Bulbar and Ftd

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Hump1950

New member
Joined
Jul 10, 2018
Messages
3
Reason
CALS
Country
US
State
Ga
City
Gainesville
As a caregiver for my wife(61) diagnosed in June 2018 with bulbar als plus ftd. I've been reading and learning much from the forum, thank you very much. We have a feeding tube for past 3 mos because couldn"t swollow . I know every person is different but still able to walk and use hands . Does it necessarily always go to limbs or does bulbar go next to respiratory. thank you
 
Welcome, Hump. I moved this to the caregivers' forum so everyone could meet you.

There is no clear-cut pattern -- it is possible that there will be limb and respiratory problems pretty much around the same time, or not. I know that is vague, but we can't predict. It is good to keep up with breathing tests but also to listen to how she breathes, especially while asleep, and to stay ahead of needing any mobility devices like a walker. You and she, rather than any book, are the best early indicator of what she needs next, especially with FTD.

I'm very sorry you are both faced with this.

Best,
Laurie
 
Laurie
Thanks for the reply. In our case the beast was beginning to go to legs but still good movement with arms. Yes, she passed feb4th in my arms my sister and her personal dr present past couple mos pretty bad with saliva and mucous but the end was very easy. No gasping for air. Pulse got weaker and weaker. Then passed. I’ve been reading on forum for about 6 mos and sure do appreciate everyone. I’m 70;so not very good at this stuff I would like to say that there is a possibility that your loved ones can go peacefully at the end. I’m so thankful for that. My mantra was look ahead but not to far ahead. Thank y’all so much
 
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