blog

Sometimes it Feels Like too Much

Wed, 25 Apr 2012 14:25:18 -0500

I met an unusual young man last week. I went to his house to evaluate whether we could provide an accessible computer system for him. His home is clean, his family is financially poor, and the rental house they live in needs a lot of work. The young man doesn’t have a good education. To make matters worse, he was shot while riding in a car and is now a quadriplegic. As we talked about his goals he told me that he wants to sell used cars. He likes doing this and has experience at it. One of his neighbors taught him the strategy he uses for selecting cars, however this neighbor was killed in a separate shooting a few months ago. As we talked and goofed around, I found it very easy to like this young man and his family. They have had a hard life, but they are good people.

Later in the week I was in a discussion with people who are well-to-do (like me) but have an attitude of scarcity. What I mean by this is that they don’t think they have enough and they have to be careful not to lose what they have. As I listened to them I became aware of just how much I have. Not just the “stuff” I have, but the people who are in my corner – people who are generous and caring to me. I became aware of the abundance around me and I was overwhelmed with gratitude.

It is easy to fall into the attitude that there is not enough. When I fall into this trap, I feel small and insecure. I worry. But there is another way of looking at the world without having to change anything. I am not wealthy by most standards, but I have more than enough. And the more I give, the more I have, the bigger I feel, and the more secure I feel. It doesn’t seem logical, but I’m sure it is true. As I give, the people around me give to me, and instead of having less, I have even more! I am surrounded by people who are generous and caring – to InvoTek, to the Be Extraordinary program, and to our clients. I’m not saying we couldn’t use more resources to meet the need – we could. But the people around me enable us to achieve the extraordinary. I can focus on what I don’t have and be small, or I can focus on the abundance and feel gifted. It is really my choice.

Thanks to all of you who have given me so much. And yes, we have enough to give to the young man I met last week. We really look forward to working with him.

Open Dialog

Wed, 21 Mar 2012 09:43:26 -0500

To quote Monty Python, “And now, for something completely different.” Instead of posing a thought, I’d like to describe a situation and get some direction.

I’ve recently been asked to join a task force looking at ways to improve rehabilitation care for people with severe disabilities. Everyone in the group is a professional in this field. Two of the members use wheelchairs.

During the meetings people have asked about my recent marathon race. How did I do? Were you sore the following week? Normal questions you would ask a runner. And, yes I did ok (I finished), and yes, my legs were painfully stiff for a couple of days after the race.

So here’s my quandary: I want to be responsive to their questions but I don’t want to offend those in the room who no longer have use of their legs. I don’t for a minute take for granted the gift of running or even walking and am grateful for sore legs after exercise. Bottom line, though, I want to be sensitive to others who cannot walk.

I’d like to hear from folks who use a chair. Do I tactfully change the subject? Or do I continue with the conversation but watch for cues from those in chairs to see if they are getting uncomfortable?

Thanks for your feedback!

Contributing

Fri, 09 Mar 2012 13:42:27 -0600

As I’ve grown up, I’ve felt this growing urge to contribute, to be an adult, to be responsible. I finished college and completed my Master’s degree and hit the terrifying world of job searching. As a disabled candidate, the market is somewhat limited.

As I continue searching to find someone willing to take a chance and let me prove my disability won’t hold me back from succeeding, I’ve started realizing that it’s very important to me. I want to feel that I’ve earned an honest income and contributed to my household responsibilities. Thanks to InvoTek, I have resources to help me search for more opportunities and help provide the necessary technology to ensure my success in the field that I find employment. I’m excited about the possibilities that the future may bring. However, now I wonder, is my longing to contribute simply human nature, a personal hope for success, or just a “guy being a guy?” Stereotypical as that sounds, I realize it’s a possibility. I like to tell myself that I’m looking to succeed so I can prove my ability and share responsibilities. As I faced my injury, many obstacles presented themselves. I’m the first to admit that I struggled with many of them but I pushed through because I had so much support and truly felt I could make it. Now, I find myself facing this obstacle of finding employment and many times I’ve wanted to just say, “Forget it! I’ve accomplished enough.” But then I stop and realize that if I give in, then I’ve let myself fail and that I’ve failed everyone that is supporting me and that strengthens me and helps me push forward and search for success. No matter the reason, finding employment and contributing to the responsibilities of life are my #1 priority now and I won’t quit until I’ve accomplished all I can.

