My husband has PD he is 51 years old
After 2 years being on medication his tongue and mouth started to move. He doesn’t know he is doing it . It’s constant? Not sure why it’s hspiening. His Dr is saying pick your battles? Anyone else is experiencing the same uncontrollable mouvement?
It could be tardive dyskinesia, which is a side effect of some meds. Read up on it and your husbands meds. There are a few us on this site who are the wives /partners of husbands with PD and we need to be involved and assertive with regards to their treatment. It is your right to be listened to by your doctor and be given information and offered choices.
You are right! I have been doing a lot of my own research and we are working with a naturopath and dr Berman. We will be starting infrared light
I have been doing infrared 1x/week, for a month now- have u started yet?
Not yet
Dr Berman has ship the “ machine” waiting for it
My husband will be doing it everyday for 20 min
How is it working for you?
it seems I have 'good days' when I do it, wondering if its coincidence- lets keep in touch? I wonder how daily treatment will go- I do the 'cocoon' for 30 mins at 130-140 degrees.
I think that the same thing happened to me....my tongue moves and my face constricts, gets all tight..hurts. I have injections of Botox in my face every 3 months. This pretty much stops it for me. My next appt is 4/30 and I can tell , for the past two weeks my face and mouth have been going crazy. I have taken to wearing my nightguard during the day . I am afraid I will crack m teeth. I only go every 3 months....partly cuz medicare so dictates, but also they need to have me symptomatic in order to find the spot where to do injections based on nerve overactivity when they use their scanner/ I have dystonia in my face, feet, and legs.
Pretty much some part of me is moving when I am "on." How much levodopa is he taking?
I think and went down to 1 1/5 pills 3 time a day plus a slow release he was at 2 pills 3 times/day at one point
Did reducing the dose lessen the movement at all? Can he function with the reduced dose? Another approach is to take smaller doses closer together.
My husband experienced facial movements he was unaware of when he was taking too much carbadopa/levodopa. He switched to Rytary and no longer has that problem.
Thank you I will look into it
Is rytary not the same as carbadopa/levopoda?
Rytary is a newer version of time-release c/l. The dosing is different and it works for some, but not others. Ask your husband's neurologist about it. If your neurologist is not a Movement disorder specialist he/she may not be familiar with it.
Thank you
Too much Sinamet.
Very much sounds like tardive, it is a side effect of the dopamine-antagonist "anti-psychotic" medications, but dopamine function is a very delicate balance and there are a great many medications all with their side effects that arise in the person's own unique brain makeup as well, but all these movements have to do with dopamine. Get to the most experienced doctor you can find in this area and do not just "pick your battles," and do NOT wait around, because with the "anti-psychotic" dopamine (and some "serotonin-ergic" anti-depressant meds as well, their reaction mechanism chemistry eventually weaves around to the dopamine pathway too via epinephrine and norepinephrine stimulation) at some point what could be reversible becomes permanent, especially the very finely structured nerves and muscles of the mouth, lips, tongue, oh yes, it is a very sensitive, fine-tuned area right there. It's thought of as a "dose response" meaning if you stop or back off, maybe the movements will attenuate. Of course, each medication reacts differently with him, so one may make things much worse while a different one may not and will still help with the PD...a very experienced specialist will know much more than a FP. Do not tarry, perhaps there is still time to minimise these movements.
Gigi, I have the same symptoms. There are some effective strategies: ask your doctor about Botox. Also read up on “dopamine agonist withdrawal syndrome” and discuss with your doc if you suspect that it applies.
Thank you
I will look into it
Botox has been effective and I had a DBS in my GPI a year ago and that has relieved enough to stop the Botox. Long term I’m not sure but if needed I can start the Botox again.
Where do you get the injection of Botox?
I am new in researching other treatments for my husband
What does DBS and GPI means?
For Botox I see a otolaryngologist. DBS is an implanted stimulator that in some cases can greatly reduce symptoms. DBS = deep brain stimulator. GPI is the location in my brain. GPI = internal globus pallidus
I’m amazed you are asking these questions here when your medical team should be giving you these options, and more based on your husbands unique situation.
He has been diagnosed 2 years ago
Only medication has been offered to him
I am very frustrated that is why I started doing my own research
We saw 2 different neurologist and they both feel that he is doing well
He is still working and active
No tremor but stiffness and since December the mouvement of his mouth
Just curious where do you live?
Ok the truth is you and your husband are on a journey so choose your sources wisely and avoid the dead end diversions.
Keep asking and learning but then advocate and be the squeaky wheel when you interact with your health care providers.
This happened to my husband as a side effect of a medication. There was tongue darting, weird head and facial movements and lip smacking. This was not from Parkinsons but a side effect of Artane. When this med was stopped the facial and mouth movements stopped as well. Please call the doctor and report these symptoms.
Has anyone with PD changed medication, when the initial one was not working? 
Need Away from Home Care
Tapeworms and Parkinson’s
