My name is Betty. I am 58 years old. I am the sole caregiver to my husband, John, 64 years old, who was diagnosed with primary-progressive multiple sclerosis in 1985, three months following his retirement. He is paralyzed from the upper chest downwards-and is losing ground every day.

By necessity I have learned to use power tools, do plumbing chores, get urine out of the carpet, recognize possible pressure sores and dress a 6'5", 240 pound dead weight. All the errands, car servicing and driving are my responsibility. I do all the cooking, shopping, cleaning and laundry and have learned to give haircuts because the outside world really isn't wheelchair accessible.

Our only socializing is with other disabled couples because wheelchairs, trembling, infirmities and system failures make former friends and even family uncomfortable & and eventually distant. I miss the hugs, the snuggling, the hand holding, the love making, the dancing, and the strong shoulder to lean on. Depression, loneliness, hopelessness, and fear (including fear of getting sick myself and not being able to care for him and the fear of what will happen to me) - and guilt because I feel those things - are my constant companions.

Some things I want and need are:

1) Wheelchair ramps and buildings that are truly wheelchair friendly

2) Affordable long term care insurance that takes into consideration the fact that MS (and other chronic illness) patients can live decades while totally physically incapacitated

3) A central clearing house of services available to assist the caregiver in caring for someone and caring for the residence of that someone.