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

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?

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?

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.

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.

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?

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.

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.

Many thanks Roy, I will increase it in stages.

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.

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”.