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Lscott71

Active member
Joined
Aug 22, 2017
Messages
57
Reason
CALS
Diagnosis
05/2017
Country
US
State
Texas
City
Fort Worth
My PALS was diagnosed in May with ALS and FTD. Our family I had just been trying to digest the news. We’ve known something was wrong since the beginning of last year. The FTD started first and he didn’t get any physical symptoms until around Christmas when he started choking on liquids every once in while.

PBA started in January, fasiculations in February, slurred speech in March. Still never even suspected ALS until about a week before we went to the neurologist, but I still didn’t really think it could be it because he didn’t have muscle weakness.

Now he has some atrophy and weakness mainly in his arms. His biggest areas of concern are choking, swallowing, and breathing.

Thanks for listening!
Luanne
 
So sorry to hear about your PALS dx. You have found a great place for information and support. My PALS has Bulbar Onset ALS and FTD. He was diagnosed in Oct '15.
 
So very sorry for this diagnosis - my husband was bulbar onset with FTD also.

Your PALS did have weakness - he was choking because of weakness, but it might not be thought the same was as being unable to walk or pick something up.

You will get loads of support here xxx
 
Welcome, Luanne, sorry you have a need to be here. Is a feeding tube being discussed?

Best,
Laurie
 
Yes, he did discuss the feeding tube today. He’s still good with solid food. It’s the liquids and mixed textures like cereal that he has issues with. We’re trying the thickener for now.
 
Sorry to welcome you here, my husband was in the same boat. Hope we can all be of help during this journey.
 
Hi Luanne, welcome aboard, this is not the ship you choose but you are here now and we are all sorry to meet you but so be it. Your husbands condition sounds the same as mine. The tube was a great help because you can eat your foods in a normal way and the take your liquids by tube, and the liquids are as important as food. I was lucky, after about two years and with daily practice I learned to eat and drink again. I have no problem now drinking a four ounce glass of water now, but I don't know how long this ability will last, but right now it is good.
Luanne I certainly do want to give you the wrong impression and cause you to think this will happen for you husband but without the tube you will not know. I still have all the other skills of ALS I can not talk, I use a wheel chair or a walker, my left arm and hand are week, but now I can eat and drink normally don't ask me how, I don't know.
Al
 
Wow, that’s great, Al! I know that’s not the norm for most ALS patients.

Feeding tube may be the way to go for him since he’s refusing to use the thickener.
 
The earlier you can get that tube in and get him adjusted the better, because especially with FTD a lot of issues surrounding getting enough calories in can come up.

Dehydration will exacerbate all FTD symptoms and so often PALS become dehydrated because of the issues swallowing thin liquids.
 
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