Monday, October 20, 2014

Ebola

I watch the news most nights and for the past several days, Ebola has been one of the featured stories. Discussing how a nurse may have been infected, tracking down people that may have been exposed, and so on. It now sounds like some test antibiotics are being taken from Canada to a few people in Africa. For those that are dealing with this outbreak, I hope the test is successful.

It seems that every few generations has an outbreak of a disease that ends up causing new breakthroughs in medicine. Polio was the most recent one that comes to mind. It was uncertain how it was spread and the effects of contracting it were serious. In the same way, new theories are coming up that Ebola may be spread through the air.

Fortunately, with polio a vaccine was developed that halted its spread. I can't say I've heard of it occurring in recent history. Hopefully Ebola will have similar results in the generation to come.

When an epidemic or crisis occurs, it seems that the regular rules for vaccine testing are relaxed to a great extent. I have an uncle with Parkinson's Disease (PD) and he has been waiting for a new medication to be approved for many years. Unfortunately, for my uncle and thousands of others with PD, the testing and approval process in the US is very slow. It is good to be careful when dealing with medications, but I sometimes think there's a little too much testing. When a drug has been proven affective and not to have major adverse reactions, it should be used. The last part is the tough one though since every medication has unintended consequences.

People have asked me before if I think I will ever walk again. A lot of progress has been made on SCI research, but I honestly don't believe I'll see a fix in my lifetime. If a scientist came out tomorrow saying that he found a solution, the proving and authorization time would likely take as long as I've been injured already. Plus, my bones and muscles are in bad shape after so many years of non use.

In the off chance a treatment or medication came through, it would depend on the situation if I would do it. If it was uncertain to work, and my going through with it would help someone else, then I may consider it. However, if it was a certain fix, and I may delay someone else from being helped, I would be last in line. One thing is certain though, I would NEVER use something like embryonic stem cells that cost another life. A few short years on earth is nothing compared to eternity and answering God on the decisions I made.

That's all I have for this week. We'll see what comes up next time.

Tuesday, October 14, 2014

New Mattress

In early high school, around '97-'98, I started having trouble with pressure sores. Therefore, I got an air mattress for my bed to help reduce and prevent sores. This was a three-cell mattress, head, middle, and foot, that worked pretty well.

This mattress had thousands of tiny holes that continually lost air, so it had a pump that ran continually to keep it inflated. I was very aware when the electricity went out, because I went flat quickly. In any case, I could easily sit in bed and do whatever I wanted and still have good pressure relief. With a few replacement cells, I've used the same mattress ever since high school.

Unfortunately, like a lot of my equipment, it is now no longer produced and I can't get replacement parts. A few months ago, we noticed my butt was really sinking in when I sat up. When I was flat, I resembled a hot dog in a blue bun, making it difficult to do my cares and attempt sleep. For the first time in more than a decade, it was time to get a new mattress.

The first one I received was two inches too long for my bed, so we started looking at what it would take to lengthen my bed. However, after further testing, we noticed the air mattress was not made for sitting, just laying, so it was back to the phone and supply company. The second attempt is now underneath me and working well, at least for now.

Unlike the old system, this one doesn't lose air, so the pump isn't constantly running. The new quiet in my room was nice, but has taken getting used to. The first day I had it my caregiver and I committed that it sounded we were speaking louder. The second major item is that the air continues to move while I'm sitting, or laying.

Every four minutes, the pump comes to life and adjusts the air in various places. At one point, my keyboard will be just right, a few seconds later I find it moving closer or further away and I need to adjust it. I would say it's a good change and should help with my current sores and hopefully reduce problems in the future. My keyboard is going away again, so we'll see what comes this week.

Monday, October 6, 2014

Hit the Ground Rolling

The saying hit the ground running sounds like this week for me, but since I don't run, I'll roll. Today is the only day this week I am not scheduled for something. Several days this week have multiple items per day.

In some ways, this time of year is good with having more to do and being active. However, my tendency to want to stay home and on my computer wants to stay put as well. That's especially true as the temps get cooler. This week isn't supposed to be bad for October in Iowa, low 60's for highs most days, but it's a taste of what's to come.

