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AVM Survivors Network

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#1

Please can someone tell me that they have had a catastrophic brain bleed in their brain stem near their pons region? Because since this I have had bad balance, which confines me to a wheelchair, my left side is numb and also parts of my face, which makes it difficult to eat and talk. I also have double vision and nystagmus (bouncy vision), as well as ataxia (I shake). I’ve had all of this for the past two years since my stroke, it’s gotten better of course but I really need things to keep me motivated, It seems like I lived to fight through all this agony. What exactly am I fighting for!? A couple days ago I was supposed to take my suppository, shower, and exercise but I just didn’t feel like it, I didn’t even get into my PJs. From what I’ve seen survivors tend to have one thing in common, they don’t like to lose.
I forgot to mention I’m only 24. I’m not suppose to be worrying about my bm’s and bladder at my age. I know I’m lucky I actually get to hold my six month old niece but it kills me every time someone plays with her the way I wish I could. It gets me really upset when I hear friends talk about trips I know I would go on if I were just normal.

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#2

Hi, my husband had a massive bleed in his Cerebellum near his pons 9 months ago and sounds very similar with all of the same issues. He’s had to relearn to talk, swallow, and is trying to relearn to walk but has no balance and is still in a wheelchair. His eyesight (double vision and nystagmus) and coordination are too bad still for him to write on his iPad although it is getting better. He is 33 and we have 2 kids so he can relate to feeling the way you’ve described. Are you still doing therapy?

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#3

Dear Cmaz,

I am reaching out as my daughter who is now 22 had a stroke at 19 from an avm in the same area. It was also catastrophic and she has had similar issues as she relearns to walk, talk and eat. I see how hard it is for my daughter and even with support at times she doesn't want to do therapy either. Since she is not talking that well she usually just pushes or won't participate at the therapy. My husband and I take care of her and help her get better.

One thing that really helped was getting my daughter a small lap dog. She is so cute and my daughter just loves her. At times we have taken the dog to therapy and the therapist will use the dog to get my daughter to do the therapies. Do you have a pet?

Also, I have been able to find some young college students to come and hang out with my daughter. They are usually occupational therapy students from the local college. I'm not sure where you live but maybe you could find someone to come and do things you like to do. My daughter seems to enjoy baking dog treats for her dog, making soap and body scrubs.
Are you living at home?

I am friends with Cara who replied to you too. It has been helpful to trade ideas with others with a similar AVM and stroke. Since this condition is rare finding an on line community has been really helpful.

Hope this helps.

Sara

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#4

Sending my prayers out to you and your family…keep positive as hard as that may be as you are still young and have your whole life ahead of you to do these things…this will only make you stronger and you will only get better in time… God bless!

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#5

I’m actually trying to live with my twin sister and her boyfriend. If you don’t mind me asking is your daughter still her chair? I did this to mine, makes it a little less depressing when transferring in haha some kinesiology/physio students would be a great idea! I do have two cats but they aren’t as good as dogs.
31-image.jpeg (958 KB)

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#6

Unfortunately I’m still this’s char. My ataxia is bad for a cell phone so this iPad is my life, though I do only type with one finger, it takes so long though. Unfortunately I feel like the province I live in is not taking this as serious as I would like. I still go to a rehabilitation centre every couple of months but I do try to exercise every day.

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#7

Thank you so much for those kind words! It’s a very long road and trying to keep positive is tough but I try really hard to. I was pretty strong before all of this so who knows maybe I’ll come out as a super girl or something haha

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#8

Hi Cmaz, don’t give up! You are young and even though excercises and therapy can get very boring, you can continue to rewire your brain if you stick with it. My husband types on his large iPhone with one finger. He sent an email that was about 3 sentences long to a former coworker and it took him almost an hour! He types with one finger too and also gets frustrated. The iPad has a setting that makes you have to hold your finger down longer before it will type the key. I would check out those settings if you havnt as they really help my husband.
I agree with Sara that a dog could be a great thing for you. They are such great companions! Service dogs are amazing to look into as well. We have a quadrapalegic friend who’s dog knows over 60 commands and picks up anything he drops. Also brings things to him.
In regards to walking, my husband practices with a rolling walker but needs me in the back still for balance support. Have you been able to try walking with support?

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#9

I love your chair. You are obviously very creative! My daughter is in her wheelchair most of the time. She does walk though and needs one person in front to slow down the walker as she has a tendency to push it too far in front of her. Then a person in the back just on guard in case she needs help. Her walking improves all the time but it takes a lot of practice. She's been at it for 2 years and was pretty much in a bed for a year before she could do much. We have a friend that had an AVM, she was 50 at the time and it took her 6 years to walk but she does. Obviously the goal is for our daughter to walk too.

Are you able to walk with help? Do you have someone to help you with exercise/practice? I have no idea how Canadian health care works but I hope you can get the therapy that you need. Keep pushing/complaining if you need to as you are young and you will improve with practice. You have a lot of potential.

Feel free to ask me anything. You can pm me on Facebook
if you like, Sara Somers.

Lizzie loves babies too. My niece came to visit and she loved to hold her baby.

Take care and I'll be thinking about you.

Sara

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#10

Hi Cmaz, I know it is possible to recover from a major bleed much better than the doctors expect you to. My neurologist said something recently about the symptoms you experience after a bleed being down to where the blood spreads to rather than the exact position that it bled from. Best wishes and hope you recover more than expected.

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#11

You will be fine I know cause I was 30 when I went through my bleed & operation etc… God bless!

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#12

Yup I actually might look into getting a couple of dogs instead if cars lol they’re better companions. I do practice standing at least …well trying once a day. I do also practice walking but its with a walker and the assistance of two.

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#13

I really like hearing stuff like this! It gives me reason to keep fighting. What kind of defects did you have to go through?

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#14

Well I’ve surprised the doctors so far, they told my loved ones I was dead. They tell me I won’t be normal again, but they have been wrong since the beginning. Plus they have no idea what kind of person I am , I don’t like to loose, I’m a very hard worker, and I love to prove people wrong!

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#15

Cats* I mean not cars lol

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#16

I’m big on Facebook, I have a ton of questions haha I’ll just pm you!

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#17

Hi Cmaz,
Early on after the bleed, I had no movement down the left side of my body at all. I am now walking (unaided) and regaining strength in my left arm. I still get tired but the main problem I am left with is that I've lost peripheral vision to the left. Good luck and don't give up hope, my neurologist told me this week that improvements can continue over several years.

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#18

Hope long ago did you have your bleed? Unlike most stroke victims I can move my left side but it is numb. Did you have double vision? I haven’t stopped improving!

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#19

What is your profile picture? There are quite a few sara somers lol

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#20

More than one Sara Somers, not possible. lol...... There are four of us in the picture. Me with short blond hair, husband Bill with gray hair, Richard tall son and Lizzie, smaller with white top. Look forward to hearing from you.

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