I am VERY tired so this is just a quick summary... I will get to more later. Basically it was a quick, busy, & amazing visit! Dr. Boeve & his staff are MAGNIFICENT! We found out the name of the "bad guy" causing all of Cathy's problems... TDP 43. (Toby is the Genetics guy... most of that info goes over my head, but it is extremely interesting.) We met another family who has 2 daughters suffering from this disease... diagnosed at 31 & 37!!! We also heard of a family with a son who is 27!!! It really puts things into perspective.
Dr. Boeve suggested that we could increase her Seroquel dosage... so we are steadily going to do that, hoping for help with her restlessness & sleep. We are also going to meet with a Speech Therapist at Mayo when we go back on January 10th.
Sites to check out with info on Genetics & FTD:
www.genetests.org
(Search for FTDP-17)
www.ftd-picks.org/?p=diseases/ftdp17
(I use this site alot & there is TONS of info on here. Read the AFTD newsletter from November 2007, it is linked on this site... Dr. Boeve has an article on the front page.)
www.pubmed.org
(I usually use medlineplus or webmd, I honestly hadn't heard of this one... but he uses it the most & says that a year ago there was only around 20 articles & now there are 3x that amount.)
Gayle & Jean took Cathy back home to Wisconsin and I headed back here to Iowa. (I stopped in Austin & Mason City to finish my Christmas shopping! It was SO wonderful to be alone shopping for a change!) We are going to head back up to Wisconsin on Saturday for Christmas. Barb (& Gary)is going to spend the day with her tomorrow & another friend Barb(&Pete) is going to spend time with her Friday while Gayle works. I am sure Jean will check in on her also.
Thanks Jean for going along! She sat with Cathy during both of her MRI's & it made a world of a difference! We also took Cathy to get her hair cut & colored last night... it was fun & she was so Happy!!!
Side note: I have a guess as to why Cathy is so mad at Gayle. I noticed a few times yesterday & today that she points at him when he is eating & once she said, "Diabetes, On Fire!" ... I bet she is made because he isn't eating well now that she isn't taking care of him??!! It all started the night we went down to Barb & Gary's for supper and he stayed up at the house, when we came home he was sitting on the couch eating & she got upset that night. Hmmm.... maybe?
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