[visserave]

Hello, I'm writing on behalf of my mother who has suddenly become very seriously ill. She was diagnosed with PD 6 years and while she has become progressively more symptomatic over the years, the degeneration has been slow and steady. Four months ago, she took a sudden and unexplained turn for the worse, has lost 35 pounds and now has limited functioning. The doctor prescribed Sinemet several weeks and while it has helped somewhat with her digestive issues, she is deteriorating so quickly even more than the previous drop. I think this is due to the Sinemet and reading several other posts, it seems that many other people have a negative reaction to it. I also read with great interest about Mucuna (Zandopa), but was wondering if this is used as a replacement to Sinemet or in addition to and if so, what would that mean in therms of timing? Her doctor is very against any 'alternative' treatments.
I would really appreciate any feedback. This is quite overwhelming. Thank you.

[lurkingforacure]

Originally Posted by visserave

Hello, I'm writing on behalf of my mother who has suddenly become very seriously ill. She was diagnosed with PD 6 years and while she has become progressively more symptomatic over the years, the degeneration has been slow and steady. Four months ago, she took a sudden and unexplained turn for the worse, has lost 35 pounds and now has limited functioning. The doctor prescribed Sinemet several weeks and while it has helped somewhat with her digestive issues, she is deteriorating so quickly even more than the previous drop. I think this is due to the Sinemet and reading several other posts, it seems that many other people have a negative reaction to it. I also read with great interest about Mucuna (Zandopa), but was wondering if this is used as a replacement to Sinemet or in addition to and if so, what would that mean in therms of timing? Her doctor is very against any 'alternative' treatments.
I would really appreciate any feedback. This is quite overwhelming. Thank you.

It would take way too long to discuss the pros and cons of mucuna, instead just search this forum as there are many posts about it. Lots on the internet too.

And FYI, mucuna is NOT the same as Zandopa: some of us use the mucuna pruriens raw organic powder, which is nothing but the mucuna: Zandopa has other things in it (don't know what they are....someone here wrote the company asking if it had aspartame in it and never got a reponse as far as I know...)

Don't expect your doc to help you: like most of us, you are probably on your own and the doc is not going to deviate from "accepted protocol", ie, drugs. Do your research, print it out when you talk with the doc so you have data to support your decision, and if you don't have one already, for heaven's sake get your mom's health care power of attorney, regular power of attorney, living will and related documents, now, before it may be too late to get them due to competency issues.

If you have brothers/sisters, get them on board, too, so your family is unified if possible. It will help you in dealing with your mom's medical people, as well as you, as carer for your mom.

[reverett123]

PD advances S-L-O-W-L-Y in the absence of other factors. The most common of these is a simple urinary tract infection. An abscessed tooth is another. And extreme trauma can do it as well.

Originally Posted by lurkingforacure

It would take way too long to discuss the pros and cons of mucuna, instead just search this forum as there are many posts about it. Lots on the internet too.

And FYI, mucuna is NOT the same as Zandopa: some of us use the mucuna pruriens raw organic powder, which is nothing but the mucuna: Zandopa has other things in it (don't know what they are....someone here wrote the company asking if it had aspartame in it and never got a reponse as far as I know...)

Don't expect your doc to help you: like most of us, you are probably on your own and the doc is not going to deviate from "accepted protocol", ie, drugs. Do your research, print it out when you talk with the doc so you have data to support your decision, and if you don't have one already, for heaven's sake get your mom's health care power of attorney, regular power of attorney, living will and related documents, now, before it may be too late to get them due to competency issues.

If you have brothers/sisters, get them on board, too, so your family is unified if possible. It will help you in dealing with your mom's medical people, as well as you, as carer for your mom.

[soccertese]

Originally Posted by visserave

Hello, I'm writing on behalf of my mother who has suddenly become very seriously ill. She was diagnosed with PD 6 years and while she has become progressively more symptomatic over the years, the degeneration has been slow and steady. Four months ago, she took a sudden and unexplained turn for the worse, has lost 35 pounds and now has limited functioning. The doctor prescribed Sinemet several weeks and while it has helped somewhat with her digestive issues, she is deteriorating so quickly even more than the previous drop. I think this is due to the Sinemet and reading several other posts, it seems that many other people have a negative reaction to it. I also read with great interest about Mucuna (Zandopa), but was wondering if this is used as a replacement to Sinemet or in addition to and if so, what would that mean in therms of timing? Her doctor is very against any 'alternative' treatments.
I would really appreciate any feedback. This is quite overwhelming. Thank you.

a few questions:
1. how old is your mother? what exactly do you mean by deteriorating? high doses of sinemet can cause dyskinesia, involuntary movement, hallucinations, etc. the obvious solution is to reduce the sinemet doseage.
2. what other drugs is she taking? hard to believe she was diagnosed 6 years ago and not taking any other pd drugs. what is the doseage of sinemet she is taking, strength and times/day? what do the tablets look like, just wanting to make sure she is taking the right drug. need color, shape and any numbers on the tablets. sinemet is a very safe drug.
3. have you gotten a 2nd opinion?
3. where in the world to you expect to get zandopa and how do you know what you are getting from india? your doctor may not want to stick his/her neck out and endorse alternative treatments but you want to trust what a few anonymous posters say about zandopa?
4. i was diagnosed 12 years ago, when i get worse it's usually an abrupt change, not gradual.