Got a question for my highly educated and well versed peers on NeuroTalk PD forum. Im 13 years into this war with PD and Im curious if others have this annoying symptom. Its hard to describe, but its like I have to pucker my lips, swallow excess saliva,talk real low and sound weird. HA! it drives me crazy. I take 25/250 sinemet 4 times a day. Any thoughts on making this going away?
Thanks
ScottSuff

ScottSuff,

I don't have your "annoying symptom". Does it occur when you're "on" or "off"?

John

kinda, I had a sub-lingual salivary gland infection about 10 years ago that gave me similar symptoms and never completely resolved, antibiotics ,steroids, speech therapy but no real answers. PD dx 3 years ago. researched burning mouth syndrome and alpha lipoic acid 500 mg seemed to help the neuropathy some, but when I started sinemet it helped more. still lingers but not as problematic.

Happens more toward the end of the day, so Im on going to the off side.

Search for a speech therapist. Often your MDS or Neurologist will have a recommendation of someone to work with.

Have you used your BIG VOICE? Seriously it helps me to use my loud voice, and count. Saliva, and gag reflex are part of this fun.

My daughter starts a grad speech therapist program this year. Maybe she can use me as a lab rat or something Lol.

A family member (who does not have PD) had burning mouth several years ago. The first doctor wanted to put him on meds, but the second doctor said it was a vitamin B deficiency...he took the B vitamins, and it disappeared. You might want to look into that, as well. I think one of the B vitamins competes with sinemet, though, so you'll want to research this...also I have read that sinemet can actually deplete B6, so it can be tricky trying to balance things out.

my Neuro recommends small amounts, often, to smooth out drug delivery and avoid nasty side effects.

250 Sinemet 4 times a day sounds like quite a bunch of Ldopa, have you tried a continual release delivery, e.g. Stalevo, and more doses, say 10 Stalevo 100mg per day.

Neil.

Scottsuff, you write "Happens more toward the end of the day, so Im on going to the off side."

You will have a low in your drug levels just before a new dose takes effect. This will be more apparent when your last dose wears off, because you don't have a new one until the morning. So, I think that your symptom is caused by a lack of levodopa. Perhaps made worse by eating protein close to the final dose.

Like aftermathman I think that your regimen of 4 x 250mg Sinemet per day could be improved by taking more, smaller doses during the day. However, moving to 10 x 100mg Stalevo would be too large a jump to take in one step: Stalevo has about 30% more power than Sinemet. My understanding is that both Stalevo and Sinemet are immediate release, Stalevo lasts longer because it has the extra component entacapone. A controlled release version of Sinemet may also be worth considering.

John

Personally, sometimes I drool like a dog that has found a "MacDonald's Dumpster". Bad enough that I have to wear a medical mask when I play billiards (Pool) so I don't soil the table. My voice is like a poor imitation of "Forest Gump" but I certainly entertain my friends with my attempts to alter my voice.

Life is like the proverbial "fight in a bar". Not much you can do but put your head down and keep swinging. Parkinson's is my "Bar Fight".