Sunday, December 1, 2019

What Day is It?

Living the quad life can get challenging at times. Weeks such as this last one emphasize it even further and add complications for those around me.

Last week, I posted about my grandfather getting into an accident and he was at the end of his life in hospice. It is a situation that many families have, or will, experienced. However, added challenge comes with my parents also taking care of me.

The morning after the accident, grandpa was in the hospital in Des Moines when my aunt called that dad and his siblings needed to to the hospital quickly. That same day, my day nurse called off sick and left me with only my parents for the day. While mom tried calling anyone that could possibly stay with me, dad got ready for an emergency trip to the city. My other day assistant agreed to come, but would have to finish what she was doing and drive half-an-hour to come. Therefore, dad had to leave on his own and mom find another way to get there. Since it was uncertain how long my parents would be gone, we also had to find help when the day person left.

Over the weekend, the scenario was similar with dad and mom coming and going, helping me, and all of us trying to spend some time with grandpa. On Monday, his condition worsened and both parents, with dad's siblings, went to be around grandpa. That is, until my day caregiver left and mom had to return home again. Wednesday included funeral planning and work at grandma's house with dad's entire family. Once again though, my parents had to leave the rest of the family early and also stay up with me overnight due to no night nurse. With lack of sleep and schedule changes, dad has frequently been wondering what do it was and what was happening when.

It's hard watching my parents try to help other family members in times of need, but unable to do as much as they would like in order to care for me. Also just laying in bed, unable to help my family, doesn't feel right either.

Friday evening was funeral visitation. My grandparents own a small grain elevator and know a lot of people. For over three hours straight, people I didn't know came up to offer their condolences. However, the majority weren't familiar with me living the quad life. A hand would be thrust in my direction expecting to be grasped for a shake or hug. The hand's owner would then usually notice my arms are strapped down and the awkwardness of how to shake, or pat, hands follows. My voice also got drowned out easily amidst everyone else talking in the crowded room.

At yesterday's funeral, I was thankful to be able to deliver part of the message and speak briefly about grandpa. Several people expressed appreciation afterwords that they enjoyed what I said and how it was presented.

Weeks like these show more awareness about people with significant disabilities is needed. Despite the challenges, I'm thankful for what my parents and I were able to do. Now with both of my grandfathers gone, funerals are becoming more familiar. It is part of living in a fallen world and will occur more until my own time comes.

Sunday, November 24, 2019

Time for Thanks

In a few days, the U.S. will be celebrating Thanksgiving. It's a day that's getting overshadowed by shopping for Christmas, but observes an activity that we need to do more than just once a year.

I'm thankful to have a nearly full caregiver schedule again. With the reallocated night nurse helping, November only has two nights scheduled open and one night in December. I'm thankful also that I have close family that helps so much when more care is needed. This week, I was reminded to always give thanks to those around you as well, because life can change rapidly.

Thursday evening, my dad's parents were working on removing carpet on their basement stairs. They both bumped into each other, fell down the stairs, and grandpa hit his head on the cement wall at the bottom. At the hospital, it was determined he had a fractured skull and hip. His brain was also bleeding and less than 24-hours after the accident, he was taken to hospice.

Grandpa and grandma with grand kids
As I write this, my family doesn't know if we have hours, days, or what amount of time left with him in this world. It has been a surprise to see the spry, active, 86-year-old go from running around a grain elevator to being at the end of life.

Living the quad life, I've seen families experience sudden changes when someone goes from being suddenly vent dependent and unable to move. These are times that remind us not to give thanks just one day a year, but every moment of each day.

I know life's circumstances can sometimes make it difficult to find reasons to be thankful. It's easy to want a change to make a situation easier, such as better finances, health, or any number of needs. However, hard times are especially important to look for reasons to give thanks. They can be something as simple as the ability to see, hear, or even take a breath independently. If we take the time, there are always reasons to give thanks.

Above everything, I am thankful for Jesus' sacrifice on the cross and resurrection. Anyone who has repented of their sins and trusts in Him alone, can be thankful for the gift of everlasting life. For Christians, death is just the next step to eternal glory and a time of unending thankfulness.

As you go throughout this week and month ahead, look at what you have to be thankful for already. Be sure that it is also directed to the one who gave up His all for us while we were still sinners.

Tuesday, November 19, 2019

Out of Touch

You never fully realize how much you use something until it's no longer available. Last week, I posted about my chair not working. Thankfully, dad was able to get it going again after working on it. This week, I lost something else I continually use.

