Alice’s friend was initially diagnosed with mild’ MS, his illness progressed rapidly and he is now completely incapacitated by it and receiving 24 hour care at home. Alice has continued to visit him frequently over the years. She feels that she still receives as much care from him as she gives.
Alice has shared much of her last 13 years with a man who was diagnosed with MS in 1998 and whose illness progressed quite rapidly; from walking with two sticks after a couple of years, then to a wheelchair two years later. Initially he was told that he had a mild form of MS which would not shorten his life expectancy. Now, aged 48, he is bedbound, completely immobile, unable to speak and receiving care at home 24 hours a day, funded by the local Primary Care Trust. Until very recently he has communicated by blinking in response to questions which Alice feels has enabled her to know that emotionally and psychologically he is, surprisingly, coping with his condition. In fact, she says that having MS has, in some ways, changed him from a troubled to a contented person.
At the heart of the stories told in this interview is a deep and lasting bond of friendship between two people who were, initially, what Alice calls, romantic partners.’ Alice was only 24 when her partner, 12 years older than her, was diagnosed. Ultimately, in 2000, she made a very difficult decision that, despite her intense love for him, she would leave him as a romantic partner, after seven years together. But their mutual love was, and remains, intense so their relationship has continued (once he recovered from the initial pain of losing her as a potential life-partner) and in fact, Alice says, has blossomed. He is now in the terminal stages of his condition, and she is preparing herself for the pain that she knows his death will bring.