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

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.

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?

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

😋

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?

"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"

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.

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!?

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

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.