I absolutely want to share our story. And I say share because it belongs to all of us in some way, to my extended family, to our communities, and to the Team. It's why I avidly pursued joining the Team, because I knew that by sharing the goal of running the NYC Marathon with others who had experienced the loss and heartbreak of Alzheimer's would help to make the whole bitter experience of the loss bittersweet. There is nothing that compares to the challenge of living with the harsh reality of Alzheimer's, but the challenge of the marathon and meeting it is a source of strength that can be extended to all aspects of life. I am honored to run with my team members, who are as dedicated and sympathetic a group of people as I've encountered anywhere. And it's going to take awesome team work if the research and advocacy ahead of us is to be realized.
I welcome all suggestions of resources for my two teenage nieces who don't have any peers who share their dreadful situation.
The Sister, Nancy Israel
I first noticed that Sue was having memory problems about six years ago. She wouldn't remember our phone conversations from one week to the next. She'd ask the same questions again and again. Initially I dismissed it as the stress of her hectic life: She was a working mom with two little kids. But her memory loss kept getting more noticeable -- and more worrisome.
There was one really strange incident: Sue was staying overnight at my house. When we were setting up the trundle bed in the guest room, the bed collapsed on my foot. It hurt and I made a pretty big deal of it. The next morning I was complaining that my foot was still really sore and Sue asked why.
"Don't you remember that the bed fell on it last night?" I asked.
"It did?" she said. Even when I described the whole scene she had no recollection of it. None. It was as if it never happened. That totally freaked me out.
I urged Sue to see a doctor, but she refused. She said that her memory issues were because she was getting close to menopause. Eventually, though, her husband, Jeff, persuaded her to get examined by a local neurologist.
Sue went to that appointment alone and never fully told me what the doctor said. Maybe she didn't remember. I know he gave her an MRI, which showed that everything was normal. She was relieved and insisted that her memory problem was caused by hormones and stress. I wasn't convinced.
Coincidentally, I met Alan Jacobs -- a highly regarded New York neurologist who specializes in memory-loss disorders -- who happens to live in my town. I gave Sue his number and begged her to call him, but she didn't.
Over the next year things kept getting worse. I had the sense her marriage wasn't going well. By now she had quit her job and spent most of her time sitting around all day long. Jeff was working full-time and ended up having to deal with the girls and the house. Sophie and Emma were upset because Sue was always forgetting things. They'd have to remind her again and again to sign their homework. She'd forget to pick them up from school. She had trouble driving --since she couldn't remember how to get anywhere -- even places she'd been to hundreds of times. Finally Sue agreed to meet with Dr. Jacobs. I went with her to the first appointment.
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