Looking for support from others dealing with ALD/AMN

[skirby]

My brother and my mother both began having problems (mostly with walking) around 15 years ago. They were diagnosed with Hereditary Spastic Paraparesis. My brother began to experience many other symptoms and deteriorate rapidly this year. About 6 weeks ago his diagnosis was changed to AMN - Cerebral ALD. He is 46 years old and has 4 children at home. The diagnosis is obviously devastating. Hoping to find others in a similar situation who can provide support and advise.

[COwithAMN Administrator AMN EASIER Volunteer]

This will be a very difficult time for you and your brother. I hope you are receiving support from your local social services. You don’t say where you live or which country. Do let us know since the AMN community is sufficiently large now on AMN Easier that there may be someone near who could meet you for some support.

Cerebral ALD as you will know is serious and can quickly become life-limiting, though not in every instance, as various posts on AMN Easier suggest. Bone marrow treatment is sometimes proposed, but the success rate for adult males is poor.

Also, I wonder if you have been checked for AMN? AMN is passed from mother to son, so you would have a 50% chance of having the defective gene.

I am really sorry not to be able to offer more positive ideas. You are in our thoughts.

Chris

[monkeybus]

skirby

Hello, when you say your brother deteriorated rapidly, can I ask what you mean by this?

What are his symptoms nowadays?

[skirby in reply to monkeybus]

in the last few months he has had to give up his career, driving, and now maybe his family (his wife wants him moved to a nursing facility). He is losing his vision, is beginning dementia, severe mood swings, extreme fatigue, less and less use of his legs (moving to a wheelchair), vertigo, starting to have difficulty with his hands, he has fallen multiple times and cannot get up by himself. He has still not been tested or treated for Addison's. I am hoping that would help with at least some of his symptoms.

I can only imagine what this must be like for him and there seems to be so little I can offer.