Steve

[smallory]

My name is Steve. I had a massive brainstem stroke in 1994. my stroke happened in the Pons area, nine of the 12 cranial nerves were affected. So, I have quadriplegia and cannot talk. I have great head control, which makes a headpointer easy to use and I can click both fingers on the mouse. My cognitive skills were left intact so my analytical and business experience has helped me to figure out how to start this non-profit organization.

 

Physically, a lot of what I used to be able to do I have lost my strength there. Sitting in a wheelchair for 12 years and not getting physical therapy has left me even weaker than I was.

[swilkinson]

Steve, you are a genius for doing so much with the abilities you have. To many people this site is a second home and when they, in their wounded state, find this site it is like a miracle.

 

While it is sad that you have lost so much and I guess you are not going to tell us how it feels to be in your body now, it is great what you have done. Not many people who have your physical disabilities would have done so much. You are the Stephen Hawking of Strokenet, our own small universe.

 

As a caregiver I admire Missy who has enabled you to be the person you are. I know how hard that is. She must be awesome too.

 

Thanks for creating this medium for mutual care and for keeping it a safe, secure environment for stroke survivors, their caregivers and family and support people to interact.

 

My own life has been enriched by finding it in my own hour of need almost a year ago. So my thanks are heartfelt.

 

Live long and prosper , Oh Chief Of Executives of Strokenet.

 

Sue. :cheer: :cheer: :cheer:

[toolman]

Steve,

Thanks for creating this site, it has definatly become a second home for me

[HostAsha]

Steve:

 

It is great to see your introduction, wow I m impressed &speechless, I thought me not having 1 arm was bad but wow u inspire me anything is possible, I m so happy you started this site, it has become my second home, I m always here on this site. this site and great volunteers associated with this site gives me reason to wake up every day and conquer world with my 1 hand

 

Asha(stroked at 34 but now 36 time flies )

 

[smallory]

I consider myself so lucky. I guess I learned to use my brain in order to compensate for the many physical deficits that I have. For me, it was use my brain in order to survive life. It was a nightmare for the first few months not being able to talk or move, what a dilemma! It was amazing to watch how I could communicate with the nurses while not moving or speaking to them. I don't ever remember not getting whatever I needed!

 

That seems like a lifetime ago. Now, I just feel like a normal person because I am on the computer so much. My life is in cyberspace and that is where I live out my life. I only get off the computer when necessary whenever the physical world demands it.

[smallory]

 

 

As a caregiver I admire Missy who has enabled you to be the person you are. I know how hard that is. She must be awesome too.

 

Sue, I adore Missy! She goes out of her way to make sure that I am ALWAYS comfortable. She has the ability to figure out most mechanical problems that women usually shy away from. She is awesome! She is like my knight in shining armor, if women can be that, always there taking care of me.

 

I know that I drive her crazy because I am extremely active on the computer and get into things that are sometimes beyond my physical capabilities. She gets stuck cleaning up some of what I start. She hates having to figure out how to solve my messes, lol.

 

We will be married 30 years this January. We got married at 19.

[bstockman]

Steve there are not enough words to thank you enough for starting this site. I joined almost a year ago and was immediately welcomed and felt at home. I am a "lucky" survivor. I have learned to walk and use my arm, my physical deficits are not many and not visible. I have been left with vision problems and cognitive deficits, so am not able to return to the job I loved.

 

Being on this site and making friends and interacting with others has opened my eyes in many ways.

 

Thanks for the opportunity

Bonnie

[4mom]

Steve,

I am like the many others that have thanked you. This site has been like a life line to me. I am the caregiver to my mother who had a brain stem stroke and we were so isolated before I found this site. It has done more for me than paying for therapy. My mom's stroke left her completely disabled and unable to speak just like you. We were told by the doctors that this type of stroke was very rare and her condition locked in syndrome was also very rare. When I tried to find info on the net about it I think I found a 3 sentence paragraph that said that the prognosis was very poor for patients with this. I was so excited to hear others stories that had been where she has. It has truly been a comfort. I think that you truly turned your stroke into something positive for others. You have made a difference in the lives of others and I think that is what most hope to accomplish in thier lives. :Clap-Hands: You should be proud of yourself.

