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AMN EASIER
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All posts for March 2019
The Master Membership List
I have noticed that we have had several new members join our forum in recent months, which is of course wonderful! Some of these members have written detailed...
I have noticed that we have had several new members join our forum in recent mon...
Crispr CAS-9
Apart from Modafinil and 4-Aminpyridine, I regularly post about Crispr CAS-9. It is coming, folks. Like it or not. Never mind the designer babies,...
Apart from Modafinil and 4-Aminpyridine, I regularly post about Crispr CAS-9. It...
(Nordic) Trekking Poles
https://www.youtube.com/watch?v=umjdLSoIY3Y Learning how to use POLES can help people achieve, maintain, even regain mobility.. People with Parkinson's, MS,...
https://www.youtube.com/watch?v=umjdLSoIY3Y Learning how to use POLES can help p...
AMN carriers and more
I thought AMN was genetic I have 4 brothers and 2 sisters we were all tested and I am only female who is a carrier my mum was tested and she did not have it my...
I thought AMN was genetic I have 4 brothers and 2 sisters we were all tested and...
Lessthanrich thank you...
OK, he is stubborn, OK, he writes with a bitter tongue, he is a man who fears for his health. He is very very intelligent since his childhood and his vision of...
OK, he is stubborn, OK, he writes with a bitter tongue, he is a man who fears fo...
Are carrier symptoms just "mild"
Hi everyone! I've just joined the group today. I'm a 20 year old ALD carrier. My family found out I was a carrier after my dad was diagnosed with cALD in 2001....
Hi everyone! I've just joined the group today. I'm a 20 year old ALD carrier. My...
Rich is still sending private messages.
Is there a way to remove Rich from sending private messages? I have a physical therapy appointment today and his message(s) are affecting my mindset. They are...
Is there a way to remove Rich from sending private messages? I have a physical t...
Independence.
I have been posting here for about a month. I read a lot of the website before I began. It inspired me to address serious issues I feel have been left out or...
I have been posting here for about a month. I read a lot of the website before I...
Medication.
It has been brought to my attention that I am not an authority on \"medication\". I am willing to agree with this, as I don;t take any pills other than Toviaz...
It has been brought to my attention that I am not an authority on \"medication\"...
Penises.
I have been saving this post, but I have been prompted to approach this subject. And its a delicate one.. Its just one for the guys. ED, erectile dysfunction...
I have been saving this post, but I have been prompted to approach this subject....
An artificial brain
Scientists grow 'mini-brain on the move' that can contract muscle Now this is very interesting. Scientists grow 'mini-brain on the move' that can contract...
Scientists grow 'mini-brain on the move' that can contract muscle Now this is ve...
Feedback.
I have received quite a bit of negative feedback over my posts. I'm not sure how, I am talking about myself and suggesting things that might help you, based on...
I have received quite a bit of negative feedback over my posts. I'm not sure how...
Question for the ladies
At what age did you start noticing symptoms? Asking for my daughter who is 17. She is going to her first neurologist appointment today at the request of my...
At what age did you start noticing symptoms? Asking for my daughter who is 17. S...
Appreciation.
This is a very new sensation for me, but I have a greater appreciation of EVERYTHING. Especially the little things. Whilst drinking a coffee, door wide open, I...
This is a very new sensation for me, but I have a greater appreciation of EVERYT...
Venting.
I need to thank one and all who have contributed to my posts. Over the last month I have expressed a lot of opinions, got a lot off my chest and hopefully...
I need to thank one and all who have contributed to my posts. Over the last mont...
Ashamed.
Before my diagnosis I was ashamed of my handicaps. My body was literally falling apart with no explanation. I progressively became more of a cripple over 7...
Before my diagnosis I was ashamed of my handicaps. My body was literally falling...
Potential.
For 9 years I suffered without diagnosis. Trying to do life, falling down literally, inevitably hurting myself bad eventually. Since receiving a diagnosis a...
For 9 years I suffered without diagnosis. Trying to do life, falling down litera...
Min-102 (I am not on the trial, but how are you doing if you are?)
Folks, I know it is early days, but are any of you on the Min-102 trial showing any progress at all? Not, of the sort of - \"Well, maybe XXX, sometimes, I can...
Folks, I know it is early days, but are any of you on the Min-102 trial showing ...
Disregard this if you are early stage AMN.
AMN is a terrible progressive affliction with no cure or even treatment. I think its great if you still can walk a bit and don;t fall over on the whole, but...
AMN is a terrible progressive affliction with no cure or even treatment. I think...
Acceptance.
This will be my last post on this as if you haven't understood my point by now, there is no chance. Accepting AMN and that you are now handicapped is a...
This will be my last post on this as if you haven't understood my point by now, ...
Min-102 - The Story Continues...
(My ill attempt of a tag for a movie thriller sequel.) So, it's exactly 4 mos. in the trial and I get a call from my home nurse regarding my upcoming visit to...
(My ill attempt of a tag for a movie thriller sequel.) So, it's exactly 4 mos. i...
First fall
I guess this is the beginning, just got up from my first fall. (Nothing broken, maybe a bruise later) And I was right telling my physical therapist that I was...
I guess this is the beginning, just got up from my first fall. (Nothing broken, ...
Posting guidelines
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...
Some recent discussion on this forum has prompted me to reflect on the way that ...
Stiffness in legs
I am a female carrier of AMN. I am 42 years old and I exercise 5 days a week. Lately, I have been noticing a little more stiffness in my legs after working...
I am a female carrier of AMN. I am 42 years old and I exercise 5 days a week. La...
AMN Canadians.
Are there any Members in Canada? Thanks
Are there any Members in Canada? Thanks
Trulife Matrix
While I was in Boston in late 2018 seeing Dr.Reza (Neuromuscular, very cool guy!) he had a guy there who specialized in orthotics in the area and let me try on...
While I was in Boston in late 2018 seeing Dr.Reza (Neuromuscular, very cool guy!...
Brain Fog.
Whilst I have mainly addressed physical symptoms so far in my posts, I feel we should also talk about the dreaded BRAIN FOG. As the name suggests its a pretty...
Whilst I have mainly addressed physical symptoms so far in my posts, I feel we s...
Suffering
There are certain aspects to AMN where you suffer. I need crutches to walk, otherwise I can;t move. I can't go far even if I can move. I can only walk on solid...
There are certain aspects to AMN where you suffer. I need crutches to walk, othe...
Severity.
When I have been writing to you, I have been considering everyone suffers like me. Then it got me thinking, maybe people don;t suffer as badly as me, so what I...
When I have been writing to you, I have been considering everyone suffers like m...
Speculation.
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....
All this week I have been promoting wheelchairs for AMN users. And despite peopl...
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