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)

Saturday, September 22, 2007

Words part 3

Everafter... (started sometime this summer) I think this is from a movie she watches with Drew Barrymore, I happen to really like this movie, but I now have it memorized.

Come Alive... (started sometime in the last month) I am not sure where this came from. Anybody know?? Maybe from a movie. I worry it is because she is thinking about the illness. I hope that is not where it is from. In early August we were sitting around the dining room table visiting. Cathy walked from her bedroom, past us, & then to the living room. As she walked she mumbled, "my life is in danger". I tried to go over and ask her what she meant, what was wrong. But she just looked at me and said, "#9." #9 is the shot she is holding out hope for. The shot that was discussed with the Mayo Dr. possibly? I wasn't at that Doctor visit. But I believe they discussed an experimental shot that may have been ready by August of '07, something to hopefully slow or stop the progress of this disease. As far as I know now, it is not available or she no longer qualifies for it. It was not mentioned at her appointment in July.

It is bittersweet... It is good for her to have hope, even if it may never come. Hope is just as strong as medicine!

And once again... she does not seem to be in any pain. I have asked her from time to time, and her answer is always, "No."

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