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AVM Survivors Network

Looking to meet survivors Fresno, CA


#1

My name is Nancy. I have a 21 year old brother who’s AVM burst in his front right side of his head last year. It paralyzed his left side. He just got his trachea removed this month. His recovery is going good, slow, but good. Our family are his primary caretakers. Though we are happy to see his personality is still there we, have hit a point where we are struggling to keep him motivated and encouraged. His girlfriend left with there 1year old baby when he came home from the hospital. Like any man in his place, this brings him down and takes him to a dark place. We communicate with him through a method that we call “letters” where he basically points out one letter at a time put together sentences. That is his only method of communication. My brother is young. I believe he can get better, I just need him to believe it too. I am looking for AVM survivors that might of shared a similar experience, to have some moments where they can share some words with him, let him know it is possible to get better, that though it may seam like it, his life isn’t it over. You don’t have to be local, even through video chat can help. I want him to meet inspiration through REAL people, beyond YouTube and blog posts. Please Help.


#2

Hello Nancy @ForEric and Welcome- I am so sorry about your brother. There is some hope- there is a national stem cell clinical trial going on right now in the 3rd stage- Its for stroke and tbi victims that have paralysis injecting directly into the brain. It will end Sept of 2019 http://clinicaltrials.stanford.edu/browse-all-trials.html?ctid=NCT02416492 It has been going really well and hopefully the FDA fast tracks it. I would be happy to face time with you tomorrow- Let me know Angela


#3

Nancy,

I believe recovery can be a very long time. I found this video – My Amazing Brain a month or two ago which charts the recovery of a much older gentleman from his stroke. The beginning scenes of Richard I found quite disturbing but it educated me well about one of the guys I met in hospital after my embolization. I think this film is fantastic and should be available on prescription!

I hope you and possibly Eric find it useful.

The other thing I’d say is that you have to understand the reaction of his girlfriend – whether it were to be interpreted as weakness on her part or just far too much for her at a young age – but Eric needs to be more confident that he can get to a much better state, or determined to get better (much more positive way of saying it) and he will find his girlfriend or a stronger person again. Focus on getting better and life will open out again.

Hoping all the best,

Richard


#4

Hi Nancy,
My daughter had a ruptured AVM a year ago, she was 11. She has suffered with depression greatly. I think it is part of the grieving process, (which is not so much a process but a wild ride) the sufferer has to travel and come to terms with what is lost.
Acceptance will come, but it will take time. My daughter is still not there. I have tried to encourage her to start a website or chatgroup for kids who are going through what she is, because I am desperate for her to break out of her feeling of isolation, and I am feel sure it would help. However, she has found ways to manage and I have to give her the support to do things in her own way…even when I see the progress is sooooo slow.
Is there a brain injury organisation in your area? I know that there are often meet ups.
It may be worth reaching out to some organisations to see what support there is.
Here are a few things that have helped her with depression, I know you said real people, they may not work for your brother, but here they are! He may be a while off these yet.

Ted talks or even interviews with people who suffered strokes. (Sharon Stone was a suprise for me and she talks inspiringly about being burned down to the ground to get back up)

Setting a small task, whatever you know he can manage. Completing the task helps our daughter feel in control, restores dignity and rebuilds confidence. You can build up the difficulty if he is having a good day. Make the task completion visual- like rubberbands on a piece of string, that when there’s enough you can make into a ball. It sounds childish, I know he’s a grown man but it works. Even for my step father who has had a stroke.

Art therapy. There are always places in the community that have supportive theraputic art.

Music- eg: you can get an African thumb guitar which he could learn.

Magic tricks. Learning and repeating movements is geat for the brain & its a task he can complete.

Finally: A pet. Taking care of something, rather than being taken care of. Bird, mouse, dog, whatever. Theraputic dogs are a real comfort.

Sending love to your family.