Beating the Odds: Scott Talks with Tuohy

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ScottKMany people know Scott Klement as an expert in IBM i application and RPG development. But over the last year, Scott faced – and overcame – the battle of his life against a debilitating health condition.

Scott had the opportunity to speak with Paul Tuohy on this subject, and the result is this moving and inspirational podcast. Give it a listen!

RPG & DB2 Summit, Spring 2013

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I’ve always been a huge fan of RPG & DB2 Summit.  It’s definitely one of the best conferences that I attend, and I attend a lot of conferences!  In fact, I’ve participated in all twelve of the previous RPG & DB2 Summit conferences.   However, the thirteenth one which was held in March 2013 had a good chance of being different.  You see, I am still recovering from a serious spinal cord injury that I sustained in January, that has left me a paraplegic.  That means that my wife and son will have to come to take care of me, and since they aren’t RPG developers, this conference might not be much fun for them.  Furthermore, my colleague David Russo would be attending this conference, as an exhibitor, for the first time.  If he didn’t enjoy it, I’d surely hear about it every day at work.

Thankfully, things went very well.  The conference was held in Atlanta, which is a good travel destination.  Since the airport is a major hub for Delta Airlines, you can get direct flights from almost anywhere.  And, with Atlanta being pretty far south, the weather is good, even though it’s a cold March where I live in Wisconsin.

“Summit, in comparison to [a larger, well-known conference], had a more ‘close knit’, and ‘homey’ feel to it, which was kinda cool.”   – David Russo

I agree.  This has always been one of my favorite things about Summit.  It’s a smaller conference, so we (the speakers) have more time to spend with the attendees.  We see them at all the meals, and in the hallways, and in the sessions.  We get to know each other.  One of the comments I hear the most from attendees is that the speakers are very approachable and friendly.

“Jon and Susan did a nice job on the show and even came around several times to ask how it was going and if I needed anything” – David Russo

This conference is organized by Paul Tuohy, Jon Paris and Susan Gantner, who are the “dream team” of speakers.  They are not only good speakers, but extremely experienced conference hosts.  These folks work hard to make the conference seem like it’s fun rather than hard work.

“The jokes and stuff after dinner were fun, so was the prize give away. I thought that Paul was funny and made that fun.”  – David Russo

On the first night of the conference there’s always a welcome reception (i.e. a party with door prizes) where you get to know people better.   The conference organizers always inject a lot of humor and fun into this event, and by the end, we have a warm, positive feeling about the conference.   Because the attendees make friends and get to know the organizers, by the next day, the attendees are much more talkative and friendly.  I enjoy speaking, but I also enjoy spending time talking to the attendees, and they feel comfortable approaching me and talking to me, and that makes the conference really enjoyable.

David’s comments do a great job of highlighting why I love this conference so much.  That’s not to say that I don’t enjoy other conferences.  In addition to RPG & DB2 Summit, I’m very involved with COMMON, and I love it as well.  But there’s a different flavor between Summit and COMMON.  RPG & DB2 Summit is small and intimate, and focused entirely on developers working with RPG or DB2.  COMMON covers all IBM i topics including hardware, administration, security, and also development in virtually all programming languages.  COMMON is much larger, but not as intimate.  Both conferences have their pros and cons.

But, I’ve always loved the atmosphere at RPG & DB2 Summit, and I highly recommend it to anyone who is an RPG and/or DB2 developer.

But how was the conference to someone who had suffered a spinal cord injury in January, and is bound to a wheelchair, in a body that is still not functioning at 100%?   Well, it was hard.  Don’t get me wrong, I really enjoyed the conference, and I’m very glad that I went.    I discovered that I’m still able to be a good speaker, just as I was before the injury, and that was a wonderful feeling.

However, it was hard on me.  I was very tired, and often nauseous, because my body is not back to normal yet.   I had to have my wife come to the conference and help take care of me.  She carried things for me, got food for me (since you can’t carry a plate in a buffet line when you are in a wheelchair, you need your hands to operate the chair) and also took care of me in medical (and more personal) ways when we were back at the hotel room.  I also could not handle the distances between the hotel rooms and the session rooms, so I had to have someone push my wheelchair.  Since Summit is a small conference, I shudder to think how hard the distances might be at a larger one!   Without my wife, I would not have been successful at RPG & DB2 Summit.

Here’s my wife’s take on the conference:

 “The traveling was hard, but once we were there, I really enjoyed it.  I met several people who I knew only through comments they had made on Scott’s posts, and who have rooted for him in his recovery.  I made some new friends there as well.  Once we got to the hotel, and were settled in our hotel rooms, things were easier.  Even though I don’t work with the IBM i, I found it to be interesting.  Jon, Susan and Paul knew that Scott wouldn’t be able to travel without me, so they made sure that my son and I were included in the events of the conference.  I can certainly see why Scott enjoys this conference so much.  And, I would go again, if needed, if they’d have me.“  – Tracy Klement

Despite the difficulty, I’m very glad I went!   I really enjoyed meeting people, and catching up with old friends.  The speaking went very well, and it gives me hope for the future, when my body is stronger, and I’m able to handle things better.

And, above all, it was really good to be back doing something “normal”, instead of focusing on medical concerns all the time.  I feel reconnected to my “old life” again.

Getting Used to Living at Home

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On February 19th, 2013 I was discharged from Froedtert Hospital’s Spinal Cord Injury Center (SCIC) rehab unit.  I decided to stay until evening on the 19th, because this gave me the chance to do all of my therapy sessions one last time.   I even had a surprise – the wheelchair guy showed up with my permanent wheelchair!  I would not have to go home with a loaner.

We had one last meeting with the staff (the doctors, nurses, case workers, therapists, psychologist, etc.) who had been taking care of me.  They were all very complimentary.  Everyone was very impressed with the progress I made, and had a lot of faith in me to keep improving.

My last PT session at Froedtert was in a walking frame known as EVA.  This was my third time in EVA, and I was able to walk the width of the gym, and then the length of the gym, and back.  It was tiring, but EVA is a tall comfortable frame that makes it easy to support myself, and so I was able to walk.  It was a good way to end my inpatient therapy, with the confidence that I can walk, even if I need a big stand-up frame to help me.

And so I went “home”, but not to my own house, to my mother-in-law’s house.  My house has a flight of stairs leading up to the bedrooms and shower, and another flight of stairs leading down to my office.  That’s too many stairs for someone in a wheelchair.  By contrast, my mother-in-law has a ranch house, and because my father-in-law used a wheelchair, she has it all outfitted for someone in my condition.  It will be my home until I’m able to handle stairs again.

The days that followed my release from the hospital are mostly “normal” days, which is to say that I went back to work full-time (I work from my home) and I spent time with my family, and so forth.  Therefore, I will not detail each day, because they were pretty normal.  But, I will give you highlights, especially those that relate to my recovery.

On February 20th, I was back to work for the first time since January 3rd. My co-workers at Profound Logic commemorated the occasion by doing the Harlem Shake.   If you haven’t heard of it, the Harlem Shake is a craze that has hit YouTube over the past month or two. They show a scene with one person dancing to a song called “Harlem Shake” where everyone else is standing around doing ordinary things.  Then, when the song reaches the words “Do the Harlem Shake”, it changes to everyone doing a crazy dance.

Here’s the staff of Profound Logic (aside from myself, of course) doing the Harlem Shake:

Since I still need a lot of therapy, we decided to hire therapists who would be able to come into our home and help me rebuild my muscles.  To our surprise, the physical therapist showed up without any forewarning.  It turns out, someone had given her the wrong phone number for me, so she could not call ahead.  Not knowing what else to do, she showed up to meet us and straighten out the phone number.

For our first session, we mostly got acquainted with each other and did paperwork.  There wasn’t much therapy, yet.

On February 26th, I stood up during my third visit with the in-home physical therapist (PT). She advised me to use the kitchen sink, since it’s strong and is easy to grab onto.   I had failed the last time I tried this exercise, but this time I did it!  This was progress!   Although I had stood up at Froedtert, it was done with special gym equipment, and the help of two therapists.   With the kitchen sink, I had done it by myself, with nothing but advice from the therapist. I was able to stay standing for about 60 seconds, not bad for a first time.