People First

Mon, 20 Feb 2012 12:07:43 -0600

Last week I had the chance to visit several people involved with disability. I met with gracious doctors and therapists from a leading rehab hospital, I spent time with the self-giving mom and caregiver of a young man with quadriplegia, and I met some new people too. All positive experiences for which I am grateful.

I also had a good learning experience. It wasn't a positive experience and I didn’t handle it well. I hope that by telling this story you’ll do better than I did.

In addition to the positive visits, I also visited a client who is struggling. He is in a transitional (for him) nursing home that isn’t a place where you or I would want to spend time. The smell of urine wafts through the hallway, staff stands in the corner gossiping, and residents are aimlessly scattered throughout the halls. When I visited there it was late, and I was tired and uncomfortable. I kept my head down and made my way to my client’s room.

When I found the room, the door was propped open and there was an elderly man, essentially naked, within view of anyone who walked down the hall. I knocked on the door, because I didn’t know what else to do, and called out my client’s name. My client answered from the back of the room, so I put my head down and I walked past the elderly man.

I spent about 45 minutes visiting. During that time two staff members came to the room to check on the elderly man. I thought they were re-situating him so that he wouldn’t be so exposed, but when I walked out, he was still nearly naked, clearly uncomfortable, with the door propped open. I walked by again.

This isn’t a story about how “they” should be treating him better – I can’t really know what was going on. It is a story about how I should have treated him better. I tried not to look at him. I was uncomfortable around him. I failed to treat him like a human being. For this I am ashamed, and that is not too strong of a word.

As I get older, I realize that guilty feelings are only valuable if they help me to change. I have a plan, a way to prepare myself so that I don’t fail again to treat the most vulnerable among us with respect. Before going into places like this, I will remind myself of the inherent dignity of every person. I may not be able to change how someone is being cared for, but I can control how I treat them. I will look at each person, I will smile, I will greet them, and if they respond to me, I’ll interrupt my plans, slow down, and be respectful. Everything else must be secondary – because if it isn’t, I'll lose sight of what is most important, which is always people. My schedule and comfort can wait.

I hope that you'll let these things wait too. I know of at least one guy that would appreciate it.

The Voice of Experience

Thu, 12 Jan 2012 07:59:54 -0600

Tom, looking at the responses from the Christmas blog, one realizes how just being able to write a few lines about situations that pertain to living life to the best you are capable of; blesses and encourages others immensely.

You know that when you experience such a life changing situation, you can either accept it and do all that is in your ability to do as much as possible to regain the independence you are capable of; or you go into a depressive state, shutting out everyone and everything.

Every day living becomes a challenge. The unexpected becomes the normal routine. You and your caregiver can try to establish a set routine, because it is drilled and reinforced to keep consistency in your care and lifestyle as much as possible. Between the necessary equipment, doctor appointments, and just mundane activities, circumstances arise that alter your routine and this becomes the norm.

You know everything in life requires you to contribute something in order to obtain something. In other words, what you put in is what you get out. Living life with a disability is no exception. How you deal with your situation and the people around you directly impacts how you are approached and treated. You can be positive, informative, courteous, and those around you will try to do anything possible to help in any way they are able. Or you can be negative and no one wants to be near you or assist you with anything. You should not take anyone for granted, especially your caregiver. This took me a year or more to realize, as my wife is my caregiver. But a simple thank you or I appreciate you can go a long way. Another learned lesson is to call for your caregiver only when it is something that cannot wait, (the expression “patience is a virtue”), is possibly the best thing I have learned from my disability. Many benefits, equipment, and even assistance has taken some time, effort, and persistence to acquire. But, it has reaped many dividends, including some items and equipment that we never would have even known about.

So hang in there, keep pursuing your goals and needs, (respectfully, but persistently and determined), and it may take time; but you will more than likely receive more than you ever expected.

A Cup of Water

Mon, 09 Jan 2012 12:36:49 -0600

Blogging is a funny thing. Sometimes a topic comes up and I think “nah, I don’t want to write about that.” But when it keeps coming back, eventually I give in.

