Totally different person

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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 has ALS and I am his caregiver. This is very sad because I feel that I have already mourned the loss of my husband even though he is still living. He is not at all the same person that he was before ALS. We truly believe that he must have some brain involvement and dementia but would like to know for sure. I have mentioned this to the clinic where he is seen and they do not seemed very concerned. Are there any tests that can be conducted to see if there is dementia or something else going on? My husband acts more like a child than an adult at times.
 
The standard belief about ALS used to be that there was no cognitive involvement. Then Dr Catherine Loemen Hoerth at UC San Francisco began studying it in depth and the current understanding is that as many as 50 percent of PALS may have some level of cognitive involvement, ranging from mild personality change to full blown FrontoTemporal Dementia. We were lucky... Dr Loemen Hoerth actually did Glen's evaluation. Sadly, many neurologists are just not caught up with current science and still spout the "no cognitive involvement". Insist on a cognitive evaluation. If you have to, print out information on FTD and bring it with you. If you go to the FTD section of these forums, you'll find a wealth of information, and many links to help you. This is NOT your imagination... and yes, I used to tell people it was like living with a 6 foot tall toddler. Hang in there!
 
I am convinced my husbands thought processing has been affected,the neuroligist have blown it off but he is not the same person at all..without getting into a page long description all i ca say is he is a very,angry resentful man who at one time thought his family was everything,now he doent care and can be extremly to all of us...most of the time..not at all interested in knowing any finciancial detail of the household as well...thats really not him!
 
To those who get blown off by their neurologists... once this has gotten past moderation... PLEASE go to the following webpage: What is Frontotemporal Dementia?

If you find yourself reading it thinking YES! Thank you... that's US! as I did... please print it out and bring it to your neurologist with the areas that match what you're going through highlighted. When dealing with ALS/FTD you MUST be your PALS advocate because frequently you are going to know more about the changes and symptoms than your health care provider. It took almost 3 years to get Glen's FTD diagnosed... I was brushed off and insulted by various providers, including a psychologist that told me my son and I were just overpowering Glen with our strong personalities and that's why he'd stopped speaking.
 
It doesn't take a neuro to evaluate/write for dementia. Internist, GP, FP, psychiatrist, physiatrist, PA, NP, whoever you have access to and confidence in.
 
Yes of course there are a lot of tests of this disease. Because symptoms of ALS can be similar to those of a wide variety of other, more treatable diseases or disorders, appropriate tests must be conducted to exclude the possibility of that particular type disease. One of these tests is electrocardiography EMG, a special recording technique that detects electrical activity in muscles.
 
Maria,
I so identify with your predicament. I felt also that I lost my wife at least a year before she died. She would watch tv with this dull look on her face, when at one time she would be quite animated. Was very testy and totally a slave to OCD. Said things to me she never would have had she not had her mind affected. I tried for months to believe it was just lack of comfort that caused this, but finally concluded that she had undergone and was undergoing a profound personality change. Please step back as a caregiver and take a breath. Also just love him. Love does conquer all. Before you say something ugly to him, and you probably have been vexed to do that already, those words will haunt you when he is gone. You think this problem will always be with you, but you are wrong. Just when I was hoping that my wife would pull out of it, she died. ALS is not a forever thing. Just hang on to the good. This too shall pass. Make sure it does with no regrets.
 
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