Hi.....I was diagnosed with AMN eleven years ago when I was 51. I had always been an outdoorsy sporty type person, and went on to be a teacher trained in physical education and remedial gym. I played a lot of sport and referried and coached many teams in many sports. When I couldn't keep up with my seventeen year old son on the basket ball court, I put it down to old age. It wasn't, and I was told I had AMN. By this time I was stumbling around like a drunk......and I couldn't feel my feet. The news was a bolt out of the blue for me, but after some research we realised that both my maternal uncles had died from ALD and AMN . I now have a team of specialists supporting me. I have regular neurological tests and a MRI once a year. I wear callipers to help me walk and lift my toes, as well as a baclofen pump inside me to regulate the flow of baclofen into my spine. I take cortate regularly and my wife carries cortisol injections for emergencies. I have finally reached the stage where I need a wheelchair when I am outside the house...I am not strong enough for even small walks now. The falls have taken a toll .....many broken ribs, broken spine and countless cuts and bruises. The joke always was .....dad can't walk and talk, now ....grandpa can't walk. As each new challenge pops up, we find a solution. Our philosophy is ....no regrets and we make the most of what we can. I don't know anyone else who has this disorder, and was hoping for any new ideas or knowledge ....whatever is out there. Maybe my experiences can help someone else.
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