0 Recommendations
I'm 44 years old and using a cane. my brother died when he was 51 as it turned into ALD. if anyone wants to talk, just jump right in.
God bless you all.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Living with AMN
- By Pio
- Posted May 17, 2008 at 11:52 am · 5 replies
- In Adrenomyeloneuropathy (AMN)
- Shared with the public
Explore topics in this discussion:
5 replies
- Oldest first
- Newest first
- By wenALD
- Posted May 17, 2008 at 8:45 pm
- Report post
My son is 33 years old. He was diagnosed with ALD when he was 12. At the time it showed brain involvement and I was told I was in for the "worst 6 months of my life." Well he was in special education for the rest of his school career. He graduated and began a job as a warehouseman.
He still has the job, but I believe that is tenuous. He drinks himself into oblivion every weekend and on all his vacations. He no longer can carry on a conversation. He has no friends. We are afraid to leave him alone. He was evicted from his last apartment, burning pizza in the oven and being passed out in his bedroom.(drunk) He often leaves the stove on, the front door open, etc.
My other son is 28 and starting to have major balance problems, and his leg twitches. He is also dizzy alot. He does not have brain damage.
I am symptomatic and use a walker!
I certainly hope your brother's premature death does not worry you unnecessarily. I give thanks that at least I can still get around. I also still teach middle school . I am 58.
I wish you the very best. God is really Good. I know that we will spend eternity with him if we know and believe in Jesus as Lord. That keeps me going on a day-to-day basis.
- By sgtkimsmom
- Posted June 21, 2008 at 6:48 am
- Report post
I guess I would kinda like to talk about AMN and the progression as it struck your brother. My husband has had AMN for almost 30 years and it comes and goes at will. Currently it is active in a new way and we will be going to the conference in July to see if anything is new since the last conference we attended in 2000. Will you be attending?
- By Pio
- Posted June 22, 2008 at 1:19 pm
- Report post
my brother used a cane by his mid 20s. he was in a chair in his early 30s and he always had a very unique personality and never had good fine motor skills with his fingers. he never had mri done but i suspect that he had some cerebral involvement for years. at 50, it started taking his arms and his demeanor changed. within a year he was bedridden.
we are fortunate as he barely drank and i gave it up entirely years ago.
i never notice much in the way of changes for either of us. it just seems to slowly but surely progress.
for inspiration, read the first few verses of John chapter 9. it's very powerful.
God bless.
- By Banks
- Posted December 2, 2008 at 4:20 pm
- Report post
My parents began to realize I had learning disabilities at 2 years old. This was not a big problem at our house. I was strong, healthy and super active, growing up with my mom and 2 year younger brother.
My mom assured me that I would always do well in life as long as I was willing physically to work hard at whatever I enjoyed. I liked working outside and got a job with a lawn maintaince company. I learned to make a home lawn or business grounds look as good as any professional. I made good money at this for 2 years but at the age of 18 I had a small crash on my dirtbike and bumped my head. It should have been no big deal but it left me like someone who has had a terrible stroke, including losing all sense of balance.
I am 24 now and my learning disability together with little control of my right side and unable to even stand alone has left me in a bad way. (by the way, I have my brother typing this for me incase you wondered) I am new to this web site and it worries me when I read about people with AMN dying. I am hoping stem cells will one day help me repair the dead white matter in my brain. I heard that on Nov. 17, brain tissue was grown from stem cells for the very 1st time.
- By jwh80
- Posted April 1, 2009 at 7:59 pm
- Report post
Hey, my name is Jason. I was diagnosed with ALD in'89 when I was 9. They told me that I had 2 years to live. I am now 29 with AMN. I haven't worked in almost 3 years becauce of my syptoms. I was married, but when this started she just couldn't handle it. One of my symtoms I really need some advise on. I don't like to talk about it, but I need some advise. That is bowel control. It started about a year ago and had just gotton worse. Let me know if you know of anything.
Add to the discussion