Crystal Belle

I was diagnosed with PD 7 months after the suicide of my life partner.  More than one neurologist I have spoken to agrees with me in that any type of severe trauma (emotional or physical) can trigger the disease. One friend of mine diagnosed with PD before me, had an extremelt difficult first pregnancy. Another friend diagnosed before me was…[Read more]

Hi Alba, I didnt understand your response.  you were told foam is good or bad for PwP? Does MDS O/T consider  ‘memory foam tempur pedic’  a foam mattress?

sounds like a good plan Bari, my mattress prior to thevocalm was a tempurpedic and I may go back to that. as someone with pd, i am desperate to find relief from my symptoms and anything (especially the thevocalm)  that says it can improve a person with parkinsons quality of life, I am all over it.

i  wear satin PJs (by Natori), sometimes use a silk top sheet (did not help much) but the best aid for me so far is the Snoozle  https://mysnoozle.com/.

I was NOT impressed with the Thevocalm  https://www.thomashilfen.us/thevocalm.  For the price i paid, it should last  for more than 16 months.   It sinks in the middle and sides are saggin…[Read more]

Thank you Judi for your perseverance.  Sounds like you might have better luck with the thevocalm mattress than i did.  I have one important suggestion for you (and it may not apply to you).  Sitting on the edge of the bed (that is how i get dressed in the morning) really does a number on the edges which are sinking on me know sincw there is no ed…[Read more]

one of my posts is flagged for moderation, probably cause i had a link.   to help with my rolling around in bed, i use satin pajamas (Natori), occassionally use a silk contour sheet (didnt work that  great and pricey) .  i did puechase the Thevocalm which is geared towards PwP.  I do NOT recommend.   I have had one 16 months and middle is starti…[Read more]

ok, i think because you had a link in your post, it is flagged for moderation. i dont have authorization to approve forum posts 🙁   can you just post name of mattress and we can google?

hi judy, i see the message that says your messages arent being posted.  how many others have u posted that u dont see?

Hi Judi, you can post the name as long as you dont work for the company and you are not trying to make  money off it.  I used to be one of the forum moderators and I am also a coumnist (Slow is the New Fast)   for this website

hi Judi, can   you plz share the name of thee mattress?

most  neuros i have spoken to about akathisia have lumped the symptom  with dyskinesia.   the xadago seems to help, although, if i get anxious, akathisia can sometimes kick in.

hi gary, i am shocked that there is so l ittle written about akathisia.  i believe it is associated more with antipyschotic drug side effects.  the only thing i could find online was this :  https://pubmed.ncbi.nlm.nih.gov/3822142/#:~:text=Akathisia%20is%20a%20little%2Dstudied,as%20parkinsonism%20and%20sensory%20complaints.

there also ar…[Read more]

i took it for about a month, didnt help me and i couldnt take the nausea and vomitting.  🙁

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?