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Living with Parkinson's Disease - Meet others & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Dec 8, 2016

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.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

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?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 8, 2019
In reply to @alistair01 "Many thanks Roy, I will increase it in stages." + (show)
@alistair01

Many thanks Roy, I will increase it in stages.

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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.

REPLY
susan62 | @susan62 | Apr 12, 2019
In reply to @royprop "Diagnosed 2012 My regimen: The positives: no bradykinesia, I cut my food with a knife, no..." + (show)
@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

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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

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1 reply
sadiecora | @sadiecora | Apr 12, 2019

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.

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2 replies
royprop | @royprop | Apr 12, 2019
In reply to @susan62 "A number of questions... 1) If the thiamine regiment works, why don’t other neurologists recommend it?..." + (show)
@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

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1. Ignorance.
2. I am on carbidopa levodopa.
3. No.
4. Solved constipation by week one. Generally takes four months for gross improvement.

REPLY
2 replies
royprop | @royprop | Apr 12, 2019
In reply to @sadiecora "sadiecora. My husband has parkinson’s and I posted an introduction and question a few weeks ago...." + (show)
@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.

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Prior to high dose thiamine hcl I had trouble covering in bed.

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1 reply
sadiecora | @sadiecora | Apr 12, 2019
In reply to @royprop "Prior to high dose thiamine hcl I had trouble covering in bed." + (show)
@royprop

Prior to high dose thiamine hcl I had trouble covering in bed.

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Thank you so much for your reply.

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sadiecora | @sadiecora | Apr 12, 2019

Thank you so much for your reply. Is the this thiamine hc1 a prescription and how much did you need?

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1 reply
royprop | @royprop | Apr 12, 2019
In reply to @sadiecora "Thank you so much for your reply. Is the this thiamine hc1 a prescription and how..." + (show)
@sadiecora

Thank you so much for your reply. Is the this thiamine hc1 a prescription and how much did you need?

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Thiamine hcl or hci an over the counter vitamin.
Four grams daily, divided into 2 doses

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1 reply
sadiecora | @sadiecora | Apr 12, 2019
In reply to @royprop "Thiamine hcl or hci an over the counter vitamin. Four grams daily, divided into 2 doses" + (show)
@royprop

Thiamine hcl or hci an over the counter vitamin.
Four grams daily, divided into 2 doses

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Thank you so much for sharing this valuable information. So glad Thiamine hc1 has improved your health. Best Regards to you.

REPLY
susan62 | @susan62 | Apr 13, 2019
In reply to @royprop "1. Ignorance. 2. I am on carbidopa levodopa. 3. No. 4. Solved constipation by week one...." + (show)
@royprop

1. Ignorance.
2. I am on carbidopa levodopa.
3. No.
4. Solved constipation by week one. Generally takes four months for gross improvement.

Jump to this post

Thank for info

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