I’m finding being at home to be a hard adjustment.  There’s more carpet, which is hard to roll the wheelchair over.  The doorways are much narrower, which adds challenge, and I can’t call on a nurse at any hour of the day or night like I could at the hospital.  I pretty much have to take care of myself, or get help from my wife, but she has many other responsibilities.  So I’m finding it difficult, but don’t worry, I’ll overcome this challenge, like everything else.

On February 28th I noticed a problem. Something was happening to the back of my head.  A 3 inch by 4 inch patch of my skin turned bright red, and was weeping some yellow fluid.  Could this be some strange infection?  And my hair was getting matted down and stuck in it.   I called my rehab doctor, and spoke to his nurse, but she didn’t have any ideas.  She said she’d have the doctor call me back, but he didn’t call back!   So, after waiting for one day, I called the doctor’s office again, and spoke to the nurse again.  She said that I really needed to be seen, but that the doctor did not have any appointments available.  So, I tried my neurologist, the guy who had done the procedure that saved my life.  He had worked on that very part of my head, so this might be in his area of expertise.  I spoke to his nurse, who said she’d talk to the doctor about this, and he’d call me back.  I waited for a few hours, and then got impatient and tried my primary care physician (who I hadn’t talked to since I was transferred to Froedtert Hospital), but he also did not have any appointments available, and suggested that I go to an urgent care clinic.   Frustrated, I decided to wait until the next day, and give the clinic a try.   But, when the morning came, I finally got a call back from my neurologist’s office.  He also was not available for an appointment, but one of his Fellows (who I remembered and liked from when I had the procedure done) could see me if I wanted.  Well, that’s a heck of a lot better than an urgent care clinic, so I agreed.

The spot on my head turned out to be a burn caused by all of the radiation they used during the two medical procedures I had.  It was strange to me that this burn didn’t show up until more than a month after the procedure, but the doctor said it was normal.   He said he hadn’t seen a burn that was quite this bad before, but he also pointed out that since I had nearly 13 hours of radiation during the procedures, it made sense for the burn to be worse than usual.  He said this is normal, and that if I just keep it clean, it’ll get better on it’s own.  He also recommended taking some extra zinc to help my hair grow back.

He also pointed out that a rash that was on my ear was not related to the radiation burn.  He recommended that I see another doctor about that (one that wasn’t a specialist in neurology) but, I decided to just see if it would get better on it’s own.  This was a mistake. Five days later, the ear rash was much worse than the burn on the back of my head.  Once again, I called my primary care physician, but this time he was available – and it was good to see him.  He was very interested in everything that had happened to me with my spinal cord injury, and talking to him was much like talking to an old friend.  He prescribed some stuff to help me with my ear, and it did the job.

Both the burn and the rash on the ear got much better over the next three weeks.  As I write this, neither one is 100% better, but both are in such good shape that I’m not worried about them anymore.

One of my biggest breakthroughs happened on March 1st.  Someone who had previously worked as a caregiver for my father-in-law had left behind a four-point walker at my mother-in-law’s house.  (The kind you usually see geriatric patients use.)  My PT noticed the walker, and since I was doing so well standing at the sink, she thought we should try the walker.   We had great success!   With this walker, I can walk about 30-40 steps.  As a safety net, the PT stands next to me with a gait belt, and my wife follows right behind us with the wheelchair.  If I should fall, the therapist can use the gait belt to pull me into the wheelchair, so I don’t fall on the floor.   But, so far, I haven’t fallen!

My brothers-in-law, Dean and Kevin, came over and removed the padding from under the carpet in my bedroom and office.  This made it much easier to move my wheelchair around, and has made a huge difference to me.   It sounds like a small thing, but you wouldn’t believe how much better this made my life!  Thanks, guys!

Another cool thing:  I can now, officially, park in handicapped parking spaces.  On March 7th, I got the chance to try this out.   Of course, I can’t drive at this point in time, but when I’m in the car, my wife can hang the handicapped placard from the rear-view mirror, and park in the best spots in the lot.   Pretty cool, eh?

Since my injury, I’ve really been missing my friends in the IBM i community.  You know, I really believe we have the best business community out there.  I’ve been involved in the FreeBSD community, and in some Windows groups as well, but the quality of the people (as well as the system itself) in the IBM i community is unmatched.  On March 12th, I finally had the chance to reconnect.  Hurray!  I was able to convince my wife to drive me down to Delavan, WI for the WMCPA Spring Conference.   We only went for the Experts Roundtable, but it gave me a chance to socialize with my friends again, and it really felt great!

The next day, after WMCPA, I had a checkup with my rehab doctor, the guy who is overseeing my recovery.   He was quite pleased with the progress I’ve made, and the appointment went very well.  He was also impressed to know that I would soon be leaving to travel for the first time, and speak at a conference:  I was going to Atlanta for RPG & DB2 Summit.

I’ll tell you all about my trip to Atlanta in my next blog entry.

Scott Klement’s Days of Determination

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Is it hard to imagine a life where you reach another milestone every day?  Every day you meet or exceed a goal, and are proud of yourself?  That’s what my life is like, right now.  Every day, it seems, I accomplish something I once saw as impossible.

Here’s a summary of each day from February 3rd to February 16th, 2013.  Each day, you’ll see that I made progress, in some cases, by leaps and bounds.

February 3rd, 2013

I just got back from physical therapy (PT). I was expecting we’d do wheelchair transfers, mat scooting, and strengthening. That’s what we generally do in PT. And yes, we did some of that. When I got on the gym mat, the therapist said to get my feet onto the mat, so I did, as usual, by lifting them with my hands. The therapist, however, told me to put one foot back on the floor. I’m thinking “gee, I did it wrong?” She said “lift it with your leg, not your arm.” I already ‘know’ I can’t lift my leg!  She said to try, and she was right. My mind was blown. I couldn’t do this yesterday, but today I can lift my leg without pulling it up with my arms.  Now, it was really hard, and I also swung my upper body to get more momentum, so it wasn’t purely my leg strength, yet this was still a huge breakthrough.

What came next?  She told me I was going to stand. Once again, I’m skeptical. I was in a big lift stand up machine a week ago, and I know the machine did the work. This therapist, who isn’t my normal one, said I can stand without this machine?

Well, they devised a system with parallel bars, belts, and my wheelchair. They pushed my chair up to it, and locked the brakes. There was a young burly man behind me, and the therapist (a somewhat petite woman) in front of me, and I stood up, on my legs. It worked 100 times better than the lift machine because I could lock my knees, and the bones, of course, aren’t weak like the muscles. I’m sure that most of the strength came from my arms lifting me up, and then just resting on the bones, but… I STOOD UP.

I can’t walk right now… but I feel like I could fly!


Standing in parallel bars

Standing in parallel bars

February 4th, 2013

When I first entered the hospital on January 5th, I was still able to walk. But, by the end of that day, I could not.  The last time that I tried to stand, my legs didn’t support me, and I fell. When that happened, I was marked “high fall risk”, and have had special alarms and such on my bed and wheelchair to make sure I didn’t try to get up.  Law requires it for 30 days after a fall — and 30 days after January 5th is…. drumroll please… TODAY! The high-risk stuff is gone!!
So, for my next strategic move, I spoke to my physical therapist about whether I’d be allowed to sit at the edge of my bed. You know, just sit there with my legs hanging off, maybe using my computer, or whatever. They agreed! They evaluated me, and put in my chart that I’m now allowed to do that when I desire.

Occupational Therapy (OT) this morning involved using a “real” bed. The idea was to practice what life will be like at home, with the normal sort of bed people have in their houses. It was rather squishy, and therefore harder to move around than the gym mats or the hospital bed, but was a good experience.

