My son has AVM , he will never get better, seems like all the other people in get to have a life .
My son can’t walk or feed himself ,his jaw is so weak he can’t chew, all his food has to be pureed,
I feel like my son is the only one going through this.
Ever time I read some of the people here who have AVM are doing so much better and are so lucky,
I wish my son would be so lucky,
Hi @Woodstock
This is a tough situation and we all recognise that it is often tougher still to be a parent or carer for a loved one with an AVM.
What are the things your son can do? Is he able to sit? Is he able to use one of his hands? Can he talk? We do have some people who are very disabled here but there is definitely a scale. It’s not good being at the more disabled end of the scale but sometimes you have to look at what capabilities you have at least as much as the ones that you don’t have.
Sending you both lots of love,
Richard
He can talk but it’s very hard to understand what he’s trying to say and his left hand he has lost a lot of strength in and his right hand, his brain in front has been badly damaged and is impulse thing is damaged , I cry after ever time I visit him
Hi Woodstock,
You are not alone. My son had an AVM rupture in 2020 and lost most motor control and is essentially quadrapaligic and non-verbal….so similar to you he cant walk or feed himself. Not a day goes by that I dont wish that I could trade places with him. But we are at the point where our focus is giving him the best life possible and when we can do special things for him we are grateful for our family and our lives. It has been difficult seeing all his friends grow up, go to college and now working, etc…. Or all the other families that have so much freedom to go on vacation, etc…. We cant do any of that….But we have retrained our outlook and measure our happiness based only on us. We are content and find joy on the things that matter to us. I am so sorry you are going through this same journey as us…but want you to know that you are not alone!
Is he doing any speech therapy or any physiotherapy?
If he had his bleed in January, there is still lots of room for recovery if he has the appropriate therapies (as far as I know). I’m reminded of @Charles3 who may still be paralysed on one side but last I remember reading, his carer Dan posted a photo of Charles having a trip out on a dinghy. We also have a link to a video of a stroke patient who was not an AVM patient and his recovery over a four year period, including helping him to speak effectively, to go from barely moving a finger to eventually being much more able than he was post bleed. I can find the video if you feel it could be helpful to have a watch.
I don’t want to paint a much brighter future than there is but my understanding is that recovery from a stroke needs the appropriate therapies, plenty of drive and rather a lot of time.
Very best wishes,
Richard
Agree with Richard….if the injury is recent there are many possibilities of improvement with therapy. As difficult as my son’s situation is he had made progress over the last 5yrs that have absolutely improved his quality of life. Hopefully your son has access to therapy it definitely could make a difference.
Prayers for your son🙏… My son still in 3 yrs monitoring he just had gammaknife surgery last february 2025.
My son has been in wheelchair for so many years now
he does stuff on his computer but he can only use is right hand. There isn’t a lot my son can do he’s very very limited.The doctor told me that he may not out live me and that scares me to death , my son is only 26yrs old .
Yes, we all hope for everything for our kids: to see them very disabled is not what we want for them.
However, my experience of being a moderator in this community has led me to believe that being able to commune with people all across the globe through a computer brings real value to one’s life. I concluded a few years ago that being disabled today is so different from being disabled thirty years ago: the isolation of one’s home or bedroom isn’t the isolation that it once was, or it doesn’t need to be so. It is very isolating but it is nothing like the isolation that one would have had to endure in the 1970s or 80s or earlier.
There was a BBC News story that I remember reading about a young man with Duchene Muscular Dystrophy in Norway, who passed away (over ten years ago by now) but his parents discovered a much richer online life that he had enjoyed than they ever believed. So I don’t think it matters in as hard a way that someone is as disabled these days, there are ways to do work that has value to others, there are ways to touch the lives of others and feel some positivity from life.
I know this is such a tiny corner of the life that you had planned for your son, that it is much, much too narrow: you just want him to be like the other kids and the other adults: I would be exactly the same! But here’s a small window into what I’ve learned through being here at AVMsurvivors for nine years and is reflected a little in the life of Mats Steen:
I am just sharing my thoughts to hopefully help you not to feel so down about the life your son can have. I mean the thoughts that I share to possibly be helpful. I recognise that it can come across as “easy: just do this!” No, that’s not what I mean. I just mean to try to share some positivity that I’ve learned where we would all feel like you, that this is a disaster. If you get something positive from me sharing, that’s fantastic. If you get nothing from it, please ignore it. I don’t ever mean to say something that doesn’t help or that rubs completely the wrong way. Just ignore me if it is not helping.
Very best wishes,
Richard
Sorry to hear about your son and understand your pain but as silly as this may sound… it could always be worse!
Cherish the time you have with him, love is powerful and can only imagine how difficult this is for you as a parent … sending prayers to you and your family… God bless!
Hello! When I see cases like yours, I immediately want to discount my own experiences, but that’s wrong. Comparing only hurts ourselves. We all go through hardships, and our experiences are important. And I think we are all united by a strong faith and hope for the best! We are very resilient. I can’t imagine what it’s like to be the parent of a child with AVM since I wasn’t a mother yet. But I saw my mom and dad’s experiences. And it was so hard for me to see them so unhappy and confused. I tried to cheer them up and didn’t show my fears or tears. I think this helped to some extent to cheer them up. I think your son is struggling too! But! Even if he doesn’t show it or realize it, his body is trying every freaking day. He’s fighting for his life with every fiber of his being! And he’s so lucky to have such mom! Please never give up!
Praying for you and your son 
