All this week I have been promoting wheelchairs for AMN users. And despite people telling me you guys aren;t against wheelchairs, I definitely feel the stigma. I can only assume anyone who has spoken out not supporting my views hasn;t actually tested a wheelchair and are just speculating. I know my mother was/is heavily against wheelchairs and apparently they are for "quitters". I would like to categorically state again, wheelchairs are just tools for people with legs that don;t work, like us for example. I will pretty much guarantee a wheelchair would improve your life overall and you should at least test one to see what I am talking about. The list of reasons to get one vastly outnumbers the reasons not to get one. The main problem is expense, wheelchairs are expensive but there are plenty of charities/insurances who are there to help people like us. Once you have a chair you would build a whole life around it, mainly as you don;t get much choice.
"Use it or lose it" doesn;t apply to us, as if you are anything like me, you have already lost it, and you aren;t getting it back ever. You are better to accept it and make allowances and get some equipment to help. As always its no skin off my nose what you choose to do, I am just trying to improve everyone's lives.
If you want to live an independent life without people running round after you, then a wheelchair will help you achieve this. There is no harm in testing one, and I would love to hear from anyone who has actually tested one and decided not to get one, that's really interesting.
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LessThanRich
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I think this is another example of "do what works for you". That's awesome if a wheelchair is providing you a better life, really the only thing we can do. While I'm slightly younger, 34, I'm still able to get around quite well with some added orthotic products. The longer the distance, I do become a human pinball where no doubt if I was in a wheelchair, I wouldn't have that problem.
I am enjoying your posts as sometime it gets quiet in here and the more we hear from people, the more I think it helps all of us. Knowledge is definitely power in this!
I suffered walking with AMN for 7 years. I had enough by the time I was 33 (wasn;t diagnosed until 35). It all comes down to how much you rely on others and how much you wanna help yourself. Independence is a really important thing for me, and I hope with all the equipment I have amassed, I am capable of living a normal life without anyone's help. Surely this is what we strive for.
I do have a power chair and also adamant of using what I still have left. Let's all be conscious what AMN Easier is About:
AMN Easier was set up to help men and women who have adrenomyeloneuropathy (AMN) - to help make this disease a bit easier to live with. AMN EASIER provides information and support by (1) providing answers to health questions from AMN patient experts; (2) showing what other AMN patients are doing and thinking; (3) describing ideas and possibilities for therapies that could help.
1) I offered suggestions to equipment to make your life easier
2) I showed you how I try and beat my AMN, successfully for the most part.
3) I gave you lists of kit that could help.
I think I fulfil all your criteria for here. I think what I typed is useful and maybe stuff people haven;t considered for whatever reason. There is a stigma over wheelchairs for some reason and someone needs to break it for the good of everyone. You need to be told and given some tough love sometimes. I'm not sugar-coating AMN, I'm telling you how it is. I might not be a doctor, but I know more than most specialists, I am also capable of applying common sense to overcome any problem. In my experience pros are useless and you are better talking to other informed sufferers.
I’m not against info that can help at all. You’ve actually given me a new light about what life can be using a chair. When my wife started wanting me to use a walker, I was very against it, but I realized to fall or not to fall, was what I needed to worry about it. Through your posts, I’ve decided that a chair would be very useful to me. I’ve got that listed in my list of questions for my neurologist about. Even using a walker leads to fatigue and increased leg pain. It’s not about quitting, it’s about living. And btw, it seems like you’ve got somebody that worries about you and is wanting you to live life to the fullest.
I have been pretty adamant all week I know. However I really do believe in this and I received so much negativity here, from what I can only assume are speculators. I think I got through to a couple of people who will now add a wheelchair to their lives, so jobs a good 'un. I was only just sharing how I deal with AMN and I hope for the most part I got it beat, despite still suffering all the symptoms. I am done now, the info is there for all to see. Good luck and I hope you get a sick chair that turns a corner in your life! Best decision I made in years!