Physical Therapy (PT) this morning involved wheelchair transfers, scooting on a mat, weight training, leg exercises, and STANDING AGAIN! Just like the video I posted yesterday, I was propped against parallel bars, and was able to stand up. I was sure that my weight was mostly on my arms, until the therapist said “stop pushing so hard with your arms, ease off.” Well, I’ve learned to trust these people, so I did. And I was still standing without pushing so hard. Then the therapist said, to my shock, “pick up your right hand, and do not touch the bar.” AND I DID. Listen, folks, that means that it was NOT my arms holding me up, IT WAS MY LEGS. Granted, it was mostly because my knees were locked, and the bones were supporting me, not the muscles. But, it was still my legs. I was able to shift my weight from side to side a little bit using my “butt muscles”, and as long as I kept my knees locked, and had one hand to help with balance, I could stand. I stood twice, each time for perhaps 3-4 minutes.

For OT in the afternoon, I did a “lap”, where the therapist timed me to see how fast I could do a lap around the hospital floor in my wheelchair. This will be a base time that I will need to beat in the future.  My time was 5 minutes, 20 seconds.

For PT in the afternoon, I rode the bike again. She started me on level 5 (two levels higher than I’d done before) but I could only take it for 30 seconds. Then she turned it down to level 4, which I was able to do for 3 minutes, 40 seconds. Then down to level 3, which I was able to do for a full 10 minutes. Last time I was on the bike, I could only handle level 3 for 2 minutes, and got a cycling performance rating of 3.0. But today, my rating was 8.0.

Finally, we did some scooting across the gym mat. On Friday, this was really hard and it took me 10 minutes or so to cross the surface. Today, it was about 30 seconds. What the heck? I couldn’t have improved that much without any practice, could I? The therapist was wowed, too. She said it was really good, and she was amazed by my progress. But, you know me, I have to figure out how things work and why. After pondering it, I figured out why it was so much easier today. The reason is that I wasn’t doing it entirely with my arms anymore! My hip muscles have joined the party!  Granted, my hip muscles are very weak, but they are much better suited to scooting than my arms are, so this makes scooting much easier.

Another great day!  Woo Hoo!

February 5th, 2013

Today I had another shower! Woohoo! And I get yet another one on Thursday. Life is really good in the shower department. We are now having my shower in a more ordinary bathtub, instead of a special handicapped shower. To make that work, I have to transfer from the wheelchair onto a bench, then lift my feet over the side of the bathtub. It’s tricky, but I’m able to do it with only minimal assistance.

My OT is (jokingly) complaining about the amount of paperwork I’m giving her. I keep accomplishing her goals early, so she has to write new ones. She is very pleased with my progress.

For PT, I stood up again today, several times. I also did weight training and mat moving and transfers. Pretty much the same stuff I usually do, actually. PT’s next goal is to perform a car transfer, where I will transfer from the wheelchair into an automobile. They tell me that this will be much more difficult, but I’m not too worried. I’ll get it. I’m unstoppable!!

We had a staff meeting again with all of the doctors, social workers, therapists, nurses, and so forth. One of the big focuses of the meeting was about how the home needs to be modified, and when I’ll be able to go home and try things out. I will still be here for 2-3 weeks, but we need to make sure everything at home is ready. Since there are too many stairs to manage at my own home, I will be living at my mother-in-law’s place until we find out how much my legs will function again. If my legs come all the way back, of course, we’ll go back to my home. If not, we’ll think about modifying my home or moving. So, there’s a lot of planning and figuring out that’s going on with the homes.

In a nutshell, I’m beating all of the therapy goals, and we’re already talking about going home. Wow!

February 6th, 2013

I’m excited, because I just did a CAR TRANSFER. I pulled my wheelchair up to a car, and then using a slide board, I was able to get out of the wheelchair and into an automobile. The car is a Chevy Malibu, which they have in one of the hospital rehab gyms, for the purpose of practicing car transfers.

I’ve been hearing, pretty much since I started rehab, about how difficult car transfers are and how I really need to build my strength, etc. You know what? It wasn’t that hard! Granted, I will still need to practice this more, and I’ll need my wife Tracy to be involved so that when we’re out of the hospital, she knows how to help me.  But, this means I can travel in a normal car!  This is huge.

This afternoon I went… drumroll please… SWIMMING!  Aquatic therapy is held at the YMCA, and guided by one of the great physical therapists (PT) here.

I started out feeling pretty stupid, because although I knew I had to ride in a van to the YMCA, I completely forgot that I would need a jacket to wear outside.  If I had thought ahead, I would’ve asked Tracy to bring me one, but I didn’t.  Thankfully, the weather wasn’t too cold, so I just wrapped myself up in a blanket. It worked. Next time I’ll be better prepared!

I got to ride in a transit van for the first time. They put you in the van and strap your wheelchair in place, and off you go. It was fantastic to get out of the hospital for the first time in a month. Just driving down the street and looking out the windows was really nice.

The way you get into the pool is by doing a wheelchair transfer to a plastic chair on a lift. It lowers the chair into the pool, and there you are. There was one other patient along, too, with her PT, so I watched them do the chair lift. Then, I got to go down. It felt magical to be in a pool! It was awesome!

It was shallow (ranging from 2.5 – 3.5 feet) but I was able to do a lot of work with my feet. I was standing, kneeling, even stepping very slowly. Some of it was REALLY hard, since my legs and such are so weak. I became really unsteady, and couldn’t tell exactly where my legs were a lot of the time. I gave them a really good workout in a way that would’ve been impossible without the pool. It felt soooo good.

When it was time to go, my therapist was getting my chair ready, but it looked to me like the other patient really wanted to get out of the pool. Well, she said it was okay, but you know, it’s only polite to let ladies go first. Just out of the goodness of my heart, you understand, I let her go first.

While they were getting her out, I didn’t have to do any “therapy” exercises. I just enjoyed myself, swimming with my arms and having a great time until they were ready to pull me out. It was like being a kid again, and having my dad take me to the pool to play.

I’m looking forward to the next time!

February 7th, 2013:

After aquatic therapy yesterday, my legs feel really good. I think the pool helped them a lot. The result is that I can’t sleep, I’m too happy to sleep. Ever been too happy to sleep? Maybe when waiting for Santa Claus as a kid? That’s how I feel.

Of course, this was partially brought on by the nurse and PCT (personal care technician) who keep stopping in to see if I need anything. That wouldn’t be a bad thing, except they do it In the middle of the night while I’m sleeping!  With most of their patients, they have to reposition the patient periodically during the night, as well as do some other medical things, but I’m doing all those things by myself because I’m bound and determined to be independent.  So now the nurses just come in and complain that I don’t need them.   Actually, I’m kind of enjoying that. :-)

This morning, my nurses tried to teach me to use a (I don’t know how to put this delicately) commode. Unfortunately, the commode was not the right kind for me, and ended up hurting me and caused me to bleed. Due to this problem, we had to cancel my shower for the morning so they could address the problem. So, it was kind of a tough start to the day, but we all know there will be setbacks, right?
I wasn’t going to let that keep me down. The rest of the day was great. My feet and legs felt so good from yesterday’s aquatic exercise that when I got to the gym I said I really wanted to move them, and I did. I rode the bike at level 4, and got a cycling performance rating of 9.0, better than ever before.
Then, I did some standing, each time getting better posture. Being able to stand without help will be a long process and will take months. But, each time I do it, it’s going to help a little more.

I did a lot of other exercises and weight training, too. I’m now up to 10 pound  free weights for my arm work.

In the afternoon, I practiced more car transfers. I’m really confident with car transfers. Unlike transferring to bed/mat, when you transfer to a car there are a LOT of things to grab onto. So, I feel really safe, and I find it quite easy! I can’t wait for the chance to try it with my wife Tracy, so she can see how it goes, too. I’m hoping she’ll be able to join us tomorrow afternoon to try it with me.

Three days ago, OT had me do a lap around the hospital floor to see how fast I could move the chair, and my time was 5:20, but today, I did it in 4 minutes flat. Keep in mind, that was after PT and car transfers. I can’t believe how strong I’m getting!