I don’t think anyone will be surprised to find out that InvoTek is a small company. Lately the question that keeps coming up is “given the enormous challenges facing people with severe disabilities, how can InvoTek (and me in particular) think that we can make a significant difference? Aren’t we just too small?” It is a good question. InvoTek does a lot of things. We do research on new computer access technologies for people who can’t use their hands, we are developing new communication approaches for children who don’t speak, we are developing a simulator to help caregivers do a better job of dressing elders with dementia, we make products, and we have the Be Extraordinary program. We don’t do any of this on our own— we work with experts all over the country – but still, isn’t it impossible to really make a difference? My answer to this question is a story told to me a few years ago.

Back in the 4th century there was a hermit who lived in a cave. He was renowned for his wisdom and purity of spirit. A city dweller kept coming to the hermit asking him to be his mentor. The hermit resisted, but eventually gave in. One of the tasks he gave to the seeker was to bring a woven basket to the cave. The hermit put some sand in the basket and told the seeker to pour a cup of water into the basket every day.

The seeker thought this was dimwitted. Nothing was happening. It was a waste of time. He kept questioning the hermit about it, but the hermit told him to continue. After several months of pouring a cup of water every day, the seeker came back to the hermit with an empty basket. All the sand had been washed away, and in the process, the seeker found the wisdom and the spirit he was looking for. The lesson was that nothing of real value happens quickly, one has to be patient and trust that perseverance (and humility) will eventually achieve the goal.

I hope that InvoTek and Be Extraordinary are an occasional cup of water on the mound of challenges that our clients and customers face. As we do our day to day work there doesn’t appear to be much happening. We constantly question whether we are doing our best to make a difference. But as I look back over the past year I can see a dent in the challenges, so I think there is hope and that we might be on the right track.

I think all of us struggle to know whether we are going in the right direction with our lives. I am grateful to the people who question me – it comes from a sincere desire to help me and InvoTek – and it helps to keep us focused and to point out where we can do better. Together maybe someday we’ll see an empty basket, but if not, I can’t imagine a better way to spend 2012 than trying to be a cup of water.

Happy New Year to all of you!

Christmas Reflections

Mon, 02 Jan 2012 15:33:27 -0600

You know that Christmas is a great time for family and friends to get together. In Julie's and my case, we cannot have family or friends with children in. The Christmases that we’ve had the children and grandchildren in, I ended up in the hospital with pneumonia. So, we have to have the family in only when the weather is warm. I am not sure how this affects the other quadriplegics, but some of my difficulties could be with my age.

But Christmas is also a time for reflection, and we have much to be thankful and look back on. We started the year off with decubitus (bed sore), from a sling tear that had an infection under it. The initial size of my wound was 4.6 mm wide, 6.7 mm long, and 4.0 mm deep. With the weather we were unable to make two doctor appointments. By the time we got to see the doctor, we were referred to a Wound care specialist. I am so glad that we went to the specialist, it was Dr. Kristen Battles at Sparks Wound Care Clinic. This doctor is not only a very good wound care expert, but is also well researched in the insurance benefits and coverage of each patient. Thus, you get the best quality care that you are able to receive with maximum benefit usage of your insurance. With her professionalism, my healing time was seven months. This is an exceptional time for a wound this size to heal, with no grafting to assist in the closing of the decubitus.

I am also, so thankful for the benefits and assistance that we received from the VA. We were given more aide assistance care hours to help with all the extra care required. You know that if you are eligible for VA benefits, you really have to fight to initially get them, but if you pursue them diligently, and not give up; there are many different things available that most veterans are unaware of.

I cannot forget to mention or recognize the care, attention, and devotion that my wife had to step up to in my personal care to be a major role player in this. Caregivers are extremely overlooked, taken for granted, and hardly ever thanked or appreciated. I am so thankful to God for giving her to me, I cannot put into words my gratitude, or love.

I am thankful for InvoTek and the entire staff for all their dedication and hard work that allows many of us to access the computer. It gives me the ability to stay up to date on current events, news, and also gives me the ability to further my education.

