I can't believe that it is so hard to understand this stuff. Be warned, this is going to sound like a rant.

I posted in Neuromuscular Disorders Forum under title of Myelopathy?? Spinal Cord Syndrome??, with one reply telling me to go here. OK.

I'm just trying to understand this. I have been progressing for 30 years now, but I think this all started when I had Polio-Encephalitis in 1950. But now I'm such a mixed bag of symptoms (old bag now, heehee ), because now I also have spinal cord compression, and the neurosurgeon said I have spinal cord atrophy. It is the "higher up" stuff going on that has me concerned, which causes the upper motor neuron signs that have plagued me long, long before the Cervical Spondylotic Myelopathy (2005).

But now, I see a real possibility that I might not ever get a certain diagnosis. My extended family has long ago bailed out on me, call me lazy, don't want to work, you don't like yourself, all that blaming thing.

My daughter has been OK, but does not realize that now I am at a point in this where I truly need some help with minor stuff -- like shopping for groceries, house chores, etc.

I have upper motor neuron signs, visual distortion, stacked vision when fatigued, atrophy of left facial and chest muscles, now the right chest muscles are atrophied. Last two years, a loss of muscle and power in left thigh, and loss of strength in hands and arms. The right arm is worse, but didn't have polio on that side. After 30 years of this stuff, that is a significant progression. And the pain is unbelievable! In 2004, my feet started turning over and in 2005, I got below-knee leg braces -and then a cervical fusion of C5-C6. But I probably should have had the braces after my polio -- no one really knows. I will probably need an above-knee leg brace soon for left leg, I am told.

Regardless, I always remember to thank God that I am still walking and living independently. I just want to be free. But Dang! -- you would think that a relative might offer to help with something once in a while. When mowing the lawn, I had bleeding inside my feet, still no help. Anyway, I sold my house finally, and moved with no help from family. I didn't really push the help part, as my daughter has her own life. What can I say... I don't want to intrude.

I am in the process now of a mental moving on -- leaving my relatives behind in this -- as they just don't get it. It hurts. One thought is that my daughter can't cope with this. I think it might be better to just move to a different state. I don't know.

How do you cope with all this stuff? BTW, I am an eternal optimist.

LaVerne
ROCKING ON.