Some recent discussion on this forum has prompted me to reflect on the way that AMN Easier should be administered.
Long-standing members will know that I was encouraged to start the forum after meeting the founders of HealthUnlocked in 2010. AMN Easier was one of the first on the platform. I remember when we had about 30 members - now it’s over 900.
Most of us on this forum have never met face to face and therefore don’t really know one another. We are a large cross-section of people of different ages, living around the world. But we all have one thing in common - AMN.
None of us can understand other forum members perfectly so it’s impossible to know exactly why they might say the things they do. We are here to help people understand AMN and offer support and possibly therapeutic solutions. That's all. We try very hard not to judge people because of how they deal with AMN, unless something is preventing them from progressing. If it works for you then that’s good and we want to hear from you.
No therapies or treatments are off-limit to talk about unless we have concerns that they may be harmful.
There are published guideline for how AMN Easier should be used: Please read them and make sure you support them:
Be generous in the way you view other members’ posts. They may not use language you would use, or say it in the way you might have said.
It’s OK to challenge or disagree with other members’ approaches to dealing with AMN, but not OK to be derogatory to them or say their approach isn’t worth anything.
When giving advice, remember you are giving it from a limited perspective: it’s either your personal experience of what works for you; it may be because of some factual, evidence-based source that you have become aware of; or perhaps it’s based on a view that you believe is shared by others. In any case, if you can be clear where your information comes from, so much the better.
Above all, we need to be team players. We are on this journey together.
I won’t belabour the point any more. Good posting everyone.
Chris
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COwithAMN
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I can only assume this is aimed at me as only I have been posting recently. I said my bit, I'm finished now. There was some tough love, but people need it. As far as I can tell 2 users have told me they will adopt wheelchairs into their life as a result. Its not something they considered or deemed valuable until my posts. So as far as I am concerned I did something good and useful and I have improved at least two peoples lives. After speaking with many users here, I think I represent an extreme case of AMN and I am really very sick. Surely my opinions are invaluable just in case you are unlucky enough to find yourself in my position one day.
I have pretty much beaten my AMN without using medication. It is totally possible, but someone might need to tell you how to do it and you need some equipment.
Not to be antagonist (really) LessThankRich, but saying 'I have pretty much beaten my AMN..' by using a wheelchair fulltime is humorous. You have found 'your way' and have aptly shared with others. Cool. As Chis wrote, we all have our ways of dealing with it. I vote for MonkeyBus for the most humorous and out of right field posts on the forum.
"Suffer" as if "suffer as badly as me". This is not a competition. We are all individuals in our collective AMN journey. Let's not be blinded by our own sun.
I agree entirely. However, a severe sufferer who needs a wheelchair shouldn;t be told otherwise by anyone. I have merely shared how I get though my AMN, take from it what you will. No skin off my nose what you decide to do. However, I know at least 2 sufferers are now going to adopt wheelchairs due to my posts.
"Let's not be blinded by our own sun...." Brilliant and true. LessthanRich, I've have two fractured hips and a spinal cord injury from falls, use a scooter now. Is my opinion invalid?
More fool you. Get a wheelchair. I got a wheelchair after my first accident resulting in 7 stitches. Honestly I don;t care about your opinion, I will ask for it if I do. I'm literally sharing how I beat my AMN, take from it what you will. Its not for discussion. Just lists of stuff I had to do to win.
Again, anyone who hasn;t at least tested a wheelchair is just speculating. I really don;t care about your speculations.
I doubt many AMN sufferers go and test a wheelchair and then decide against it. If you suffer anything like me, then it will improve your life, guaranteed.
Rich - I think you have taken Chris' comments a little too personally.
I've got no views or wisdom to draw on to enable me to comment on your favourite subject (I am currently one of the lucky ones without significant impact on my mobility to this stage), but it appears you have successfully made your position clear and I'm sure some welcome the input.
I'm sad to see this forum becoming combative and people being aggressive towards others. I think this goes directly against what Chris was trying to reinforce when writing this topic.
I am just standing up for myself after receiving a lot of unnecessary resistance from speculators. I am literally done posting. Two people will adopt wheelchairs as a result of my posts. Good job.
Well said Chris, we are all individuals on here, just having similarities of the same thing. I don’t know what I would have done without the friendships I have found on this page.
Thanks Chris, I check this site almost daily. I enjoy reading posts in which I can relate to. I joined in a call last night with ALD Connect for symptomatic AMN males. I was late so I mainly just listened, but it was very informative and again I can relate to what most of them were saying. Knowledge is definitely power!
Thanks Chris for all your guidance. Having been diagnosed in 2012 this site has been invaluable. I found myself with no help or understanding along with my consultant.
It's a relief to hear others stories making you feel not alone.
I appreciate everyone has their own individual ways of dealing with AMN and it is very interesting to hear. We all know our own bodies and what does or doesn't work for them
Keep up the good work and let's hope some new trials come along soon.
There are other AMN sites, but I don't find them particularly welcoming/friendly. This is the place. Most of my rambling posts go here.
For an object lesson in how not to post, see ROBSUPERNOVA and his throw-away-your-pills-and-boil-lettuce-I-don't-even-have-AMN-but-I-am-here-to-advise-you-posts.
Either pseudo-scientific rubbish, or the cure is right before our eyes, and his abrupt departure from this board was all part of the conspiracy to keep us all down. It is likely those lizard people that control everything.
Or else, our own, corrupt governments, simply profiting from our own misfortune as they, in their secret cabals, slowly, but surely construct their dastardly world order.
I can't tell you enough how much I enjoy your posts! You have brought a lot of practical information, insight, smiles and laughs as well. Cheers from the other side of the pond.
As one diagnosed with AMN for 20 years, I have challenged myself and have maintained positivity and grace which I have found in this forum. I am not a victim or a sufferer but a person with AMN who has adapted and overcome a lot of odds.
Thank you Chris for your wisdom and guidance in our community. You have made a difference. I think we are all better as a result.
I don’t know what I would do without everyone here. Being newly diagnosed I didn’t have a clue about anything. I have read posts back for a couple of years just to try and soak in some knowledge about this cursed disease. I have had my eyes opened by Rich and everyone else. The best thing I’ve gathered is to stay positive and look for humor. That has helped me deal with everything so much better. Without you all, I’m afraid I would have had a pity party by now. Thank you all!
I agree with you Chris and thanks for your work on this. We are all different and I can relate to some postings but not others. I read what I think is relevant to me. Keep up the good work,
Well put Chris. I have seen AMN/ALD in many shapes and forms, and it differs with every person. People also choose to deal with it in the only way they find they can. I would never question or judge anyone and hope others would reach the same view.
Cause if you have met my son Kieran...well i will say no more lol.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Neuropathy or AMN?
LessThanRich
Burning mouth
