ALS and FTD

[Jackfishem]

My mom was diagnosed with FTD in February of 2014. At her neuro appointment in August of this year, the doctor indicated that he believed she was in the middle stage of the disease. At mom's appointment on December 10th, he noticed mom's fingers were bent and that she had dimples between her thumb and index finger. He told me she has MND/ALS and he predicts she'll be with me for only about six months.

Tillie mentioned the faster progression. I do believe that to be true as I have not seen any plateaus with mom over the past few months. Mom had a brother and a nephew who both passed from ALS within a year of diagnosis.

My biggest question is how progression will look. When do I call hospice? When do I stop pursuing potential treatments for her? When will she be bedridden? All the unknowns are terrifying.

Any insights would be appreciated.

 

[affected]

Re: FTD

Predicting progression is the hardest thing with ALS.

Every PALS is different.

There are 'typicals' and my Chris was very typical, but there are so many variations.

Many bulbar move from the top down - tongue, hands and arms, breathing, legs.

It's the breathing and swallowing that are going to be the big issues, but also with FTD the safety is huge. They don't want to believe anything is wrong and will often take many risks. My Chris had awful serious injuries from falling but would refuse to believe he was unsafe and would say it isn't going to take my legs ...

Your clinic will help advise you about when to start hospice as they work with you.

The peg will be your big next decision I think. How is her swallowing? Is she losing weight yet? This is a hard decision as the peg does make things far easier - no choking, can get fluids and meds in. But would she accept the peg and leave it alone? My Chris was fine with that side of things, but he would not take the peg until he was already in starvation mode and he would refuse many feeds and continued losing weight.

Aspiration pneumonia from swallowing issues is the big thing that often takes the final toll on bulbar PALS, especially with FTD. It was how we went into the beginning of the end.

I hope this helps, do ask questions, you need to get your head around big decisions and planning indeed.