Hello,
I just wanted to check in on people who responded to last years discussion. The AVM survivors who responded to this discussion seemed to suffer more paralysis and i feel it could benefit us to support each other (some are in a wheelchair like myself). It would be nice to hear from any others who are in the same situation.
Hope you are doing well.
Linda
Well, my update is 20 months post op. My left arm is regenerating. My Spinal AVM pushed out my nerve roots left side on C-5 and C-6. They said it takes 1 inch a month to send a signal down the Median nerve which runs the length of my arm and it is 33 inches long. My left ankle still acts like it is frozen and I wear a 3/4 hell lift because the Avm shortened my left leg that much. I still walk very slow, but, seem to be improving.
When I had my first hemmorage, I was in one hospital for 5 weeks (before getting transferred to another), while there, I crocheted, the doctors let me do it because it was a form of pyhsical therapy. I honestly believe that is what helped me! And I have an afgan!! But after the 2nd hemorrage, my right side was affected. I went to physical therapy and that taught me how to balance myself(better - at least!!) When I walk, it is like I take one step forward, and two to the side!! But as long as I'm not hurried -- I get there!! I went from a wheelchair, to a walker, to a cane and now I walk without -- but I do have problems!! Especially with steps, the lawn (uneven surfaces) and people rushing me!! My right arm does have a mind of its own -- my husband has been scratched, hitted, etc. by me, but he realizes it is not intentional!! I got lucky in the husband department!!
Hi Nicole - I use a walker and a wheelchair, depending if I am talking, thinking, being creative and in motion, vacuuming, doing anything involved with coordination or "heavy"-lifting, etc. I don't have the balance to use a cane - yet??? or ever??? unsure at this point after 3 rounds of PT. Unsure with time, what my possibilities are.
There is a really funny author who is a wheelchair user...if you google her, her name is Tiffany Carlson.
...and I see that you're in PA - weren't you in OH at one time?
Glad you pointed out that this discussion was from last year - I was confused - now, pretty easy to do =)
I am left side paralyzed also no use whatsoever in left arm, Leg not as bad I am able to walk with the use of an orthotic plastic leg brace which is from the knee down. My leg movement comes from the hip.I suffered a bleed after I suffered from paralaysis. I do everything I always did although took me several yrs 2 adapt.
Hi Nicole my name is Katrina Johnson, my friends call me trina and I too have paralysis except mine are on the right side. I was beginning to think that it was only me however I wouldn't wish this on anyone. My paralysis also incldes my face. I look like the poster child for stroke!lol I have had five bleeds that attacked my right side, but I recovered from all of them except this last one, I'm better than I was but definately not restored. Be encouraged yours may not stay that way if this is your first time.
Wow! I really thought I was the only one! I actually feel joy just knowing that I am not alone and that I'm not some wierdo that some people stare at! I feel nothing on my right side and have evolved from a wheel chair to a cane as well but I don't use it becsuse I was getting carple tunnel. I was right handed so I had to teach myself to use my left hand, the things we can do when were challenged!
Yes, Katrina, I refer to us as "kindred souls" and yes it is a good feeling to know there are others out there and how they cope.
I had a stroke on Feb. 2011 which affected my right side. I now, after slightly more than a year, still am utilizing a wheelchair whenever I need to get anywhere fast. I can walk with a cane but it is REALLY slow. I prefer my walker as it gives me more a sense of security and i can go faster (with my cane ive had threeo falls already!)
My right arm has come a long way, it has strength but not fine motor control, which means I cannot right. I was right handed before my stroke. Regardless, i have learned to accept it: my philosophy of life is: there are things which we can control and control in a positive manner we must. There are things we cannot control, such as our recovery, etc, and we have to make the most of it.
Prior to my stroke i had huge plans for my life (I was getting a dual PhD and MBA), now ill drop the PhD, and will have to tame down my employment expectations (i wanted to do consulting, but fthat requires travel and i cant even take a showrr by myself now
However, I am thankful to be alive, as we all should because not everyone was as llucky.
I try to look at my glass half full, not half empty. Live one day at a time.
I know exactly what you mean, I actually knocked a man's glasses off at church unknowingly, how horrible is that! Thank goodness he wasn't at all upset! My husband left our eighteen year marriage because he said my sickness was too much! So here I am five bleeds, three crsnials, (twentyseven hours of sugery) paralysis on entire right side, nystagmus in both eyes, legally blind in right eye, lock-jaw, trimmers, and a defibulator due to A-fib. and very much enjoying my life, although having a good husband must be great! I haven't given up!!!
My AVM is in my spinal cord-level C6/C7. I am paralyzed from the waist down and unable to walk. Therefore I have no control of my bowel and bladder. In addition, I have little to no trunk/core control so I can barely even sit up on my own.
Half of my body (waist down) got paralyzed. I can’t even feel pain or touch. Once I saw an ant is walking over my body and walking towards nearby table which I can’t. Now I can walk around and last week I attended an interview for a job. Don’t give up your hope.
Aren't those super-fast carts awesome - especially when you have to announce by the beep-beep-beep that you're backing up and trying to maneuver to open a freezer door - now that's my idea of fun!
And if you're with someone standing and ask a question to someone who works there - he or she most likely answers your question to the standing person - blows my mind everytime that happens.
I think that you guys are on to something with this misery-loves-company thing!
Hey - I think that's great that you've progressed to a cane - I'm not there yet, but know that I'm capable of using forearm crutches if I have a spot.
Hey Beanie - I, too, couldn't use either side initially, but my right side is back in tact for the most part; however my left side is not quite what it used to be.
Thank you for sharring Melanie, it did my heart good to read this.
Thanks for sharring Nicole, this is verry inspiring, thank you!