Crystal Belle

hi jo

you need to create a userid at https://clinicrowd.info/ . once you kigin, you will have access to additional info on mannitol

beth, you beed to create a userid at https://clinicrowd.info/     once you do, you will have access to more info about mannitol.  always check with your doctor before adding any supplements to  your regimen

Christine, I agree with you, the website is not user friendly.  I too suffer from bloat and have been taking mannitol since end of july.  i dont see any results yet; i dont have tremors but my bradykinesia is terrible and i also have balance, swallowing and speech issues.   I still believe RSB is the best symptom reliever, progression slower the…[Read more]

I am sorry I missed it.  I have been using mannitol for a month now, no changes in symptoms. 🙁

hi skip, i checked with the powers that be; it is okay for u to respond with CBD brand u r using in this forum.

swallowing and bradykinesia are getting worse for me and i would love to give the CBD u r using a shot.   after many tries at ‘synptom relievers’ i so k now that not every remedy works for everyone.    i figure one of these days i wil…[Read more]

i skip, i am intrigued by your comment on daily oral CBD emulsion.   My swallowing is deteriorating and i would love to know more about this emulsion, ie; where do you get it, how much , how often do you take?   since beginning of may  i am taking the b.subtilis by Biokult, nothing has changed in my symptoms :-(.   i am also doing the mannit…[Read more]

hi michel,  i was diagnosed in 2015 and have struggled with the idea of having to take prescription medications.  I am a firm believer that  for me, diet and exercise are key in slowing progression and alleviating symptoms. however, to get me to the point where I can exercise, i feel i do need some carbidopa/levodopa and reluctantly take it.  per…[Read more]

Steve, I did a little research on Madopar.  Apparently that is a brand name for benserazide/levodopa.   It seems in Europe, benserazide is used while carbidopa is used in the USA with levodopa .   The function of both benserazide and carbidopa is the same; helps to prevent nausea caused by premature conversion of levodopa to dopamine outside the…[Read more]

HI Steve,

it sounds as though your Mom is having a tough time.   I am sorry for her struggles.  You are a good son, trying to do the best for your Mom and I am sure she must  take comfort in that.  You didnt say how old she  is or what her mobility is like, but, I have found exercise to be the BEST thing for Parkinson’s and more and more docto…[Read more]

Ann Marie, is mayo offering telemedicine calls for first time patients?   Plz let us know how ur call goes.  I just did a telemedicine call with my MDS and she only does them for established patients.

Allie, isn’t the fatigue brutal?   Walking 1/4 mile will waste me for rest of day.  I try to workout in morning so I can lay down in the afternoon.   Nothing seems to help fatigue, sleep, supplements, exercise, food or meds.

Andrew thanks for sharing.  I agree with you on the benzodiazepines.   My late husband was addicted to Ativan.    Bad stuff. I believe it is only a matter of time before these drugs are put in same class (in terms of addiction ) like the opioids

hi glenn i can only hope that not all of us will experience the honeymoon effect.

Toni, you are so right.  We are all different in how the disease manifests itself.  it is a vicious cycle for me.  i need to xercise to help improve my symptoms and potentially slow progression, however one of my worst symptoms is fatigue…. go figure.   i hope u like the article, unfortunately i have no answers, only  questions and observations.

i wake up fatigued even after a good nites sleep.  i must force myself to exercise as i know how important it is to battle this beast of a disease.      next tuesday my article on exercise prior to diagnosis and potential impact will be published

robert, c/l seems to only mildly help my symptoms (mainly fatigue, bradyk, poor fine motor skills).  no constipation and i went almost 4 days of almost no or  very low protein and it did not make a difference. i usually take the c/l at least an hour before eating and take it with vitamin C (recommended for absorption)

Robert, I agree with you.  I always feel terrible after a workout and it feels like my available dopamine has been totally exhausted.   C/L seems to have only a mild effect on my symptoms.  i have tried upping my dose by one 25/100 about 30 min. before a workout and it didnt seem to help 🙁

Hi Vickie

thnx for the feedback.  I too have pain in my knee and have been using medical marijuana cream on it,  only for a few days so I have not seen a difference yet