Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6912
Joined: Jul 23, 2014
Living with Parkinson's Disease - Meet others & come say hi
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?
@hopeful33250 Hello @alistair01
I'm not sure what new drugs you are speaking of, but I did find something on the Michael J. Fox website about a new drug to treat PD as well as other neurological problems. Here is a link, https://www.michaeljfox.org/foundation/news-detail.php?research-roundup-new-alpha-synuclein-therapy-begins-clinical-trial and another about Cerevel, https://www.michaeljfox.org/foundation/news-detail.php?pfizer-parkinson-drugs-will-be-developed-by-start-up-cerevel-therapeutics.
These seem to be in the clinical trial phase right now. Does anyone know anything else about these drugs? Are you involved in a clinical trial now?
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
@royprop 500mg of thiamine hcl twice daily is low dose. The therapeutic level is two grams twice daily.
Many thanks Roy, I will increase it in stages.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6912
Joined: Jul 23, 2014
@alistair01 Many thanks Roy, I will increase it in stages.
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.
REPLY
royprop
@royprop
@royprop
Posts: 26
Joined: May 24, 2018
@alistair01 Many thanks Roy, I will increase it in stages.
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”.
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 7543
Joined: Mar 28, 2016
@alistair01 Many thanks Roy, I will increase it in stages.
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, Connect Moderator
susan62
@susan62
@susan62
Posts: 50
Joined: Aug 04, 2018
@royprop Diagnosed 2012
My regimen:
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms…
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever…".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.I
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
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”.
Join my facebook group:
"parkinson's thiamine hcl"
https://www.facebook.com/groups/232260083958797 …
Parkinson's Relief, Questions and Answers
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.
royprop
@royprop
@royprop
Posts: 26
Joined: May 24, 2018
@susan62 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
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
royprop
@royprop
@royprop
Posts: 26
Joined: May 24, 2018
@sadiecora 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.
Prior to high dose thiamine hcl I had trouble covering in bed.
@royprop Prior to high dose thiamine hcl I had trouble covering in bed.
Thank you so much for your reply.
royprop
@royprop
@royprop
Posts: 26
Joined: May 24, 2018
@sadiecora Thank you so much for your reply. Is the this thiamine hc1 a prescription and how much did you need?
Thiamine hcl or hci an over the counter vitamin.
Four grams daily, divided into 2 doses
@royprop Thiamine hcl or hci an over the counter vitamin.
Four grams daily, divided into 2 doses
Thank you so much for sharing this valuable information. So glad Thiamine hc1 has improved your health. Best Regards to you.
susan62
@susan62
@susan62
Posts: 50
Joined: Aug 04, 2018
@royprop 1. Ignorance.
2. I am on carbidopa levodopa.
3. No.
4. Solved constipation by week one. Generally takes four months for gross improvement.
Thank for info
Liked by Teresa, Volunteer Mentor
@hopeful33250
In reply to @sadiecora
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, Connect Moderator