Disability. . . not on the computer!

This is my story of how the computer and being on-line has made a difference to me. Being on-line has helped me keep my sanity at times and is probably the single most reason I keep myself active, brain active, that is. On-line service is more important to disabled people who can access it more than able-bodied people will ever know. I’ve met hundreds of super, disabled people on-line. The Internet allows us to meet, from all over the country, and sometimes the world. Many of us would not be able to make this trip without this cyber travel. E-mail, message boards and Internet chat groups have become a way of life for me now. I turn on my computer each day and have a routine where I check each and communicate back accordingly.

Stroke affects many people’s cognitive skills but I was lucky this was not the case for me. I am quadriplegic but I sometimes think that having my cognitive skills intact has made it a worthwhile trade off. I don’t mean to imply that other stroke survivors can’t think for themselves but I don’t have to deal with some of the cognitive problems that others may have. I will try to explain how my life has changed and how I have found a way to continue to feel productive.

My stroke occurred on June 20, 1994 while I was in France on a business trip. I spent two weeks in acute care in France and then four more at a hospital in Washington D.C. I was then moved to one in Baltimore for rehabilitation. I spent two months there. My doctors tried to prepare me for the worst condition of recovery. I had quadriplegia, couldn’t speak, and had to receive liquids through a stomach tube. I also had many other symptoms associated with quadriplegia.  I couldn’t believe that my once promising career was being replaced with this life style.

Four days before I left the rehabilitation hospital, very minor movement started returning. I was was still discharged on time so I continued therapies as an out-patient.  I continued to make progress but it was extremely slow. At home, in my leisure time, I was starting to use the computer. I had regained enough movement in my left arm and hand that I would slide the mouse around and click when I wanted. I was rigged up with a Plexiglas lapboard which rests on the arms of my wheelchair. The mouse pad is placed on the lapboard in front of me and my hand is then positioned on the mouse. I could move the cursor to wherever I need to go on the screen. 

I type using an on-screen keyboard. My on-screen keyboard has “word prediction” so that I only have to type the first letters of the word. My keyboard displays a list of words that begin with those letters.  I then click on my word.  This software speeds up my typing significantly.  I usually type fast enough that I can go on-line and keep up with chat groups without being noticeably slow.  My on-line playing games became a way to supplement my therapy life. When I wasn’t at therapy you could almost always find me on the computer, often on-line.

Sometime in early 1995, I discovered a message board for stroke survivors so I made a couple of posts there. Pretty soon I was contacted about joining an on-line stroke support group. The members would write each other letters of support and meet every two weeks in a chat room on the Internet. I really wasn’t interested at first. After receiving these emails for several weeks, I decided to look into what this group was about.  I found out that many of the members knew little about how to use the computer.  My computer skills were relatively good so I offered my technical help.  I would answer questions about how to use the computer.  Sometimes, I wrote about how to use the Internet.  I must have written 30 or 40 plans. I would mass e-mail one per day. They were very well received and appreciated. This motivated me to want to be more involved. 

Several members of our small on-line stroke support group eventually began discussions that we needed to have our own “web page.” There was a lot of e-mail being circulated about this issue within our small discussion group  and it soon became painfully apparent that no one knew how to make a web page. Finally, I said that I would try (I had no idea of what or how I would do it).  I did pretty extensive research using the Internet as a reference. Soon, I had learned enough that I made one web page. I visualized many ways for expanding it into a larger website.  Our support group started actively corresponding with each other by e-mail with links to other websites with information about stroke. 

We soon realized that the links were growing and someone would have to organize them. I felt obligated to do this because I was making the website.  I had the basic structure of the website mapped out all in my head. The website started to grow. Ten, 20, 30, 40 and finally 50+ pages. This of course didn’t happen overnight. It took about six months. I’d like to say that as the “webmaster” for that site it kept me extremely busy. There were updates to do almost daily. Adding a new link that someone found. We were all proud of our web page. It reflected what many of us collaborated on. 

I also learned that making your website known on the Internet is very important.  It must be advertised so people will know it exists. Well, I set out to do this too. I advertised it as much as I could on all of the major search engines.  We had people joining from all over the world and our web page has recorded well over 100,000+ hits, or visits, on it’s counter since May, 1996. To date it has been visited by over 100 countries around the world. 

