then mother in law passed who had lived with out for 18 years. But reading all of this helps me not feel alone. Apparently the criteria to qualify for the DBS is getting tougher and my husband tremors are getting severe. He cannot take enough meds to make tremor stop with hallucinating and we have switched to others with no relief.

Need some support as I am wearing out now.

By parkinit On 2013.01.18 20:43
osh - Welcome back. Yes, we see ourselves in many other postings. That is the blessing of this "resting place" for PD caregivers.

What meds are being taken by your PWP if I may ask?

By lurkingforacure On 2013.01.18 21:53
I posted an article about PD tremor not being so much about dopamine in a separate thread, maybe you can show this to the neuro and he may have some suggestions?

We have started adding in a few teaspoons of ground organic mucuna pruriens to a glass of water if things are really bad. I buy ours at Banyan Botannicals, I think it's called, although you can get it in many places. A one pound bag, which will last quite awhile, is about 20 bucks. The mucuna hits quickly, doesn't last very long, and when it wears off, it does so very fast, so you have to be aware that it could leave you high and dry. But it will get things moving, and we can't always say that about the PD drugs. It also has a mellowing affect, calming, and even though it is not supposed to cross the blood brain barrier because it does not have any carbidopa in it, it most definitely does. It is used extensively in aryuvedic medicine and has a history going back thousands of years. I know a lot of PWP in the US who have used it for years, although most of us still have to take the PD drugs because the mucuna wears off too fast and is too unpredictable in that way.

I hope this helps, they are learning more all the time, just not fast enough!

By LOHENGR1N On 2013.01.19 00:18
Lurking you are misunderstanding the article you posted. The study you posted is on the role of the locus coeruleus in Parkinson's resting tremor. Studying whether dopaminergic failure would involve complex noradrenergic adjustments leading to motor anomalies in the intact LC which might be only a nescessary state but not the direct cause of the resting tremor in PD.

They hypothesize that Parkinson tremor might represent the clinical sign of enhanced activity as possible compensatory process over dopanimergic loss

Or to put it in simpler terms they are studying to see if because of the dopamine loss the LC is overworking to compinsate for that loss and the resting tremor is a sign of this event in the LC. No where in the article does it state the tremor doesn't have anything to do with or little to do with loss of dopamine.

By oshroshr On 2013.01.19 09:56
Meds are all changed. Now. Sinemet and topiramate after being on mirapex for years.
Also switched neurologists.
Taken off amantadine and mirapex.

By oshroshr On 2013.01.19 09:58
Any thoughts on DBS?

By oshroshr On 2013.01.19 19:46
Meds are all changed. Now. Sinemet and topiramate after being on mirapex for years.
Also switched neurologists.
Taken off amantadine and mirapex.
Does capsule work?

By LOHENGR1N On 2013.01.20 00:01
Osh, First welcome back. In reading your post you mention that your Husbands tremor is getting severe. And He can't take enough medicine to make them stop. Do you mean that before the medicine he took stopped His tremor? He didn't have any for a time on the medicine? Wow! That was great, many of us hope to "calm down" our tremor, get it manageable. You know so if we fill up a coffee cup too full it might just slosh over a little instead of slopping it all over or shooting it out of the cup. Or to carry it in our mug and not a travel mug (sippy cup). In 27 years tremor has been my constant waking companion. But then some with Parkinson's don't have tremor so.....but if He has a tremor and for a time it was stopped by medication as I said that's great.

However, in time medication seems to lose it's effect on Parkinson's as the underlying disease progresses. That much control may not be achieved again. DBS is a last ditch effort to help, I don't know myself of any cases where the tremor stopped completely with it. There might be some but not that I know of and they are the exception rather than the rule. So if that is what He's hoping for from it, He might want to re-think it.

Others here know first hand of DBS and can fill you in better than I can about expectations and reality of it. I'm not trying to discourage you with my answers so please don't think that I am. I'm just saying He has been very fortunate controlling His tremor for a long time but this diseases sucks and eventually gets its way with Us. Hopefully with the new med's he's taking he can gain a level of control he can be comfortable with for another long time. Take care, best of luck and hang in there.

By oshroshr On 2013.01.20 01:20
Mirapex did not help tremor totally. Tremor got better when amantadine added. But then the hallucinations started.
Why do people get DBS if it does not help tremor?

By LOHENGR1N On 2013.01.20 08:37
Osh, I didn't say DBS doesn't help tremor, I'm saying it most likely won't stop it. Has His neurologist suggested DBS? Have you both discussed it with the medical field?

By Knoosy On 2013.01.20 22:44
What do you mean by "the DBS criteria are getting tougher"?

By parkinit On 2013.01.23 19:29
osh -

I could reply on the DBS, because my spouse has had it, but he doesn't have tremors, so I can't answer DBS in relationship to the tremor.

Why do people do it? It does improve quality of life for some time. How much time? It was about 1.5 years for us - things go better - longer time between pills and the pills were unpredictable on whether they would work or not. Three years later, I would say we are back to square one. Unpredictability with the pills and adjusting the DBS causes other problems that we cannot deal with (over drugged like stupor, more falling, slurring of speech).

Sometimes you may gain something with the DBS, but can often find that you trade something else. One adjustment caused constant drooling which we haven't been able to correct with meds, candy, gum, or readjusting the DBS device.

By oshroshr On 2013.01.26 22:23
The new neurologist is troubled by the severity of the tremors and tells us that there is nothing left to try for meds that my husband is not sensitive to.
He sent us to University teaching hospital movement disorder clinic where they have done many surgeries but said that the surgeries are not as easy to get covered any more if you have not been on an ample dose of sinemet for a period of time and the sinemet has to have a positive effect on symptoms.

I have wondered if there is a new technique regarding the surgery. Has anyone heard of it?
WE have to make a decision in March. Then only if they say he qualifies. So was wondering how things go once the initial surgery is done.

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