Andrew L.

I had orexin inhibitors prescribed by a neuropsychiatrist. He has hundreds of pd patients and claims to have used them with great success. He also uses them on his Alzheimer’s patients .  It is not the be all end all as after a few days it causes me  some daytime foginess…so I try to take it every 3rd day. While this is obviously anecdotal, they…[Read more]

My first ( many years before diagnosis) and worst symptom of PD.  Have tried everything, here is what have come up with.  First off , I don’t like addictive meds so that rules out all of the benzodiazepines (Valium Xanax all of the drugs ending in azepam etc. I find the following helpful: 1)Mirtazapine (an anti anxiety anti depressant)at a low dos…[Read more]

Hi Mike: I have a massage chair which is in my bedroom for those times the meds seem not to work . It also doesn’t breathe on me and I don’t have to wear a mask haha. Am fighting tooth and nail not to up my meds will see what happens ….first 2 -3 years c/l was a wonder drug now more hit or miss. I exercise almost maniacally but tore carti…[Read more]

Am 65 and consider myself an athlete , exercising about 2 hours per day on average . Started on selegiline 4 years ago , now on 100/25 c/l 6x per 24 hours. I believe Pd is a complex syndrome and each patient is somewhat unique i.e. one size does not fit all. Have done a lot of research and don’t see any downside with c/l provided it helps. S…[Read more]

I view myself as a stronger person (mentally and physically) than I thought was possible before being diagnosed. I use the diagnosis as a reason to take the best care of my physical and  mental  health as is humanly possible. When my body and mind allows me to do these things, I  feel good about myself.   I view small victories (still doing thin…[Read more]

That was great information David, thank you. I am 4 years into PD (65 in a few weeks), a retired physician (anesthesiologist) and have become somewhat of an exercise junkie since I got this diagnosis (actually has always loved exercise, now I have an excuse). I have also experienced that “glow” you  talked about usually after 90 minutes of…[Read more]

Hi Marilyne:

Wondering how high you feel after that, or do you just go to sleep? In my experience 10 mg made me quite stoned, though used pills not gummies (shouldn’t matter I don’t think…)

I believe you are talking about Indica (versus Sativa or Hybrid), which is a strain of THC that requires a medical marijuana card to purchase (unless you live in a state where the drug is available for recreational use; then you can walk into any dispensary and buy it). Don’t know enough to comment on its use for  REM-SBD. However, given that THC…[Read more]

Sleep issues are my worst PD symptom. Tried everything mentioned in this forum and then some, except Mannitol which I do not believe in. Only thing that makes a true difference for me are the Orexin receptor antagonists. Take this 2x per week, the only nights I pretty much am guaranteed a good night’s sleep. Would take it more but do not want to…[Read more]

Wholeheartedly agree

Educate yourself, there is a lot of info out there. It’s a wakeup call to get active (exercise). Reduce stress as much as possible.  Find a support group. Get a team of doctors (preferably someone specializing in movement disorders) and/or therapists (P.T. and psychotherapy, etc). Take advantage of the multiple free outreach programs put on by…[Read more]

Stress makes everything worse, however it has been said that the only time we (humans) have no stress is when we are in a coma or dead. That said excessive stress is best eliminated when possible, as the disease with its fluctuating brain dopamine levels  is stressful enough, thank you very much. CBT has been around for decades and is a widely…[Read more]

I periodically have it too. Very disconcerting. Have thought it is caused by my dopamine levels dropping to low, but I don’t know.

Hi Kate:

Do you have more info for the mindfulness meditation class for PD?  I have done mindfulness meditation, but never in the context of PD….

Am getting ready to try the Tom Brady exercise program (TB 12 program, ordered all the equip from Amazon). If he can do it why can’t I? Who cares if I am more than 20 years older and have PD? Certainly not him and not me either.  So far today I did boxing and Chloe Ting (on you tube) abs. She has many other great workouts as well, just need some…[Read more]

I had vaccine number 2 (Moderna) 2 weeks ago. Felt nothing after vaccine 1, after vaccine 2 had a horrific night. Rotating (throughout my body) muscle spasms every hour, Parkinson’s symptoms in general MUCH worse than I have ever experienced etc.  Ended up doubling up on my dopamine medication over the 24 hour period (which helped), then took it…[Read more]

Hi Ian:

Am a young 64/athlete. Diagnosed 2 years ago. First noticed tremor in left hand 3 years ago. Followed by what I thought was a frozen should (in hindsight it was PD onset.) Followed by tremor in right leg/ esp foot. Was then diagnosed (had decrease L arm movement, no facial expression, emotional lability.) First neuro I saw told me the…[Read more]

Exercise apparently  helps in Parkinson’s by increasing the release of neurotrophic factors as mentioned above….making exercise a key component to the puzzle.   One problem apparently is that every time the research scientists come up with an important basic science research modification, it takes years for the new information to translate cl…[Read more]

Watch from 4 minutes on, reminds me of “awakenings”

Doesn’t address what Bill is talking about tho….

Never tried Butyrate. have been on Niacin for 25 years for high cholesterol, diagnosed with Parkinson’s just a few years ago.