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JersKid

New member
Joined
Dec 19, 2009
Messages
1
Reason
Loved one DX
Country
US
State
MI
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.
 

indigosd

Very helpful member
Joined
Jun 22, 2009
Messages
1,784
Reason
Lost a loved one
Diagnosis
07/2009
Country
oz
State
oz
You may want to get in touch with KatieC and shellyand shaggy. Their husbands also have FTD and ALS. So sorry that you are having all these problems. Can you go further up the line with the airlines? Maybe contact Rose-she is our airline woman! Hope today is better for all of you.
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
Country
CA
State
Quebec
Concerning your airline ticket, I would contact the Better Business Bureau if I were you. I had a problem with my cell phone company and as soon as I wrote to the BBB they were more than willing to rectify the situation. You can just go to their web site and type in your letter there. Just stick to the facts, remain as impartial as you can and I am sure you will get a refund.

I am so so sorry to hear of your dad's double whammy of ALS and FTD. Lord knows that each of those is enough to handle on its own. I can't offer you much advice in the way of FTD but my dad was diagnosed with ALS in August 2008 so I know where you are coming from there. Please don't hesitate to ask any questions or lean on us for any support you might need. You just happened to stumble upon an amazing group of people here on the forum. I have truly been continuously blown away by their helpfulness and sheer compassion. I can safely call many of these beautiful people my friends.

My heart goes out to you. Take good care...
Rosella
 

shelleynshaggy

Distinguished member
Joined
Sep 2, 2009
Messages
280
Diagnosis
08/2009
Country
US
State
OH
Welcome to the sight - I am glad you found your way over to us too. I have found both forums very helpful - as you probably have already learned there is a lot of "gray" areas between what is an FTD symptom and what is an ALS symptom - I have gotten great answers and support from both forums.
 

Gelthling

Distinguished member
Joined
Apr 7, 2009
Messages
109
Reason
Loved one DX
Diagnosis
0/2009
Country
AUS
State
NSW
My mum has both FTD and MND, the FTD coming on with diagnosis of the MND. You sound like you know alot about the FTD- we've only been told she has lack of planning and it will get worse, no real indication in what way she is majorly affected. You will get alot of support on these forums.
Best of luck!
 
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