Friday morning, I had done my regularly routine and was watching an online video while flat. It stopped partway through and I noticed my computer was no longer connected to the internet. Short down times happen, but it didn't return after a few minutes. I tried restarting my modem and router, but with no change. A call to my internet service provider didn't help either and they would send out a technician, on Tuesday.

I knew I relied on internet access for a lot, like most people today, but this weekend emphasized how much. Without connection to email, social media, and services like Pure Flix, it felt like living in my childhood again. Thankfully, my great friend John was able to access my email to let clients know their updates would be late. He had a busy schedule himself, but was thankful for his help.

During the down time, I watched movies and TV shows I have saved, but haven't seen in a few years. With no other distractions, I could also make good progress on writing my book and reading others for longer than I normally do.

With restored service today, I now have a backlog of work updates, reading, and more that need attention. While it's somewhat frustrating, I'm also glad that I did refocus on other projects.

I think it's good for everyone to concentrate how much time and energy is focused toward a single object. Living the quad life, it somewhat forces reliance on technology in order to connect with the world and stay active. I don't know how I can try to become less needy on things like the internet, but I realized there are areas I should adjust my time. For the next few days though, I'll likely still be catching up.

Sunday, November 10, 2019

Independence Week

Last week's entry was just prior to my parents' departure for the week. It has been an interesting time with both good, and bad, along the way.

With my caregivers changing, I had a few shifts with people that either don't come frequently or just started. One evening, with two of these helpers back to back, I started feeling uneasy and went through training situations in my head. I remembered having the same scenario frequently when I lived on my own in college. However, God saw me through those times as well as this week without trouble.

Thursday, I had my final college class for the year. It had been scheduled for the previous week, but got delayed due to snow. It was a cold morning, but the EMS students were great with excellent interaction and everything went well. All that was left were two appointments in the Des Moines area on Friday.

First, my regular checkup with  my pulmonalogist. My wheelchair has a feature that when I tilt the seat beyond a certain point, it locks out the drive option. When I go more upright again, the drive function is restored. It has been acting up a little the last few weeks, but nothing major. However, as I sat up in the van in the doctor's parking lot, the drive function on my chair wouldn't unlock. With cold breeze blowing in, I tilted again, sat, turned my chair on/off, but no luck. Finally, after several minutes of repeating the process, I was allowed to drive again.

The appointment went well, and I was soon at a library at another Des Moines suburb. I was selected to join a task force to check that people with disabilities in Iowa are living as independently as possible. I had joined one meeting by phone, but this was my first time in person, if I could get inside.

My chair once again wouldn't allow me to drive to exit the van. However, it eventually relented again and let me get into the building. I was joining late, but found a parking spot among the attendees. Lunch break finally came and I joined the line to the pizza. With one small bump, my drive option was again locked out and it wouldn't return. The other committee members with mobility aides navigated around me, but eventually my assistant had to push all my 500 lbs back to my place.

As I sat listening to the meeting, my helper stepped out to call the wheelchair company I use. All technicians were busy though, and won't be able to help until Wednesday. When the day was complete, I had to get pushed onto the van lift, into my spot, and then the reverse when we returned home.

Such is the quad life some days. I'm very thankful for having caregivers both new and experienced that are able to go with the flow. I was at least able to manage without my parents needing to assist. This week may primarily be from in bed, but I'll wait and see what comes.

Sunday, November 3, 2019

Late Vacation

My parents like to get away and go on trips to various locations around the U.S. and sometimes into Canada. They usually go out in early fall, but weren't able to due to my nursing shortage. However, they are planning to leave later today for a few days away.

With October having so many open nights, we didn't know what to expect for November. Mom was determined to take a trip though, so we planned ahead to get evenings covered with someone that could stay with me. If nothing else, my parents thought they could at least do multiple one-day trips around Iowa and be home for the night shift.

A few weeks ago, my nursing agency's scheduler contacted me. A nurse who helped a few times several years ago would be available just for November. He worked well to my memory, so he had a refresher night Friday and worked last night. That means I only have two nights with nobody scheduled and my parents can be gone most of this week.

I'm thankful they will be able to get away for a few days and explore new areas. However, I'm also wondering how the week will go. For the last year, I've noticed I'm becoming more reliant on caregivers that can easily move me around. My grandparents and aunt do very well when they're here, but moving me around in bed isn't an option.

Either the bed, me, or both have changed that I need to be in an exact position in order to do much. If I'm not, my neck, trach button, and mouth start hurting. I have been thinking of ways to minimize movement in the evening so I can stay properly planted. I believe I have a plan, but I'll only find out with testing it.

In any case, it should be an interesting week in the quad life. I'll be using my Amazon Echo to remind me of household chores and try to keep track of groceries. I'm not fond of getting out in the predicted temps, but I hope they will increase as days get closer. As always, only time will tell what God has in store for another week.

