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 Hubby to take part in research 
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post Hubby to take part in research
We had an appointment at the Univ of Mich with his neurologist earlier this week and he was asked if he would be interested in talking to someone regarding taking part in research for LBD. Funny, we had just been talking about him getting into the research program in the waiting room while waiting for his appointment and he told me he didn't want to be guinea pig. Our last conversation about brain donation, he said he didn't want to do that either because he might still need it! That was about a month ago.

After our appointment we sat down and had a long conversation about the research being done at the University with the person involved in signing people up to be part of this research. My hubby signed up for the research program!

It will start with memory testing. They will do PET scan and MRI and the University has a new P.I.B. scan that was developed by the University of Pittsburgh that can verify LBD and/or Alz. (I guess it's also called the Pitt Scan). They will be testing for abnormal amyloid in the brain and dopamine levels in the brain. Probably other things too. I think I have this information correct. These scans take two days, so they will put us overnight in a hotel. They will tell us the results.

He will also have blood drawn, basiclly trying to find markers, but we will not be given the results of this testing because the results they are getting - they do not know what they mean. It's research.

That is all that will be done now - we will start the second week of January. After that, they will want to see him once a year for memory testing to find how much memory is lost each year.

We also talked about brain donation and hubby agreed to that too. She has already told me the procedure (which I already knew from this forum).

I am really excited about this! I'm so proud of him to take part in this research. He is helping our children and yours. He can back out at time he wants. But there is nothing that will harm him. Nothing that he hasn't had done before. I will keep you posted.

When the study is done, there will be a paper released.

Fri Dec 11, 2009 10:23 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Hubby in a research program
Karen, good for you!!! Next time you hug your hubby, please give an extra squeeze for me.


Fri Dec 11, 2009 11:48 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Funny, we talked to my husband's aunt about brain donation and she said the same thing "I still need it!" She had dementia so we didn't feel she was competent to make the decision. We knew she was the sort of person who would do anything to help others, so we did see that her brain was donated upon her death.

Wonderful that your husband is willing to participate in this research. Obviously, his participation is made far more valuable by pathological confirmation of the diagnosis.

PiB = Pittsburgh Compound B (PiB) PET scan. It detects the presence of amyloid in the brain. Amyloid is present when there's Alzheimer's Disease. PiB scans were beautifully and sadly described in "The Alzheimer's Project" on HBO. The big focus thus far has been to use PiB scans for those with familial AD.

As indicated in the June '09 webinar on DLB, Dr. Jim Galvin has been using the combo of MRI and PiB to diagnose AD, AD/DLB, and pure DLB.

PiB will *not* verify DLB. The only confirmation of DLB is (still) upon brain autopsy.

Sat Dec 12, 2009 12:50 am

Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
OK Dorthea - next hug is for you!

Robin -

Thanks for clarifying. Good you are so knowledgeable about all these different scans and tests.

The University is doing research on all the dementias:

* Alzheimer’s disease
* Vascular dementia
* Parkinson’s disease
* Dementia with Lewy bodies
* Huntington’s disease
* Alcohol related dementia – Korsakoff’s syndrome
* AIDS related dementia
* Fronto Temporal Lobar Degeneration (FTLD)
* Creutzfeldt-Jakob disease.


Sat Dec 12, 2009 9:23 am

Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
Karen, how wonderful for you & your DH. Also so good to hear that the university has undertaken this research. It surely will help so many in the future. Dee

Sat Dec 12, 2009 1:22 pm

Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post Re: Hubby to take part in research
It's been a year already and Bill had his annual memory testing at the Univ
of Michigan today for research. It takes about 4 hours. They will call me
next Thursday to discuss the results.

While he was being tested - I was seated in their library. (It's a very small
room with a few books and DVD's you can take out. There was also a literature
rack - on that rack was the brochure from LBDA - "An Introduction to Lewy Body
Dementia" by LBDA. I was impressed. I had given out a few of my copies to the
neurology department months earlier but I don't know if that is how they heard
about them and ordered them. Doesn't really matter - it's just wonderful that
they have them available to patients and caregivers.


Wed Jan 19, 2011 11:33 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hubby to take part in research
Keep us posted on the results!

Thu Jan 20, 2011 12:37 am
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