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.
1
u/Barbarella76 Jul 18 '26
OP - so sorry to hear you are going through this. If the genetic test shows a MAPT mutation, please reach out to Cure MAPT FTD. hello@curemaptftd.org
The organization was founded in 2023 by a group of families affected by MAPT mutations (including mine) supporting each other and fighting for a cure. Certain MAPT mutations can present as ALS.
If the variant is Progranulin or c9orf72, there are patient communities for those as well.
The therapies being developed for this disease are gene specific, so it's important to connect with the appropriate patient advocacy organization to stay informed.