Finally, I had TR (Therapeutic Recreation). I don’t have this as often as other therapy, and it’s kind of the “fun” therapy. They decided to put together a game of scrabble with me and 3 other patients. To make it more challenging, they wanted to put weights on our arms so we’d get exercise while we played. The other patients got 3 pound weights, and I got a 6 pound weight. Well, I said, “that’s no challenge! Give me a 10 pound weight”, so they did! I played scrabble entirely with the 10 pound weight strapped to my wrist and I won the game, too.

Finally, I had a quick meeting with the TR staff about an outing. I really want them to take me out in public to do something fun, and they are onboard with the idea, but have to find something that’s possible to do. I’m pushing for a train trip, even if it’s just a 10 minute trip, so I can see what it’s like to ride a train in a wheelchair. I may have convinced them to let me try, maybe. We’ll see. If not, the backup plan is to go to the Milwaukee Art Museum. That’d be fun, too.

Either way, it’s been a great day!

February 8th, 2013

My nighttime nurse just came in to give me my morning medicine. These meds are for acid reflux, which I was having in the ICU, probably because I wasn’t getting any exercise. I was getting a lot of meds at the time, and it was just upsetting my stomach. I told her I didn’t think these meds were needed anymore, and that I’d like to discontinue them.

This is the same nurse that has been complaining that I don’t need her for anything. This was the only medicine or treatment that she’s been giving me during her 8 hour shift.  She left the room grumbling about how maybe she’ll see me for 3 minutes tomorrow in case I need her for something.  HAHAHA… I think I’m developing a mean streak.

February 9th, 2013

I think I may have outsmarted the staff. They’ve been looking for a commode that would work for me, and so far they have been largely unsuccessful. I suggested that the bench that I use to take showers would work perfectly. I convinced them to try it, so now they set it up in the bathroom, in the shower space, for me to use every day. Well, since I’m already on the shower bench, it doesn’t make sense to put me back in bed for a sponge bath afterward, does it?!  I may as well just take a shower.  What I’m saying here is that I’ll get a shower every single day. I’ve beat the system!

I may be sick, but I’m not sure. My stomach was upset for part of the day, and I didn’t have as much energy as usual. I guess it happens.

Kevin and Mia came to visit me in the morning. Tracy and Alex came in the late morning and stayed all day. And Tim and Cree drove down from Steven’s Point, again, and joined us for most of the day.

We played Connect4, Sorry (the board game), darts, pool, and foosball. Had fun!

February 10th, 2013:

The staff here which takes care of me consists of many people. One such role is that of the Personal Care Technician (PCT) who helps me out. They have not gone through medical school like the nurses, but help out with many of the basic things like helping you reach things, taking your blood pressure, getting you drinks, and similar things, to take the load off of the nurses.

Most of the PCTs I’ve met are students who are working as PCTs while going through nursing school. But, interestingly, I made friends with one PCT who is going to be a graphic designer. He loves art, and his schoolwork is filled with beautiful art work. Every day I ask him what he’s been drawing, and well, today he brought his computer with his portfolio and drawings. Wow, this guy is really talented!

We have less therapy on the weekend than we do on weekdays. Today I had a half hour of OT, and a half hour of PT, so that’s one hour of therapy, vs. three on a weekday. I don’t like that. I’d rather do more therapy.

The OT was someone I hadn’t met before, named Fran. She worked my arms very hard to build more endurance. This wasn’t a problem at all and I was more than happy to do so. We did the “arm bike” (you turn the pedals with your hands) for 10 minutes. She started it out with a hard resistance, making it hard to turn, but, I stuck with it for 9 minutes, even though my shoulders were aching. Then, I turned it up to the hardest level for the last minute. I barely made it through, but I did. She was impressed with me.

We also did some weight training on the pulleys. She said if I wanted, I could do more weight training on my own while she was working with another patient.  My family was here, and it was lunch time, and we needed to finish lunch before PT, so I had to turn her down. Otherwise, I would have.

The PT was Aimee, who I’ve worked with before, but it’s been a week or so. She was really impressed by how much I’ve improved in my transfers and scooting. Since my arms were still exhausted from OT, I convinced her to exercise my feet and legs. I surprised myself at how much stronger my legs were even vs. Friday. We did a lot of leg, foot, and hip exercises, and finally did some stands. I stood up 5 times, and I saw myself in a mirror. I was looking good. It looked like I had the right posture, the posture I’d have when normally standing.

When we were done, my arms still felt tired, but my legs still wanted more. I asked if I could ride the foot bike while the PT worked with other patients, and they said it was okay, so I did. I broke all of my records for cycling efficiency, on a harder setting.  It felt so good!

My brother, his fiancee, my wife and son were all here to cheer me on, which meant a lot. I had a great day!

I should add that I also have exercises that I can do in my room. I didn’t settle for just the extra time on the leg-bike, I also did exercising independently. This is a fight I’m taking very seriously.

February 11th, 2013,

OMG, what a day! I slept well today, waking up at 6:30, which has been my target. I got my routine started perfectly and got my breakfast on time. At 7:00, I was prepared to do my morning routine to get ready for the day. I have 2 hours (and it’s a challenge in my condition) to get this done, but I was ready to go. Apparently the nurses weren’t. It was 8:00 before they finally came to help me, so I did not have time to do everything. I didn’t get to bathe at all, and ended up 15 minutes late for therapy, just because they weren’t available to hand me stuff. It’s very frustrating. I’ve had some extensive meetings with the staff since then to try to figure out how to schedule this better. I want to get this organized and make it work properly tomorrow. We WILL solve this problem.

Since OT started 15 minutes late, I convinced the therapist to give me extra time later. OT was really different today. We practiced skills like using the elevator, maneuvering in crowded areas, and using the kitchen. It was pretty cool, really. Tomorrow, I think they’re going to let me cook my own lunch! I’m hoping to cook a frozen pizza from my wheelchair. I haven’t had a frozen pizza in ages.  :-)

PT was just as exciting. We did wheelchair transfers without the slide board. So far, each time I’ve transferred from the wheelchair to another surface (bed, mats, benches, etc.) I’ve used a small wooden board to slide across, like a little bridge. Well, today PT said that my arms are strong enough that I should try doing it without the slide board. I was skeptical, but I’ve learned to always try what they suggest, and I did it. In fact, it wasn’t even hard. I moved from the wheelchair to the gym mat with no slide board, and no help. Then I went back. Then I went over again. Then I went back. It wasn’t even hard.

The therapist said that since it  went so well, we should try transferring  into a bed. We tried the ADL bed, which is a normal bed, like you have at home. That was harder, but was still pretty easy.

Once again, I find myself to be unstoppable. It was another incredible day.

February 12th, 2013:

It worked!  My meetings with the staff, to organize my morning routines, paid off.  Yesterday, I got everyone together, along with the nursing shift manager, and I outlined the problems, and asked how we could rearrange things so that the timing could work.  We made up a plan, wrote it down, and executed it today.  Everything went well!  I was able to

take care of my own morning routine with only assistance in handing me some things, and wheelchair transfers (which require supervision by hospital rules). I had a full shower, all done by myself.  It went like clockwork!

The big accomplishment of the day was that I was able to dress myself in the wheelchair. Putting my shirt on is easy, but the rest is harder than it sounds! I’m so flexible from all the workouts that I can lift my legs up onto my lap, one at a time, and put my socks, pants, and shoes over my feet. Pulling the pants up is the hardest part, since I have to be sitting in the chair the whole time. I have to lean to the side really far to get part of my body off of the seat. Then I pull up as much as I can on that side and then switch and do the same thing on the other side. Doing this, I can inch my pants up slowly.  It was hard, but I succeeded!

For PT today they tried hooking me up to a brand new, special, bike that they just got. A training person from the bike company was here, and was training the PT staff in how to use it. This bike is quite high-tech and involves hooking up electrodes all over the patient. They give shocks to the patient’s muscles to make them contract, so the bike itself will actually try to get the muscles going and give a better workout. It also monitors your own muscle movement and effort, and adjusts the bike accordingly. It was very complicated, and took about 45 minutes to hook me up to the thing (primarily because of all the training and setup that were necessary.) In the end, I’m not sure that I liked it. The electric shocks did not feel good. But, it was pretty nice that the staff thought that I should be the first person to try it.

