JersKid
New member
- Joined
- Dec 19, 2009
- Messages
- 1
- Reason
- Loved one DX
- Country
- US
- State
- MI
- City
- Commerce Township
Hi all. I have seen several of my friends from my FTD support group out here already. My father was diagnosed with FTD almost 3 years ago. Just this summer, he started falling all of the time which we had attributed to the FTD. It was someone at my Mom's support group who suggested the falling may not be FTD related and that he needed a neurological work up (again). We got the final diagnosis of FTD AND ALS last week. Dad has been in a nursing home in the Phoenix AZ area for the last month.
We are struggling to find out way through both diseases now. It seems that there are many times that the ALS and FTD are at odds with each other. For example, he is clearly RAPIDLY losing the ability to use his legs and he needs to be in a wheelchair. But, he does not have the upper body strength to get himself around with a conventional wheelchair but the FTD will prevent him from being able to adequately operate a motorized wheelchair (no depth perception or judgement with the dementia not to mention the inability to learn something new).
All I know is that we are exhausted from trying to juggle it all. And now, we also have an airline that wants us to declare on paper that he is "forever precluded from air travel" to get a refund on a ticket that was to be used for Thanksgiving. Since he moved into the nursing home 7 days earlier due to the falling and the dementia and was unable to travel, we just want a simple refund. Lord knows we can use that money towards care now! But the airline is being very difficult about giving him his money back!
OK. Enough venting. I just wanted y'all to know that I am here and get some opinions on these two diseases and issues.
Thanks.
We are struggling to find out way through both diseases now. It seems that there are many times that the ALS and FTD are at odds with each other. For example, he is clearly RAPIDLY losing the ability to use his legs and he needs to be in a wheelchair. But, he does not have the upper body strength to get himself around with a conventional wheelchair but the FTD will prevent him from being able to adequately operate a motorized wheelchair (no depth perception or judgement with the dementia not to mention the inability to learn something new).
All I know is that we are exhausted from trying to juggle it all. And now, we also have an airline that wants us to declare on paper that he is "forever precluded from air travel" to get a refund on a ticket that was to be used for Thanksgiving. Since he moved into the nursing home 7 days earlier due to the falling and the dementia and was unable to travel, we just want a simple refund. Lord knows we can use that money towards care now! But the airline is being very difficult about giving him his money back!
OK. Enough venting. I just wanted y'all to know that I am here and get some opinions on these two diseases and issues.
Thanks.