LessThanRich

ALD Life proposed I come here as it is a support group for people with AMN. Being a severe sufferer for almost 10 years I jumped at the chance to share my story and necessary things to get by. I was stuck in my own head with very little specific support for years, only now I found people who "supposedly" understand me. Whether you agree or not my posts are spot on and pure reality, a reality everyone should consider becoming a reality themselves as AMN is a progressive disease. In comments below people belittled my problems leading me to tell them where to go. For this I received a lifetime ban with no warning. I don't know if you are trolls, early stage AMN or living a life in denial. Admin won't respond to messages.

I read pretty much every relevant post before writing about subjects I find important and undiscussed. The more I wrote the more replies I got, so I carried on. My views on wheelchairs were often disregarded by regular users, who live a life dedicated to fighting AMN. I think this is great, albeit ultimately futile. I don't want to live a regime where I HAVE to go to the gym 3-5 times a week or I am disabled, I want/need to do my life 24/7, which I do.

As far as I know there is no treatment for AMN and its just a downhill slope. You are very lucky if you are still early stage and your condition is for the most part stable. I can pretty much guarantee that a lot of you will find yourselves in my position one day. Its not a nice thought, but a reality. I wish someone had told me how to do it, I just spent 4 years amassing all the kit I need to live like an independent normal person. But I did it and now I am an 100% independent person capable of looking after myself.

If you don't consider yourself to be handicapped yet, good for you, but its on the cards, be prepared. If you are holding out for a miracle cure, do that, but I am not expecting to see one in my lifetime. I still live a normal life despite being handicapped. I can look afer myself and my dogs, no help whatsoever.

If I were to be invited back to the group I would want at least one pro-acceptance, pro-wheelchair on admin. I am very serious when I say if you haven't even tested a wheelchair then you are missing out on a valuable tool. A lot of people have big egos overs wheelchairs and cathéters and other such items. I do too, but I managed to tame mine enough to let me get the things I need to do life, its just a good idea if you do the same. Without being told some people don't consider all the options and severe users contact me privately over delicate matters they feel unable to discuss in the group for fear of having what happened to me or similar. If you want to fight AMN, good for you, but I did that for 7 years and I am done now, instead of fighting my legs I fight other stuff instead. Acceptance is the answer.

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Wondewall (actually, LessThanRich)

I am not prepared for you to use your membership to act as a gateway for Rich. Therefore, I am afraid that I will have to restrict you also from posting.

Please don't try to re-register on the forum. I will simply keep removing you.

[StevenSims]

I totally disagree with Rich!

You've got to fight this and keep positive! I've been living with AMN for 10 years too! If you give up its the end of you!

All the best

Steve

[Aaron98 in reply to StevenSims]

That's a wonderful perspective to keep, Steven.

[KazzyALD]

I’ve read all of LessThanRich’s posts, and I’m sorry if this offends, but he has come on here, and basically he’s trying to teach everyone how to suck eggs. Everyone of us are dealing with this illness in our own way, and don’t appreciate his in your face, I have all the answers, attitude. Many of us have watched family members go through this ‘Hell on earth’ illness, and have learned from their experiences. So we’re all fighting the same battle, but we’re all using our own choice of weapons. There is no right or wrong way of coping, but whatever way we are coping means it’s right for us as individuals. LessThanRich thinks he has all the answers, and he definitely hasn’t. This site is for sharing our own experiences, and to offer advice when it’s being asked for, not for some ‘thinks he knows it all’ when he really doesn’t.

[Shelcee in reply to KazzyALD]

100% agree!

[JasonHarnum]

Your name should have been ToneDeafRich. There are many opinionated users of the site, one of my favorites is MonkeyBus comes to mind. The difference is he nor others discard and attack others that doesn't agree with their point of view. No fear ToneDeafRich, there are many other places you can spew your pity party and troll on those who see the world differently than you.

[monkeybus in reply to JasonHarnum]

JasonHarnum , thank you very much indeed. What a nice thing to say.

I have stayed out of this whole thing (apart from my witty little comment about wheelchairs), but I'll weigh in now it is all over.

