HI EVERYONE,
MY NAME IS LINDA. I KNOW THAT HAVING ANY DEGREE OF AVM IS A TERRIBLE HARDSHIP BUT I WAS WONDERING HOW MANY OF YOU HAVE SUFFERD SEVERE PHYSICAL HANDICAPS BECASUE OF THE AVM. I HAD MY BLEED IN 1990 AND I AM NOW IN A WHEELCHAIR AND NEED MUCH ASSISTANCE. I EVEN NEED SOMEONE TO TYPE THIS FOR ME.I OFTEN GET DEPRESSED EVEN THOUGH MANY OF YOU HAVE BEEN JUST WONDERFUL TO ME. IT WOULD BE NICE TO HEAR FROM OTHERS IN MY CONDITION.
Thank you for posting.
It doesn’t seem to me that many here have several handicaps, but it might just be that those with major issues are not able to post, don’t know about this site, or just don’t post.
It does seem to me that almost everyone with an AVM, especially if they have bled, have at least some deficit to deal with.
I think it very common for people affected to suffer from Depression. My wife (with the AVM) suffered from it for a long time. The life situation, limitations, and staring potential end of life issues make it easy to understand the depression onset.
I would encourage you to seek help for depression. And never give up on trying to recover function. I know it is hard not to give up.
I wish you well.
Ron, KS
Hello Linda .
I am so very pleased that you reached out in this post that I am smiling …
Perhaps you can pull together a group here ? If you create one - they will come …
Hi Linda
My son John had anAVM bleed 4 years ago and had a crainotomy and then a stroke. intially he was wheelchair bound, incontinent and unable to talk. Now he walks with a limp can talk but with difficulty and lives on his own with support. He finds it difficult to read small words not big ones and has had to learn to use his left hand for writing, with help. He has no use of his right hand. I am sorry to hear that you are depressed, but it is not surprising as your s and Johns life have been turned upside down. I wish I could find somebody living nearby so he could have more support from others in the same situation.I wish you all the best. Toppy Tysoe
Linda, I think depending on the area of the AVM, once you have a brain bleed because of it, you have different diabilities. Mine was on my left temperol lobe. My disability is speech, language, difficulty with short term memory and I also have a depression issue. I’ve probably don’t even remembered each and every disability. But we are here…and will be with you when you need us! Keep in touch and let us know what you need. Louisa
HI Linda,
I had an AVM rupture when I was 11 years old and it left me paralyzed on my left side. I learned to walk again but completely understand your frustration. Hang in there… I have learned to live one day at a time… and to stay positive. Keeping a positive attitude does wonders for the mind and body. I had surgery in Chicago about five years ago to help with my paralysis. I found it to be life changing, if you are ever interested in the details Id be happy to share them with you.
Take Care!
linda i am the same did you accept it yet i am so angry with the hospital on my bad days but a physologist told me years ago put pen paper and then burn it it works slometimes so keep up the chin linda also think of the positive it we are still alive so think of this linda okay talk to you soon mags
Hi Linda
My son John had anAVM bleed 4 years ago and had a crainotomy and then a stroke. intially he was wheelchair bound, incontinent and unable to talk. Now he walks with a limp can talk but with difficulty and lives on his own with support. He finds it difficult to read small words not big ones and has had to learn to use his left hand for writing, with help. He has no use of his right hand. I am sorry to hear that you are depressed, but it is not surprising as your s and Johns life have been turned upside down. I wish I could find somebody living nearby so he could have more support from others in the same situation.I wish you all the best. Toppy Tysoe
I also had to live having walking problems after the first rupture. I was paralysed completely, above my chest, but my hands were saved. I didnt feel and could move a finger. In time I recovered partially to the limit of being able to walk around the house with a walker, not really correctly, but anyway useful. Outside I use a wheelchair, but this I can take it. Living with the potential danger of a new rupture is more difficult. Dont be depressed; there is a God and everything is a test; we all die in the end, important is to go there in a purified state of soul. Sometimes I feel the AVM is a blessing as it made me aware of belief in God and the importance of leading a meaningful life; of course, I wish I keep living and be useful and I am grateful for every day I am still alive, but thinking I could have lived without faith makes me appreciate the problems for the spiritual awakening it involved.
THANK YOU ALL FOR YOUR KIND WORDS OF SUPPORT. IT IS NICE OF YOU ALL FOR TAKING THE TIME TO WRITE TO ME AND IT IS NICE TO SEE THAT I HAVE HAVE SO MANY ONLINE FRIENDS. IT MADE ME FEEL BETTER TO HEAR FROM OTHERS WITH SIMILAR DIFFICULTIES. LINDA
me too..after my surgery im using wheelchaie..but before operation i can walk
Hi Linda, You may want to look into getting a program on your computer for voice control. I don't remember what its called. I only heard of it. That may help you.
I'm not in a wheel chair but, I can no longer walk far or be on my feet for to long. My legs don't hold as good as they once did. When they start shaking, I have to sit down. When I'm home, I lay down. I suffer with non-epileptic seizures, dystonia, and tremors. Oh, and carpel tunnel in both my hands now.