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Raymond W.

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1 reviews

Review for Multiple System Atrophy Coalition, Charlotte, NC, USA

Rating: 5 stars  

In late 1987, my wife Charlotte saw our PCP for tiredness and they gave her thyroid pills which helped somewhat. In 1990 she was stumbling and changed jobs to have shorter hours and the doctor sent her to a neuro who tried her on Sinemet and she responded fairly well. By 1992 they referred her to a movement disorder specialist who said more than just PD and probably OPCA. In 1995 our neurologist got her into NIH and they said probable MSA (Sporatic OPCA is MSA). By this time she was losing weight and pretty much bed or w/c dependent. She continued to decline and had a severe infection and coma in the summer of 1998 which led to the installation of a PEG. With the PEG she gained weight and recovered a lot of her movement which was lost to the infection. She died the day after Thanksgiving 2001 almost 12 years after her first PD symptoms. She fought a good fight. In 1998, I discovered the Vanderbilt Shy-Drager Syndrome list server (the forerunner of the MSA Coalition). Pam Bower was there before me and suddenly I had experiences of caregivers all over the World. Don Summers took over the National group about that time and was already finding money for annual national conferences. That same group is now the MSA Coalition and is a super dedicated group that now not only provides conferences, but also grants for MSA research. The picture is my wife in May 1998.

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