NeuroTalk Support Groups - Mom just diagnosed

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)

- - Mom just diagnosed (https://www.neurotalk.org/parkinson-s-disease/206462-mom-diagnosed.html)

You provide me with a list of symptoms, etc and I will provide some possibly effective strategies and alternates choices to deal with those symptoms.

Quote:

Originally Posted by badboy99 (Post 1080246)

Gerry,
In a nutshell can you tell me what the claim is regarding progression. I am still considering starting the protocol.

Thank you

The claim is that the progression will be stopped (They call it petrified) or drastically slowed down. In some cases it is actually reversed. They mention this in several places in the website but don't give a source for the claim or an explanation about why this might be true other than an association with sulfur amino acids. I suspect that it is observational.

I will say that in many respects I am better than when I started. Tremor is now unusual. Dystonia is gone. Balance has improved but walking is still difficult at off times.

Quote:

Originally Posted by badboy99 (Post 1080248)

Gerry,
Does CHK nutrition sell to pharmacists?

Yes. I am a pharmacist and they sell to me. However, they only deal with practitioners so you need to clear it with him or her who usually marks it up. I made an argument that I can buy other supplements at wholesale without a middleman so why not this? Fortunately, my practitioner agreed.

Thank you all! What an amazing group of people. My mom is not great with the internet but I read her all of your posts and she was humbled at the number of people that responded and offered advice. I think she felt that she was not alone and had a place where I could ask questions for her. She was more positive at the end of our call. I'm in California and she is in Buffalo.

Soccertese thank you for the info on the meds. They gave her 25-100 strength and it is a yellow tab that is scored. She split in half this morning and took a half and did not get nauseous which is good but she was very anxious and thought maybe the med did that but I told her likely not. For background she is 70 and has struggled for years with depression and is agoraphobic. She has high blood pressure and diabetes which she gets treated for. She is not in good health and does not exercise. I wonder if the anti depressants over the years contributed to this.,

Bad boy - thank you for your offer to help with the symptoms I really appreciate it. She has pretty noticeable tremors, pretty moderate stiffness, hunched over, shuffles, insomnia, trouble turning on her bed at night. She is slow and really has a hard time moving. She finally went to the doctor after a year of noticeable symptoms because she could not take it any longer. I think trying the meds might be her best bet to try to give her some relief. But it's up to her. I will read up in all the great info you all provided but she is very afraid of most pills so we will see how things go and it will be up to her to decide on any additional supplements and talk to her doc.

Two additional questions. Is there a link to find local support groups that perhaps meet that she could join? And second she has a treadmill but has such trouble walking that I was thinking of getting her a recumbent bike. Is there a need for a bike like a theracycle or us a regular recumbent bike ok?

Quote:

Originally Posted by Shelley (Post 1080280)

Thank you all! What an amazing group of people. My mom is not great with the internet but I read her all of your posts and she was humbled at the number of people that responded and offered advice. I think she felt that she was not alone and had a place where I could ask questions for her. She was more positive at the end of our call. I'm in California and she is in Buffalo.

Soccertese thank you for the info on the meds. They gave her 25-100 strength and it is a yellow tab that is scored. She split in half this morning and took a half and did not get nauseous which is good but she was very anxious and thought maybe the med did that but I told her likely not. For background she is 70 and has struggled for years with depression and is agoraphobic. She has high blood pressure and diabetes which she gets treated for. She us not in good health and does not exercise. I wonder if the anti depressants over the years contributed to this.,

Bad boy - thank you for your offer to help with the symptoms I really appreciate it. She has pretty noticeable tremors, pretty moderate stiffness, hunched over, shuffles, insomnia, trouble turning on her bed at night. She is slow and really has a hard time moving. She finally went to the doctor after a year of noticeable symptoms because she could not take it any longer. I think trying the meds might be her best bet to try to give her some relief. But it's up to her. I will read up in all the great info you all provided but she is very afraid of most pills so we will see how things go and it will be up to her to decide on any additional supplements and talk to her doc.

Two additional questions. Is there a link to find local support groups that perhaps meet that she could join? And second she has a treadmill but has such trouble walking that I was thinking of getting her a recumbent bike. Is there a need for a bike like a theracycke or us a regular recumbent bike ok?

Niagara Falls Memorial Medical Center of Niagara Falls:
Parkinson's Support Group
(716) 278-4523

Parkinson's Disease Comprehensive Movement Disorder Center

http://www.kaleidahealth.org/services/display.asp?s=355

Support Group List

One inquiry that the Parkinson’s Disease Foundation (PDF) frequently receives through our toll-free helpline is how people with Parkinson’s disease (PD) can find a local support group. While support groups aren’t for everyone, for many people they provide a place to share similar experiences and tips for living with PD.

PDF keeps an unpublished listing of Parkinson's support groups and we would like to invite you to be a part of the list or to call us to find a group in your community. We maintain this list so we can share support group information with helpline callers. Whether it is you seeking peer support or your neighbors who are living with PD who are looking for you, we can help you connect. We also keep our support group friends aware of the latest Parkinson’s news, frequently sending free copies of our publications.

If you would like your support group added to the list, please have your group leader contact PDF online or call us at (800) 457-6676. Are you looking for a support group? Call us at (800) 457-6676 to find a group in your area and we'll do our best to find one nearby.

http://www3.parkinson.org/site/PageS...alo_event_page

Quote:

Originally Posted by Shelley (Post 1080280)

Thank you all! What an amazing group of people. My mom is not great with the internet but I read her all of your posts and she was humbled at the number of people that responded and offered advice. I think she felt that she was not alone and had a place where I could ask questions for her. She was more positive at the end of our call. I'm in California and she is in Buffalo.

Soccertese thank you for the info on the meds. They gave her 25-100 strength and it is a yellow tab that is scored. She split in half this morning and took a half and did not get nauseous which is good but she was very anxious and thought maybe the med did that but I told her likely not. For background she is 70 and has struggled for years with depression and is agoraphobic. She has high blood pressure and diabetes which she gets treated for. She us not in good health and does not exercise. I wonder if the anti depressants over the years contributed to this.,

Bad boy - thank you for your offer to help with the symptoms I really appreciate it. She has pretty noticeable tremors, pretty moderate stiffness, hunched over, shuffles, insomnia, trouble turning on her bed at night. She is slow and really has a hard time moving. She finally went to the doctor after a year of noticeable symptoms because she could not take it any longer. I think trying the meds might be her best bet to try to give her some relief. But it's up to her. I will read up in all the great info you all provided but she is very afraid of most pills so we will see how things go and it will be up to her to decide on any additional supplements and talk to her doc.

Two additional questions. Is there a link to find local support groups that perhaps meet that she could join? And second she has a treadmill but has such trouble walking that I was thinking of getting her a recumbent bike. Is there a need for a bike like a theracycke or us a regular recumbent bike ok?

1. http://www.apdaparkinson.org/
should link to a site listing support groups for patients and caregivers exercise classes, events in your state.
2. wait to see how the sinemet does before making equipment decisions. hopefully she'll improve enough so she can use the treadmill. of course a stationary recumbent is safer and less stress on the joints, i can still walk/jog but have a stationary recumbent. ideally pd treatment involves a physical therapist for exercise advice and even a nutritionist. check out "pedaling for parkinson's, parkinson's dance.

I sometimes get nauseated when taking my generic Sinemet 25/100. I have been eating a couple of Ritz crackers before taking and has helped immensely.