[PegMeerkatz]

Was dx in 1987 able to return to work in 1991, worked until 2001 (had an understanding employer as I had 3 major relapses during that time that kept me out 2 months or more besides just days I was not up to working). 2001 started having cognitive problems that interfered with my ability to do my job followed by mobility problems that forced me into retirement. Was given Avonex while in hospital in 2001 has a serious allergic reaction & almost died. After that never did return to work because between the cognitive problems & mobility problems I was unable to do my job. 2004 I was put on Rebif & had a "honeymoon period" lasting about 14 months where I almost forgot I had MS. But then I built up antibodies to the Rebif & had liver enzymes that were dangerously high. After a few months off Rebif I was tried on Copaxone but again had a serious allergic reaction. 2005 told I had SPMS. No medication (except to treat specific symptoms) from 2005 to present. Recently saw a new neurologist considered one of the best in treating MS. He gave me blood test for JVC virus hoping to put me on Tysabri. I tested POSITIVE so TYSABRI WAS OUT. Due to other medical conditions there is presently no medication that I can take.

The cognitive problems & fatigue severely limit my quality of life. I also have mobility problems use either a rollator walker or power wheelchair. Have problems with fine motor control & using both hands (more left than right - have a contracture). I fall frequently & 17 months ago it became unsafe for me to live alone & I moved in with my mom.

I have a hand controlled van with a wheelchair lift that I can use on my "good days" but I never travel far & because of light sensitivity (head lights) I rarely drive at night.

I depend on my laptop for everything my handwriting is illegible. I have a home health aide to help with "the basics" & with cleaning my area 49 hours per week. I have a small service dog that alerts to my diabetes but also knows some mobility tasks as well.

I am trying for form a nonprofit corporation to help adults with physical disabilities and should have all the pieces in place before I turn 50 at the end of November.

The way it works is I do what I can when I can & just accept that some days I can do little or nothing.