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It is also available as a book with added comments and thoughts. It is a fundraiser for Multiple System Atrophy research - the disease that killed my wife and the catalyst for the blog. Please consider buying either a Kindle version from the Kindle store or a paperback version from Amazon. The title is "Living With A Snowman" by Scott Poole. It is available for purchase HERE.

Sunday, January 20, 2008


There are two blogs that I have been thinking of writing for a while. This is one of them. What do you say to a person you love and have lived with for over three decades when they turn to you and say with tears in their eyes, "I don't want to die"? What do you do when you have kids and family members that just ask "How is she doing?" and just want to hear "Fine", or "About the same"; even if it is not true? How do you make people understand that you are living with it every day and that it is not going away and that it is hard? Hard for those of us around her, but even harder for her. How can you watch your wife of thirty-four plus years not able to get out of bed or up a single step unassisted when you still see her as the eighteen year old you married? How do you answer a 53 year old that asks you if she will see her daughter, a junior, graduate from high school? How do you get your kids to get off their asses and recognize their mother needs them? (with one exception, Steph) Not later, NOW! How do you respond to a social security ruling that denies disability so your insurance is going up to more than your rent every month? How do you deal with insurance and government people that are on a timetable that is slower than a glacier? What do you do to help when you have seen, in eleven months, a progression from walking slowly, to walking with a cane, to a rollator/walker sometimes - cane sometimes, to a rollator / walker all the time, to a wheelchair sometimes? How do you convince someone to go out when every movement is a tremendous effort and one of your biggest fears is seeing someone you know or used to work with? What do you do when you are a control freak and things are out of your control, no matter how hard you try? I do NOT want any sympathy for me. I am not going to say I am not human. I am not going to say this was not a release for me. But comments on my condition are irrelevant. Sympathy, compassion, concern, and love for my wife is demanded. She needs all of you. Questions need answering. I don't have the answers.

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