Breakfast at D's

Mon, 05 Dec 2011 19:28:56 -0600

I live in a small town of 4,000 people. I like it. Last weekend Diane and I went to a local diner attached to an old motel. It is the kind of place where guys in their 70’s and 80’s sit, play dominos, and harass each other for several hours each morning. The breakfast is good and as we waited for ours, I overheard a man at a table by himself complain to the waitress about the $6.50 cost of the breakfast buffet. He said that he couldn’t afford that – it was all the money he had for the whole day.

A man at another table, better off than the first but by no means wealthy, began a conversation with the first man. They obviously hadn’t met before. As they talked, the second man offered to buy breakfast. The offer was initially rejected, but they kept talking and eventually both of them enjoyed a hearty meal, talking together.

This isn’t so unusual where I live. People genuinely care about their neighbors. Oh sometimes you hear a horror story but it is the exception. Most of the time, people care.

The guys finished their breakfast and it was time to pay the bill. The generous guy went to the register only to find that someone else, also a stranger, had already paid for both of their breakfasts.

This time of year is special to lots of people. It is special to me. And on any given day, if you pay attention, you’ll see people who struggle to make it through the day and people who are willing to treat a stranger-in-need like he is important, because he is important.

That is what I hope InvoTek is about. And as you can see, in my little town, we are not unusual at all.

Joy and Sorrow

Mon, 05 Dec 2011 13:09:24 -0600

As we approach the holidays, I find myself with mixed feelings. I’m excited about my recent engagement to a wonderful man, and I’m looking forward to spending time over the holidays with our children and grandchildren. However, I am saddened that my time with InvoTek is coming to a close. My upcoming marriage means that I will be relocating to NE Arkansas, necessitating my leaving InvoTek at the end of January. Joy and sorrow mixed together!

My year at InvoTek has brought new and amazing people into my life. Every one of my clients has been special…really special! There has been much laughter and a few tears (mostly of joy). I have made many new and special friends. I have been amazed by the challenges and obstacles that our clients have, and continue overcome. I have witnessed some of the biggest smiles that I have ever seen.

There is a saying on the wall in our office: “Not being able to speak is not the same as not having anything to say.” This was brought home to me over the years while caring for my George, but working with Be Extraordinary clients has re-emphasized it time and again! I have learned that I take communication for granted, more than I realized.

I have met family members/caregivers that truly give “CARE” new meaning! I have met extraordinary people in the community who worked together to help meet the needs of a stranger.

I have enjoyed time spent with Tom, Barret, Shawn Adair and John Riggins during our many, many hours on the road to visit our Be Extraordinary clients over the past year.

Despite being sad about leaving InvoTek, I am overjoyed by what I am taking with me. I have friendships, lessons and memories that will be with me forever.

If anyone is looking for a great part-time job, call Tom. It seems wrong to call it a job, because it is so much more! I have truly been blessed!

Being Like Everyone Else

Tue, 29 Nov 2011 10:27:06 -0600

This is the time of year we reflect on being thankful, in fact I am writing this on Thanksgiving day. I reflect often that I am thankful for a lot. Even with a spinal cord injury the number of things I can do is more than the number of thing I can't do. I live independently and find ways around obstacles. Fortunately there are laws that try to reduce the obstacles we have to confront.

Every once in a while I come across AB (Able Bodied) people of good intention who have a utopian idea that people with deficits should be treated “just like everyone else.” It would be nice to live in a world were my deficits did not matter and I could be treated “just like everyone else.” But the reality is I am not just like everyone else, and thinking that we'll be treated like we are avoids the hard questions that we need to ask of each other, and the decisions those questions compel.

For example, last month there started an interesting situation playing out in New York, which you can read about here. The city is being sued for having taxis that aren't accessible. Mayor Bloomberg thinks a different solution could work... Now I could say so many things about so many aspects of that particular situation but I am trying to stay thankful, thankful, thankful...

So let me get back to why is it that people have an idea that people with severe deficits are going to be treated “just like everyone else?” We with less severe deficits have to struggle to get from point A to point B, and work through the push back when trying to do it in the same manner others hire conveyances. In the Chicago suburbs, I have called for a cab and know for a fact the driver just went by me when he saw I was in a wheelchair rather than stop and get my chair in the trunk. (The dispatcher gave me the cab number when I called and I watched the cab with that number go by). And it has not happened just once to me, but multiple times.

