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pfowler44

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Hello everyone, It has been a long time since I have been here. I thought I might just update on my husbands condition and let you know what he has been doing for ALS research. He has familial ALS and 4 of the studys he is in has to do with that. The newest study he is doing is at the Unversity of Michigan, Ann Arbor, to study the effects of ALS and dementia. He went in January for his first MRI and then two week after that. His next MRI is in April and he goes every three months for an MRI. It is a blind study so he doen't get any results but they have told him that they have gotten alot of good info from his brain. lol. We already knew that he has a high IQ but they said they could tell that from the MRI. I guess the way they conduct the study tells them that. When he is in the MRI machine he is there for about 2 to 2 1/2 hours and they have him do things like read (they put a mirror in the machine) and do verbal and non verbal tests. We are excited about this study because we have noticed some cognitive changes in the last year or so we used to attribute to just normal aging. They are having some trouble getting others in the study. Fortunatly Bob was diagnosed early and he does have some time to do this study for them. Now about Bob. He is doing good. Is still having alot of pain but is off the Lyrica because it make him to doped up. He takes Motrin for pain. It doesn't alway help but that is what he wants to do for now. He is still getting around good too. He was also diagnosed with diabetes and I am sure there is some neuropathys going on which is very painful. I was reading some of the post referring to ALS and Diabetes and that was interesting to me. Bob's third cousin who has since passed from ALS a few years ago was in constant pain and I often wonder now did he have diabetes too. There doesn't seem to be a history of diabetes in his family anywhere. But I am still researching that. Have still only found 8 other family members of his that where diagnosed with ALS but the long lineage of stories is quit interesting to say the least. I have documentation of symptoms of ALS in his family dating back to the early 1800s. Have pictures too. Well I guess this was a book so I better go now. One question though to the mods. I have written a small paper on Bob's family history and would like to post it here in the near future. Is that allowed?
Thanks for listening Sincerely Pat
 

Al

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Hi Pat. How small is the paper? I'm not sure if we have size limits to posts but it may be interesting to some of us.
AL.
 

hearts_and_thoughts

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That is quite interesting about that study. My brother was diagnosed in the VA at Ann Arbor and I believe my brother has frontal temporal dementia. He doesn't want any involvement with research now but says that he will allow an autopsy if there is a purpose. We have familial ALS also. I wouldn't mind having an e-mail address of someone from the study team so that I could contact them though. Can you help me with that?

Mary Jo
 

Al

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Boy are you smart CJ. Pat could put everything on her own blog here.
AL.
 

Lorie

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Pat

Very Interesting. I will watch for your Blog. I would love to read about it and see the pictures.

Lorie
 

pfowler44

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Wow I didn't expect to get this many responses. As soon as I figure out this blog thing I will post my story. The Dr in Ann Arbor that is doing the study is Dr Robert Welsh. I would think if you called the University of Michigan they could put you in touch with Dr Welsh. He contacted us by mail because my husband goes to the ALS clinic there.
Thanks for all the feedback and I will post my story in blog after I get my grandaughter to help me out. Lots of Love and warmth on this fine Easter day. Pat
 
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