Guest guest Posted September 9, 2006 Report Posted September 9, 2006 , I did the same thing when my kids were Dxed with CMT. I read so many horrible things I couldn't stop crying. I just knew it was going to be as bad as bad could be. I got so depressed only medication for depression could bring me out of it. After the meds I started seeing how life really was. My kids were happy and healthy regardless of CMT. CMT is bad depression is HORRIBLE! My cousin with MD told me that I would learn to accept the CMT just as he had learned to accept his MD. Funny I have CMT and still felt like a Mac truck hit me! Don't suffer to long, see your doctor if you need something for depression. Life is no fun being depressed. Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 , THINK POSITIVE! Another thing I do is set myself a goal for the day when I first get up, like visit someone special, do something nice for some one, etc. etc. Good Luck and Take Care Debbie from MO Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Hello , Here's a few pluses for you to think about. There are many people out there undiagnosed for CMT because the symtoms are very light to nonexistent. We don't know how many because they are not apparent. Dr. Shy is working on scanning tests so that this information can be known. CMT symptoms progress slowly as a rule and many people make relatively little adjustments in life. Positive thinking centers on what you can do and limiting pushing over the top which some do anyway. CMT is increasingly becoming of world wide interest in genetic therapies so there will be serious treatments in the future. Due to the adjustments we make, we often get into activities we never thought of in life meeting new friends and finding accomplishments that are pleasant surprises. There is a sense of community here that many people miss in life and actually, like Gretchen, we find causes to pursue and make life active and interesting. Well, that's a few off the top of my head. The cup may be half full, but there's still room to drink. Bottoms up to you and remember the cup can refill if you let it. EdM from NH - In , " Rose " <rosehorse@...> wrote: > > I've been so depressed lately about all this CMT stuff. Can anyone tell > me something positive? I'm so afraid I'll lose my home, ruin my > husband's life, go blind, have to be on a ventilator, go to a nursing > home, etc, etc. It seems like the more symptoms I read about the more > depressed I am and the more sure I am that that will happen to me. > > > > Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Hi , I remember the pictures you have of your beautiful horse, and when I start feeling depressed about everything, I always give my horse a hug ,have a good cry in his mane, and just knowing that he loves me unconditionally helps me get through my day. Some day I hope that I'll be able to have you create a model of my horse! He's my baby! With fall approaching , I always look forward to going trail riding with my husband and our friends, riding through the woods in the gorgeous fall colors. It makes me forget that its hard to walk, when I'm riding, I feel like I can do anything! Hope you feel better, Chris Quote
Guest guest Posted September 9, 2006 Report Posted September 9, 2006 Hi , When I was first diagnosed with CIDP (I was later dxd with CMT, too, through genetic tests), I exchanged a number of messages on another board with a poster who suspected she had CIDP, too. Long story short, her final diagnosis was ALS. It took my breath away to realize how easily that could have been me. I'm still not convinced that everything is going to be OK, but it is reassuring to me to read posts from people like Gretchen who have not only endured but are thriving in spite of the CMT. I am also able to look to my mother to see how it might progress for me (this is excatly what my neurologist suggested to me). She is 68, and she was only just recently " officially " diagnosed, though she knew she had it for a long time. She's about to embark on a 5 week cruise along the Nile. Her life has barely been affected. Keep your chin up -- know its not easy! Helen Quote
Guest guest Posted September 11, 2006 Report Posted September 11, 2006 Dear ... Try not to worry...CMT varies so much that you likely never will have the majority of the huge range of symptoms that people have...It's so individual...High arches and hammer toes are classic 1A, yet my son is totally flat footed. Everyone is different and has a different mix of symptoms. Stay focused on the day to day, you will cope, don't worry about tomorrow, the house etc. It's scary and overwhelming, I used to worry so much about what will happen down the road to Gavin that I couldn't concentrate. You can't know that these things will happen to you...In the words of an expert on living with neuromuscular diseases, Dr. Charlotte ...re CMT its so variable and progression so unpredictable.. " No general statements can be made " . Gretchen and others have lots of stories of doctors predicting a certain course, only to find the actual result was much less severe. Everyone I've spoken to with CMT is just so amazing, way 'stronger' than most of us...Just coming to grips with and living with these challenges makes you a way stronger person than others who are never tested. Take heart that you are already more empowered than most people who will never know how they could cope with a major challenge. Take care Sally Quote
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