Our tiny on-line stroke support group incorporated in 2000 and became a 501(c)3 non-profit charity organization in 2001.  We are known as The Stroke Network.  Our website is located at http://www.strokenetwork.org/.  It was actually the very first on-line stroke support website on the Internet.  I am the President & CEO.  We have about 40 volunteers on staff.  At last count, we had over 12,000 registered members.

I hope you can see that there is life after disability. The computer is certainly one way this can be done. Don’t ever give up on yourself. My disability is from stroke. This is just one disability of many. Where there is a will there is a way. Almost 20 years ago I would have never believed I’d be doing what I’m doing now but I love it. You couldn’t pry me away from my computer no matter what. I even don’t mind being disabled. That may seem hard to believe but I have my reasons. Spending time on the computer, on-line, has helped make living with my disability more manageable.

If you get the chance to use the computer, I recommend it. :-)

Well, that’s about it. I feel very productive doing these things. One thing is for sure…I may be disabled…but on the computer I’m practically able bodied again.

Footnote: Around 1997, I had to change my method of typing because I was doing so much of it!  It was not uncommon to see me on the computer 12 – 14 hours per day, 7 days per week.  I found that other, must easier, methods of making the cursor move than sliding my arm around on top of my lapboard were available.  I began using an infrared head pointer instead.

This was 100 times easier and lightning speeds faster!  I just had to move my head and wherever I looked on the computer screen the cursor automatically moved.  Gone were the days of my arm getting totally worn out from me constantly pushing it.  My shoulder muscles do not work so all of my arm movement was caused by my arm’s bicep and triceps muscles.  My determination and willpower kept me typing but it was becoming more and more difficult to type for long periods of time every day.

I also wanted to mention, how much my faith in God has played such an important role in me being able to accomplish what I have.  Due to health issues, I lost all ability to move my limbs.  Basically, the only real movement I retained was my head control, which allowed me to move the cursor and one finger, which allowed me to click the mouse.  These two movements are all that is necessary for me to be able to use the computer and type whatever I want.

I have been using this method for over 15 years!  I am so thankful for what I CAN do!  It is not much but is just enough that I can still work at my non-profit organization and on our website.  My point is that God definitely had a plan for me.  I feel that all my work has been inspired by God! God is awesome!

Live up to your potential!

Are you living up to your potential, since your stroke.   I know that stroke can be extremely devastating to how you perceive yourself and I thought that if I can change a couple of minds then maybe my story might be worth reading.  I have to warn you, what I am going to say has not all been a can of corn! 

Let me take a few minutes to give you more about my background so it makes sense why I wound up where I am.  I didn’t just fall into this, where I am now, but followed the path of least resistance. 

I had my stroke while on a business trip in Toulouse, France.  That was in 1994. What a shocker!  I was only 36, which is in the age range of most of our survivor members.  Ages 30 through 60 are a more predominant age for stroke than I ever thought.  I had a reasonable education of an Associates Degree in Engineering and Bachelors in Business.  I thought that with my education and background that I would go a longs way with Aerospace!  I was highly motivated and was willing to work my tail off! 

I had spent my first five years in an aerospace laboratory performing tests and writing technical papers about my mechanical and physical testing.  I think that performing this type of work is what makes me so analytical and motivated to take the time to be able figure things out.  This was a great job but was not something I wanted to do forever. 

I spent the next two years working as a Quality Engineer. This job also required an analytical approach but usually meant that we were the bearer of bad news that our plant had manufactured a part incorrectly.  My last seven years were spent as the Chief Quality Engineer in charge of the other Quality Engineers and Inspectors. I had so much responsibility I could hardly keep track of everything.  I had to travel all over the world and work with businesses that made parts for my company and then also try to stay on top of what was going on in our plant. 

In addition, I was the one who had to give final approval for the fan reversers that we delivered to Pratt and Whitney and then which were assembled to the wings of the Airbus A-330 aircraft.  The assembly took place at Airbus in Toulouse, France and that is why I was in that country when I had my stroke. 