So if cabs that are accessible to me won't stop for whatever reason , what are the chances that an accessible cab that could pick up AB's will even stop to pick up someone in a power chair? We need more than accessible equipment and place we can go. We need to teach people that there just might be something more important than making their own lives as convenient as possible. I doubt that many people can even see that as a problem, let alone be willing to work towards a solution.

I am truly thankful for all I can do. I would be even more thankful if people would look for ways to remove barriers. People who say that people with deficits should be treated “just like everyone else” have a great goal. But they are not removing barriers, they are keeping barriers in place if not erecting new barriers.

Guilty Lessons for Success

Fri, 04 Nov 2011 19:47:28 -0500

As I was reviewing our Be Extraordinary program on our one-year anniversary, I was pleased that all of our clients with technology are making good progress. You might say “duh Tom, isn’t that what’s supposed to happen?” Yes, but the reality is assistive technology often doesn’t have the intended impact. Here are the lessons that I’ve learned from Be-X:

Be patient. Life for people with disabilities is not the same as life without disabilities. Unexpected interruptions like medical complications and hospital stays are the norm.
Stay in touch. We make a concerted effort to stay in touch with our clients. We strive to know when they are struggling physically, when they are struggling emotionally, and when life is going well.
Be responsive. We can’t install equipment on our schedule. We need to be there when the timing is optimal for our clients.

Doesn’t sound all that insightful, does it! But nearly every organization I know is focusing on being efficient, and the above is not efficient. Be-X requires a different model, one based on relationship.

I think the three points above are good advice for any relationship -- being a parent, a spouse, or a friend. But being an organization based on relationship is "out there". There is so much pressure to be efficient, even when it doesn’t produce good results. And building relationships is hard work for everyone involved, including our clients and the family members who care for them. Who has time for this? Who can afford it? We all have too much to do. And then there is the biggest problem of all – guilt.

Almost every caregiver I talk to lately starts our conversation with “sorry”. Sorry I didn’t call you back quickly. Sorry I haven’t done better. Sorry I can’t meet on Thursday. And to be honest, I usually feel guilty too – sorry we didn’t get that new software finished yet, sorry that there is a cost. The list goes on – and it needs to stop. I know you are doing your best. So am I.

What do you think about having a moratorium on guilt? Let’s give each other the benefit of the doubt. If you don’t call me back immediately, my assumption is that you are doing your best with the time you have. When something doesn’t get done, I’m assuming you did your best. You have nothing to be guilty about; you’re doing your best. I hope you’ll do the same for me. Let’s share our lives as best we can, with no “sorry” needed. Deal?

Lightning Bug Road Maps

Mon, 24 Oct 2011 14:29:10 -0500

The Be Extraordinary team met recently to review the program’s first year and plan for its second. As we looked back, what we found surprised us. It was no surprise that we worked with more clients than we had planned, nor that dozens of people encouraged us through donations and other types of support. What surprised us is how we got there.

We knew going in that the path we’d laid out for Be Extraordinary would change. What we didn’t know was how radically it would change. We met people and organizations we’d never heard of twelve months ago and they in turn connected us with others. It was an amazing trajectory, almost like watching a lightning bug get from point A to point B.

Here are three imperatives I learned from this past year:

• Be flexible – the journey is non-linear, which is a tough pill to swallow for a bunch of engineers. We like logical processes, where you complete one activity and the second one begins and each activity builds neatly on the preceding one. Life, especially life dealing with a disability, is anything but linear. The team was open to new paths and had faith those paths would get us closer to our destination, which they did.

• Be tenacious – the Be Extraordinary program is a difficult concept for some people to grasp. We have to tell our story repeatedly to various audiences and at various times to get through. A great example is with a potential product distributor. We made numerous contacts with the distributor but could not get them interested in carrying InvoTek products. One day, a customer of that distributor called and asked if he could buy through the distributor. We told him of our experience. He contacted the distributor and in days we had a verbal agreement for them to carry our products. Had we given up earlier, we never would have begun this new relationship.