We had a staff meeting today, where they discussed my progress and discharge goals, as we do every Tuesday. If all goes well (and it might not, there are a lot of variables yet) I may be discharged next week. Knock on wood!

In yesterday’s update, I said that I planned to make a frozen pizza with OT today. Unfortunately, that plan fell through, but we still plan to do that on a different day.

Therapeutic Recreation had me play darts today with a weight on my arm to make it more challenging. I learned a bit about how to throw darts from a wheelchair. Not sure that I’m likely to use that skill very often, but TR is usually more of a fun thing. They are still working on a short train trip, or maybe a visit to a museum. We plan to do that on Monday.

I stood again for afternoon PT, and this time he had me ‘march’, lifting  one leg at a time. I’m only able to lift a little bit, and I have to use my arms to hold me up, but, it is working those muscles a bit, and showing them what they have to do. I also did a lot of other leg exercises from a sitting position.

Tomorrow is swimming again! I’m looking forward to that.

February 13th, 2013:

Today for OT, we went to different spots in the hospital to practice opening doors from the wheelchair. It wasn’t too hard. I’m not too worried about opening doors. I can generally figure out a way to get them opened. However, there are doors that I can’t fit through in the wheelchair.  That’ll be a bigger problem! We also did a game where we passed an 8 pound ball around in a circle very quickly. Eight pounds is a rather heavy ball (there are lighter bowling balls for kids than this) and this did tire me out, though I think the therapist was just as tired as I was!

PT did a lot of leg exercises with me in the morning. They even threw in some extra time, so I was able to get a little extra therapy, which I loved. Though, I was really tired afterward. I took a short nap (in the wheelchair) which helped a lot.

In the afternoon, PT took me to the pool, and we went swimming. I loved that! I was amazed at how much stronger I was today vs. last week. I was able to stand in the pool and walk. YES, I WALKED. In the pool, and with some help, and not very well, but I walked. Being in the pool is my favorite thing to do in therapy. I wish I could do it every day!

February 14th, 2013:

I bet you didn’t know that I’m a domestic diva.

For OT today, I cooked my own lunch. It was just heating up a frozen pizza, but there are some interesting challenges when doing that from a wheelchair, including getting the oven door open without burning your legs, and reaching far enough to pull out the oven grate. I didn’t have any trouble, really, and it’s fun to figure out these “puzzles” of how to get things done. While the pizza was cooking, I vacuumed out the ADL bedroom. My therapist brought a cup full of sawdust and threw it on the floor, and I got it all cleaned up nicely. I was a bit annoyed when the therapist put the vacuum cleaner away though, since I wanted to put it away by myself.

After lunch, I did the dishes. The therapist didn’t know about this since she had another patient, but I stayed and did it without instruction, and washed the table top. I figure, if I’m going to be a domestic diva, I should do it right!

For PT we practiced uphill transfers without a slide board. For some reason, I’ve had a lot of energy and enthusiasm today, and I did these transfers quite easily. We also practiced using a “regular” bed, including transfers to/from it, which was also easy for me today.

Happy Valentine’s Day, everyone! Give your sweetie an extra hug from me!

February 15th, 2013:

This morning OT took me to a big squishy bed (more like the sort of bed you’d have at home) to see if I was able to get myself dressed. I did, without a problem.

PT had me do leg strengthening exercises, and  while I have a long way to go, I’m really amazed at how far I’ve come. My legs are getting stronger every day. Exercises that used to be nigh-impossible are now things that I can whip off 15 reps without breaking a sweat.

My afternoon therapy was to take a shower.  We waited until the afternoon because my therapist wanted to take a shower with my wife, Tracy. Wait, I phrased that wrong. Anyway, the idea was for Tracy to see the type of special needs I have when taking a shower.

Afternoon PT was the best of all. We did car transfers to Tracy’s actual car and she practiced loading the wheelchair into her trunk. It all went very well. We feel good about this. I’ll be able to ride in her car! We also practiced transferring to higher, uneven surfaces, which is difficult, but I did it. We did more standing and I stood for nearly 5 minutes on one of the attempts! I was able to lift my arms off the parallel bars and support myself entirely on my legs. I still have a long way to go, here, but it’s really exciting.

On the one hand, I had a great day of therapy. On the other hand, we discovered that I have a urinary tract infection. This is sapping some of my strength and energy, but at least we’ve discovered it, and can work on solving the problem.  Setbacks do happen in this process, but I try not to let them slow me down.

Tomorrow, I have a day-pass from the hospital, so Tracy is going to take me to my new home (my mother-in-law’s home) so I can see my new living quarters, and make sure everything is okay.  If all is well, I will be discharged from the hospital on Tuesday night.  Everyone cross your fingers!!

February 16th, 2013

Today was my “day pass” to check out my new living arrangements, and make sure we are ready to leave the hospital.  Tracy and I used what we learned about car transfers to get in her car and head down to my mother-in-law’s home where I will be living when I leave here.

The most important thing to test, of course, was the wheelchair ramp to get into the house. Without that, we were going nowhere fast! Thankfully, it worked fine.  A big thanks to my brother-in-law, Kevin, for getting the ramp ready and ordering mats to melt the snow on the ramp!

I’m able to get around almost all areas of the house that I need to get to, including my new bedroom/office where I will sleep and work at my job from.  My brother-in-law, Dean has already set up the office for me, including setting up a network so that I can plug in any devices I need. I can’t thank him enough, for his help! The biggest problems with the office/bedroom were that I didn’t have a nightstand by the bed, the carpet was hard to push the chair on, and there wasn’t enough lighting for when it gets dark. These are pretty minor issues and will be easily solved.

After hearing about my “domestic diva” post on Thursday, my mother-in-law and wife were eager for me to make dinner, so I made frozen pizzas for dinner.  :-) They also made sure I could reach the dishwasher, sink, and other areas where I might be able to help with the housekeeping!

The one remaining problem is that I can’t get into the bathroom, the door is too narrow. The carpenter will be coming on Monday to widen it, so when I go home on Tuesday, I’ll be all set.

Home visit successful!  Big thanks to my mother-in-law for all her hard work, and my niece Jennifer for helping, too.  We’ll work out the rest of the details in the coming days.

Scott’s Birthday Week of Miracles

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On January 5th, 2013, I had a spinal cord injury that has left me a paraplegic.  This blog entry is a continuation of my journey toward recovery.

January 27th, 2013:

I woke up about 5:30 this morning because my legs felt different. It’s hard to describe, but they feel a little “more normal”, like they have a little more normal sensation than before.  Since I had tears in my eyes, the nurse asked “what’s wrong”, and I told her about this feeling.  She said “that’s good, isn’t it?”  GOOD?!  IT’S AMAZING!

Some homework for those of you reading this blog:  Touch your leg. Just touch your finger to your thigh, feel it, and think about it.  It’s different from when another person touches you, or when a thing touches you. There’s a certain special warmth to it, a certain feedback loop since both your leg and your finger are feeling each other at once. It’s a special thing that you don’t think about every day.  Mine doesn’t feel the same.  My leg feeling isn’t as strong as my finger feeling.  But today it feels closer to normal than it did yesterday, and I’m celebrating it!

Today’s therapy mainly involved moving my body around a mat with my arms, and practicing getting in and out of my wheelchair. I have  a long way to go on both skills, but I certainly am getting better at it. I daydream of the day when I can get in/out of the chair by myself. That would give me so much more independence.

Because I noticed better feelings in my legs this morning (albeit, they still have a very long way to go, too) I didn’t get as much sleep as usual last night, and so as the day goes on I’m extremely tired. Despite this, though, it’s been a good day. Tracy and Alex (my wife and son) spent the afternoon with me, and Alex made some awesome decorations for my walls. I’ve also been hanging up birthday cards (my birthday is tomorrow.) The room’s looking pretty cheery!

