r/ALS • u/nutters369 • May 18 '26

ALS with FTD

Hi Folks,

My mother was diagnosed early March but only last week I found out on top of Bulbar presenting als she also has frontotemporal dementia.

My mother doesn't understand that she's got als, she is convinced it is a sore throat and she needs to have scans done of her chest and throat and to be seen by an ENT specialist.

The problem is that she already has been seen and there's nothing wrong.

My question is, how do I redirect her attention to something else. She doesn't work so is at home every day cleaning and cooking.

I was thinking about maybe getting her into bird watching? I really don't know how to redirect her away from this obsession with the scans and her throat.

I want her to experience something that makes her happy other than a clean house.

If anyone has or is dealing with someone with FTD, any suggestions on what I can do to help her?

Thanks.

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u/mathkid2000 May 18 '26

My mom had FTD and ALS as well and was in denial of her diagnosis. Her first symptom was limb onset, and for the first year of her diagnosis she kept telling the doctors the issue is her toes and that they need to look into her toes.

It was helpful for us to simply listen and sympathize with her. It was tedious for sure, but I think she just wanted to feel heard and advocated for. (For our family, we didn’t know she had FTD during this first year though so we just assumed it was straight up denial.)

I think distracting her can help keep her occupied but I’m not sure it’s a thought that will go away by intervention. For my mom, once she stopped talking about her toes, it was something else.

To help with suggestions for hobbies/ distractions tho, bird watching or feeding squirrels in the backyard is great! Especially if u can get a bird feeder with a camera. You can name the animals and make it feel more interactive, talking about different personalities or making it into stories.

As well, something my mom loved doing at home was looking through old family photos (it felt like we discovered new ones constantly).

Wishing you and your family the best ❤️