Anyone else paralyzed beside me?Anyone?anyonyone?

Because my bleed in July 2009 apparently effected my motor cortex, my entire left side is paralyzed! My left arm is frozen from the shoulder down, and my left leg is weak and the ankle and foot are paralyzed. Additionally my left eye struggles with scanning!NOTE Tis is NOT a pity-party! I am just wondering if anyone else out there has paralaysis? or resulting weakness they are dealing with???

Thank You!

Nicole in Pennsylvania

Hi Nicole. You might find this discussion interesting...

http://www.avmsurvivors.org/forum/topics/are-there-lots-of-people-with?xg_source=activity

I do know a number of people on here who will be physically challenged probably for the rest of their lives or until medical technology catches up. Right now so much of whether or not one makes a full recovery is based on the extent of the bleed...location of the AVM and of course...how quickly did you receive medical care.

You may find this interesting as well...

http://www.avmsurvivors.org/forum/topics/are-there-lots-of-people-with?xg_source=activity

I guess it's the optimist in me but there is always hope.

HI NICOLE,

YOU SOUND JUST LIKE ME! I HAVE HAVE PARALISIS AS WELL AND I AM IN A WHEELCHAIR. I HAVE TROUBLE DEALING WITH IT AS WELL. I ATTEND AN ADULT DAY HEALTH PROGRAM DURING THE DAY. DOING THIS MAY HELP YOU TOO. I GET SOME PHYSICAL AND OCCUPATIONAL THERAPY. YOU HAVE PARALISIS AND THERE ARE MANY OUT THERE WHO ARE NOT RECOGNIZED. MOST PEOPLE ON THIS SITE SEEM TO BE MORE ABLE THAN YOU AND I. I EVEN NEED SOMEONE TO HELP ME TYPE THIS. IT WOULD BE VERY NICE TO HEAR FROM YOU MORE

LINDA

Thanks Linda for replying. I bet you too wish you weren't replying to that discussion! I am hemiparysis: Only body parts on my left side are paralyzed-----I can walkshuufle as the case may be I was in a wheel chair for a year before I went to an extensive OP program at the Drake Center in Ohio Now I walk with a heavy limp My right arm fortunately was not affected as I was previously right handed! Only my left arm from the sahoulder down is paralyzed the hand is in a fetal claw and the shoulder tends to slip out of the socket Lots of E-Stim works to re-educate the nerves; I am however not a fan of the discomfort!

Again thanks for sharing Oh Misery loves company and all that!!!

Nicole L.

Hi Nicole,

You are right misery does love company. I am trying to accept the fact that i need a lot of assistance from others. I have 24 hour care when i am at home. Do you need any such assistance? I sure do miss just doing the "regular things" like walking from room to room on my own. At least i can still enjoy listening to music. I like soul music and rhythm and blues. I used to be a publisher and enjoyed that very much. How about you? :}

Linda

     Hi Nicole.    I'm not in a wheel chair but, I do use a cane.   If I go to a store, I always have to use a cart to stabilise my walking.   My left side is effected as well, mostly my leg.   The longer I'm on it, the weeker it gets.  And... it will often tremble and shake.   If I'm not carefull, I will go down.    I'm ok for short distances though.  I just walk with a limp.    It stinks and I'm still trying to adjust to it.

Thanks Ben for the reply. I was in a wheelchair for 4 months and now I too walk with a cane for my left side as well But my left arm from the shoulder is paralyzed too. Sorry but I feel better knowing someone else who has a cane like me (the whole misery loves company situation) Nicole

Nicole, I Know what you mean (misery loves company). This is a rough road that we travel. Although I have a a lot of friends who help me out. My "challenges" are still my own to deal with. It isn't always easy, that's for sure.

Ben

I lost everything to the left when I had my surgery. I couldnt feel anything at first. I had to learn how to walk at 20 yrs old. 26 yrs later I still limp and have a weakness on the left side. I lost periphal vision to the left. When my leg gets tired from walking too much I really limp, or my legs kind of drags along. People are always asking me what is wrong? I surrendered my drivers license 11 years ago. None of my doctors would report me to the state. I didnt want to kill someone and I had too many accidents. I walk everywhere. a mile and a half to work and than back. (I'm still fat) lol

One dr told me I need to exercise it, are you kidding me? I found a new neuro and she agrees that after 26 yrs I'm never going to build the muscle. It gets weak and just starts to shake. But on the bright side, I can walk! I know I'm just going on and on. I'm sorry.

What part of Pa r u from? I lived in NE Philly before moving to the Jersey Shore

i am paralyzed on the left side as well… i can walk short distances with my quad cane but use my wheelchair for everythng else. i cant bend my left knee, ankle or move any of my toes. my left arm is completely useless unless i want to fling its dead weight at someone, which the opportunity has yet to arise. i cant feel my fiance touch me. my 3 year old son holds my left hand, i cant feel it. in fact, ive created “the circle” i pick up my left wrist with my right hand and tell him to get in my circle when i want a hug and kiss. i cried the day he came to me hlding his wrist up and said “mommy can i have a circle?” also, as i said in another of ur posts… i forget to pull my pants up on the left side! my hip is tan but my ass is white lmao.