I was stressed to the max!  I could not make a move without somebody asking me about 80 million questions!  I was burning out and snapping at people over nothing! I think the 14-hour days caused me to reach my breaking point!    

One morning I woke up and the room was spinning out of control.  Several more TIA episodes later I had my stroke.  I think it lasted three days before the final attack.  Naturally, I thought I had just been working too much.  The stroke hit me like a thief in the night! 

I tried calling my wife from the hospital but just gave a garbled a message.  I thought I was speaking clearly but found out later that I made no sense.  Little by little, over several hours, my motor controls completely stopped.  I was locked-in and had no movement below my nose.  Now here’s the scary part, my cognitive functions continued to function at about 95%. Can you imagine not knowing what was going on, not being able to talk or move and your doctors and nurses talking to you in a foreign language? 

I can order French meals and knew some of the common French phrases but that’s about it for my knowing the French language!  I recognized about 5% of what they were saying and everything else was Greek!  They took me to an operating room and put me to sleep.  When I woke up I had a tracheotomy!  Talk about nightmare!  It was every ones worst dream come true!  Needless to say my story is probably not much different, in principle, than most of you. 

Things could not get much worse and I decided right in the beginning that since I still had my mind that I was not going to give in.  Figuring things out was my specialty.  What was so discouraging, though, was that I was REALLY paralyzed. I could not fathom how weak I was.  I don’t know how you guys feel but my paralysis is a total weakness that is impossible for an able-bodied person to imagine.  I had a feeding tube down my nose, a suction tube down my throat and an oxygen tube hooked up to my throat. I did not know how I looked and still did not know that my speech was gone because of the stroke.  . 

Anyway, I want you to understand that I have had my share of shock and awe!  I know that you and your loved ones have gone through equally devastating times.  I do not consider myself to have gone through anything more or less than you all have.  Just consider that the pain that we all have gone through as enough to make us brothers and sisters. 

Do you remember the movie with Richard Dreyfuss and Bill Murray called, “What about Bob?”  Murray plays Bob and Dreyfuss is his psychologist.  The good doctor goes on vacation and Bob follows him there bugging him for advice about his psychotic life.  He is told to think about taking life in baby steps, meaning, take things slow, take your time making decisions only about one thing he can overcome and accomplish it and then move on to the next thing he wants to overcome.  

This was my mantra almost from almost day one. I knew I must not focus on improving more than one thing, whatever it was, it had to be achievable and then I had to move to my next goal. Of course, my very first goal was communication!  Without it I was toast!  This had to be the worst period of my life!  Living without communication is a horror story and I lived without it for over a month!  I had to make contact with the outside world.  My inner dialogue was perfect.  I had to let everybody know that my mind was still there and that I could feel everything that was being done to me. 

I began communicating by blinking once or twice to yes and no questions.  Next, I was blinking to the written alphabet to spell out words.  And finally, I was staring at objects I was interested in and looking at a communication board to spell words and sentences.  This progress did not happen overnight and took tons of patience.  I thought, baby steps, Steve, baby steps! 

Next, my most important goal was being able to move and control my head.  The human head probably weighs over 10 pounds.  If I were sitting up in bed my head would flop over.  The nurses would prop pillows on either side of my head.  Eventually, one of the pillows would move down and my head would move with it. 

One time, I was propped up in bed and left by myself for about an hour.  My wife had to go eat dinner and a nurse was supposed to look in on me.  Gravity soon started making the pillow move down and so did my head.  My neck and head eventually were almost perpendicular to my body. I know I had to look contorted!  The nurse obviously had gotten called away and then forgot about me.  My wife came back from dinner and found me like that and was furious! 

Little by little and day by day my neck was becoming stronger.  I had to continuously perform neck exercises.  For a long time, my head was bobbly.  I started by lifting from left to center and then right to center, forward and backwards, over and over.  The computer use was excellent exercise, too!  Slowly but surely my head control got better and better.  Baby steps, Steve, baby steps!              

I guess my point here with telling you about my first goals and accomplishments after my stroke is to let you know that life after stroke is nothing more than a series of baby steps. You cannot give up because you think your life is ruined. I could see that the only way to get whatever I wanted was to use my noggin and then to figure out a way to make it happen. 

