1997

1997 was a year of research and exploration into this crazy MS disease, and trying to figure why there was such a radical difference in my symptoms between Wichita and Cedarcreek. Those symptoms most affected were endurance and fatigue. I could stay awake most of the day, and actually make a few trips up/down the stairs to do laundry rather than spending 2 or 3 days to do one load. Physically, there was little change. My left side was much worse than my right, and I had little coordination with my left hand/arm. I could not scrub my head (shampooing) with both hands—had to use my right hand exclusively. Mel had to cut my food, and I needed assistance with any 2 handed job—though I got very inventive in ways to achieve what needed to get done. I'd read (in 1994) that oral Methotrexate helped with upper extremity abilities, and had started it in 1995. A note in my 1996 journal thanked Methotrexate for delaying early right hand spasms—giving me a several month reprieve.  

Meanwhile, I was in chatrooms, meeting lots of people with MS and learning new ideas, & treatments. I was feeling particularly low one day, and was violently taken away from a self-pity party by a lady (since passed) who invited me to her web site. It turned out that she was a quadriplegic using total voice control, and striving to receive a drug available only in Greece at that time. The drug was Mitoxantrone. It is now approved in the US for MS and known as Novantrone. She recommended to me that I call a Kansas City physician who had opened a trial for high dose IV Methotrexate. She even gave me the telephone number.

I called, and asked if I could be considered for the trial. They told me that I sounded like a candidate, and they sent a lengthy questionnaire, which I completed and mailed back. The next I heard was that they were very interested in me, and they set up an appointment for an examination. The exam went well, and I was accepted into the trial.

More to follow!  Hugs.

PS The picture is of a Puffin—another of my favorite birds.