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Adrenoleukodystrophy (ALD) Online Support Group

So, what should I expect next


#1

My 30 year old son diagnosed 2 years ago with ALD. Last year has seen a rapid decline in his health. Right now he has dementia. Doesn't eat, doesn't know to use the bathroom and cant remember from one second to the next. Puts on different shoes, puts garage in the refrigerator, on and on. Right now I have to bath him and clean him after he uses the bathroom. Has constant mood swings, talks to himself and laughs out laud for no apparent reason. He cant be left alone for even an minute.

I know what the outcome is going to be, but what should I expect next. Cant afford to hire anyone, so I have to take him to work with me. Just don't know what the next symptom will be. Any info would be greatly appreciated.


#2

I'm sorry to hear about your son's condition, jaytone. Please check with family services in your area, as it seems to me that taking your son to work with you is not a long-term solution. You will need some support, and it is better to set it up now before you are worn out. Please keep us posted.


#3

Also, jaytone, you may wish to join our Caregiver Support Community. There is a link to it on the Communities List on the Main Page.