Colder temps mean layering on more clothes, and going back into footwear. Along with that comes stiffer muscles, more spasms, and being uncomfortable when out and about. One thing is looking up this year, older kids at church.

My dad, another guy, and I have lead junior Cadets for three years now. This year, we just have second and third graders, the same kids as last year. Two have graduated from our group, so we're down to six this year. So far, they are easier to work with, noticeably better at reading and writing and just seem more grown-up. I know it has only been six months since our last meeting in March, but they do seem older. I know the feeling parents have that their kids grow up too fast.

Two kids we have had for the last two years, three years for one, are now in the older classes. I wish I could continue with them and continue to teach, but just as they move on, I have more to instruct in their place. This picture was taken on the night of our first meeting. We'll see how I'm looking in March if I'm able to continue that far.

The next entry will be during a calmer week, and I'll be looking forward to a rest.

Monday, September 29, 2014

Tough Days

There are times that you go from the top to the bottom, and the past few days have been tough, and good as well. Last week, my parents went on vacation for a few days, so I had the house to myself, with my assistants. I didn't do much out of the ordinary, but we all got a break for a short while.

Unfortunately, I learned Friday that I lost another client. I had this particular site for nine years, and considered the head manager a friend. I see her almost weekly at church and enjoyed working with her. However, a few months ago she decided the site needed a redesign and since I was struggling with insurance issues, she went with a competitor. So the last two months, when I've been wanting work and having next to none, I could have been building a new site. Instead, she decided to choose a time when I was struggling to take more work away.

My parents returned home Saturday, and dad was saying he wished he could leave in another week again and go on a hiking trip. However, I have things for church a couple nights, since we're short on hours and he didn't plan, he can't go due to me needing help. Dad has said before he feels like he's in jail because he can't do what he wants, and I feel like I'm the warden.

With everything that has gone on this year, I'm still not certain if I should be trying to stay home. My parents would be free to come and go as they wished and I wouldn't need to worry about making sure everyone gets enough hours in. Being able to work would be nice, but I still have a few clients that I could get a couple hours of work per month.

In October, my calendar is full of sticky notes of activities I have scheduled. Four grade schools I'm speaking at as well as a couple classes of nursing students. For the first time in a few years, I'm also planning to go see a movie in a theater, A Matter of Faith.

Days of joy and happiness are not guaranteed as a Christian, more the opposite actually. I can be thankful when good times come, and learn to trust in God's plan, no matter what, when bad days come.

Tuesday, September 23, 2014

Botox

When most people think of Botox, images of celebrities getting rid of wrinkles come to mind. While this is one use of it, there are other ways it's used.

My Diaphragm Pacemaker System (DPS) has an external box that makes the system work. It connects to a port on my right side, just below my ribs, that goes to the implanted wires that cause me to breathe. This is all fine and good, until something hits the plug on my side. A frequent culprit for this action is my right arm during a muscle spasm.

The spasms are pretty well controlled through other means for the rest of my body, but my arm coming in contact with the plug can, and has, have major problems. I keep a pillow between my arm and side most of the time, but this doesn't always work. That's where Botox comes into the picture.

Botox blocks the nerve signals from getting to muscles. When used for cosmetic purposes, a few CC's are injected to relax the muscles and reduce wrinkles. In the case of controlling muscle spasms, a much larger dose is given, I had 700 CC's injected in the muscles in my right arm six weeks ago.

Using Botox for spasms is common, but it takes six weeks to reach its full potential and needs subsequent booster shots every three months. Since my treatment, I've noticed a great help in reduction of movement in my arm. The times it does vibrate it mainly goes out, not in towards the plug. I can't say I notice any wrinkles in it either.

Sometimes in the quad life you need solutions to unique problems, this is one of the solutions. Continuing to breathe with the DPS with a calmer arm is a great feeling. We'll see what comes next in the quad life.

