I always thought of myself as a klutz. Always falling, skinned knees were common. Isn't there a time in the aging process when you grow out of that...like the teens? People referred to me as the most uncoordinated person they knew. It was a joke, to which I got a little sensitive. It was also common for people to ask me if I was from the South. I had a Southern drawl although I was from Iowa. It hurt me when I heard someone comment on my garbled speech. It never occurred to me that an actual medical problem existed. This was ridiculous of me, especially since my Grandmother and many other family members had a genetic disease that affected walking and speech. The others in my family were affected at an older age. I guess I just never believed that myself, being only 32 could have Hereditary Spastic Paraplegia.

I decided that I was getting so stiff and clumsy that something must be wrong. I walked like Frankenstien. I was totally shot by the end of the day unless I had lain around all day, which is basically impossible, being a mother. It was time to find out what the problem was, I knew it was not Hereditary Spastic Paraplegia. The first two doctors had heard of HSP, but that was the extent of their knowedge. I searched and found a neurologist who had seen one other patient with HSP. She was the one. I was to have an MRI of the brain to rule out MS, which has symptoms similar to HSP. She reviewed the lovely pictures of my brain and gave me a neurological test. I know I could have done better, if given the chance to study. Dr. Rankin also asked me questions about my family history. With no MS, a failed neurological test and a positive family history, the diagnosis was in...I had HSP. I was secretly hoping that I was to be given a mimeographed sheet of exercises and I would return to normal. That was not the case.

HSP is a group of neuromuscular disorders that prevent messages from the brain from getting to their destination in a timely manner. When your brain tells your foot to move and it doesn't, but your momentum is going forward, you fall. The ends of the longest nerves degenerate. Imagine a slow progressing spinal cord injury. Toe-drop (not lifting the front of the feet), coordination problems, fatigue, muscle weakness, muscle cramping, stiffness, circulation problems, balance and incontinence are symptoms. Unfortunately there are forms that affect speech, swallowing, vision, and hearing, among others.

It was extreme denial at it's finest, that I never had the slightest inclination toward thinking I was a victim of a genetic neurologic problem. A nurse from Dr. Fink's office at the University of Michigan enlightened me as to what the symptoms were and that they could strike at any age. Even babies in some families can have this disease, I never knew this. Since this disease is so rare there simply is not much information available. The reason for talking to Dr. Fink's office was that they are trying to find a cure for HSP and being a relative of one of the affected, I was asked to participate, which I gladly obliged. Dr. Fink is one of the leading HSP researchers.

Right now there is no cure for HSP. Hopefully there will be soon, before my son shows any symptoms. That is definitely the worst part, knowing that I could pass this on. He has a 50% chance of inheriting the disorder.

The prognosis is different for everyone, in my family people end up in wheelchairs. I am at the point that I am beginning to use a cane or walker, depending on how much walking I have to do.

The moral of this story is to take off the denial glasses. If you think something may be wrong...check it out. Most things can be cured if treated promptly.