AVM Survivors Network

Multiple Strokes


I am looking for advice. I have had multiple strokes. They were all in my cerebellum so my motor functions were changed but not really my cognitive functions , much . I have had 3 confirmed strokes and 4 possible. The good news is I am here to complain and that is more than a lot of people can say. I am currently 25. My first stroke was when I was 23. I know I should be grateful for what I have but it is easier said than done. Every night I make sure to list 5 things I am grateful for. But I am still having falls. Luckily I am NOT hitting my head or getting seriously hurt. but I know that it is directly related to not accepting where I am currently. Less than a year ago I was fully on a walker and independently practicing with a quad cane. Currently I am in a wheelchair . I am practicing with a walker with supervision. I know that the more I practice the closer my goals will become but I am tired I have done this many times recently. So I kind of do not want to do it all again. I find myself marking events by my abilities. Like when I am trying to figure out when something was I see what was I able to do then. Like for instance, I know about when a dinner out was because of the trouble I was having with the walker. Yes I am getting out and I have a good support network. But grumble grumble grumble. And comparison to other people and also comparison to past versions of myself. Thank you. I am in contact with multiple stroke survivors. Like the song says: more, more, more.


Hi Worry - Thanks for sharing your story here. I am happy to hear that you have a good support network. Does this include family and friends, in addition to a stroke support group (perhaps at a hospital)? An in person support group might be extremely helpful to you as well, in addition to online support, such as AVM Survivors. It is hard when we seem to fall back to our vision of how we used to be and learning to accept that we may never be that way again. May you always feel that you have friends here and at home:).


You have some story to tell, worryisamisuseoftheimagination. I’m glad you list five things you’re grateful for every night. It tells me you’re a positive person, despite your difficulties. You give me and I’m sure a lot of people inspiration, starting with your profile name. Keep fighting, worryisamisuseoftheimagination, I’ll be cheering you on! :slight_smile:


Hi, worry… I have a brain amv that bled 3 years ago, when I was 23 as well… heck I’ve been having some epileptic seizure before twice a month after being initially treated from my first Avm bleeding… although my longest took around 5 months… I do worry about my safety but I haven’t tried meeting up with a neurologist again… since my first neuro said it was okay not to get an immediate treatment … but now I’m kinda regretting it… as much as I want to get a treatment I don’t have the money for such thing… so I’m stuck to medications for anti seizures at the moment… What relieves me from my fears of having another seizure episode is mostly praying… and by keeping up a positive outlook in life… Just as your name states, worrying too much will just cause unwanted stress and anxiety… keep fighting and live a healthy life… xD


Debra- Yes it includes support groups: three but I don't go to them consistently. On a shallow level I know I may not who I used to, I just don't fully accept it.

Thank you.