Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Welcome Ray. Thanks for the introduction. Your email looks familiar, were you here once before? For sure use our Chat here. If you want to, set up a time you can plan on being there, then post so others can join. Remember, we have nearly 1,400 members spread out in 29 countries and all world time zones. I hope you find helpful and hopeful. ~ Gretchen/Founder and Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2009 Report Share Posted December 5, 2009 Thank you Gretchen - I might have joined a few years ago. I had stopped going online about CMT a few years ago in an effort to not let it consume me. At that point, a little knowledge was not a good thing. Nowadays, I think will ne good for me. Thanks again. Ray > > Welcome Ray. Thanks for the introduction. Your email looks familiar, > were you here once before? > > For sure use our Chat here. If you want to, set up a time you can plan > on being there, then post so others can join. Remember, we have nearly > 1,400 members spread out in 29 countries and all world time zones. > > I hope you find helpful and hopeful. > > ~ Gretchen/Founder and Moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2009 Report Share Posted December 5, 2009 Ray, most of us on here are in the same boat, aleast i am. i have CMT 1A. it is terrible when you have no balance, i fall all the time. i do have AFO and that does help, but they are heavy with the shoes. as for the cold feet and hands, i just got an electic blanket to use while awake. my quilt i got on my bed is light weight. but it is really warm at night. i can no longer work i am to much of a risk to myself. i started this group i think in august and it has really helped. i love the people on here. i dont read all the emails. but most of them. they have helped alot. i did apply for ssdi in sept and i did get approval a couple of weeks ago. i not sure if you are in the same boat for that right now. one of the things on here that got me was the 3 g's get up get dressed get out. i have been doing pt for 5 months. it has helped. good luck to you tina cmt1a michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2009 Report Share Posted December 5, 2009 Hello Ray, Your note has struck a resonance in me and I wanted to respond to the how do you live with it question. I am a 74 year old HNPP " problem " . The letters do not make much difference because the variability between individuals of these peripheral neuropathies range from so slight that one does not know of it and the other is crippled for life. Neuro-docs like to smile and say, " You know it won't kill you. " Well that is a crock of B.S. as far as I'm concerned. This genetic thing has the power to make bad situations deadly in the area of side effects. i.e. falling off of a tall ladder or hitting the accelerator instead of the brakes with your foot can be very deadly indeed and how about a poor heart brought about by the lack of exercise. Well that is all true but it only means that you have to be more inventative in order to have a satisfactory life. That's more than is required of " normal " people, but it is the price we pay. Now, how do we get at this thing which should not discourage you from having a life. It only means that we must get to know the enemy so to speak and learn how to do what our heart desires in something different than a normally healthy manner. Here are some of the rules. Doctors who have not personally experienced the neuropathy know only the averages and the phenotypes. Accept what they can give but work at learning from people who have the disease. This is a good place for that. Protect yourself by knowing your limits and what activities aggravate the condition. By all means test yourself to find out, but do it like a scientist with a limited budget. Be smart and conservative. Obvious things are dismissed out of hand. Set a good regimen daily and keep an eye on long term effects that advance with age. Exercise as much as you can but don't overdo. Make a comprehensive plan to optimize what you have and conserve it in the long run. Back off a bit as you go along as needed. Smoking, drinking, chemical exposure, muscle overloads, obesity, etc. are much more serious for you than a " normal " person so be well aware and control them tightly. Protect yourself with a mental attitude that is more carefully constructed. Find the things that relax you or make you ward off the blues and angers or accomplishments that make you feel good about yourself or those things that give you respite when it's needed. In the long term the way you run your life is the measure of what you can have in the future. One thing is sure, your younger years are the best time to take some chances exploring, but keep it in mind and use a diary or a chart to prevent mistakes. Protect yourself by carefully choosing work conditions. Maybe wanting to be a tennis pro is not the right thing. An occupation that allows you to vary your day's activity and give your body a chance to recover is essential. Being on your feet as a store clerk all day is a bad choice. Protect yourself by making use of support resources, your going to need them! Family, friends, coworkers, doctors, faith people, altruistic endeavors, clubs, etc. are the networking groups that will help you to find a satisfactory life. There is a time to laugh it off and there is time to be serious with those who surround you. In the long run this is what everybody should do but you need to do it more specifically. Protect yourself by taking conscious aim at your objectives in life. Don't aim too high or too low. This is not something you can " bull " your way through. Fine you say, but " Tell me what exactly I should do? " Well I could write a book about what I've done so far for myself but it would be only good for me or my clone. Even then the world around me would be different for another individual and another time. I guess my best advice is to think about this as a mode of life necessarily different from the norm and very personal. One thing I do know is that it is needed until the day you die as it truly colors most all of life's decisions and it is a cumulative effort that determines what you end up with, to each one of us very personally. EdM from NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009 Hello Ray, I think you came to the right place, this is the place for TIPS and tips do make the difference. About balance get ready for a long journey, at the end you will find the support you need (i mean the good therapist and feet support), sometimes it takes a while, but fixing a bio-mechanical problem is a difficult task, just don't give up and try to learn all you need. About the emotional part i found myself that meeting people with similar disease helps a lot. I do not have exact explanation for this, i suggest you try to go to some meeting or see some other people with similar disease: there is a sort of " magic " about this: many people feel a lot better. You won't offend anyone! Take care your freak-friend Ron Quote Link to comment Share on other sites More sharing options...
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