We are all going through our own analogue of hell, each and every day. We are all alone in this disease (families notwithstanding, I am talking about fellow sufferers). A hell of a thing to be diagnosed with this disease, then leave the doctor's, go home, and then what? A lot of time to think/worry/obsess.

But, so little information, even doctor's generally don't know. very few true specialists. So, it is the Internet for us all. Hard to find any decent, usable information about AMN, and even the likes of myelin.org, rareshare or ULF, I find lacking.

Very comforting to discover this place. Friendly, non-judgemental, post whatever you like about how you are dealing with this disease. Factor in the fact we all have a wide breadth of symptoms. Some of us are walking at 60+; others are in daily, chronic pain; depression; fatigue; some of us have passed away at ridiculously young ages, and, yes, others are in wheelchairs.

The thing is, we all went to school, we can all reason, if we can no longer walk, we'll get wheelchairs. May or may not be happy about it, but we'll get chairs.

As well, though, is the stone cold fact that if you do not use your muscles, they will atrophy (and quick). Muscles, and don't forget your brainbox. I have posted before about brain plasticity. Memory exercises, crosswords, puzzles. Lose your right hand (if that is your dominant hand), and you can soon learn to write with your left.

Harry Houdini would walk everywhere barefoot. Your toes are fingers, but generally useless as we jam them into shoes all the time. They may no longer be any good for swinging from tree to tree, but you can soon learn to do intricate stuff with them. Houdini would pick locks using his toes.

Some people with spinal cord injuries spend a fortune on experimental medications so they can get out of that wheelchair and walk (if only for a few metres)

miracleofwalk.wordpress.com...

It is obvious why we want to stand tall, I don't need to adumbrate the reasons here, factor in living in the city. On and off buses and trains, in and out of cars. Crutches suit me fine. Living my life in a wheelchair may allow me to scoot about, but it would create a whole raft of unneeded problems. cannot beat a wheelchair at the airport, though. I recommend booking assistance if you haven't tried it yet.

So, yeah, if you want a wheelchair, go get one. If you want to continue on two legs, do so. If you are happy, I am happy. That is the long and short of it.

I, myself, consider that I have "beat" AMN, by taking military strength doses of drugs, and i never miss a chance to tell anyone who will listen that 4-AP and Modafinil are the answer. Some try, and they get similar results to me, others get nothing. Try it if you like, if you don't, I won't lose any sleep.

Downhill slope? We all know that, it's the speed of your own decline that's uncertain. Look at me, I'l be 50 before I know it. I'll never dance the lambada, but I can still walk unaided. Went to the shops yesterday on my bike, walked about, didn't fall over. Better on crutches, though.

youtu.be/6IzWHGrjz0E(Not working as expected?)

Pain - I am basically OK.

Depression - knock on wood.

Urinary issues - Not worried at all. I am like that statue of the little boy in Belgium. Helps if I drink plenty of water, though.

Sexual problems - Nothing but issues, but nothing mechanical.

We should fill in that master list post that recently went up.

I have a new post all sketched out, all about the corn on my left toe. Stand by.

[nikolahn]

The panic is one of the AMN symptoms. I have beaten it.

[Klorda]

Despite some negative responses, I still think you have a great attitude and I hope to feel the same way you do when the time comes for me, Rich, i.e. wheelchair, catheter, etc.

[SongStream]

when the time comes for me

It's important to maintain positivity now and to practice mindfulness. One can not assume that you will always progress the same way as others. I feel there is a hint of depression. I am not ashamed to admit here that I had a major depressive episode and I still continue to see a therapist for congitive behavior therapy which is why I advocate mindfulness and positivity. This has kept me from spiraling downward to defeat and worsening AMN.

[monkeybus in reply to SongStream]

Depression. Join the club, no shame at all. Not when you consider what we have to endure.

I know a man took his own life last year, and he was 100% physically fit. Wife, young kid, job. Doesn't take much to push anyone over the edge.

Have to keep an eye on yourself.

[SongStream]

So true. I mentioned my depression because it was also noted in Rich's history. I believe depression does play havoc on our immune system and with AMN, well, we all know where that leads. I highly recommend Mindfulness Based Stress Reduction: umassmed.edu/cfm/mindfulnes...