January 28th, 2013:

The best day of your life is the one on which you decide your life is your own. No apologies or excuses. No one to lean on, rely on, or blame. The gift is yours – it is an amazing journey – and you alone are responsible for the quality of it. Enjoy your life 110%, because you only get one.

Today is my birthday, and my legs are feeling stronger today.  I could only twitch them a little bit before, but now I can noticeably wiggle them.   They aren’t strong enough to lift up against gravity, but I can definitely move them.

I told my physical therapist, and she decided to let me ride a “bike” (of sorts.)  The idea is that there’s a set of pedals that you can pull your wheelchair up to.  They strap your feet to the pedals, and the bike is able to measure your movement.  If you need the help, the bike will pull your legs to help get them going, but when you’re able to pedal yourself, it stops helping you, or even adds resistance as needed to strengthen your legs.

So I’m hooked up and pedaling away and enjoying this feeling, but I’m sure the bike is doing most of the work.  So I asked the therapist how much of the work is me, and how much is the bike.  She hits a button, and says “It’s you. The bike isn’t helping.”  WHAT?  Tears welled up in my eyes, I couldn’t believe it!  How did I go from a twitch to being able to ride a bike?  This was a great birthday present.  Here’s a picture of me pedaling:

Scott pedaling the leg-bike

Scott pedaling the leg-bike

Another thing they tried was standing me up in the lift pictured below.  This big hoist machine holds me up so that my legs are able to feel the right feelings for standing.  Standing made me dizzy quickly, but it was still quite incredible to feel like I was standing again.  Another birthday present for me!

The E-Z Lift.  It does all the work of standing you up. (But made me dizzy)

The E-Z Lift. It does all the work of standing you up. (But made me dizzy)

After therapy, my wife and son celebrated my birthday by bringing me some birthday doughnuts. And a bit later, I had a whole bunch of visitors. My close friend, Carl, stopped by, as well as my brother in law, Dean, my sister in law, Krista, and my nephew, Zach, who helped make my birthday extra sweet by bringing a cupcake for me! The biggest surprise was a visit from fellow IBM i expert/speaker/evangelist, Trevor Perry. Wow!  I can’t believe he showed up!  He doesn’t live locally, but just happened to be in northern Illinois tonight, so he stopped by. I never would’ve expected it in a million years!

January 29th, 2013:

Today was another good day. I GOT ANOTHER SHOWER! It was wonderful. I’ve also matched or beaten my therapists’ and nurses’ expectations on taking care of myself.  I got to ride the bike again, and do exercises to move around on a gym mat (using my arms) as well as weight training to strengthen my arms.

So, the day has been great! Though, I’m really tired.

Every Tuesday we have a staff meeting where all of my “team” gets together to talk to me about progress. This involves doctors, psychologists, nurses, therapists, social workers, and more. We had a good meeting, and they said many nice things.  They estimate that I will be in the hospital for another 3-4 weeks from today.

I also discovered that my co-workers had made me a wonderful birthday video.  Perhaps you can see why I love working for Profound Logic. What a great team!! They actually sent the video yesterday (my birthday), but I didn’t discover it until this morning. Now I’m showing it to everyone! :-)

Make sure you watch long enough to see Alex’s dance at the end!

January 30th, 2013:

Today, my first mission was to get dressed in the gym (rather than my hospital bed with it’s hydraulic help.)  I decided to go at this with full gusto.  The night before, I got my clothes out of the closet and put them in my backpack. This is a challenge from a wheelchair.  I had to use a long stick/grabber thing (“reacher”) to get the hangers down from the closet, bring them to my body, and then I hung them back up.  Mind you,  they didn’t expect me to do this myself.  They figured I’d ask the nurses to get my clothes ready, but I didn’t.  I did it myself. I’m very determined to be independent, and I was 100% successful.

Morning time came, and I went down to the gym in my hospital gown. They pulled a curtain around a gym mat, and I used my arm strength to pull myself into a sitting position.  Sitting cross-legged, I put my clothes on by myself, with no help from the hospital bed. The therapist was very impressed.  She expected me to struggle more, but I’m so limber from all the workouts that I can reach my arms over my feet and put stuff on.  If you can do that, you’ve already won the battle.

I did a lot of weight and balance training today. One thing you don’t realize is how much of your balance comes from muscles below the waist, including  legs, thighs, stomach, etc. We did a lot of work with these (since they are all very weak in my body right now) and I did very well. Every day I feel these “trunk muscles” getting better and stronger, and it’s a wonderful feeling.

We played a game called “forward line” where you shoot a red/white thing (looks like a buoy) down a zip line of sorts. It involves two lines/cables in the middle that you pull apart with your arms while keeping tension on the lines, and it shoots down the line to the other side, where someone (my therapist) then yanks her side apart to shoot it back. The therapist said it’d be really challenging for me but  it wasn’t, it was easy. In fact, she was getting tired, and I wasn’t.

I also got to ride the pedal bike again.  This time, there was increased resistance (level 2) on the pedals. I went for 12 minutes, and covered 1.15 km. Not far for a “normal’ person, but for me? It was great.

I’m getting so much stronger and better every day, that for the first time, the doctor said that he’s confident I’ll be able to stand and walk again. No, he doesn’t guarantee that, but other times he just said “there’s a good chance”, like it was a 50% chance.  Today he was much more confident. YOU HAVE NO IDEA WHAT THAT FELT LIKE.

January 31st, 2013:

Today was another great day. I did well in all of my therapy sessions, and I’m continuing to show improvement. I think many people who are thinking of their own hospital stays think that I spend a lot of time sitting in bed.  Many people have said things like “You can catch up with your soaps!” or “I can bring you movies to watch.” Those are great sentiments, but I just don’t have time. Let me show you what my schedule was today:

6:30-7:00 — medication, some other medical stuff, and breakfast.
7:00-7:15 — shaving, brushing teeth.
7:15-7:30 — was able to briefly log on to check e-mail.
7:30-8:15 — sponge bath.
8:15-9:00 — more medical stuff, getting partially dressed, meetings with doctors and staff… all chaotic, because you never know when the docs and other staff will pop in.
9:00-10:00 — Occupational Therapy. Went down to the gym to get the rest of the way dressed, since the gym mats are more similar to what I’d have to do at home (vs hospital bed.) Also some exercises and weight training.
10:00-10:30 — my break! But, I had to do some medication, vitals, and make sure my lunch got pre-ordered during this time (lunch delivery can take an hour, so if I don’t pre-order it, I won’t have time to eat on my lunch break.)
10:30-11:00 — Therapeutic Recreation.
11:00-12:00 —  Physical Therapy — this ran a little late, and I got back to my room at 12:10.
12:10 – 1:00 — My Lunch break. Though, hospital staff also needed to talk to me, so I spent about 30 minutes talking to them while I ate lunch. There’s also medication and other medical stuff I had to fit in, here.
1:00-1:30 — Physical Therapy again.
1:30-2:00 — Occupational Therapy

It was great to see my brother in law, Kevin, and his wife, Mia, during the afternoon therapy, and they stood and encouraged me, saying “way to go”, and helping keep count. It really helped me keep going, because I was getting tired by that time. Afterward, they stayed and visited for awhile.  I’m soooooooo lucky to have such a wonderful, supportive family!

After that, I started packing up my clothes for tomorrow, so I’d be ready for another full day. And finally, now I’ve logged on to Facebook, will check my e-mail, and stuff like that.  Anyone who knows me well knows that I really like to keep busy, and won’t be too surprised that I’m enjoying this schedule.

Tonight I’m expecting a bunch of my closest friends to stop by and play cards. I’ve been looking forward to that all week. It’s going to be a really fun time!

February 1st, 2013:

As bizarre as it might sound, it turns out there may be some value to sleep. Yeah, yeah, listen for a minute. I went to bed last night at 10:30pm. Okay, for some of you that’s not early, but it is for me.  I slept well, waking up at 4:45am. Now, I didn’t want to wake up that early, so I tried to get back to sleep, but couldn’t. I wasn’t tired. At 5:15, I gave up.

