Does anyone have this symptom when meds don't kick in. Sometimes it feels like there's an elephant sitting on my chest. My breathing becomes shallow and my heart rate goes up. I'm fine when my meds kick in.

Last time this happened I stopped taking amantadine for a while and then startred at a lower dose. I'm taking 200 mg a day now and wondering if maybe I should stop it again. Any advice would be appreciated.

bluedahlia...did you can you prescribing doctor?? If not, please do ASAP!!

Now...I am sorry you are having this problem. It may or may not be the Amantadine.

Hopefully someone can bring other thoughts to this thread.

Yes I had this problem a year ago and went to the ER. They performed a battery of tests and all checked out ok. Even went for a stress test and nuclear medicine scan of the heart. Im just wondering if it has to do with rigidity in my chest muscles causing the problem as it only bothers me when I'm in an off state. If it does get worse, I will definitely follow up with the doctor.

I have problems breathing when I have dystonia which is usually when I am getting close to the time for meds. Of course the cramping effects my left side mainly my leg and foot but lately is also in my left arm. It makes it hard for me to breath at these times, I assume it is the muscles in my chest that are cramping as well. Increasing my Sinemet seems to relieve all of the discomfort.

...he points out that the diaphragm is a muscle and stiffens up with the rest.

I don't have the problems like yours, but I do get winded easily when I am stiff.

Thank you for the replies. Makes me feel a wee bit better mentally, even though it's such an uncomfortable state to be in physically.

dystonia of the diaphram to me too. Sounds like you might want to consider a DBS or a med change and\or the way you take them.

Charlie

Thank you Chasmo. I'm 8 years into this damn disease......thought I'd have a few more good ones but between the dystonia and the dyskinesia, I have to consider doing something a little more drastic. I will be talking to my doc re. DBS. Hopefully I'll be a candidate.

I'm worried they may turn me down as I was diagnosed with breast cancer last year. Would they turn me down on the basis that I'd be a risky candidate as far as life expectancy is concerned? After all it is an expensive surgery and it would be government funded as I live in Canada. My cancer was stage 1.

dear bluedahlia,
I am also finding this out the hard way - I am having the hard to breathe
symptoms - we breathe too shallow -this is one reason -

I am on a mild liver detox - I have been having pain in my liver - I thought it was my mid to lower back -
I have just put a larger article about toxicity -
I have discontinued the use of my -toothpaste - the flouride is causing
my mouth to have what feels like burning - it is subsiding but I must
continue with the detox-

please read:
THE FLUORINE/FLUORIDE CULPRIT

The Parkinson's-like tremors are, likewise, also associated with the toxic substance, Fluorine/Fluoride.

It particularly affects the kidneys and promotes low blood pressure.
It causes the muscles to become flabby and degenerated. Fluoride destroys our will to live!
"Many commercial toothpastes contain cavity-fighting fluoride.
Each one of these tubes contains 1,000 - 2,000 mgs. of fluoride, enough to kill a small child who might eat the whole contents."
(Journal of Pediatrics 1987) People taking tablets containing one-half of one milligram of fluoride per day (the amount found in 1 to 2 pints of fluoridated water) can expect to experience:
Black tar-like stools, stiffness, bloody vomit, diarrhea, faintness, nausea and vomiting, shallow breathing, stomach cramps or pain, tremors, unusual excitement, unusual increase in saliva, watery eyes, weakness, constipation, loss of appetite, pain and aching bones, skin rash, and sores in the mouth and on the lips. (US Pharmacopia Volumes on Drug Information 1983 quotes Hannah Kroeger's book, GOD HELPS THOSE WHO HELP THEMSELVES.)

I have had PD for about 18 years now. Difficulty breathing is a major problem for me when my meds wore off. It could be caused by a couple things. If you suffer from dystonia from idiopathic PD, it could cause difficulty breathing.

Your symptoms sound as severe as mine, so I can't help but wonder if you could have a mutation in your Parkin gene which may cause a mitochondrial disease such as I have. See the following link for a clear idea of what mitochrondial disease entails. http://www.mdausa.org/publications/Quest/q64mito.html .

I found DBS surgery to be a lifesaving measure for me. It allowed me to cut way back on the amount of Sinemet I take as well as other drugs. I am not sure how the Canadian Healthcare System works, but you might consider talking to your physician about the possibility of sending a blood speciman to Allinia Diagnostics, which is the only American lab that will do a gene test for mitochondrial for commercial use. Participating in a research study is another possibility, but having the test results sent to you by a commercial diagnostic testing service puts the DNA information directly in your hands so you are able to research the more recent research which says what will or won't work for your particular mutation, should one exist. Research studies will not release any information to the patient.

I am so sorry to hear you have breast cancer to deal with as well as PD. There was another poster named Thelma who was also coping with cancer and PD. I haven't read any recent posts by her. She might be able to answer your question about cancer and DBS surgery.

Vicky