Monday, September 15, 2014

Movie Review

The number of movies and TV shows I've watched this year has increased substantially compared to previous years. While laying flat on my back, or on my side, it's the easiest thing to do. I have watched a variety of shows on YouTube, UK/US/Australia border security, air crash investigations, and many others, and some through my Netflix subscription. I thought I would take this week's entry to review a couple of them.

First, I'll take a sort of documentary on YouTube produced by Living Waters called Noah and the Last Days. It's about half an hour long and interviews several people on the street about Noah and the end times. I can't say that I disagree with them in their argument, several of the signs of the end times are apparent.

As I've said before, people are turning away from God and Christianity and are calling evil good and good evil. Those that think Biblically are said to be backwards and believing in pseudo-science. Also if anyone speaks out against gay marriage they are said to be hateful and not accepting of others' views.

While I agree with much of what is said, I don't think we're at the end times, yet. Unfortunately, I believe it will get much worse, for Christians especially, as the end comes. I do recommend taking the time to watch the show, it does give food for thought and how to approach people in ways I hadn't considered. The other productions by Living Waters, also on YouTube, are also recommended.

Second on the review list is the feature length film God's Not Dead by Pure Flix. I watched this last week via NetFlix DVD rental. This movie was recommended by a caregiver and was interesting to watch. In this movie, a man is just starting college and is asked to deny God's existence in a philosophy class. He takes the unpopular side and decides to defend his faith in class.

I agree with the main theme of the movie, to boldly stand for your faith and not merely take the easiest path. Going to college can be a tough time for a young Christian man or woman and their faith will be tested, even in some colleges claiming to be Christian.

Unfortunately, the movie takes the stance of God directed evolution and the Big Bang. During his three arguments, our student does use some good points, but with a wrong basis. At the end, his last argument could be shot down by just a few different questions. This is a good film to see how to boldly stand for Christ, but still needs work on the foundation.

We'll see what the next week brings in the Quad Life.

Sunday, September 7, 2014

Month of SCI

Several months of the year have been dedicated to raising awareness for some cause or condition. September is Spinal Cord Injury (SCI) awareness month.

I can easily say that Christopher Reeve has done the most of anyone to raise awareness about SCI. After his injury, the work he did on research and improving quality of life still has impact today, nearly ten years after his death. According to the Christopher Reeve Association, there are about 6 million people with paralysis. That's about 1 in every 50, which means that most people know someone with a SCI or related condition. However, it's still relatively unknown and misunderstood of what's involved.

Injury level is of course a very large determining factor on a person's needs and abilities. It can go from needing complete care including mechanical ventilation, like me, down to having some trouble walking. I have worked with parents of a boy with an injury like mine who initially thought he would be confined to a bed for the rest of his life. I also had a doctor's receptionist think the same in advising that the office was under construction and didn't know if they could fit my bed in through the doorways. Fortunately, with the change in ventilators since the iron lung, that is not the case.

As anyone who reads this blog knows I do a lot in the community, from bed and chair. I am a web developer for multiple businesses and organizations, at my church I'm a deacon, newsletter editor, prayer coordinator, and Cadet counselor. I also give disability awareness talks at schools, and have volunteered as a camp counselor for many years. As I tell the school kids, just because you can't move, or breathe, doesn't mean you can't do things. Many other people with SCIs have families and work full-time jobs to support them. However, as I've discussed here, the life of SCI is not easy.

With a high injury like mine, you are very dependent on other people for help. As I type this, I would normally be at church just before evening service starts. Unfortunately, my dad has been ill today and unable to take us to church. The big topic for me this year has been funding trouble with insurance not wanting to cover my caregivers. It often seems like the life of SCI is one battle after another, especially with funding. It's unfortunate that their are also many secondary problems like pressure sores and infections. I know several people that had SCI and are no longer living, mostly younger and with less time injured than me.

The ultimate reason for SCI and any other debilitating condition is living in a sin cursed world. At the end of creation week, called everything "very good." However, SCI and its affects are not very good. As a result of Adam and Eve's sin, the world is deteriorating, along with mankind. The ultimate cure for all ailments will come with a new heaven and new earth, where there will no longer be any more pain or suffering. Until then, we live the lives God has given us, no matter what our abilities.