Guest guest Posted April 29, 2006 Report 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
Guest guest Posted April 30, 2006 Report 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
Guest guest Posted April 30, 2006 Report 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
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