[rosebud]

This is a carry over from "Is Sinemet Addictive". Read the last page of posts, in particular mine and Bonny S-ClayRiley and Paula's. I have the name of another woman with the same issues...If you feel like we do, let us know.
There is power in numbers. I do know 1 person who got of all the meds and restored her dopamine supplies. The toughest part is getting off the meds.
No wonder in the old days they thought you were posessed by an "evil spirit"...you were!

..Joy

[smithclayriley]

Right on Rosebud. Reading your post (sipping Gatorade with Glutamine and Creatine in it and taking my L- Tyrosine and Niacin during the 12 hours I don't do dopamine) I'm sure one dopamine cell of my own kicked in just because................because I'm trying! I'm sure I'm off base; Glutamine is supposed to be done intravenously for starters'. I follow a similar supplement routine that reverett123 has with all his posts as well. I am interested in your connection with the women who did get off dopamine successfully.

Bonnie

[lou_lou]

http://www.pdrecovery.org/pub_recovery.php

Recovery from
Parkinson’s Disease
the cause and the effective treatment of
Parkinson’s disease according to
principles of traditional Asian medicine

first page
the quote I found in the literature which thrilled me

“Although, at present, uninformed as to the precise nature of the disease, still it
ought not to be considered as one against which there exists no countervailing
remedy.” — James Parkinson, 18171
__________

a poem for Ibbey

Ella Wheeler Wilcox

The Truth Teller lifts the curtain,
And shows us the people’s plight;
And everything seems uncertain,
And nothing at all looks right.
Yet out of the blackness groping,
My heart finds a world in bloom;
For it somehow is fashioned for hoping,
And it cannot live in the gloom.

He tells us from border to border,
That race is warring with race;
With riot and mad disorder,
The earth is a wretched place;
And yet ere the sun is setting
I am thinking of peace, not strife;
For my heart has a way of forgetting
All things save the joy of life.

I heard in my Youth’s beginning
That earth was a region of woe,
And trouble, and sorrow, and sinning:
The Truth Teller told me so.
I knew it was true, and tragic;
And I mourned over much that was wrong;
And then, by some curious magic,
The heart of me burst into song.

The years have been going, going,
A mixture of pleasure and pain;
But the Truth Teller’s books are showing
That evil is on the gain.
And I know that I ought to be grieving,
And I should be too sad to sing;
But somehow I keep on believing
That life is a glorious thing.

[paula_w]

Rosebud,

i have never heard dystonia defined as a variation of tremor- altho I knew it was muscle contraction- because I have no outward tremor. That makes sense tho, because I do get small tremoring around the mouth, chin and certainly have internal tremoring - it's shown up on EKGs and heart monitors. These tremors are where I get my dystonia - in the feet (toes), neck, shoulders, chest and arms.

paula

[smithclayriley]

Originally Posted by rosebud

This is a carry over from "Is Sinemet Addictive". Read the last page of posts, in particular mine and Bonny S-ClayRiley and Paula's. I have the name of another woman with the same issues...If you feel like we do, let us know.
..Joy

I just found out I have a pinched nerve in my neck (for yrs). This can cause paralysis and limb numbness and also affects the nerves that control breathing (which is a new symptom I have been experiencing) thus causing anxiety. Go figure!

[Ibken]

[QUOTE=smithclayriley;270742]I just found out I have a pinched nerve in my neck (for yrs). This can cause paralysis and limb numbness and also affects the nerves that control breathing (which is a new symptom I have been experiencing) thus causing anxiety. Go figure![/QUOTE

Ah, Bonnie,
What are you going to do about the nerve? Who took the exrays - chiro, neuro, ortho or other? I feel pinched from head to toe. I'm not sure where to turn: chiro/massage/physical therapy/amatsu/other?
I hope you're feeling better w/ your living situation. Truly. I'm looking at the possibility of a similar scenario and it's scary, scary. Ideally, I would like to share living space and 'amenities" with other pwp. I had this experience to a degree in Little Rock w/ the EECP study and it remains the highpoint of the pd years to date. There really oughta be a place!

ibby

[Laowantong]

Rosebud, Bonnie, my father-in-law has already started his weaning from Sinemet. Today is the third day. So far so good. I will report the details in a couple of days when the trend is clear.

