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.

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 group.

@ramblyn

I found the speech therapy lessons has really helped. Attended about five sessions and then doing the suggested exercises when needed. I need to know when it said CL "ER" means. He takes over the 24 hrs. 9 CL pills,of 100 grams. What is the dosage of the Vit B's u take?

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ER = extended release.
My dose of Vit B1 (thiamine hcl) as prescribed by Neurologist Doc. Costantini is four grams a day divided into two equal doses.

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Hello All, I had first symptoms 24mo ago & was diagnosed 18. Tremor in dominant arm has progressed, typing on my phone or making hand written notes is now tricky & I cannot always conceal my shake. But I am not aware of any other symptoms & am still working 1/2 time & enjoy vigorous tennis etc.
My regime is a) to treat the biome initially per (google) Colin Potter's advice & now evolved under a dietitian with, diet, supplements, no beer & limited wine (red only), b) Vit B1, 500mg x2 twice daily, (thank you Royprop & Dr C) & c) exercise vigorously 3x pw, stretch & balance work in addition 2x.
I take no drugs & my instinct is to avoid them as long as reasonable.
Two questions for all the experts on this group, please!
CBD seems well established as a pain reliever. But does it have a credible track record in other PD areas notably in arresting progression? If so – what variant? Thoughts?
I picked up the end of an item on the news saying (with excitement) that the Mayo was conducting Trials into diseases such as Alzheimers etc, but it also name checked PD, with a new drug that (sorry!) began with S. Anyone know more!?

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@alistair01

Hello All, I had first symptoms 24mo ago & was diagnosed 18. Tremor in dominant arm has progressed, typing on my phone or making hand written notes is now tricky & I cannot always conceal my shake. But I am not aware of any other symptoms & am still working 1/2 time & enjoy vigorous tennis etc.
My regime is a) to treat the biome initially per (google) Colin Potter's advice & now evolved under a dietitian with, diet, supplements, no beer & limited wine (red only), b) Vit B1, 500mg x2 twice daily, (thank you Royprop & Dr C) & c) exercise vigorously 3x pw, stretch & balance work in addition 2x.
I take no drugs & my instinct is to avoid them as long as reasonable.
Two questions for all the experts on this group, please!
CBD seems well established as a pain reliever. But does it have a credible track record in other PD areas notably in arresting progression? If so – what variant? Thoughts?
I picked up the end of an item on the news saying (with excitement) that the Mayo was conducting Trials into diseases such as Alzheimers etc, but it also name checked PD, with a new drug that (sorry!) began with S. Anyone know more!?

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

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@ramblyn

I found the speech therapy lessons has really helped. Attended about five sessions and then doing the suggested exercises when needed. I need to know when it said CL "ER" means. He takes over the 24 hrs. 9 CL pills,of 100 grams. What is the dosage of the Vit B's u take?

Jump to this post

Hello @ramblyn
I am glad that speech therapy has helped you! As Parkinson's affects the nervous system there are many different techniques for overcoming the symptoms and speech therapy is one of my favorites as well.

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@alistair01

Hello All, I had first symptoms 24mo ago & was diagnosed 18. Tremor in dominant arm has progressed, typing on my phone or making hand written notes is now tricky & I cannot always conceal my shake. But I am not aware of any other symptoms & am still working 1/2 time & enjoy vigorous tennis etc.
My regime is a) to treat the biome initially per (google) Colin Potter's advice & now evolved under a dietitian with, diet, supplements, no beer & limited wine (red only), b) Vit B1, 500mg x2 twice daily, (thank you Royprop & Dr C) & c) exercise vigorously 3x pw, stretch & balance work in addition 2x.
I take no drugs & my instinct is to avoid them as long as reasonable.
Two questions for all the experts on this group, please!
CBD seems well established as a pain reliever. But does it have a credible track record in other PD areas notably in arresting progression? If so – what variant? Thoughts?
I picked up the end of an item on the news saying (with excitement) that the Mayo was conducting Trials into diseases such as Alzheimers etc, but it also name checked PD, with a new drug that (sorry!) began with S. Anyone know more!?

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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 @stephenmcelroy

As I recall you were thinking of getting a referral to Mayo or to another neurologist.
How are you progressing with that plan?

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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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@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.

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@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

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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@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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@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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