My friends came by last night and we played cards.  This was GREAT fun for me. My friend Nate left me a copy of The Onion, which was fun to read, but I was too tired after the card game.  But this morning? I felt good. I felt powerful. I decided I didn’t need a hydraulic bed to sit up and read. I sat myself up, using my arm strength, so I was “circle sitting” (sitting cross-legged) on the bed, and read The Onion.

Then I thought to myself, I wonder if I can do the same thing, set up my PC, etc., entirely on my own body power?  Turns out, I can.  Hello, Internet!

February 2nd, 2013:

For some reason, I could not sleep this morning. I was up at 3:45am, and could not fall back to sleep. The result was that I was really tired today! I MEAN REALLY TIRED. Thankfully, it was also my day off from therapy this weekend, so I was able to relax. My wife and son came in, and I spent a lot of the day playing darts, pool, air hockey, and card games with my son, Alex.  All of these games are a bigger challenge when you’re in a wheelchair, but we still played.

At dinner time, my brother Tim and his fiancee Cree surprised me by joining us for dinner. They drove all the way from Stevens Point, WI, just because they craved hospital food.  :-)

Unfortunately, I wasn’t very good company, I kept dozing off because I was so tired.

Scott’s Start on the Road to Recovery

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Life can be very strange sometimes.  On Sunday, January 13th, I was so weak that I needed to take a nap after eating half of a bowl of rice krispies.   Think about what a strange symptom that is.  I was in the Neuro ICU at Froedtert Hospital in Milwaukee, and my nurse called the doctor urgently.  They decided to do emergency surgery that ended up saving my life.  They knew that it was necessary, in part, because I could not eat a bowl of rice krispies.  Life is strange.

My surgical procedure ended in the wee hours of Monday, January 14th.  Since it was so late, the staff decided to ensure I’d be able to breathe by leaving me on the respirator.   When they woke me up in the middle of the night, I immediately hated this machine.  I started to struggle and fight the machine, and they sedated me.  Wise move.  Thankfully, I did not feel anything more until the morning.

And that marked the end of my decline, and the start of my recovery.

I must admit, I don’t remember too much about the next two days.  I call this time my “black fog.”   I was conscious, and was able to talk and so forth, but I was so tired and weak that my brain was losing details.   You know how easy it is to forget what you’re doing when you’re over-tired?  Well, I was in the ultimate stages of overtiredness.

At the same time, a peculiar thing was happening to me.  Somewhere deep within all of us, is something I like to call “the angel within.”   Other people might refer to it as your soul, or your true essence.  It’s the part of you that really defines who you are, without any defenses or walls put up.  It’s something like a young child, very vulnerable, but also very raw and powerful.   My angel has come out twice before in my life that I can remember.  The first time was when my Mom died in a car accident in 1997 – it helped with the grieving process, but soon hid back behind defenses.  The second time was when my son was born in 2005, but in this case, it was focused on only one person, my son.

So here I am, I have barely survived, I am extremely weak, and I am paralyzed from the waist down.  Now my inner angel has come back to the surface and taken control.  It has given me pure, raw determination, suffused with hope, wonder, and inspiration.   Isn’t that amazing?

If you think of what I’m going through, I really had two possible choices of how to face the long road of recovery:

  1. I did nothing wrong, and due to a freak growth of blood vessels, I’m now paralyzed from the waist down.  I can cry, complain, and feel sorry for myself.
  2. I can be happy.  I can feel lucky to be alive, work really hard, and get better every day.  I can view everything as new puzzles to solve, new challenges to face.  And live my life 110%!

The “angel” had chosen #2.   And if you think about it, it’s really the only choice.   Why would I want to be miserable and unhappy?  Why would anyone ever take that path?

And yet, every day I meet more fellow patients who have chosen that first option. They do the minimum amount of work they can to get through rehab, and they complain about it.   Not me.  I’m giving everything 110%!

From here I will list the posts that I wrote to my friends, each day telling my progress.

January 20th, 2013:

Physical rehab is really hard work. But, I’m amazed at how wonderful the human muscles are.  Working them to exhaustion not only makes you feel stronger and better, but it also gives you energy.   I repeat – exhausting my muscles gives me energy!   Wow, does that feel good.

Right now, I’m able to make my legs twitch.  That’s not much, but it’s a little more than I could do before. It gives me hope that maybe I’ll get them working again! My arms (which never stopped working) are getting very strong too — because, for now at least, I need to learn to live without using my legs.

In addition to weight training, the therapists have been working with me to learn how to transfer to and from my wheelchair. We are using a device called a “beasy board”, which is a circular seat that slides down a channel.  I get my butt on that board, and push it over to the wheelchair.  It’s very difficult, and sitting in the wheelchair is exhausting.  Who thought sitting up would be tiring work?  Isn’t sitting something you do to rest?

Every day I feel a little bit better.  Look out world!!

January 21st, 2013:

Today, I’ve found my balance to be much better. It’s easier to sit up without falling over. My arm strength keeps getting better, too. From a gym mat, I can now pull myself up to a sitting position with my arms. I actually surprised my therapist with that one. She wasn’t expecting me to be able to do that.

Dr. Lazzaro, the doctor that saved my life, stopped by and explained the procedure in detail to me. He provided some pictures of the actual fistula as they could see it.  This man is very good at explaining things, and is very patient.  I understand the gist of it, but it’s extremely complicated stuff.  I’m very grateful for him. This guy is absolutely brilliant.

There was more therapy in the afternoon.  I kid you not, this is extremely hard work, but I’m really feeling good about it. Thanks so much for all your encouraging words!  They are really helping me keep my spirits high, and giving me the spirit to win this thing!

January 22nd, 2013:

Great day!  We had a team meeting for the first time today, with my therapists, doctors, nurses, and quite a few other people (vocational counselor, psychologist, social worker, all sorts of people.) Everything went great with that.

I feel very lucky.  Is that weird?  Because I do.   I feel wonderful, and I’m having a great time. It almost makes me feel guilty.  Here I am, supposed to be miserable in the hospital, and I feel great!

My wife added the following note to friends and family on January 22nd:

“I watched Scotty do his PT for an hour before we went to the meeting.  When the therapist asked him to do 10 reps of each of a few different things, Scotty did 40 of each.  He’s so determined to get strong and get everything out of therapy he can!  I’ve never seen him more motivated in my life!  I’m so proud of him!”

January 23rd, 2013:

Today’s report:  I guess the therapists are fighting over me. I was told by one of them (who was filling in, and trying to figure out when she’d be able to see me again) that the therapists fight over the “good patients”, i.e. the ones making a lot of progress, and with a good attitude. She said, with dismay, that the ones who have student helpers tend to get the good patients like me. C’mon, people, there’s enough of me to go around!

My wife adds:

“He did more transferring, and upper body strengthening, as well as learning how to transfer to a chair that will go in the shower. Tomorrow he will get his first official shower at Froedtert Hospital.  He’s had sponge baths and such, but tomorrow is a shower with Angie!  And no, I’m not jealous.  In fact, they invited me to be there if I wanted.”

January 24th, 2013:

Today, I took a shower. It was the first one in 19 days and  with real water.  You may be saying “big deal, that’s normal. Everyone does that every day.”  No. You truly don’t understand how a real shower with real water is a great, great, great thing. It’s quite possibly the greatest invention of all mankind.  Next time you take a shower, enjoy it. Savor it. Remember how wonderful it is, because they are the best things ever.  I may even decide to write poetry about this.

I had a somewhat lighter workout in the gym today because of the time devoted to the shower, and also a wheelchair assessment meeting. They took lots of measurements and discussed many wheelchair parts with me, to figure out what sort of rig to get.  Since I’ll be spending an awful lot of time in one, they wanted to get one that’s perfect for me.

Finally, to blow the lid off of the day, some friends stopped by, brought pizza, and we played cards. It was great. When something like this happens to you (though, I really hope it never does) always remember that life doesn’t end. You can still live it up and have a great day. A simple pizza and card game goes a long way.