Setting goals that are too much could make you think that something is not achievable but if you start out slow and bite off a small piece of it, just a nibble, and then be patient and take your time mastering that small piece you can do so much more than you ever thought. 

If you go to my web site at http://www.stevemallory.org/ you will see that I have been extremely busy over the past 10 years.  I was able to accomplish these things by taking it slow, not trying to do too much at once and then making sure that I mastered whatever it was that I had to do. I certainly do not have everything listed but just the ones that I did should show you that I made up my mind not to sit still after my stroke. 

You must live up to your potential if you want to feel that your life has been successful.  You do not have to feel that having a stroke was the end of your life.  It’s true, things will never be the same again but does that mean that living a productive life is finished?  Are you ready to end things just because you are out of shape, walk or talk funny? 

It’s not the end of the world but making a life for yourself again is something you and your family can brag about!  You don’t need your old job back or have to drive again, especially if it’s not safe to do so.  What is important is that you are the best person you can be and that you aren’t sitting around feeling sorry for yourself. 

Most people know that I am a Christian and although I am not going to evangelize, please bear with me while I quote my favorite scripture.  

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.  2Cor 4:18

This verse was the key to me being able to accept what I became after my stroke.  I had so many things wrong with me that this burden was almost too much to live with.  So, I made up my mind to do what I could and to do them well and to just accept what was too much to change.  I feel like I’ve lived up to my potential by doing things this way!  A friend once told me that life is like a blank canvas.  You can draw anything on it that you want.   

Is there a “silver bullet” for stroke recovery?

Is there a “silver bullet” for stroke recovery?   The short answer is a resounding, NO!  I cannot believe how many “scams” are out there!  Everyone wants to make a quick buck but nobody is willing to put their money where their mouth is and perform the studies necessary to back up their claims.  When you make the emphatic claim that your therapy, drug, medical procedure, product, etc will cure or reverse the effects of stroke you better damn sight be ready to prove it!

And I do not mean that you have a video of it helping one or two stroke survivors or a biased report written by the person making the claim.  I am saying that you better have data, with a sufficient sampling size, and with positive results to prove that your claim does what it is supposed to and for ALL stroke survivors!

Let me make this perfectly clear, there is NO silver bullet for stroke recovery!  All the claims you might hear of and those websites of testimonials from stroke survivors are nice but definitely not adequate for you to be spending your hard earned money on.

The ONLY thing I know of that should help with stroke recovery is the “tried and proven” stroke rehabilitation of physical, occupational and speech-language therapy and lots of it!  You do NOT need to physically go to therapy, either.  There are lots of exercises you can do at home and by yourself.

So, the bottom line is, no matter how appealing the stroke recovery sounds, please save your money, stroke recovery has no “silver bullet!”

Moving Again!

What does it mean to endorse something? Well, the first thing for me is to believe in what you are endorsing. Believing in the product, or in this case a piece of equipment, is absolutely essential for an endorsement. Especially in this case, I am endorsing something to my fellow stroke survivor brothers and sisters.

What am I endorsing? It is called the PMTD (Physical Movement Therapy Device). It is a passive therapeutic movement device for wheelchair users. All you do is move your wheelchair up to the pedals and handle bars, strap your feet on (and hands on for stroke survivors with quadriplegia) and turn the machine on. Your four limbs are physically moved for you. There is a control box, too, for setting the speed and time. Turn it on and away you go!

PMTD™ has made a huge impact on the lives of thousands of people with disabilities. Benefits from using the PMTD™ include:

Increase of:
• Endurance
• Weight Control
• Muscle Tone
• Pain Control
• Circulation
• Range of Motion
• Organ Cleansing
• Sleep Quality

Decrease of:
• Spasticity
• Pressure Sores
• Contractures
• Stress
• Depression
• Swelling
• Needed Pain Medication
• Secondary Diseases

How cool is that? Stroke survivors, are you hemiplegic or quadriplegic? Stroke survivors, are you in a wheelchair and do not feel like exercising? Do you have problems with swelling, spasticity or skin breakdown? Check out the table. Read what the PMTD will do for you! The best part is you just move your wheelchair up to it, strap on and then take off. It takes less than two minute to setup. How do I know? Because I have one and I love it!

