Re: Lower backpain/Timo and Anne

[Guest guest]

Jan was a marathon runner, etc., with well developed muscles. Years past, muscle spasms were visible. Jan was given Baclofen for only one month. When PT reported no improvement in walking and imbalance in standing ( hypotension is not a medicare consideration so stopped therapy sessions and I was unable to hire a therapist anywhere) I eased pain with bed and chair exercises. Later I rigged an overhead orthopedic bar to passively stretch contracting muscles. Professional massage lady taught me to knead charleyhorse knot pains and relax tension and he loved that. Stomach and bowel muscle use was prolonged by deep manipulation. Eventually the pain was too intense and widespread to touch him. Infections and open "drop" wounds stopped home massage visits. Muscle wasting pulled joints and bones awry Contractures have twisted him into a fetal position. His legs are scissored bones and all he moves now is his eyelids. Arms are rigidly crossed and must be pried away to take vital signs. Tongue and eye muscles are following a similar uncontrolled spastic/atrophy pattern. He DOES hurt. Last month he was given Baclofen. We use OTC Tylenol for pain and RX Aceteminophen with codiene for agonies. The process of numbness, disuse, spasm, pain, atrophy, wasting and disintegration is slow but unrelenting. Bill Werre is adamant and right that if you don't use it you'll lose it.

Everyone is different. Hopefully this is a worst scenario. Jan's spine is now the prime concern and every 3 hours he is rubbed aggressively to lessen muscle tension contorting stomach and bowels. I don't know how he hangs on --champion mentality keeps

him going- and that is impaired by fronto-temporal dementia. Not enough sense to quit? Or his pain is not "normal?" Who knows?

Rereading, this sounds terrible. Not intended as a pity plea, it is all that I have observed and tried to keep Jan as comfortable as possible. Footdrop and torticollis may be common to MSA but that does not lessen patient distress. Hope shared knowledge and experience helps you both.

LA Louise in mosquito paradise Springhill.