• Be patient – tenacity and patience are two sides of the same coin. Tom recently began meeting with staff of a major hospital to see how InvoTek could assist their patients. However, hospital procedures threatened to stop the relationship before it got going. After backing off for a few months, those problems somehow worked themselves out and now Tom and this hospital are working closely with rehab patients. Knowing when to push and when to wait is an art.

What I learned from this is what I imagine people living with a severe disability already know: while you can plan your destination, you can’t predict how you’ll get there. It is a privilege to be on this journey with such amazing people.

First Words

Tue, 11 Oct 2011 10:21:01 -0500

We've been working with a new family. Billy had a brain-stem stroke back in December of 2010. His disability is so severe that none of our technology worked for him. I talked with our clinical experts and there doesn't appear to be any equipment available – anywhere – to help him. This guy is hard. Really hard.

When we met Billy a few months ago I thought we’d figure out how to help him – yet week after week we failed. We just couldn't find a reliable way into Billy's mind. His body was too uncooperative. I started to worry that we would fail him.

When we finally figured out (with the help of Billy’s speech pathologist and family) that Billy can purposefully move his jaw up and down a little, we also found out that his field of vision is very small. Billy’s eyes don’t move left or right, just up and down. He has trouble keeping them open. This complicates things more. I started to have serious doubts that we could help him.

We had to rethink everything. We can track Billy's minimal jaw movement with AccuPoint, but our standard software is much too complicated. Erik started to design some simple spelling interfaces. A research group that we work with (the RERC) allowed us to use grant money to create new minimal movement interfaces for people like Billy. And then it happened! Billy wrote his first words using his jaw movement. First “cat”, then “dog”, then “hello”. No mistakes, but very slow. It takes him about 10 seconds to write one letter. We made some minor software improvements and brought the new version to him yesterday. He wrote “hi dad”. His Dad smiled big and told the folks in the room “I told him he had to write that!” I was so relieved that he could still use Erik's software. People like Billy are so medically fragile that getting consistent body movement over multiple days is not to be taken for granted.

Now we start the hard work of making it easier and faster for Billy to communicate independently. At each step along the way, we’ll send our software developments to our clinical teams and they’ll try to use it with their clients who can’t use any other technology. We’ll learn more, make improvements, and try again. It is a slow process.

So I have been asking myself a question about all of this. Who is helping whom? While Erik is writing the software, I think Billy is carrying the heavy load. He is giving us the tools to help others trapped in their uncooperative bodies. He is teaching us patience. He is merciful to us when we make mistakes. He is persistent. He is hard working. He is vulnerable.

He is teaching us what it is to be human.

Billy’s simple first words might not seem profound to you but they will change the world. They have already changed me. I know who is carrying the heavy load and I am grateful to him for letting me tag along.

The Lost Sheep’s Mom

Thu, 01 Sep 2011 14:16:33 -0500

Last weekend I met several people at the Abilities Expo in Houston that were exceptional. I met a rocket scientist who works 20 hours a week and uses his eyes to slowly type out messages because he can’t talk. I met Nikki who was so excited to find a way to type into a computer more easily. But the person who touched me most deeply was a mom.

Kim talked to me on Friday and told me she would come back with her son if we could get him setup to use AccuPoint. I said sure. On Sunday she returned with her 13 year old twins. Her daughter is a warm, generous young lady with typical physical abilities. Her son is a hard-working young man with a contagious smile and a very uncooperative body. Kim is upbeat, bright, and giggles easily. But her giggle had a nervous quality to it on Sunday. It told me that she has been through a lot over the past thirteen years. In a way that I can’t quite describe, her giggle seemed to be her way of releasing tension. The tension that comes from 13 years of trying new things and being disappointed most of the time. Of having two kids with wildly different needs. Of hoping that this time she’s on the right track and usually finding out that she’s not. She is not discouraged or pessimistic – it is more like she is battle hardened, but still has a loving heart that hopes for a better life for her son.

