Some background info: I'm living Israel, and a childhood friend of mine (very close) have been diagnosed with AMN 2 years ago (at the age of 24).
We served together in the army, and he used to be very active, we used to walk hundreds of kilometres with heavy gear, play soccer and had a very active lifestyle.
But since he was diagnosed, his situation deteriorated quite rapidly. If two years ago he could run for a kilometre, and a year ago we were able to walk for a distance together - now walking for 200 meters is a challenge, not to mention walking the stairs.
I'm sure you've been all go through those hard challenges,
but his state of mind got really bad, his 5 years girlfriend left him when he was diagnosed, and his confidence went very low, he's soon might leave university because he cannot focus at studies because of everything he's going through mentally.
He's afraid he will never find a girl because of what he has, which annoys him the most.
And I'm trying to think hard how to help him with that mentally, how can I raise his spirit?
I would appreciate any comment here, how do you deal with that.
Thanks!!
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diderot555
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Welcome to this site! Use it often to help your friend. You'll find replies from people that have all different levels of AMN. What you have described are some of the things we have all experienced. And you'll find support for both of you.
What has worked to keep me going has been to appreciate everything I can STILL DO. I'm also a bit stubborn (!) and will continually try to do what I'd previously found difficulty with.
I'm so happy that he has a friend that cares! Sometimes we just need to try, feel the anger/sadness and then we can find a way to move past that and continue. I had to have that realization before I could try again. He'll have so many times that he will learn to move through the emotions. I hope that he can learn that and let things go so he can move forward with this. For me, to try and try again is a way to find what works for me & what doesn't. Asking for help can be really hard, but we have to do that at times.
Some days are better than others! Surely having your support will help him to maneuver through most of this.
His girlfriend left after 5 years? Wow! Saying he's better off without her is quite easy - for me to say. One thought that comes to mind is that he may need to learn to work with AMN and accept himself before he'll find another special person. I want you to see the phrase "work with" because he'll be working to integrate body and mind to get the best benefits! If there's a constant badgering going on inside then he won't be able to move through any of it.
Everyone here remembers when we were 'whole' and 'able' to do every little thing we always did. It's true, we did so much and now we can't. Get mad about it and express it! For me, not to take that step has been devastating in some respects. Now that I see how it all worked against me physically, I can take control of having those memories and build on making any experience better.
Sorry to go on and on ... I'm holding you both in my thoughts and hoping for the best!!
Hi, Joanna is right, your friend needs to slow down and look at all the positives in his life. A woman who walks after 5 years is not one of them. He needs to love himself and work with what he can do, slowly initiating more things as he learns different ways of doing them. I have recently gone back to baking after giving up, saying I can’t do this any more. I can’t make the wedding cakes, but can bake a dozen bread rolls. The mixer does most of the hard work, I just do the little things in between.
Keeping you both in my thoughts. Hoping to hear more from you
Hello, I agree with Joanna and Hillary. I am limited as to what I can do now but I am grateful that I can push myself, use inner strength both mentally and physically to live life. If other people have never experienced anything like this, they have no idea how much stronger we are for being able to do what we can do. Your life takes a turn but it doesn't mean it has ended.
I wish your friend the strength to begin the next chapter in his life. You are a very good friend!
I can see you really want to help your friend, writing here is a big step few friends do.
In my opinion your friend just need time, time to undestand this is an illness that we have to learn to deal with, time to accept yourself and being accepted as "a bit" different by others.
In my case everytime I am ashamed about the way I walk makes me walk even worst. When I'm travelling, or in a place I don't care or I don't know anyone I definitely walk much better.
Being diagnosed with AMN is not the end of life, so try to understand him and evertime he fell or he has problems walking long distances, just try to see it as something natural.
By the way, I visited Israel two years ago and it is an amazing country,
Hi diderot, you are a terrific person to be willing to help your friend in the way you have. Being diagnosed with AMN at a young age is a hard thing to have to deal with. The earlier comments here are all spot-on and I endorse them all.
In the early progression, AMN's main effect for most of us is leg spasticity. Stretching the leg muscles is one way to help manage this symptom, especially if drugs are proving of limited value. Find a routine every day to stretch. Your friend sounds like he has been active and sporty, so he will understand what to do, and you can assist.
The other thing that is useful is to find and meet (even on-line, in these Covid-19 times) other men and women with the disease. In a small compact country like Israel this should not be too difficult. I can't emphasise how helpful it can be to meet others and discover that you are not alone.
Finally, your friend should also take hope from the fact that scientific and medical research is progressing at faster and faster rates. There are good chances that really effective therapies will occur in his lifetime. Israel has advanced scientific and medical resources and they be well-placed to lead in this. Why not try to meet some scientists working in genetics?
Tell your friend to take heart, keep going and find ways to manage the effects of this disease. We are all here to help.
Thank you all for your detailed comments, I highly appreciate that!
I will take each and every comment and try to implement what you've wrote.
Finding a community and other people with AMN in Israel might help significantly, but there is no such community or online forum for that (one of the reasons why I asked this question here). I might try to open such online community with my friend.
All in all, thanks for the great community here. I keep following the threads here to get informed.
Hi I would just like to reply, I am with my partner and have been for 7 years I knew my partner for some time before we got together we were 44 when we got together my partner has AMN with Addison's and his walking is now quite poor as with may of the complications that go along with the disease I went into this relationship with my eyes open we discussed the situation in great lengths as Rob already had presented with some problems with the disease, I love him and we are very open we tackle everything together and we were due to get married today but due to covid it is postponed to November - there is light at the end of the tunnel don't give up and this is speaking from a very happy partner. Cathy
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