Hi, yes we are out there struggling and happy for it every day. I had brain bleed due to an AVM in July 2005. And I’m not pulling any punches here it has ruined my life in some ways, improved it in others (if you can believe that ). I have lost so much since then, not just the use and control of the left side of my body and my independence, but my marriage of 18 years ended last summer, along with that 2 of my 3 daughters have taken sides against me with their Daddy, so I am not in their lives currently. I have battled and still continue to battle depression and anxiety. But splitting from my husband allowed me to be with a man who loves and accepts me. and shows affection and love for me. Things will never be perfect in my life but its not like they were before my bleed soooo… I am in search of something close to perfect. I hope you are on that road to a happier life. I know its hard to do but make a habit of writing down at least one thing every day that you are thankful for . Keep a running list going, adding one blessing a day. pretty soon you will have no choice but to be happy about things. It really helped me to do this.

Melanie! Thank You so much for the advice and optimism! I Really needed to read that! This website really works and We are all Survivors aren’t we! i will try harder to lookon the bright - side! Things could Always be worse!
Thank you, and nice to meet you

Nicole, I am glad to know that you found my little bit of advice so uplifting. It is really hard to retrain your self to think positively to avoid the depression and frustration that you encounter so much during your day. I am happy to keep in close contact with you since we are in the same boat, except I had my bleed 6 years ago, so I am more progressed in the transition to our new style of living. I was going to say something about being disabled, but naw, I really hate that word almost as much as handicapped. know what I mean? Anyways, you are not alone okay?

Hi Nicole! I am new to this site and have read all the replies. I had a Spinal AVM C-3 thru C-5 removed by Dr. Spetzler in Phoenix Aug of 2010. Because of the loss of blood to my Spinal Cord, I suffered a Spinal Stroke. I completely lost all feeling in my left leg and arm. My right leg and arm became numb and I had tingling and numbness under both feet, down the back sides of my leg. My lumbar nerves were fully inflamed and it still feels like someone is behind me holding on and I am on top of their feet. At night when I got into bed, I felt like the Michellin tire man. At 6 months, the weak arm was broken by a family member. At 8 months, I started Massage Therapy and THAT REALLY helped loosen me up. At 11 months, I was walking pretty good but very slow and I started to feel the nerves grip start to loosen. I still can only type with just two fingers. My left arm is still paralyzed from the upper arm on down and last night I fell because I could not catch myself and broke my left foot. Now it is back to wheelchair and it is very frustrating. I did find that doing the therapy helped alot. When your limbs feel heavy, it is because the nerves are not sending signals. You have more company than you think and researching my medical issues on the Internet helped me understand more. It is hard for me to watch my able bodied friends walk as I want to be just like them.

Thank you Tina. Not that you are "stuck like me, but to know I am not alone. I would LOVE to try the massage therapy, but, I’m betting my family will say , sure you would, who wouldn’t like massage therapy… I know its not like a massage at a SPA, but my parents, who took me and my 6 kids in after the rupture, I’m sure would be critical, based on the fact that I’m too paralyzed to drive myself, I would have to pull it off on my own! My muscles just ache from being paralyzed and bound up all day! I will look into the treatment, though. Thanks for the advice, do you have "hyper-sensativity too? If so , is the massage painful in that case?
Thank you,
Nicole

It is called therapudic massage like they do for stroke patients. My neurologist prescribed it and it did wonders!!!



Massage Envy has franchises all over the nation, you just have to make sure you get a masseuse who is trained in stroke therapy. I was wound up tighter than a clock. All stiff and she told me to start stretching on my own like Yoga and I saw her once a week. It worked beautifully! They won’t let me drive either till left arm starts working. By the way, this is a recent pic of me 11 months after surgery and 3 months of massage therapy

Hi Nicole, I was paralyzed on the entire left side of my body from my AVM which was in the right temporal lobe.
This was 26 yrs ago and it took therapy to gain my strength but I got almost everything back. To this day is it still weak.
I can relate as to the pitty party stuff. If you have made it this far than your a fighter an a strong person!
I have worked for the past 26 yrs with seizures and half my vision. I don’t want pitty or for anyone to feel sorry for me. Hey I beat the odds and I’m still here! We are Amazing people! Hang in there. You may need special therapy for that area!

Melanie, I am very sorry to hear about all you have been thru. I had an avm in the right temporal lobe in 1985 and it changed my life. I was only 20 so in a way it was easier at such a young age to recover. I had the will to survive. I beat the odds and they said I was the miracle kid back than. I dont want pitty or smypathy. Heck I just told someone that I’m amazing for making it this far. We all have to be thankful for what we have. I lost half my sight but I still have my life. We all have to be strong. I know I can ramble on and on. I’m so tired now so I really should go and heck back in the am. Have a great nite and think happy thoughts



MelaniE SolarI said:

Hi, yes we are out there struggling and happy for it every day. I had brain bleed due to an AVM in July 2005. And I’m not pulling any punches here it has ruined my life in some ways, improved it in others (if you can believe that ). I have lost so much since then, not just the use and control of the left side of my body and my independence, but my marriage of 18 years ended last summer, along with that 2 of my 3 daughters have taken sides against me with their Daddy, so I am not in their lives currently. I have battled and still continue to battle depression and anxiety. But splitting from my husband allowed me to be with a man who loves and accepts me. and shows affection and love for me. Things will never be perfect in my life but its not like they were before my bleed soooo… I am in search of something close to perfect. I hope you are on that road to a happier life. I know its hard to do but make a habit of writing down at least one thing every day that you are thankful for . Keep a running list going, adding one blessing a day. pretty soon you will have no choice but to be happy about things. It really helped me to do this.

I wanted to tell you about a good book that might help, it’s called My Stroke Of Insight by Jill Bolte Taylor, A brain scientist’s story of her AVM. She did have paralysis.

Thank You, I love it! I was given it as a “gift” at the hospital, and I’ve read it 4 times since!