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)

Wednesday, May 14, 2008

Note from Jean

Hi Everyone:
Went to church services with Cathy again today, actually they
have services every Wednesday,so I do try and get there for that...Cathy has gotten
real comfortable with the Pastor,
she sometimes brings him a song
book when we enter the room....
I also noticed today that she turned to the right page of our book several times....usually she
doesn't seem to have any idea what page or song we are singing.....Afterwards we went for
pie and coffee, yum, yum!!!!
I picked lemon pie for Cathy, I
thought it would be easiest for her
to swallow,, still had a hard time....
She wanted seconds, but we went
outside for a nice long walk instead.... When we got close to
where Barb S. works, she pointed
and mumbled something... She also pointed toward the highway 54....Wonder if she was thinking
about home????She had a new T
shirt on, and was she ever proud
of that. pictures of her family and
grandkids....Great idea !!!!Anyway
when it was time for me to go, she
went and got the book for me to
write in...What a gal....The nurses
\in her unit said she is pleasant
and smiling most of the time.....
I'll see her tomorrow,, Cathy's
family need not worry about her
abit, she is well taken care of..
and loved by all..... Jean

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