MS Connection Blog


Planning for the Long Term: Taking Action Today

Blog Summary

I was diagnosed with primary-progressive multiple sclerosis in 1997. "Progressive" means that the disease, well, progresses. I am now functionally quadriplegic, having only partial use of one arm. To write this I am using speech-to-text software on my iPad. I also use my iPad to control the lights, heat, music and door locks in my house. I have been a wheelchair user for 12 years. I am unable to perform any of the activities of daily living (for instance washing, dressing, toileting, eating, etc.) and am completely dependent on home aides to help me with everything. Yet I continue to live alone in my own house.

Not Just Clumsy

Blog Summary

I was in my 20s the first time I tripped while I was jogging. I skinned my knee and my hands. I didn't think much of it. It was dark and I was running in an older neighborhood in Washington, D.C., with lots of cracked sidewalks and tree roots. It could happen to anyone. Right? Over the next 15 years, there were many more falls. Sometimes while I was running, sometimes walking. Sometimes in very famous places (good morning, Grand Central Station!), sometimes on anonymous sidewalks in quiet towns. I never had any trouble making excuses for my tumbles – clumsiness, ice or too-high heels. I told my stories for sport at cocktail parties, laughing them off and inviting friends to join me in that laughter.