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mariasb

New member
Joined
Apr 8, 2013
Messages
9
Reason
CALS
Diagnosis
11/2012
Country
US
State
MI
City
Plymouth
My husband is 52 and was diagnosed with ALS 11/12, however, he had physical symptoms since 1/12. He is becoming more and more compulsive and also very child-like sometimes. The tantrums are ridiculous as he screams in this high pitch tone that I have never heard out of him until recently. I used to cave in and do what he needed but feel I am just adding to the problem since it is usually over something he is compulsive about. He has also started with panic attacks. That I totally understand that and the doctor has prescribed an anti-depressant, anti - anxiety med. It is so hard to deal with all that is going on as I was fired from my job f 5 years last week. No warnings, no negative comments on my work and no bad reviews. They hired someone half my age to replace me and probably paying her half what I was making. Sometimes I wonder how people can live with themselves a they know the huge issue at home but it's all about the business. What I have been realizing lately is that my kids and I were noticing cognitive issues about a year before he physical symptoms stated. His mom had cognitive issues for years and dementia by the timed she passed away. Is there a way to determine if this is FTD due to ALS or something different? In addition, the sleeping at night is really, really bad which makes my husband worse during the day. Thanks for listening.:confused:
 
Sorry for all you go through. Need to ask your neuro re diagnosis. If there are things you do not want to say in front of your husband send an email or letter ahead of appointment. With the dementia in his mom ask if he should be tested for gene defects if he has not already. C9orf72 is notorious for causing dementia / FTD with and without ALS
Good luck
Nikki
 
I often told people living with Glen was like living with a 6 foot tall toddler. With no impulse control or empathy, you have to be on it every second to keep them safe. One thing that helped a LOT was when the doctors added an anti-psychotic medication along with the depression and anxiety meds. Actually the anti-anxiety and anti-psychotic combo turned out to be reasonably effective with or without the depression meds. The neurologist sent us to a psychiatrist who specialized in neurological disorders who figured out the right combo of medications. Yes, it made him a little sleepier, but that was better than having him wander off in search of people who didn't exist.
 
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