You don’t need to thank us for accepting you into this group. we are so glad you found us. We are here expressly to help men and women with AMN to make their lives better and to find ways of coping with the problems that AMN creates.
On a personal note, you ask if many people with AMN live past the age of 70. Well, if I may put my hand up, I am 77! I was diagnosed in my early ‘40s so I am rapidly getting to the age where I have had the disease for more than half my life!
The fact is, there are no hard and fast rules about AMN and its progression. Some of us progress faster than others. Most men seem to have adrenal involvement, but not all - I am one such.
When I was first diagnosed I carried on as normal. Eventually, I needed a walking stick, then two. Problems with bladder leakage came on quite early. And spasticity and issues of balance gradually got worse.
Now, I need an electric mobility scooter to get around outside; in the house, I can shuffle around on a walking frame.
So you need to focus on what you can do, not what you can’t. Keep doing stretching - which is perhaps the most important thing to do physically. Leg muscles and joints get progressively unwilling to bend and stretch and you need to slowly coax them to do this every day. I do a stretch routine for this every morning once I am up and have done so for many years.
On another personal note, although I live in London (UK) now, I lived in Canada for 15 years in the ‘70s and ‘80s - in Kingston, Ont. and in Toronto. Where are you located?
It’s not acceptable that you have never had an MRI. You need to push the system to get this. We have I think a couple of people of this forum from Canada, one in Toronto, so maybe they can chip in with some advice about MRIs.
I am very sorry to hear about your brother. But I would not take any message from this. As I said earlier, we all, have to live with the uncertainty about how the disease will progress in our particular case.
This is the forum where you can find many men who can give you support and hope. It can’t be easy coping on our own but you are doing very well to cope independently. Don’t give up hope. I understand about being scared, but there can be a satisfying life for many years with AMN.
Chris is right. You cannot compare yourself to your brother. We all have our own unique AMN journey. I am 58 (diagnosed at 37) and was recently diagnosed with cerebral ALD. Like others, I thought the older I get, the less likely I would progress. I was participating in a clinical trial and they caught the lesions before any symptoms! That is why, it's imperative to get an annual MRI. And this community is a godsend! We all are connected and support each other. Keep active and never give up. Personally, I love to challenge myself and it gives me great satisfaction. My disease is not my identity. Stubbornness and laughter helps, too!
I do not call that Cerebral AMN. AMN only affects the spinal cord and the peripheral nerves. You should call it AMN with cerebral ALD or Adult cerebral ALD. Your symptoms of AMN started when you were 24? I started to have symptoms when I was 19 with walking issues and 20 with adrenal crisis, urine incontinence, and walking issues.
When you were younger, you wanted to marry and have children or you just gave up on that when you were younger? I want to marry, but I will struggle to maintain a wife and children in the future because of my genetic disorder.
When I was younger, I thought it was best not to marry because I was concerned about future disability. At the time, the prospect of treatment was much dimmer than today
I think more people are simply getting properly diagnosed nowadays as well. A decent rule of thumb is if it gives you Alzheimers, it likely ain't a good idea to go doing it.
Get a decent night's sleep, go easy on the trans-fats, don't go hammering your brain with the booze and drugs, exercise, and all that.
There are proven neuroprotective drugs as well. Modafinil for one. I read about high dose Baclofen as well.
Maybe it's just a slow, inexorable slide. I have three lesions. I fully expect more.
Hello, Henry. I am 71 years old. I was diagnosed with Addison's Disease at age 41. I began feeling neuropathy in my feet at age 48. My AMN was not diagnosed until I was 58 (finally got with the right neurologist). I took part in the adult Lorenzo's Oil study at the Kennedy Krieger Institute immediately after finding out I had AMN. This study didn't result in lessening the effects of AMN, but it did result in educating me about this disease and stressed the importance of regular cranial MRI's (as stressed previously by SongStream!).
I am very close to using a wheelchair full-time but I continue to exercise regularly (swimming is great!).
I am glad you found this group, there is a wealth of knowledge and experience here.
I agree with all that Chris said above. I am nearly 76 and was diagnosed with AMN at about 55. I am fine apart from my walking. I can walk very slowly with a four wheeled walker and also have a small electric scooter which I am starting to use more frequently. I have a female cousin who is 78 and she is also well apart from very poor mobility. Keep smiling, you will learn to live with it.
At about 50 I first noticed slight walking problems. The doctors couldn't figure out the problem. I then guessed it may be the same as my older cousin, I had an MRI scan and this confirmed it was the start of AMN. Since then it has progressed very slowly. I first used a walking stick (cane) at about 60, two sticks a few years later, then used a 4 wheeled walker at about 68. That's about all I can say.
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