Jean Mellano

i had my first Pfizer dose on 2/4.  I woke up the next day paralyzed on my left side (the side most affected by PD).  By sheer force of willpower and whatever strength I had, I was able to get out of the bed in about an hour.   Then I was my usual crappy PD self the rest the day.  Not looking forward to the second shot 🙁

Daniel

I dont trust big Pharma, Merck pulled Sinemet immediate release (vs. CR which was discontinued) without warning (for the second time).  Generics from different companies do not have the same efficacy for me.  Brand Sinimet worked the best for my symptoms.

here is my blog about i…[Read more]

Dave, thnx for ur input.   As I understand it, Inbrija is used for ‘off’ time.      I am still trying to get to the bottom of my issue, to see if adjusting dose and timings of existing meds can be tweaked.  I would struggle with an inhaler and go into a coughing  fit LOL

jo, thnx for piping in.   i need to find a new neuro.  the one i am seeing now has thrown her hands up with me and doesnt know what to do for me anymore and has referred me to a psychiatrist.  (more drugs).  she says i do well on all of her tests and she says i look good, however, i feel like crap; a lot of my issues are non motor (akathesia is a…[Read more]

Toni

I am so happy that what I said was helpful for you ..  it has always been my mission to share and be open with my life  in an effort to help others. We are not alone in battling this disease and I believe that gives us  us strength and hope.

happy holidays to u as well

Thank you Toni for responding. I stepped down as a forum moderator as I needed to reduce my commitments.  I put a lot of pressure on myself which worked well in my career, but not so much with PD.

I hate the thought of adding meds, but maybe that is what I need.  I will talk to my neuro about what you have tried as that makes sense.  She has me…[Read more]

hi all

i  think i now have akathesia.   it is almost like clockwork, about 30-90 minutes before my  3rd and 4th dosages of c/l for the day i start getting ‘ants in my pants’   does anyone have upated info to share?

thank u david for your response.  i think i am going to give it a shot…

john, thnk you for your response.   someone else also told me she thinks it was helping her but she wasnt sure.  i may give it a shot

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]