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Adrenoleukodystrophy (ALD) Online Support Group

Not doing very well here


#1

As previously posted, my son now 31 was diagnosed at age 29 with ALD. He is getting worse each week. Dementia, becoming verbally violent, refuses to eat, loosing weight. We have to bathe him, tell him to use the bathroom, dress him. His brain doesn't tell him he is hungry or that he needs to use the toilet. Doesnt remember anything. What worries me is that my wife and I are in our sixties and dont know what the future holds for him or us. Doctor tells us that if he gets a high fever he is to be rushed to a hosptial asap since it could be life threatening.

Anyway, its a constant 24 hour a day, 7 day a week hell, watching him deteriorate and what it is doing to our family every day.

Sorry to rant, thanks for the ears


#2

You are welcome to rant here, jaytone. This is a good, safe place to vent and share your worries. People here understand, and whether they say say so or they are momentarily silent, they sympathize with you and wish you strength in your labour of parental love. Sincerely,

Seenie from Moderator Support.


#3

(This is my first post, so not sure if I’m doing it right). My wife and I sympathize with your distress, and share it jaytone. Our son is 37. He was diagnosed w/ALD @ age 9, but developed AMN symptoms and declared physically disabled in his 20’s. By his 30’s he developed ALD symptoms on MRI, requiring a stem cell transplant. His 1st transplant failed, but his 2nd succeeded. Sadly, each transplant worsened his condition and he is now cognitively impaired. He is often infected (18 ER visits in 16 months) and he refused to remain hospitalized, so we were granted custody. His health requires skilled nursing, but he hates the facility so much he’s verbally abusive to his mother often hourly, insists we “let him go home” (we can’t) and blames us for his problems. I’m 81 and my wife is 70, and we have no idea who will care for his needs when we’re gone. We’re about two years into this, and suspect that this adventure will require the rest of our lives.


#4

Welcome to the ALD forum, csmith, and thank you on behalf of @jaytone and everyone here for your contribution. You, like all parents and caregivers here, carry a very heavy burden and Ben’s Friends is pleased to provide a place to share, to rant, to unload, to encourage and to empathize.

Thank you for sharing your experiences and your thoughts. This is a very quiet forum: I suspect that the emotional and the practical load of caring for a family member or a friend with this condition often leaves little time or mental energy to post. When people do, though, I know the contributions are appreciated, whether that is verbalized or not.

All the best to you and your son in your efforts for quality of life in your family.

Seenie from Moderator Support

PS Absolutely, csmith, you posted correctly!