Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Hi I thought I would post since I too was diagnosed at Pgh's Children's Hospital in 1975 at age 8. I am now 35 yrs old. I can't believe they're still trying to predict kids' futures with CMT! Of course I do believe it, it happened to you. In 1975 they told my parents I would most likely be in a wheelchair by age 14. I've had around 16 surgeries on my feet over the years, and am still not in a wheelchair. At 35 I have applied for disability benefits, but not before experiencing an amazing 12 year career in open heart surgery, owning my own home, wearing AFOs, managing my CMT in a manner suitable to me, and living totally independent of my parents 125 miles away from Pittsburgh where I grew up! Don't believe everything they tell you. Everyone with CMT has had a different path from what could ever be predicted. Yes, it was(and still is) hard. But I am proud of every step of the journey. And about the PT, I've had lots of that, too. Usually I can learn the exercises at PT and then continue them at home on my own. So I would encourage you to learn how the therapist does the exercises with your daughter. Ask if you could continue the exercise at home with your daughter yourself. You may not need more PT visits. I hope my post helps you feel better about your daughter's future. Never discourage her because of difficulty. She will learn to create her own path. It may not be easy, but nothing really worthwhile ever is very easy. Just support her in any way you can. You will be surprised at how strong you both will become! Just my opinion. Oh and the Muscular Dystrophy Assn helped out my parents with different things along the way, and probably will in my future as well. Best wishes. TTFN Joyce __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Well said, Joyce! G Joyce S wrote: > So I would encourage you to learn > how the therapist does the exercises with your > daughter. Ask if you could continue the exercise at > home with your daughter yourself. You may not need > more PT visits. > I hope my post helps you feel better about your > daughter's future. Never discourage her because of > difficulty. She will learn to create her own path. > It may not be easy, but nothing really worthwhile ever > is very easy. Just support her in any way you can. > Quote Link to comment Share on other sites More sharing options...
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