Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Kay, It is not very often that I dont know what to say, but I am sitting here with tears streaming down my face. You are one of the strongest human beings that I have ever come across. You attitude is amazing. I commend you for being a truly extraordinary person. Gretchen, is there anything that we all can do to bring attention to this? I would be willing to do what ever you suggested. Im sure there are plenty of others that would do the same. I wish I could meet you in person Kay! In My Thoughts and Prayers, --- Omega Realty <omega@...> wrote: > 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 > > > > > > [Non-text portions of this message have been > removed] > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 I love Eckhart Tolle.... The Power of Now and highly recommend it. It brings peace beyond measure to your life. Tammy > > , > > Thank you, for you kind and understanding post. I feel all of us here are > extraordinary people, and I so appreciate yours and everyone else's posts! > > I was at the beach this morning, and as I sat there meditating, I thought > how cool it is that so many CMT'ers take time out of their busy days to > respond to each others messages. This is definitely a give and take forum! > > , I wish I could meet you too! Maybe someday. I was thinking it > would be fun to have a CMT gathering here at the coast. Is there anyone > interested in that? > > I Love this Quote, so I'll close with....... > > " Let Every Moment Be Your Friend, Not Your Enemy " Eckhart Tolle > > Kay > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Hello Kay, You can not believe how much I would love to meet you all one day. I would realy love this idea !!!!!!!!!!! lol I am here in London and always felt to visit USA on day... but meeting others brothers like us , That it would be something really wonderful.... I also have relatives at New Mexico Albuquerque, but never beeing there unfortunately. It would be so great if one day we could organize a conference just for us from , a special meeting somewhere out there in USA . I would love to be there too...so Much so! Have a Great Week Kay. Hugs Joana in London > > , > > Thank you, for you kind and understanding post. I feel all of us here are > extraordinary people, and I so appreciate yours and everyone else's posts! > > I was at the beach this morning, and as I sat there meditating, I thought > how cool it is that so many CMT'ers take time out of their busy days to > respond to each others messages. This is definitely a give and take forum! > > , I wish I could meet you too! Maybe someday. I was thinking it > would be fun to have a CMT gathering here at the coast. Is there anyone > interested in that? > > I Love this Quote, so I'll close with....... > > " Let Every Moment Be Your Friend, Not Your Enemy " Eckhart Tolle > > Kay > Quote Link to comment Share on other sites More sharing options...
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