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)

Friday, June 22, 2007

Words

Location: Iowa
Cathy gets stuck on words. They change from time to time. It is difficult watching her struggle... it seems as if she knows what she wants to say. (Like when you are talking to someone & the a word escapes your mind & you say "it is on the tip of my tongue".) She will stop mid sentence and just blurt out, "Actually." She may say the word Actually 100 times a day or more. Sometimes she will just walk around and repeat it over & over. Othertimes it is at the end of a sentence. She also waves her hands in the air as she says it. Almost as if she is saying, "you know what I mean... it's not really actually... but that is what is coming out". And then she will laugh. She laughs and smiles. Laughing at herself, laughing with us... So we smile & laugh with her.

I didn't realize how often I use the word "actually" until now! Everytime I say it I think of her. Do you suppose she got it from me? No. I think everyone says it often, we just don't realize it. Our 3 year old daughter says it too. She will put click her tongue, like she is saying something really important, and say, "actually, I am thirsty." or "actually, I think we should play a game." After talking with my sister-in-law we realized that all of our kids use this word.

My friend Angie has been up to Wisconsin with us the past 2 summers. After this trip she & I cannot say the word actually to each other without laughing. If anyone is actually reading this blog, I dare you to see how often you use it. Actually.

Actually.

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