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I have been dealing and fighting with a form of Muscular Dystrophy - Charcot–Marie–Tooth disease - for my entire life. It is a disorder of the peripheral nervous system that ultimatly gives way to muscle loss and touch sensation. [link] Up to now my condition gave me issues - dislocating knees, zombie/fumble fingers, physical challenges and fatigue - that with constant attention to, I have managed to keep mostly to a medium roar.
The year 2015 has become a large bowl of struggles and hurdles. With a full knee dislocation in the shower which lead to a 'this is where I am going to die' style slip and fall... I found myself severely broken on the first morning of the year. It seems the CMT decided this was a great time to escalate my condition.
I am now forced to be in a wheel chair and I am limited to short moments of standing and walking. My crumpling hands are completely numb with grip and muscle strength becoming very limited. My knees are as weak as my confidence. Daily stuff like showering, cooking, or simply getting off the toilet have become my bane.
So, my wife and I are trying to find whatever is needed to get me back on my feet.
We are currently working with my personal doctor, a physical therapist, an occupational therapist and an orthotist to overcome my current state. It has been a long line of co-pays and deductibles. They are at the point that they want to put me into a KAFO (knee-ankle-foot-orthotic) that should allow me to stand with support and confidence. They also want to create custom hand splints to hold my hands in a better position to alleviate pain and fatigue.
As you know, to do custom things like this along with appointments and such can get very expensive. I am being told that the first set of leg braces will cost me $2000, and that is with insurance. These braces will only be used while I regain strength and confidence then a second set would then be made for daily living. They said, due to my specific issues, that it could take many renditions of braces to find the custom fit needed. We were warned the cost could be difficult for anyone.
I am very excited for these possibilities. I could walk again. I could work with my hands again. I might regain life without the bouts of pain and fatigue. Any help would be greatly appreciated.
The year 2015 has become a large bowl of struggles and hurdles. With a full knee dislocation in the shower which lead to a 'this is where I am going to die' style slip and fall... I found myself severely broken on the first morning of the year. It seems the CMT decided this was a great time to escalate my condition.
I am now forced to be in a wheel chair and I am limited to short moments of standing and walking. My crumpling hands are completely numb with grip and muscle strength becoming very limited. My knees are as weak as my confidence. Daily stuff like showering, cooking, or simply getting off the toilet have become my bane.
So, my wife and I are trying to find whatever is needed to get me back on my feet.
We are currently working with my personal doctor, a physical therapist, an occupational therapist and an orthotist to overcome my current state. It has been a long line of co-pays and deductibles. They are at the point that they want to put me into a KAFO (knee-ankle-foot-orthotic) that should allow me to stand with support and confidence. They also want to create custom hand splints to hold my hands in a better position to alleviate pain and fatigue.
As you know, to do custom things like this along with appointments and such can get very expensive. I am being told that the first set of leg braces will cost me $2000, and that is with insurance. These braces will only be used while I regain strength and confidence then a second set would then be made for daily living. They said, due to my specific issues, that it could take many renditions of braces to find the custom fit needed. We were warned the cost could be difficult for anyone.
I am very excited for these possibilities. I could walk again. I could work with my hands again. I might regain life without the bouts of pain and fatigue. Any help would be greatly appreciated.