I don’t remember why Kim started to cry and it was only for a few seconds. It could have been that I disappointed her when I couldn’t give her son a fair trial at using AccuPoint. It might have been Erik diligently searching through our equipment to find a software installation disk, or Barret rearranging our booth, or Jerry holding a computer-mount for several minutes – we were trying so hard to help. It might have been the engineering discussion of how we will change our software to give her son half a fighting chance. Or maybe it was my promise to come back to Houston to work with her son. Maybe it was all of this and more. Whatever the cause, a momentary window into her heart opened and it touched me deeply.

So you ask “what does this have to do with sheep?" Well, I’ve always wondered about the Bible story of the shepherd who leaves the 99 to search for one lost sheep. What causes someone to risk so much to help one? I think the answer is the lost sheep’s mom. She would be one of the 99. I can’t imagine the struggles, pain, and joys that Kim has experienced over the past 13 years. But through her nervous giggle and brief tears I had a momentary glimpse into her world and I can’t shake the memory. We might not be able to help her son but it won’t be because we didn’t try. And if we succeed there will be great rejoicing over this one lost sheep. Hey, I think I’m starting to get it …

Internship Diary Week 8, the Last Week!

Sat, 13 Aug 2011 13:52:30 -0500

This week was my last week of working. I helped put together a laser keyboard. It is a lot bigger than the Voice Switches I worked on earlier. Also, I got to go to meetings about future software plans. That was interesting because I’ve never seen that part of development.

I’ve learned a lot here and have gotten some good experience. Engineering is obviously a large field with many different types of work. I’ve been a part of visiting clients, testing software, and building products. All of this experience is important when you’re like me and determining what you will be doing with the rest of your life within a few years!

It’s also been awesome to help build something that will really help someone else. In most jobs you’re usually providing a service to other people. There aren’t many--in my opinion--in which you do something that is really going to help someone and make their lives a little better.

When I started, I didn’t know much about building electronics and I definitely had no experience in it. Now, I know way more than I did when I started. I probably wouldn’t have gotten that knowledge in a classroom, either.

Working here has been enjoyable and rewarding. It’s been enjoyable because I like engineering and electronics. It’s been rewarding because of what I’ve learned and because I’ve been a part of helping others.

Internship Diary Week 7

Thu, 04 Aug 2011 09:31:51 -0500

I started cleaning up around the shop this week. We got it really clean! It was something different which made it more enjoyable than cleaning would normally be.

Also, I tested new laser keyboard software. This time I wasn’t trying to reproduce a problem; I was just looking for problems. That was better because trying to reproduce a problem was nerve-wracking.

Today, I fixed a switch that wasn’t working correctly. We didn’t know where the problem was, so I used a multimeter (it measures voltage, resistance, and other things) to figure out what wasn’t working. I didn’t really know how to use a multimeter or how to find a bad connection or part. That made it interesting and it was also a good learning experience.

We all need help sometimes

Tue, 02 Aug 2011 13:36:02 -0500

As a wife and primary caregiver to my late husband George, I am all too aware of the physical, emotional and mental stressors involved. I was all too guilty of having the "I CAN DO IT MYSELF" attitude.

All too often, when someone asked, “Is there anything I can do to help?” My immediate response would be, “Thanks, but we don’t need anything.” This was a lie! I was under the false impression that it was MY responsibility to provide ALL of his care. After all, I was his wife AND a nurse. I should be able to do it all. I doubt that I am the only caregiver out there who thinks this way. My whole point in writing this blog is to discourage others from developing or maintaining such an attitude.

Make a list of all the things that you do. Realistically evaluate the items and note which ones don’t really require YOUR expertise. Things like laundry, vacuuming, dishes, errands, organizing supplies,etc. Then the next time someone asks, “What can I do to help?” You can tell them exactly what you need. It will be awkward at first, but it will get easier. State your needs clearly and keep them simple. Over time you will know who can handle what.

Even when we finally had a responsible, paid caregiver I found it difficult to add duties. It took time, but eventually I realized that I could relinquish many of my responsibilities to her. She was, after all, very capable, honest and reliable. This was very freeing!

I never was able to allow friends to help. I should have, not just for my and George’s benefit, but for theirs. He would have enjoyed having someone else to interact with. We all know the feeling you get when you know that you have truly been helpful to another. I was denying others, as well as myself.