 

Thanks to you and Missy for all of your hard work

Ruth

[Guest veggie.vampire]

And I thought I was bad starting out like you but luckily I improved though still in a wheelchair at present. Having your mind unaffected (mine never was too) is indeed a blessing though adds to the frustration forming thoughts but unable to voice them. Laughed to myself numerous times at the medical staff at the back in the queue when brains were dished out! You must know where I'm coming from. Now my voice will come through it's harder, as they hear my chuckle which since the stroke I find hard to suppress!

Can't add much to what's been said, just agree how well you've done. Thank you and wtg.

Diane

[hrotzal]

Steve,

You are truely an inspiration to all of us on this site. It is unbelievable what you have accomplished. I just wanted to add my THANK YOU for all you have done for us survivors and care givers. Keep up the good work.

Hank

[the nose]

Dear Steve,

 

You have made the very best of what you've been given. Your story is an inspiration for us all. I am new here on the site but not to being a stroke survivor. I had my first in 1999 and my last in 2001 and it was a brain stem stroke also.

So little is ever talked about us and what we go through this going to be good. Thank you for giving us a forum now. I am limited in my abilities but I still have most of my mind. From here all we can do is look up. I am so glad to be part of this network now to hear how others are progressing. Good Luck :Clap-Hands:

[garydotgray]

Hi Steve

 

I just wanted to say thank you for sharing this thread. It sure is nice to get to know you a little better.

 

I also wanted to thank you for the time, energy and meditation (rumination) that you have invested to bring about a community of volunteers, stroke survivors, caregivers and health professionals that have come together here at Strokenet.

 

I understand the need to use technology to compensate for the shortfalls left behind by stroke.

 

A very good friend of mine insisted that he bring in my laptop to the hospital after my stroke and he encouraged me to use it as much as I could. I spent many hours on the computer before I left the hospital and continued with it's use after my release. In fact Chris (my caregiver friend) then set up my computer at home and again encouraged me to use it as much as I could.

 

Shortly after I moved into my own apartment (about a year post stroke..2003) I found Strokenet and the rest as they say "is history".

 

Lately I have been able to do more (or I should say my body has) so I have not been around Strokenet quite as much. (chat roon etc) however I do try to check in on a daily basis and keep up to date on the commings and goings of this great virtual community.

 

I try to promote Strokenet every chance that I get as a safe, secure support group for anyone that has suffered a stroke. (and/or anyone looking for information about stroke)

 

I try to understand and see the world through the eyes of others but as someone once said "it would be like a a single person trying to imagine what it is like to be married". (mostly impossible unless you actually had the experience)

 

So thanks again Steve this community has been a wonderful support in my recovery journey. I feel (like many others) that it has become part of my post stroke life.

 

THANK YOU!!!

 

Smiles

 

Gary

[Phyllis4732]

Brainstem stroke makes the drunken gait and clumsiness of stroke involving the celebellum seem as though it's "a piece of cake". So very close, but a world apart.

 

Thanks Steve and "your better half" for Strokenet. I found it when our local support group took it's summer hiatus 2 years ago. It's almost time again and I will give my "commercial" as I always do to the newbies present.

 

Your story is amazing and inspirational. Takes a "big" man to survive with such a great attitude which you truly have.

 

Phyllis

[slmstrokeangel]

I just want to thank you for this wonderful site. I really get a lot out of it.

[sjennings]

Hi Steve

You know me-- Dr. Shawn Jennings. I am a brainstoke survivor after my left vertebral artery dissected and infarcted my pons. Like you I was totally locked in...every muscle in my body paralysed only my eyelids moved. It has been 7 years now.

I am in a power chair but I can eat now and talk a language I call "Drunkenese", because I sound like I've had one too many.

It is amazing you have created this site Steve. I was a little lonely though ,because I felt different than most stroke survivors--I felt more I had more to relate to the quadriplegics and yet not....

I'm glad you added a brainstem section to this site, because we are a bit different aren't we?

Take care

Shawn