Equinney, wonderful post. It's hard to consider that options are available. I fully understand. First, I was fighting to use a cane and then when I attended an "Ability Expo" and borrowed a scooter on loan, well, that opened up opportunities and it planted the seed which flourished to realization that the time is now. I was motivated and purchased my chair. However, I still continue to walk and be mobile as much as I can.
People don;t like being told they are handicapped. I know I didn;t. But this happens everyday. You need to accept it and get things to make your life easier. Read my post "How to beat AMN" for more ideas.
I like walking. It's really hard but there is no better exercise for me and as I get warmed up I get better and it gets easier. Sure, I fall occasionally but I am so used to that I usually know when it's going to happen and rarely get more than a graze, if that. And the endorphins are awesome. I'd have to spend a couple of hours all in going to and from and in a gym to get the same kind of work out that I get outside my front door in 20-40 minutes.
In more technical situations such as bars, restaurants, theatres, etc, I use poles to make me less of a liability. The only times I've used a wheelchair are in airports where I go through security, etc, but I prefer to be active because I find sitting down all the times makes my legs weaker and less prepared for standing up and walking around. For sure it's a choice and I am sure a psychologist would have a great time looking into my various obsessions, especially walking and keeping active, but it works for me and I won't change until I have to.
If I'd had a skiing accident and ended up like this overnight, no doubt I'd be a wheelchair, but I've been on a downward trajectory for more than 15 years and like a frog in hot water, you learn to adjust to the changed circumstances. Human nature...
You have been lucky so far! One time I got 7 stitches in my leg at work because of a fall. That prompted me to get a wheelchair. My legs still have cuts and bruised all over them despite using a wheelchair.
Seriously hats off to you for keeping at it. I just refuse to suffer when there is no need.
I highly recommend mod4all. Post from the UK, and they have never ripped me off. Five years now, I have been buying from them/him/her. Whoever runs it is as sick as us. One of us, hat site is more like a coop.
4-AP really helps me walk. Pure magic, the best spasticity medicine around. So widely used by MS sufferers. I couldn't imagine life without it.
4-AP-3-MeOH Now, this is what I'm talking about. The next generation of spasticity medication. 10% of the dose of 4-AP, and it is amazing. Jump, hop, I can even do a little jig. Expensive. I like it. I have read how it helps people with spinal cord injuries to walk (sort of), wriggle their toes, feel less pain.
Lovely. Glide along, fold it up, jump on the train (perhaps not jump).
Airports, I book the wheelchair. Have you seen Hong Kong airport? It is like a city, huge. And Heathrow. Sod that.
Wheelchair means you jump all the queues, board early, preferential seating, and you jump the immigration, minimal chance of getting searched, and they'll push you right to the train.
I would get my own chair if I had to. And I'd get a really decent on, but for now, I'll rely on my crutches -
Surely the best crutches in the world. Padded grips, double shock absorbers, a horn and lights (really!). Zero impact strain on your wrists. Can really go long distances. And they look good, none of the crap, cheap sticks from the hospital vibe coming off them.
That's my contribution. Whatever gets you out and about.
Depression.
Stress.
Fatigue.
Spasticity.
Neuropathic pain.
Wetting yourself.
Messing yourself.
Cannot urinate.
Constipation.
Brain lesions.
Addissons.
Cerebral involvement.
Death.
Have I left anything out? Not just walking, we got a lot on our collective plates. I haven't given up yet, I hope you are all well, spring coming up, out and about, however you choose to go. Legs, wheels, whatever.
I'm not comfortable using medication. It honestly sounds like wheelchair and cannabis do the same job. Of course I realise there are so many more problems than just disfunctioning legs. But I am simply addressing walking, where many, if not most, of the problems stem from. I wanna say I have zero toilet issues cos of my wheelchair. Fatigue, spasms, spasticity and neurological pain are obviously helped by literally taking a load off.
Its not just wheelchair you need. Car with hand controls, electric gates, shower and bathroom adaptions and more. Wheelchair is the most important though.
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Newly diagnosed AMN woman w/AMN son looking for diet/oil advice and experiences. 