Sunday, October 27, 2019

File Finds

Once upon a time, I dreamed of having a large office. Part of it would have large file drawers filled with important information for clients that I would regularly need to retrieve (yes, I'm odd). When mom was getting rid of a two drawer file several years ago, I quickly snatched it. My parents wondered why I needed it, but I thought it would be handy.

In the years since, my two-drawer file has held my tax information (not that I make enough to pay taxes), prescription information (which is mostly the same each month), nurse's paperwork, and much more. The majority of the paperwork has gone into their various folders, with appropriate labels, never to be touched again. That is, until this month.

With multiple nights without a nurse, mom thought we needed a project to help stay awake on our late nights. She has been in a cleaning kick lately, so my file drawer sounded like a good project. Each drawer is maybe three feet deep and almost completely stuffed with valuable (or not) information. Mom's mantra has been that you eat an elephant one bite at a time, so we took on the project in small chunks.

Living the quad life, I can't physically go through my own mail and paperwork. Therefore, I direct my caregivers to what I want done and it works well. Thankfully, I've had many assistants that have stayed for several years and I trust them completely. Therefore, some routine items, like reports from social security 2-3 times a month, just get filed without my needing to direct. Somewhere along the way, this has resulted in some interesting finds during our late night project.

Around 2005, I was looking at returning to college for my next degree. We found several college information pamphlets, including one letter that had never been opened, but was nicely filed away for over a decade. In my stored camp information, one find included my name filling an entire sheet of paper, with nothing else on it. I'm not sure why a black and white name tag from an unknown year needed to be archived, but it has now been refiled under recycle. Other treasures, such as paperwork for researching my diaphragm pacemaker, bring back memories of time and experiences I have been given.

After nine nights, only a portion of one drawer is complete. Moving forward, I think I need to be more observant with my filing system. However, it has been an interesting trip of discovery and remembering the path God has taken me on. Snow and slush is predicted for tomorrow, so I'm guessing I'll have more organizing time. I never know what will be found next, and may not want to either.

Sunday, October 20, 2019

Reaping what is Sown

It has been a difficult year for farmers in Iowa, but harvest has slowly started. Not everyone was able to plant last spring, but they are now gathering fields that were sown. The last few weeks, I have been watching story time (the news) on TV, reading emails, and observing life around me. Through this, I see the world is now reaping what was sown.

Since abortion was legalized in the U.S., over 60 million children have been killed prior to birth. In the 40 years this has been going on, I wonder how many of these kids would have now been married and had children, and even grandchildren, of their own. I don't know what the statistics would say, but the total number of people that are missing is much higher than 60 million.

About the same time of Roe vs. Wade, China implemented a law that a family could only have one child. After more than a generation has passed, China realized they are now facing a shortage in workers for factories, caring for elderly, and more. The rule was changed in 2018 to allow two offspring, but now that is under advisement as well.

Thankfully, America didn't have such a law, but I believe we're still facing similar results. Iowa, and the country, is experiencing a low unemployment rate. As a result, there are more job openings than people available to fill them. In my small town alone I am getting used to seeing regular signs advertising work available. That also includes my on-going need of finding more nurses to help cover time.

Unfortunately, this country doesn't seem to learn or pay attention. With increasing political campaigning, one party continues to push expanding abortion and even making it a right. On the opposite end of life, some countries are also expanding euthanasia allowances. If an adult, or even child, has some type of disability or depression, then they legally be killed by a doctor. It's becoming a common part of socialized (government-controlled) healthcare and also something candidates want to implement.

I know that living the quad life sometimes gives a unique perspective on life. However, it isn't something that only I have noticed. I'm thankful that God is in control, but I keep wondering what life was like before Noah's flood or when Israel was taken captive by Babylon. I pray we don't go that far, but will need to be vigilant through the weeks, months, and years ahead.

Sunday, October 13, 2019

Long Short Nights

At the end of June, I learned I would be losing my main night nurse. My initial thoughts went to how many nights would not be covered and all the extra work for my parents. August and September had several shifts open, but not as many as I feared. Unfortunately, this week has been the struggle I feared.

Since last Saturday, October 5, through tonight, only three nights have been covered. Tonight will be the third night in a row without a nurse. Thankfully, my main day assistant has come for a couple hours every evening to help with my night routine. This allows dad to get to bed earlier and get more sleep, but still less than normal and then he stays up half the night.

