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January 25, 2007

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Robin Dilg

While my mother was dying of Alzheimer's in November I was diagnosed with small vessel cerebral vascular disease and told I'd had 3 TIAs. I am a social worker who manages a SW department and I have worked a lot with the elderly in our nursing home. My own high level of self awareness was the only reason I have been diagnosed. My own doctor at first denied that I had a problem I score 30/30 on my MMSE. My mother's mother also had what they then called "hardening of the arteries". Both my mother and grandmother went blind and deaf and eventually wasted away after very long illnesses. I strongly believe we have a genetic link to Alzheimer's in our family and I am interested in becoming part of a study but have no idea where to go from here. My neurologist told me to take a baby aspirin and to stop taking decongestants. That's it. I want to take some direction from here but I have no guidance from my neurologist or family doctor who is himself ready to retire and appears way to laise faire for me. Any suggestions?

Mona Johnson

Hi Robin,

Thanks for leaving a comment on The Tangled Neuron. I'm really sorry to hear about your grandmother and your mother, and that you are experiencing problems. Of course, I can't give you any medical advice. Have you tried getting a second opinion? Or a third? I don't know where you live, but you might do better at an Alzheimer's Disease Research Center (see http://www.nia.nih.gov/Alzheimers/ResearchInformation/ResearchCenters/) or at a clinic specializing in memory disorders.

For trials on Alzheimer's genes, you might check on www.clinicaltrials.gov. If you are close to Madison, Wisconsin, or can easily travel there, you might look into joining the Wisconsin Registry for Alzheimer's Prevention (http://www.medsch.wisc.edu/wai/wrap/eligibility.html). You don't have to live in Wisconsin to participate. You could also check whether you're eligible to participate in MIRAGE (http://www.clinicaltrials.gov/ct/show/NCT00239759?order=1).

I know how hard it can be to find information - best of luck!

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