Yesterday, they went to a seminar. Lo and behold, the doctor giving the seminar was his neuro. After the seminar, he told the neuro that after taking the meds regularly, his OFF time just has become so much worse. The neuro said that it's probably because his brain couldn't get use to the fluctuation of dopamine levels. When he asked if he could wean from Sinement, the doctor said that once you were on it, it's very difficult to get off. To us, the only logical explanation is that the introduction of dopamine into the brain discourages the endogenous formation of it.

Same goes for agonist, the doctor said. Once you are on, it's hard to get off. Weaning from it will make you extremely uncomfortable, he said.

We really wished he had told us before we took the med regularly.

So after the seminar, he is firmer than ever to wean from the med.

Has any of you started too?

[smithclayriley]

Ah, Bonnie,
What are you going to do about the nerve? Who took the ex rays - chiro, neuro, ortho or other? I feel pinched from head to toe. I'm not sure where to turn: chiro/massage/physical therapy/amatsu/other?
I hope you're feeling better w/ your living situation. Truly. I'm looking at the possibility of a similar scenario and it's scary, scary. Ideally, I would like to share living space and 'amenities" with other pwp. I had this experience to a degree in Little Rock w/ the EECP study and it remains the highpoint of the pd years to date. There really oughta be a place!

ibby[/QUOTE]

Ibby, I also had the same idea of sharing a place with another pwp and have looked all over the island for the type of place where there were other single, middle age people like myself. If I get pro-active again it is something I'd like to campaign for. My GP got me the x-ray done. Another interesting thing is I put my neck out in my 20's and 30's and my pd dx. was based on the fact I had a frozen shoulder. It was getting better through physio, swimming and I hired a personal trainer to come to my house when I started having back problems (sciatica) and couldn't walk. I have booked a chiro and will go get acupuncture as well and I am seeing a Natural-path.

[paula_w]

There are some things that trouble me in this thread and it's no one's fault, because this is an open minded forum and everybody wants the same thing. But I wouldn't wean off sinemet because I read it here. I hope I don't offend anyone this time; I don't want to. But in our open mindedness, i see a newcomer telling a father to go off sinemet.

i agree with what everyone says. i had worse offs after starting sinemet, rattle on like a Park-insane person on too much sinemet. But i wouldn't avoid it to be non functional or possibly cause myself to fall or whatever. We don't always know what playing around with meds will cost us and losses may not be regained.

I say this as a disclaimer. Whatever works - I'm right behind it. But keeping the reputation of this forum intact is becoming productive and doctors hate when we think we know something they don't and they discredit the information. They could have a field day with convincing a new person not to take sinemet.

We are trying to create a new paradigm.....it's not easy!! Forgot to say I disagree with the neuro who said it's as difficult to get off an agonist as it is to get off sinemet.

respectfuly,
paula

[smithclayriley]

Originally Posted by Laowantong

Rosebud, Bonnie, my father-in-law has already started his weaning from Sinemet. Today is the third day. So far so good. I will report the details in a couple of days when the trend is clear.

Yesterday, they went to a seminar. Lo and behold, the doctor giving the seminar was his neuro. After the seminar, he told the neuro that after taking the meds regularly, his OFF time just has become so much worse. The neuro said that it's probably because his brain couldn't get use to the fluctuation of dopamine levels. When he asked if he could wean from Sinement, the doctor said that once you were on it, it's very difficult to get off. To us, the only logical explanation is that the introduction of dopamine into the brain discourages the endogenous formation of it.

Same goes for agonist, the doctor said. Once you are on, it's hard to get off. Weaning from it will make you extremely uncomfortable, he said.

We really wished he had told us before we took the med regularly.

So after the seminar, he is firmer than ever to wean from the med.

Has any of you started too?

I went off my agonist in 9 days (I ended up having a breakdown). I'd recommend 6 weeks, I followed the Mayo Clinic reduction plan. I have started ramping off my dopamine and it is very difficult and will take up two years. I have no other choice I get pd when I take it or symptomatic pd, only worse. The pain is unbelievable.