Men with AMN

[StevenMincey]

I have a few questions for the men in this community who have AMN.

-What is your age?

-At what age were you when you began experiencing a difference in your walking?

-At what age did you start using walking assistance? (walker, cane, etc.)

-What was your lifestyle like before and during these transitions? (for instance, did you exercise, what was your diet like, did you drink and/or smoke, etc.)

I'm just trying to get a grasp on how these variables differ from one man to another. Here are the answers about my brother and I...

My brother-

-He is 39 years old

-He noticed a difference in his walking in his early 20's(maybe 22-23)

-He began using a cane at around 25(he currently uses a wheelchair)

-Prior and during these transitions he did not exercise, he had a moderate to poor diet, he smoked cigarettes regularly, and he drank alcohol not very often.

Myself-

-I am 29 years old

-I noticed a difference in my walking at 22 years old

-I do not use any walking assistance

-Prior and during these transitions I work out regularly, I have a fairly healthy diet(I don't eat any sweets and focus on veggies and lean meats), I've never smoked cigarettes but I did drink alcohol frequently in my early 20s.

Your responses are greatly appreciated.

[daviddmarsh]

I'm David, 53. I seem to have the spinal form of AMN so doesn't affect brain/not fatal (as opposed to brain AMN). Mild symptoms in 30's - still tripping. Still played volleyball, hiked, jogged, swing danced. In early 40's more evident - couldn't jog as fast or far, couldn't jump or move quickly in volleyball. In late 40's, after a couple of falls and one broken finger, started w/ cane. Now use cane and if any distance, I use two walking sticks b/c helps balance better. Had some bad lower back pain when the walking got bad, but use back brace and seems to have subsided for most part. Always went to gym and still do (weekends). Taking Pilates and PT at home from neurologist who specializes in neurological dysfunction. While not improving, the degeneration seems to have slowed. A friend recommended amypyrin (sp?) recently. Tried but hasn't helped me. Take clonozapem at night for spasms - seems to help somewhat. Take Vesicare for urine frequency (down from 15x day to 10x day and sometimes get through whole night w/out having to get up). I'm a lawyer who works in court daily. I hobble around and barely get by but gotta keep working and mostly still like it. Married w/ 10 year old son. Sad that I can't play w/ him, but in this lousy computer age, he's not much for sports anyways. I don't drink much, never did. Eat decently but don't go to big effort for healthy stuff. 5'8", 152 lbs so still lean. Tried getting botox shots in shins - didn't work. Tried the baclofen pump - didn't work. There is a Pod Cast Tuesday, June 2, for AMN. I signed up for.

[julie_ in reply to daviddmarsh]

David, could you share the podcast info?

[ashleyt]

Hi Steven,

These are the answers from my husband, Ben:

- 31 years old

- first experienced noticeable difficulties at 26. His gait was unsteady only after alcohol consumption.

- has used a cane for just about a year (29/30), but not every day

- Ben is a smoker and has been since 16. He tries to work out when he finds the time/energy (usually swimming for an hour) and notices great benefits when he does. He does drink (wine with our meals) but not like he did in his early 20s. His diet is decent - no processed foods (but we could always do with less butter!).

[julie_]

These answers are of my brother. I don't have more exact age ranges though.

- Began noticing balance issues while running or biking in his early 20s, around the time of his discharge from US army;

- For next 10 years, progressively albeit slowly developed difficulties while running, biking. Had balance issues, some pain, restricted range of mobility;

- Had an accident at work (IT) when he tripped over some tools that contractors left and a computer monitor fell on his ankle. His ankle never healed properly and has been walking with a cane ever since.

- He and I were diagnosed together in 2011, when I began experiencing spasms and tripping

- Now, in 2015, he is going to be 47 and has great difficulty getting around. He stopped working out some years ago because he is in too much pain.

I believe that because he went undiagnosed for a decade, his condition is much worse than it ought to be. It is always recommended that we stay as active as possible. I am not a man, but I can feel a great deficit if I do not work out/stretch/do physical therapy for even one day.

[COwithAMN Administrator AMN EASIER Volunteer]

Hello everyone

Thanks Steven for posting an interesting question. And thanks to all of you for your detailed replies.

As many of you here know, I have had AMN for around 30 years - I am 72 this summer, and first noticed symptoms in my early 40s.

I have met and talked to many AMN men over the years, and the experiences you report here are very typical.

I am not sure if you have all noticed, but there are a set of polls on AMN Easier than can also shed light on what's typical.

healthunlocked.com/amneasie...

However, with over 400 members, it seems that not everyone fills in the polls. So, for example, the poll on "What type of AMN symptoms do you have?" has had 53 voters, but "what age did your symptoms first become noticeable" has only had 20 voters.

It would be good if all AMN's on AMN Easier filled in the polls that relate to them. Polls are good, because you can take the result to your physician as some evidence that may even be better than what they have!. Of course we can't claim it to be statistically accurate but it's better than nothing.

If you have ideas for new polls, do let me know.

The other thing I'd be most grateful for is if I could persuade more members to complete their profiles. This helps other new members get an idea of the type of information that Steven is seeking. Remember that profiles are only visible to members, not the general public. And please say where you live - the city or region, not your address obviously. This means other members can contact you through an internal message so we can share our experiences and ideas.

All the best everyone,

Chris

[jrod]

Hi Steven this is from my husband...

He is 47yrs old. He said he first noticed his symptoms in his early 20's but went undiagnosed for about 10yrs. He had smoked cigarettes but quit when our 15yr old daughter was born. He is a moderate beer drinker. He does not exercise but still stays active working on houses. He now uses a helper while working, because he can no longer climb ladders or walk on a roof. He tries to continue to walk without any assistance. But on occasion does use a shopping cart for assistance while in the local Walmart. He sees a local Neurologist in Gainesville but he doesn't seem to have any positive solutions to AMN. My husband presently stumbles. His gait is always bad. His advice is like most others...Stay active.

[StevenMincey]

These are great answers. I know that staying active, especially exercise, benefits us greatly. The one thing I'm actually very interested in is diet. What are people eating and is it helping with their daily lives. I know people are different and something like pain can be very subjective, but anything that could help is great. I know we wont have a cure for this, but perhaps having just the right ratio of exercise and nutrition could at least slow down the ware and tear on the body.