Does any-one have advice on "Breathing Dyskinesia". Ever heard of a "specialist" in Dyskinesia-I need help badly?

[pingopenguin]

Have had my meds changed twice to no avail -nothing seems to help it.Am willing to pay to see a neurologist in this field.Any-one got any advice on what might help me?

[etterus]

Can you please describe breathing dyskinesia?

[pingopenguin]

It becomes erratic with no pre warning. I begin to breathe fast when sitting/resting,then I can not get my breath at times,then it becomes slow and I have problems controlling it.I get no warning when any of these things happen - I could be resting/sitting/walking/in a car - As though my diaphragm just begins to push the lungs.

[etterus in reply to pingopenguin]

A google search came up with tardive dyskinesia.... neurotalk.psychcentral.com/...

[shipfitter]

Seek pulmonary specialist for breathing issues

[froggatt55]

I was at an open day at SITran - a neuro centre of excellence in Sheffield, UK The centre deals with MND and Parkinson' et al. There was mention made that for MND sufferers there is a device that is fitted to the diaphragm - - rather like a pace maker - to assist the breathing. If I can find out5 anymore I will get details to you

[JohnPepper]

I am not a doctor, but I have had Pd for many years and have had meany years of experience helping other people with Pd. I am quite sure that dyskinesia is the side effect of too much medication. This is a catch 22 situation. If you have got to the stage that you have to take more medication, in order to function properly, but get dyskinesia because of the high dosage, then you are in a bad space. I have tried to encourage patients to take less medication and do more exercise, which does help to reverse the symptoms, but more often than not, the patients are too weak to do any meaningful exercise.

[michaela13]

This is so true John. I'm trying to walk every day even if it's for 10 min. I take 25/100 sinemet 3 or 4x day. If I miss the 3 hour limit I can't walk. But then i suffer with some dyskenesia, swallowing problems, slurring of speech. Wish there was a way...

I keep praying.

[HeartSong]

Even though this is an old thread, I'll go ahead and post. Sometimes when my levodopa/carbidopa has worn off, I will start having a hard time breathing. To get through this quicker, I sit in a comfortable chair in a quiet room, close my eyes, and gently and slowly massage the back of my head and back of my neck. When I do this, the breathing gets easier much more quickly. (Also, lately, I've added playing a CD of nature sounds - bubbling brook and bird songs. This helps even more.)