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suzkl

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PALS
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CA
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B.C.
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abbotsford
ok, my dad has probably been showing ftd symptoms for about 2 years (looking back) and more recently the ALS symptoms (only noticed the fasciculations at a neurologist appt one week ago) but he has had issues with his hand curling up in the past few months as well as difficulty breathing while laying down, major weight loss (50lbs), some atrophy, and does little, if nothing around the house. He still goes to work full time, as he owns his own business, but really just enjoys interacting with the customers (used to be quite anti-social by the way, now he's really friendly). ALS diagnosis confirmed by 3rd test (muscle/nerve &neurologist on Monday). Anyway...so we don't know what is just around the corner - but we live in Canada and have a big family vacation booked for March in Palm Springs, CA. Our health care up here is covered, but if anything happens down there it could be devastating financially even with insurance I guess. He needs no medical intervention at this point, but what about 3 months from now? Should we continue on with our plans? I guess I don't know where he is at on this continuum, but maybe no one knows?

Also - do your loved ones experience shame or guilt if they are gently told they are making a mistake or when you point out embarrassing behaviours or habits - or don't they care because of the FTD - we don't want to make him "feel bad..."

thank-you
 
We took Glen to Disneyland a few months after diagnosis for his birthday. As long as we were careful not to lose him in crowds he did fine. He didn't need to use a scooter or a wheel chair but we'd done some research in advance so we knew where we could get them just in case. Might want to talk to his neuro but I'd say if you and he are up for keep planning for now.

As far as the inappropriate behaviors... generally if they're caused by disinhibition there's really no remorse. In our case... until the last few weeks, when things advanced fairly quickly, Glen would avoid some behaviors just because he knew they would make me angry.(Think toddler again) Eventually even that didn't matter. AFTD recommends making cards that say something to the effect of "Please disregard my loved one's behavior..he has a mental illness." There are templates on their site. We had cards made that had links to ALS/FTD on one side and info about Glen's journey on the other.
 
Check to see if you can buy trip insurance that includes health insurance for emergencies... If he's stable now, I would go ahead and make your plans, but have a backup plan just in case.
 
Helen, what a great idea!
 
thank-you so much for your responses!
 
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