Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Tuesday, February 19, 2008

Update from Barb

Hi everyone, Glad you all got up to see your mom and very happy your dad can visit now also. I've been so used to seeing Cathy everyday that being gone a few days seemed weird. She greeted me with open arms today, but guess she missed seeing Pete also because when I left she said Pete. I asked if I should bring him with tomorrow and she said yes. I know you are concerned about her speech. Each day we work on reading things, such as the menu and her cards. Dylan told me he's going to take one of his dog magazines to Cathy because she likes dogs. Brad, he also couldn't wait to tell us you drive a train. She knows the routine when I get there because she leads me right to the menu and I point at the words and she says them. I asked who gave her the dog and balloon and she said Gayle with a smile and got his card out to show me. This is so great!!!! I also reassure her each day how much Gayle and all of you love her. Today one of the residents kept coming into her room and she would get up, smile, pat the women on the back and push her back out, then come in room and close her door. She was also busy giving staff coffee. I just came from Ryans and he was concerned about the lack of speech also, but so glad he's close. They are taking the kids up tomorrow, since they found out Laney isn't contagious with anything. She has ear infection. I asked Cathy if she had visitors while I was gone and she said" Toby, Brad, Ryan with another big smile. Our love to you all, Barb

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