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?

Hello @dvasude @mcjames and @kzogg

Welcome to Mayo Connect! I see that you (or a loved one) has been diagnosed with PD. Please feel free to let us know how you are doing adjusting to this diagnosis. Have you noticed an improvement in your symptoms?

I hope that you will share more in the future. I look forward to hearing from you.

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Many of you have shared about your Parkinson's diagnoses or potential diagnoses in this discussion, and I'd like to check in to see how you are doing. I'm certain the others in this thread would also like to hear how things are going and provide support.

@stephenmcelroy – how are things going? How has the at-home regimen of exercises been for you?

@falconfly – how is your son doing with his Parkinson's?

@ramblyn – how is your husband's speech therapy going? Are you finding it helps him?

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@lisalucier

Many of you have shared about your Parkinson's diagnoses or potential diagnoses in this discussion, and I'd like to check in to see how you are doing. I'm certain the others in this thread would also like to hear how things are going and provide support.

@stephenmcelroy – how are things going? How has the at-home regimen of exercises been for you?

@falconfly – how is your son doing with his Parkinson's?

@ramblyn – how is your husband's speech therapy going? Are you finding it helps him?

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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

REPLY
@lisalucier

Many of you have shared about your Parkinson's diagnoses or potential diagnoses in this discussion, and I'd like to check in to see how you are doing. I'm certain the others in this thread would also like to hear how things are going and provide support.

@stephenmcelroy – how are things going? How has the at-home regimen of exercises been for you?

@falconfly – how is your son doing with his Parkinson's?

@ramblyn – how is your husband's speech therapy going? Are you finding it helps him?

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😋

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In reply to @ramblyn "😋" + (show)
@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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@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

Jump to this post

"I''d like to check in to see how you are doing. I'm certain the others in this thread would also like to hear how things are going"

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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

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!?

Jump to this post

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

REPLY
@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.

Liked by Lisa Lucier

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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!?

Jump to this post

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?

Liked by Lisa Lucier

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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.

Jump to this post

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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