FTD With ALS Advice

[Lixen]

Hello Tillie and thank you for the welcome . Yes, for a good many (most, probably) the meds work well. I think personality changes do occur, however, and when those changes have a negative impact on personal relationships it is wise to re examine rx protocol. In my case, my PALS developed mania but not crazy mania. I know now his symptoms were that of dopamine seeking behavior. Wanting sex often despite the fact his body wasn't cooperating, online gambling, inappropriate relationships with females, excessive spending, etc. The changes were subtle at first but I found myself in a situation comparable to Lobby's when the lightbulb finally went off. Logically speaking, the behaviors were not consistent with someone who was facing such a devastating disease like ALS. And sadly, most people who experience what we did suffer in silence as they are already covered up in trauma & grief. Psych meds really require close follow up and it's not the type of follow up you find in the average ALS clinic. I'm glad we have drugs like this to help people cope but not everyone responds to them in the same manner.

 

[3Grandboys]

hi everybody! I sure have been grieving each day. I watch my husband (ALS-FTD) struggle each day with the simplest chores. For example, he tries to open the lid on the trash can, struggles for several minutes until I intervene. This was a man who could fix anything, build anything, do anything with his hands. Now his hands and arms are useless. Also, his FTD seems to be increasing as he cries many times each day over anything emotional - good or bad. Every time he tears up, I am so sad to realize how much he has changed. For example, my husband will cry over a silly commercial on tv or that a friend asked how he is or saying good bye to me when i leave the house. I feel heartbreak when he cries. Sadness all around. But able to feel grateful that he is still here and there are some sweet moments….

 

[Nikki J]

Hi Grandboys
So sorry
But what you are describing for the emotions sounds like emotional lability which many with ALS have even without FTD
Read about PBA ( pseudobulbar affect). There is a medication called nuedexta. For my sister it made all the difference to this symptom. If this is what is going on it could make a big difference. Check it out and call your clinic and ask. This one might not be the FTD

 

[affected]

I completely agree with Nikki here.

Emotional lability is very different to FTD, and my Chris had both. Many of the PALS here on this forum have the EL without the FTD.

There are a few forms it takes - laughing at something sad, crying at something funny, or being unable to control laughing or crying once it starts. So hard as often it can happen at social times which makes it embarrassing on top and then only makes it harder to control ...

I so wish Neudexta was available in Australia as I hear so many success stories.

 

[Libbylu]

Thank you Lixen...my PALS not on any antidepressants. I do believe it is either FTD or a mania associated with the fact that he has been on a ventilator for two years. So frustrating to witness the man you fell in love with slowly fade away. Ours is a very unconventional situation in that I cannot live in his "party at the end of his life". Crazy...not at all what I imagined at the end of his life. I thought he would be pulling his family and me closer...how selfish of me to think that, and so sad. What we have is a fractured family with sadness and drama.