New to amino acid treatment for PD
 

My, Wife has been with dr. Hinz program for 4 months. She has gotten to a point where she is having a lot of dsykinesia. We are wondering if anyone else has had this experience with the program and how long it lasted. We are trying to stay the course but it is hard. Thanks for any replies.

Greg,

Can you give a little more background about your wife regarding PD?
Age?
Weight? (gain/loss in last few years?)
First Dx
Current medication?
Is she being seen by a MDS? Neurologist? PCP?
Other issues.
Optimistic/Pessimistic?

Please understand I am just a PWP, not a doctor.

I've read other folks who have tried Dr. Heinz treatment, and for 20% it seems to have really helped. For the other 80% didn't see the improvement.

My sister is Vegan, very into nutrient and keeping things balance. At 68 she can still do a 1/2 Trialathlon, but her knees have taken a pounding and she limits her competition to sprints for fun. (1/2 mile swim, 12 mile bike, and 3 mile run). Retired Hospice RN, so very into eating well. I had hoped for a magic pill, milkshakes, and sitting on the couch. She didn't buy into that one bit! Darn it!

Biggest secrets to living well with PD: Exercise, eating well, and getting a good nights sleep. For me I really try my best at two of three (sleep is an issue).

Irony is as I have gone from three hours to five hours sleep, I'm doing better. Medicine is well balanced for me. Been increasing my exercise and feeling better. I'm still way too heavy (6'3" 270#... but down from 295#). Irony is waist got smaller, but weight went up at the same time (more muscle).

So post up to the above questions, and we may have some good suggestions/thoughts... please keep in mind we are PWP (people with Parkinson's) so anything you need to run past her Doctor first.

just wondering what your reasoning is to spend a lot of money on an alternative treatment, having to seek non-expert advice on a message board when you have a problem, rather than use cheap, highly effective carbidopa/levodopa and consult with a pd specialist? are you involved with pd support groups where you can see how well/poorly pd'ers are doing on conventional meds? this is none of my business so don't feel compelled to respond.

imho though, if your wife can't exercise because of her pd or have a social life, you owe it to her to consider switching to carbidopa/levodopa if only temporarily just to give her some relief. i apologize if you have already tried this drug and it didn't work.

i suggest you watch this video about unfounded l-dopa fears, here's the text of a message i posted:


Dr. Eric Ahlskog

Peterborough Conference, October 2012

http://www.cno.parkinson.ca/site/c.j...sons_Video.htm
parkinson's society central and northern arizpna

old timer, written at least 2 books on pd, initially talks about pd in general and history of L-DOPA, gets to the meat and potatoes around 17minutes into video.
also discusses agonists and azilect.


major point made is people who are undermedicated progress faster than those that aren't, implication is undermedicated people don't exercise enough.

interesting discussion of constipation in q&a, no magic bullet but makes suggestions at start of Q&A

just want to help.

I'd like to respond, as I had PD symptoms for over three years that I had been taking to licensed neurologists and other licensed medical professionals without the proper result. It took my going to another information source, also an MD but one at Columbia U to get my diagnosis. That was oover five year ago. While my c/l therapy and MAOBinhibitor therapy have helped, I think I also made the right decision not to limit myself to the prescribed therapies but to also develop my own exercise program. It has involved stationary cycling and although a tremor has developed in my right arm during the five plus years I have been exercising my legs, I have not noticed any progression in my legs.

We PWPs need to be rational consumers of therapies. This means using medical professionals but also exercising a kind of management control over them. We need to use common sense, get peer reviews, and study.

rempatterson,
the benefits of exercise and supporting research have been tauted for years on this board, especially by NAN LITTLE thru pedaling for pd, and to a lesser extent myself and others. the point i was making is that one likely won't get much benefit from exercise if you are undermedicated. i was in no way stating one only needs C/L and/or other meds as their only treatment.

i've heard some neuros say you should take enough meds so you can exercise, other neuros aren't going to stick their neck out and state exercise can slow progression.

The first neurologist that i went to would not prescribe sinemet as i was 59 years old at the time and according to her sinemet would lose its effectiveness in a few years of use, thereby leaving me without good treatment options at a relative young age for person with parkinson's. My current neurologist won't prescribe it either for the same reason but added that i would likely develop dyskinesia from the use of sinemet at my age. Dyskinesia is a heavy price to pay for a few years of symptom reduction with sinemet use. So it is no wonder that many of us are investigating alternative options. And this is ok. We should not get badgered for this approach by other forum members.

"I've read other folks who have tried Dr. Heinz treatment, and for 20% it seems to have really helped. For the other 80% didn't see the improvement."

Do you have a reference for that? I'd like to read it.

i suggest you see a new MDS.

Funny, an MDS told me that the problem with Sinemet losing its effect is due to the progression of the PD. Does anyone here have a research based fact on this subject?

If this was true then “drug holiday” shouldn’t have worked in making Sinemet to be more effective again and yet it did for some PD patients as per this old study http://www.ncbi.nlm.nih.gov/pubmed/7192805
Abruptly stopping or reducing the dose of Sinemet may cause a serious condition called neuroleptic malignant syndrome (NMS) so “drug holidays” are not recommended any more.