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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.

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
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
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.

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royprop | @royprop | Apr 7, 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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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”.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 7, 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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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.

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Alistair01 | @alistair01 | Apr 7, 2019
In reply to @royprop "500mg of thiamine hcl twice daily is low dose. The therapeutic level is two grams twice..." + (show)
@royprop

500mg of thiamine hcl twice daily is low dose. The therapeutic level is two grams twice daily.

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Many thanks Roy, I will increase it in stages.

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3 replies
Alistair01 | @alistair01 | Apr 7, 2019
In reply to @hopeful33250 "Hello @alistair01 I'm not sure what new drugs you are speaking of, but I did find..." + (show)
@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?

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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.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 4, 2019
In reply to @sadiecora "If you were satisfied with the assisted living and can afford it...PLEASE give yourself a break..." + (show)
@sadiecora

If you were satisfied with the assisted living and can afford it...PLEASE give yourself a break and have him readmitted. Depleting yourself, physically, mentally and emotionally is not going to help you or your husband, My daughter likes to remind me that when there are problems on a plane, the order is to put your oxygen mask on first before you help someone else.

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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.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 4, 2019
In reply to @sadiecora "My husband has had Parkinson’s for 12 years. He was very fortunate with the tremor only..." + (show)
@sadiecora

My husband has had Parkinson’s for 12 years. He was very fortunate with the tremor only in his left arm and hand.
In the last year the tremor is now in right arm and hand. Makes doing something’s a little more difficult. He has remained active and has always been disciplined about walking outside or on the treadmill. He had also been doing a boxing class for Parkinson’s for about 5 months but was sick with UTI and flu and is still recovering his strength. Now I am starting to see some mental decline which varies by the day. Bedtime is difficult as he goes from bed to chair to get comfortable and complains of being hot or cold. A it would help if he could cover himself when cold but doesn’t seem to understand how to do it. Anyone familiar with the problem of covering themselves while in bed? aslso any ideas for sleep help besides Melatonin. Dr. prescribed a sleeping pill but made it worse.

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Hello @sadiecora

I am sorry to hear about your husband's problems with sleep. Sleep disturbances are common with Parkinson's. Here is another discussion on Sleep Problems with Parkinson's. As you read the posts you will see how other people have handled sleep problems, https://connect.mayoclinic.org/discussion/parkinsons-and-vivid-dreams/?orderby=DESC&pg=2#chv4-comment-stream-header.

You might also find this video helpful that deals with Sleep Problems and Parkinson's from the University of Michigan. Has your husband's doctor suggested a mild anti-depressant that helps with sleep?

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sadiecora | @sadiecora | Apr 4, 2019
In reply to @hopeful33250 "@tntredhead Incontinence is an issue that can be related to Parkinson's and probably dementia as well...." + (show)
@hopeful33250

@tntredhead Incontinence is an issue that can be related to Parkinson's and probably dementia as well. If you have not used the adult diapers, especially at night, that would be a great idea and it would give you a better night's sleep. Some are made especially for nighttime use. You could also check with your husband's doctor to see what other medical issue might be involved (perhaps a urinary tract infection) especially is this is a new problem. Keep us posted and let us know how he (and you) are doing.

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If you were satisfied with the assisted living and can afford it...PLEASE give yourself a break and have him readmitted. Depleting yourself, physically, mentally and emotionally is not going to help you or your husband, My daughter likes to remind me that when there are problems on a plane, the order is to put your oxygen mask on first before you help someone else.

REPLY
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