Diaphragm Involvement?

[Guest guest]

Hi Kay,

Years ago I had an extremely comprehensive physical when I joined a company.

This included checking lung function. They found I had reduced lung

capacity, which struck me as odd because I was physically fit. I was

wondering what you have seen as indications of diaphragm / phrenic nerve

involvement? I have not been checked for lung capacity in about 10 years,since

that medical.

Thanks,

Donna from London

[Guest guest]

Hello Donna,

I'm sorry it has taken so long to respond to your post. My breathing

problems from Phrenic nerve paralysis, has caused complication such as, vocal

paralysis, which results in hoarseness and shortness of breath. I also feel at

times like I am suffocating. This happens when I am very tired, lay down,

without my ventilator on, full stomach, or in the past when I drank carbonated

drinks.

From what I understand, the carbonation in the drinks, forces carbon dioxide

into the cells... temporarily forcing the oxygen out of our cells. This I am

told causes damage to the nerves.

In 1996 I was checked by a respiratory doctor, and at that time they found I

only had half of my lung capacity. On an, Voldyne 5000 Exerciser, I could get

up to 2500. The highest is, 5000. Now, 10 years later, I am at 500 and

sometimes lower.

Maybe that's why I'm out there trying to get people to know, it is fatal for

some CMT'ers.

I'm not trying to scare anyone. The CMT Association response to my

question...which was, " Why don't you tell people it can be fatal " .... is that

this would " alarm " people. My response was, " Knowledge is Power " .

I know it's to late for me, but maybe if they recognize it can be fatal, we can

get more funding. I only hope that my son, and other parents children, can get

better information, and help!

Donna, I have been so blessed, and I am so grateful for this life I have. I

plan on traveling, enjoying friends and family...that is my main focus! But,

every chance I have, I want to help others... as so many have helped me!

Thank you, and everyone for your support. Just think what it took to bring this

group together...there is a reason....way beyond our knowing!

God Bless!

Kay~ Foggy Oregon Coast, Today.

Diaphragm Involvement?

Hi Kay,

Years ago I had an extremely comprehensive physical when I joined a

company.

This included checking lung function. They found I had reduced lung

capacity, which struck me as odd because I was physically fit. I was

wondering what you have seen as indications of diaphragm / phrenic nerve

involvement? I have not been checked for lung capacity in about 10

years,since that medical.

Thanks,

Donna from London