Over the next year, I will periodically be writing articles for our newsletter so I can keep you up-to-date on my feedback and progress. I should mention that I am currently mostly bedridden. I developed a wound on my lower groin last summer. It has been quite large at times, measuring over ½” wide by almost 1” deep.

Also, I developed Type II diabetes about five years ago. My blood sugar averages at least at 150 every day. If you know anything about diabetes, then you know that it is a progressive disease, which can, with ample time, often lead to death. That is why managing your diet and frequent exercising is extremely important! On top of this, in case you do not know, I am quadriplegic. I have not been able to move my body since my stroke in June of 1994.

Needless to say, I am very excited about what the PMTD can do to help my body. It will definitely improve my blood circulation, which will hopefully help heal my wound. It should also reduce my blood sugar and increase my muscle tone. The insulin, in my body, will absorb into the muscles, which will reduce my blood sugar and A1C. I should disclose, however, that I am still unable to get out of bed and use the PMTD on a daily basis. My goal is to use it, at least three days per week, for 30 minutes per day.

I can report, though, that I have already used the PMTD, at a very low speed, several times. I have the timer set for 30 minutes. I present as having quadriplegia but I have complete sensation and can feel every inch of my body. It is absolutely fantastic to feel my limbs move again. I can feel the blood surging throughout my whole body. It feels like my blood is buzzing. It is wonderful!

Check out http://www.strokenetwork.org/sponsors/pmtd.htm to see what this device looks like. You should also watch the video to see it in action.

What is a stroke?

I was browsing the web today and came upon a stem cell website.  I had my stroke over 14 years ago and thought that I understood how a stroke happened pretty clearly but boy did things become clearer today!  I read what had to be the very best explanation of stroke I have ever read.  There were an adequate supply of “technical” terms to make most health professionals happy, too.

Stroke is explained on almost every website that has content about stroke.  I have always felt that most of these explanations always lacked a practical explanation that left the reader with a true understanding of what a stroke truly is.  We all know that a stroke happens when the flow of oxygen is prevented from going to the brain.  Stroke  involves much more than that though.

I was always confused between the terms, thrombosis and ischemic.  To me an ischemic stroke meant that it was a clot; ischemic meaning a clot caused the stroke.  This is true and false, both.  It is true that ischemic means that a clot caused the stroke but actually the word, thrombosis, is the correct medical term for clot.  So, technically, a thrombosis causes an ischemic stroke.

You learn something everyday!  Hey, what do I know, anyway?  I had a brainstem stroke!  Go to http://www.xcell-center.com/treatments/diseases-treated/stroke.aspx for this excellent explanation about stroke.

What is your knowledge about stroke?

What is your knowledge about stroke?  If you are reading my blog then you should have some interest, even a little, about stroke.  I wrote a little 10 question test to see what you know.  The test was not developed to purposely make you feel stupid.  My objective was to show you how compelling the facts about stroke are.

My hope is that you will find this information compelling, too and spread some of the facts around to your friends and they will pass on this information to their friends and so on and so on.

Am I being naïve?  Will some of you do this?  I am very passionate about spreading awareness about stroke.  The Stroke Knowledge Test is my benign and unobtrusive way of getting people interested in the facts about stroke.

If you have been to our website about stroke education and did a good job of reading the content (hint -especially, the web page about stroke statistics) I have no doubt you will do well.  Please take this test.  It will only take a minute of your time.  Let me know how well you did!  No cheating!

Good news for Stroke Bleeds

There is good news for people having hemmoraghic strokes.  The clot busting drug, tPa, which was previously reserved for people having ischemic (blood clot) strokes, might become available for those having a hemmoraghic stroke.  Research at Johns Hopkins University School of Medicine is currently being conducted, with good results, on people that have “bleeds.” The amount of tPa is reduced and controlled to a greater degree compared to the amount of tPa given to someone having an ischemic stroke.  The affects of the stroke took several days to resolve itself.  Some of the stroke survivors participating in the study actually returned to work.  The small study is being expanded to a larger group of 500 people.  This is DEFINITELY exciting news!  I think tPa is a wonderful drug and has made its mark on massive stroke.


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