We all need help sometimes, and sometimes we need a lot of help. So….if you are the caregiver…let others help! If you are one of the “others,” offer to help someone. If you don’t personally know someone who is a caregiver, I’m sure it wouldn’t take too many inquires to find someone who could use a helping hand. No task is too small. It’s as simple as saying, “I’m on my way to the store, what can I pick up for you?” Or” I know we use the same pharmacy, I’ll give you call next time I’m going and see if I can pick up something for you.”

Be a giver AND a taker.

Internship Diary Week 6

Fri, 29 Jul 2011 15:26:47 -0500

This week I completed the Voice Switches I’ve been building! It was nice to put that final sticker on and put them in shipping cases.

Being done is nice; working on them was getting kind of boring.

What I’ve learned is that a product can be “finished” but it isn’t really ready to be shipped. Many changes can be made to perfect the product and a lot of testing can also be done to make sure the product is as it should be. Problems could be found in the testing and even more changes have to be made.

Currently, I’m putting together handouts for a trade show. It’s definitely a change of pace. I like doing something that’s different because I get to see a different side of what goes on.

Small Wounds, Big Problems

Wed, 27 Jul 2011 14:04:27 -0500

I want to share an experience and information about a wound. Approximately two years, I received a fistula (skin tear), on my right inner thigh and buttocks area from a Hoyer sling. The fistula was treated by the wound care nurse at the VA, and also by a civilian doctor off and on. But it was only being treated when it would bleed. All the treatment did was treat the surface area and get it to close. My wife, who is my caregiver, even pointed out that there appeared to be a knot with the fistula.

Last December 8th, I went to the doctor’s and he found an abscess under the fistula. By the time that he finished removing the abscess, it left a wound 3½ cm wide by 6½ cm long and 4 cm deep. We started to treat this with the standard method of wet to dry dressings. This went on until March 7, 2011. On March 7, he referred me to the Sparks Wound Care Clinic.

On March 10th, I had a bone scan done and began IV antibiotic of rocphin. After two weeks, the doctor also started me on another IV antibiotic of primaxin. I received one dose of rocphin and three doses of primaxin daily until the 19th of April. At this time, I began having side effects with the primaxin. So, I remained on the rocphin, with an increased dosage. I was also on a clinatron bed (sand-air). I remained on the rocphin until June 26th. The doctor also put a wound vac on April 7th.

On June 28th, I went on two oral antibiotics, one for a bladder infection, and one for a staff infection. I had an allergic reaction to the staff infection medication. So, the doctor started me on another oral medication. Upon completion of taking these antibiotics, the bladder infection cleared up, however, not the staff. So, I am now back on the IV’s of rocphin daily. The good news is the wound is now 1 cm wide by 1 cm long by .5 cm deep. Still have the wound vac on.

It has been a very learning experience, all from a sling tear, that is necessary to move us. The reason that the sling tore the skin was caused by two things. First the sling was not being checked to ensure that it was not pulling or putting pressure on the thighs; second, as the longer that we are paralyzed, our skin loses its elasticity due to the atrophy of our muscle tone.

Hope that this is useful information for both people with paralysis and caregivers alike. I know that we have learned a lot from this episode.

Internship Diary Week 5

Mon, 25 Jul 2011 14:45:09 -0500

This week I soldered the final pieces of the Voice Switches I’ve been working on. I’m done with a big part, which is nice, and I’m moving on to a different part of building. Now, I’ve been programming the switches, making sure they work correctly, putting the finishing touches on the internal parts, and starting on getting them into their boxes (packaging).

The somewhat frustrating thing is that not every one of the switches works perfectly yet. The problems can be easily fixed, but they’re still annoying. I’ve found small imperfections can cause big problems, which is a good lesson to learn.

I just started working on completing the packaging. Getting the top cover to fit is not an easy task because getting everything to fit perfectly is hard. A button might be placed just a few millimeters off which throws off everything else. We have to find a way to fix this that usually involves tinkering with the other parts until everything fits.

Within a few days, I should have them finished. It’s an interesting feeling to hold a product that I put together. Even more interesting is turning the switch on and seeing it work. For some reason—I don’t know why—it surprises me that they work! I guess I just kind of doubted myself.