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Adrenoleukodystrophy (ALD) Online Support Group

How to handle the news

After years of my son being treated by a psychiatrist, turns out it is not a psychiatric problem but ALD. Found out when it was suggested to have him tested since he is losing his memory. He is 30 years old. Came back positive for ALD. Each day is getting worse. He can't remember what he did 5 minutes ago. I know very little about ALD except for what I read on the internet. Obviously not good. What bothers me the most is that since he was 14 he was being treated as a mental disorder but never showed any symptoms of ALD. We were told by the doctor that we should meet with an attorney and have paperwork done so we will be able to make medical decisions for him. Hard to handle. He doesnt know the diagnosis.

I am very sorry, jaytone. I imagine ALD must often be undiagnosed or misdiagnosed. Is your son living with you?

Yes

It must be difficult hiding your son's condition from him. I don't think there is any blueprint for what is wrong or right in a unique situation like yours. You just do the best you can and leave no stone unturned seeking advice for things that may help prevent further deterioration. I hope our members have some ideas for you.

One suggestion I would have: whatever he loves and takes pleasure in, do that. Places, people, activities. Make some happy memories.

Hi Jaytone. I know this must be hard for you and your son. Even though his memory is affected he would still have a sense that something is wrong. I found that the internet was mostly negative and worst case scenarios. I got more positive feed back from doctors. We dealt with mostly neurology and genetics. I asked a lot of questions. For me knowledge was power. It also helped to keep a day to day journal. Partly as a point of reference so together with the professionals you can help determine how best to help your son. Thank you for sharing your story. We are all here to support each other. Please keep us posted. Take care :slight_smile:
Tracey

I am very sorry for this but yes you need to get guardianship very quickly before he is completely dependant. there is a group on facebook called ALD Support. lots of us with this diagnosis, all ages. feel free to join us

oh there are two families on our FB group who have sons in their 30s and one of them is actually 48. yes they are both full dependant but both are stable. thing with this condition is the worst form strikes young boys. youre already past that. stay positive, dont ignore worst case scenario information because who knows what road your family will take and you should be educated and prepared to face whatever comes along. arming yourself with the information of how it may progress, or not progress, and what you will be dealing with, will help you cope if and when it happens.

please join the facebook group. there are several moms on there with adult ALD onset. Mine is only 14 and had a transplant age 8 but its total care, although very happy and some verbal sounds and maybe some vision in one eye. its been a wild ride. these other moms can really give you some good positive support and good information.

Can you give me the link to the FB page ?

Thank you

And, kerry, perhaps you could also post about this network on the FB page? This site has certain advantages, such as the search box and archived discussions, that FB doesn't have.

Does anyone know if Social Security considers ALD as a disablity for purpose of benefits for social security and medicaid ?

Thanks

I’ve been told social security does accept Ald, even prior to nah symptoms.

social security should recognize ALD as a disability so that your son can get bennifits, as well as medicaid, however, each state is different. So you may have to fight depending on where you live.

Hi, My son had it back in 1993 and I was tested as a carrier then and came back negative. I have been having trouble walking and they tested me again and this time it came back positive. I have just been approved at the first of the year for Social Security so I know they will approve your Son. My heart so out to you and your Son!! Hugs,Connie