January 25th, 2013:

Therapy today went really well. I basically dressed myself without much help at all. Transfers to/from wheelchair are getting easier, though still pretty hard. I’m really excited that I will master this skill. Weight lifting and strength training went really well today, and I think I made excellent progress , though, I must admit, I’m really tired. We also had some recreational therapy, where they challenged me by adding weights to my arms, while doing recreational things.  Today, my son and I played on the Wii for this therapy. He was thrilled to be helping, and I had weights on my arms, but still enjoyed playing video games with my son.  It was a great day, and the therapists let it run extra late because they were enjoying working with my family.

It’s non-stop action here. Every day, between medical, therapy, and visitors, there’s always something going on. And you know what, that’s exactly what I wanted. I want to live life 110% in everything I do! And I suggest the same for you. You never know when life will change, so  find something you enjoy, and don’t let little problems or distractions ruin it for you.  Live!

January 26th, 2013:

Today was my day off (for the weekend) from therapy. I wasn’t completely lax, though. I did a lot of self-propelling my wheelchair to get some exercise, and did some theraband exercises that the therapists gave me for homework. Honestly, it made my body feel better. When I wasn’t getting any exercise earlier, I didn’t feel as good.

My brother and my sister-in-law-to-be (who I’d like to just call “sister”) came in from Stevens Point, and spent almost the whole day with me. They bought me a birthday gift (my birthday is Monday, but we celebrated today), a D&D Castle Ravenloft board game, which my brother and I played.

In the gym, there’s a recreation room that we were able to use.  There was a little game table with mini-foosball, mini-billiards, and mini-air-hockey, that I played with my 7-year old son, Alex.  There was also a dart board.  They have tables suspended from the ceiling, but one was down and that’s where we had dinner together. It’s much better than trying to eat in the patient room and more space to sit and chat.

It was a relaxing, and good day. Tomorrow, I will go back to “real” therapy.

What Happened to Scott Klement? The “Injury”

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Hello Folks!

For a very long time, I’ve been extremely active in the IBM i community.  A leading developer, speaker, author, and participant in online forums, e-mail lists, and so forth.  Then, at the start of 2013, you stopped seeing me.  I seemed to drop off the face of the earth.  Many people have written with concern.

Let me tell you my story of what happened.

It was Saturday, January 5th, 2013.  I woke up in the morning, and stood up and found that my legs were very weak, wobbly, and unsteady.  I had been feeling run down and low on energy for 2 months, and had seen many doctors about it, but they didn’t find anything wrong.  I had been to the emergency room twice prior, and they told me I was just tired.  I wasn’t sure what to do, now!  After all, my legs weren’t working right, but I had already tried to get help.

I phoned my doctors office, but being a Saturday, of course there was nobody there.  I paged the on-call doctor (who wasn’t my regular doctor) and asked her what to do.  She said “have you felt this way before?”  I said no, normally my legs work fine.  She said “go to the emergency room.”

I was able to walk, carefully, leaning against walls, desks, etc, into the emergency room. The doctors checked me out.  “There is nothing wrong with you, sir.  Go home and rest. You are just tired.”

I insisted that they check me out.  I insisted that they at least do an X-Ray or something!!  I mean, I could barely walk, and it was getting worse as the day went on. I was told by a doctor to be here.  You can’t just send me home saying I’m tired again!!

The doctor eventually said she’d humor me and tried blood test, urine test, X-Ray and CT-Scan.  But, again, found nothing wrong.  These tests were not finding the problem, and the staff was saying that this wasn’t an emergency.  I convinced them to at least wait until my on-call doctor had examined me.  She turned out to be a very thorough doctor, and she noticed some problems, but didn’t know what the cause was.  After about 8 hours, in the E.R. my legs failed, I could no longer stand. I discovered this when I tried to stand, my legs collapsed, and I fell to the floor. The doctors then decided there was no choice but to admit me to the hospital.

I remained in this hospital for four days while they ran a gamut of tests on me to try to determine why my legs suddenly failed.  They tried a lot of different tests, including one that applied electric shocks to all of the nerves of my body, and used accupuncture needles to listen to the movement of all of my muscles.  They still did not find anything wrong.

The test that finally helped was an MRI.  I had to be sent to a different hospital, 30 minutes away, to use the MRI machine there, since the one at my hospital wasn’t up to the task.  I was scanned for 2 hours, and my results were checked over by a brilliant MRI tech, and two neurologists.  And they still very nearly missed it — but they did find something strange.

Blood was not flowing in the proper manner. The MRI wasn’t able to accurately detect where it was, or what was causing it, but the doctors diagnosed it as an arteriovenous malformation (AVM).  This means that blood from an artery is flowing directly into a vein, skipping the capillary system, and causing an unusual amount of pressure on the vein system.  This was a breakthrough, they had found something wrong!

It’s also a very rare and unusual problem.  This hospital I was at did not have the expertise to work with this problem.  This is the sort of thing you go to a special hospital for (for example, the Mayo Clinic works with this sort of thing.)   I was extremely fortunate that there’s such a hospital in the city that I live in — it’s called Froedtert Hospital, and is one of the best in the country.  By this time (January 9th) , I was in the charge of my regular doctor, but he strongly recommended transferring me to Froedtert (where he could no longer be involved) to work with experts.  He had connections with the head of neurology, and was able to put me in the charge of one of the best neurologists in the country.  I am very lucky!

So I was transferred to a new hospital.  To determine the cause of my problem, they did a medical procedure that involved inserting catheters into my arteries, feeding them through my blood system, and squirting dye that they could track with radiology to find where the blood flow was abnormal.  They discovered the AVM in the back of my brain.  It turns out that the AVM was somewhat severe, and had formed a fistula (with a sinus-like system) that was drawing blood from multiple sources.  To fix it, they’d have to get into it deeply and embolize it (I’ll explain “embolize” later.)  If they missed the spot, I could die or have a stroke.

Unfortunately, they could not reach the fistula.  The arteries spasmed up on them, and locked them out.  They decided it was not safe to proceed, and put me into the Neuro Intensive Care Unit.  They decided to confer with other doctors and experts to see if maybe there was a better way.  This procedure began about 8:30am on Friday January 11th and took about 8 hours.  Afterwards, I was too weak to do much but sleep until Saturday morning, anyway.

Since it was now the weekend, the doctors they wanted to confer with were not available immediately.  The plan was to wait until Monday.   But, on Sunday, January 13th, my health was failing.  Eating breakfast overwhelmed my strength.  The ICU nurse contacted the doctors, and they agreed that I could not wait until Monday, I may not make it.  They scheduled an emergency surgery for Sunday night that took 5 hours, and ended after midnight.  This procedure was successful.

What they did was find a path through the artery system, a very complicated system of blood vessels in my body. It involved twisting and turning a wire through arteries that snake and twist like ramen noodles through my body.  When the wire reaches the right spot, they slide a catheter over the wire through the arteries to the right spot.  Once that’s in place, they remove the wire, and can squirt dye, tracked by radiology, to see that they’ve found the right spot.  Once they have the right spot, they can “embolize” the problem, which involves filling up the fistula (including the AVM) with permanent glue, sealing it up.

They saved my life.

But after that, I was extremely weak.  The fistula had sapped so much strength from my body that I nearly died.  But the worst part is that the pressure in my veins had swollen down my spinal column, paralyzing me from the waist down.  I was now paralyzed from the waist down.  Very much like a paraplegic, with one key difference — it’s considered an “incomplete” injury.

So that is my “injury.”   Unlike all of the other spinal cord patients around me, who were in car accidents, or fell out of windows, had gunshot wounds — nothing happened to me.  Just some blood vessels that grew together the wrong way.  A weird freak problem that could happen to anyone — but, thankfully, is extremely rare.

It really makes you think about how fragile life is.  Life is a gift, and you cannot take it for granted.  Now I will rebuild myself.  Every day, I will get stronger.  Every day, I will get better.

Note: I will be posting updates as I progress.  Please check back each Sunday (and maybe some days in between) for the latest news!!