Welcome to the Parkinson’s Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson’s or caring for someone with Parkinson’s. Let’s learn from each other and share stories about living well with Parkinson’s, coping with the bumps and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?
Hello Teresa, thank you for this & well done for working the connection out! I had a look at the link & unsurprisingly it did not seem as close at hand as the journalist made out. Nonetheless it would be interesting to hear – as you say – from anyone who knows more.
Liked by Teresa, Volunteer Mentor
Hi @alistair01, are you taking thiamine hydrochloride (vitamin B1) under the guidance of your neurologist? I believe you mentioned working with a dietitian as well. I might recommend speaking to a professional about increasing dosages of any medication or supplement so they can work with you to determine the dosage most beneficial for you.
Liked by Teresa, Volunteer Mentor, Lisa Lucier, Alistair01
I will thank this Italian neurologist everyday of my life. He gave me my life back. Doctor Costantini – “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Hello @alistair01
I would agree with @colleenyoung's message of yesterday that you do not increase your dosage of any supplement without your neurologist's knowledge of what you are doing. While a supplement might seem harmless it needs to have the OK from your treating doctor.
Liked by Lisa Lucier
A number of questions…
1) If the thiamine regiment works, why don’t other neurologists recommend it?
2) Have you ever been on any PD meds?
3) Have you ever had any pain from your PD?
4) How long did it take for the thiamine regiment to work?
Thanks for taking the time to answer my questions.
Susan
Liked by Teresa, Volunteer Mentor
sadiecora. My husband has parkinson’s and I posted an introduction and question a few weeks ago. With all the messages on line, is there anyway people are notified and have their email pop up when there is a question or comment? My additional question is anyone having difficulty covering themselves at night? My husband is up a lot at night, too cold, too warm and too uncomfortable. When he gets back in bed and tries to cover himself, he can’t do it and gets cold. Would appreciate any special ggestions.
Liked by Teresa, Volunteer Mentor
1. Ignorance.
2. I am on carbidopa levodopa.
3. No.
4. Solved constipation by week one. Generally takes four months for gross improvement.
Liked by Teresa, Volunteer Mentor
@hopeful33250
Hello @sadiecora
I noticed that you sent a response to tntreadhead about her husband. Please note that she is not part of this discussion anymore. Her husband passed away several years ago and she asked to be removed from this conversation. Unfortunately, there is no way to remove her previous posts.
Liked by Lisa Lucier