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3Grandboys

Member
Joined
Oct 7, 2014
Messages
22
Reason
CALS
Diagnosis
10/2014
Country
US
State
AZ
City
Tucson
Hi all! It's been awhile since I've posted.

My husband was diagnosed with ALS-FTD in October 2014. He is definitely weaker in body and mind, week by week!

He presented bulbar ALS and personality changes FTD, before a thousand other symptoms kicked in. He just started using a walker when we go out, which was shocking to me that we are already at that point. His ALS doc says his illness is fairly rapid deterioration. I am just so sad and overwhelmed.

Advice please! now recommended is bipap machine at night as well as we are to consider feeding tube because his weight loss of 30 lb in a year. Just now sure how someone with FTD will do with these changes. Or me!

Please share your experience, which is ever so helpful!
Thank you all; i am so grateful when you write.
 
All I can say is that my wish should I get FTD is to get a feeding tube and bipap if I will tolerate them because I think they are comfort measures. Neither is diificult for you as a CALS. The feeding tube will be easier for you in the long run. If he won't accept bipap then he won't but try it. I suppose if he pulled at the feeding tube it could cause some problems but if he tries there are clothing solutions
 
I can so relate - my Chris was bulbar onset with FTD and rapid progression.

What does your husband say about the offer of peg and bipap? That's a big starting point to me as his attitude to it will dictate what your experience with caring for him with these will be like.

The peg will allow you to get medications into him and this will become increasingly important. The peg is not always that much of a comfort measure with FTD, but it will allow you to do some things like fluids and meds. But don't despair, particularly in the end stages fluids and meds can be given IV.

I would like to talk you through some of this, but I do have questions about what he is telling you about these. Also how severe is his FTD? Nikki mentions pulling the peg out for example which would indicate in pretty severe FTD. My Chris was never even close to anything like that, but his behavioural issues meant he would constantly refuse peg feeds and continued in a pattern of starvation.

We never used bipap as Chris waited far too long.
 
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