Anyone have both ALS and Alzheimers?

[relative123]

I have a relative that has been diagnosed with BOTH ALS and Alzheimers. Talk about a double whammy.

The care coordinator said she has only seen one other patient in her 35 years that had both diseases.

Does anyone here have both, or know of someone that did?

 

[Nikki J]

Dementia and ALS together are unfortunately quite common. It is generally FTD and ALS. My mom originally was diagnosed with Alzheimer's with frontal lobe involvement. The ALS symptoms came after. The care coordinator never saw dementia and ALS? Or the label Alzheimer's plus ALS? We have a section on the forum for FTD. Have a look and see if it sounds familiar

 

[nebrhahe53]

I wonder if this isnt a mercy for those people, not the caregivers of course. At least they dont have to know whats in front of them.

 

[Nikki J]

I have seen it Neil. It is torture beyond belief for both CALS and PALS. Horrible as either is separately it is multiplied when the 2 occur together. ( my family has seen all the combinations)

 

[Clearwater AL]

Because of the slow progression of Alzheimers, those in the early stages (who have been diagnosed then) are well aware of their future. It often generates fear, depression, anger, tears, sadness, thoughts of suicide and a turmoil of emotions. It's as horrible as ALS. To have both... no words.

 

[nebrhahe53]

For the caregivers yes this is horrible, for me, I wish I had Alzheimer's with the ALS. Then I would forget what's in store for me and probably not be so scared.

 

[nebrhahe53]

Never mind I answered this already- maybe I am getting alzheimers

 

[GregK]

... Just don't answer a third time. ;^)

 

[relative123]

Thank you everyone.

He was diagnosed with ALS before the Alzheimer's really took hold, so he does know and understand what is happening to him. It's so unfair to be this unlucky and have both conditions.

 

[affected]

Is it Alzheimers or FTD?

Sometimes that diagnosis gets confused by relatives who assume the word dementia means Alzheimers, and sometimes it is misdiagnosed by the docs

It is rare to both these diseases, but very common to have FTD involvement.

What are the dementia symptoms?

 

[relative123]

Hi, it was officially diagnosed as Alzheimers. He's seen a couple of different neurologists who confirmed the diagnosis based on MRIs. He's starting to have more hallucinations and paranoia (he thinks he sees monsters and dinosaurs in the trees in the backyard). He's also losing interest in eating, bathing, sleeps almost all day. It's really sad.