On Thursday, I had my annual meeting with my county DHS worker. This meeting was to make sure all my paperwork and documentation, that mom coordinates, is in order for the state of Iowa. The state then either approves, or denies, the multitude of exceptions I have that allow me to stay home. I was told that most plans like mine aren't being allowed. However, it's cheaper for the state to have me at home instead of a facility, so I should be approved.

The head supervisor of my nursing agency also comes to this annual gathering. He said they currently have about 140 openings for nurses. Due to regulations for nurse training, he said there are fewer people graduating college in the nursing field than are retiring. Therefore, the openings that are already nearly impossible to fill will only get worse.

A family I know in Florida has an eleven-year-old son with the same injury level, and care needs, as me. They have been without any night coverage for three months and his parents cover the time. They hardly ever get to spend time together, or much with their four other children, as a result. With the late nights, mom has been having increasing pain in her legs and other health issues.

Unfortunately, it's an increasingly common issue with the quad life, but their is hope. Last week, this family in Florida had a promising interview with a nurse and will hopefully get two nights a week covered. It isn't much, but anything helps. I keep reading and seeing messages how God answers prayer for those who ask Him. I know sometimes the answer is no, but I keep praying for some relief for my family, but also all those in similar situations.

A lot can change in a few day's time, so I will see what is in God's plan this week.

Sunday, October 6, 2019

Mr. Joel Returns

October started off busy with a doctor's appointment in Des Moines, monthly billing for web clients, and most importantly, speaking at two schools. I enjoy working with kids, but always wonder what will come out of their mouths.

Both schools have been on my visit schedule for several years. However, Thursday was two classes of second with two new teachers. I received very little communication from them in arranging my visit time, so I wasn't sure what to expect. The school secretary was friendly and opened the door for me as she has for years. I didn't know which class I was visiting first, so she helped me find one of the teachers while the students were at recess.

Finding one of them, I introduced myself and my assistant and wondered where to setup. The instructor said the two classes would be joining to hear my presentation all at once. This was news to me, but I've learned over the years to roll with the changes. A few minutes later, a total of 28 kids were all listening to Mr. Joel, most anyway.

It was tricky driving around legs as one class filled a carpeted area in-front of the room, but I stayed clear of everyone. After watching a couple videos and doing my regular routine, the class seemed to listen well and had good questions.

Friday found me at another school with a combined 3rd and 4th grade class totaling ten students. This was a familiar teacher as well and she had shown my school videos a few days earlier. As a result, the kids had prepared a few questions before I came, 34 unique questions. With these older students, they had thought out everything a little more carefully and it was an excellent few days that I enjoyed.

Later this month, I'm scheduled for two more grade schools and a college class. As I was afraid would happen, I don't have a night nurse before either of the younger students. It could get fun working with a room full of 7-8 year olds and little sleep.

I'm thankful I was able to share the quad life with these young minds and I enjoy it every year. I pray God will allow me to continue beyond this fall, but I will wait to see His plan.

Sunday, September 29, 2019

End of SCI Awareness

September was spinal cord injury (SCI) awareness month. I followed the example of a friend and posted something about SCI every day on my Facebook page. It has been a fun and rewarding exercise.

I tried to limit myself to three paragraphs of information and start out with general information before talking about my own experience. With writing here every week, I'm used to having more space, but I was able to stay in my self-imposed rules. It helped that I made a list of 30 points in August so I didn't have to think of a topic. I knew what was coming next, could allude to it, and somewhat plan what to write in my head.

A few people said they enjoyed the updates and learned a few pointers. Some days received a lot of feedback with others hardly getting any interaction. If I had several days in a row with little interaction, it started getting frustrating, but I somewhat expected it for certain topics.

In the over 34 years I have lived with my injury, I have seen a lot of change. Technology has greatly improved for therapy, independence, and the ability to connect with other families. Having a certain month designated to raise awareness of it also helps, but I can't say I heard any mention in regular news channels.

With tomorrow's conclusion, it will be nice not trying to remember to do an update. However, it has felt good to more actively teach about the life I've been given and have more interaction with friends, even though it's just virtual.

During all this, I had eight shifts missed in September, only four were scheduled. I had to cancel two meetings I was scheduled to attend and had more trouble with my pressure areas. These are normal parts of the quad life, but I only barely mentioned them.

October will be another challenging month with nine shifts already scheduled to be open. Winter weather and illness looks early this year, so that number could raise. I'm increasingly thankful for the coverage God has provided through all these years and keep praying relief will come soon.

Sunday, September 22, 2019

Controversial Buns

When you have absolutely no control of your body, you're completely dependent on others for absolutely everything. It's a regular part of the quad life, but can result in odd conversations.

Regular readers will know very well that I am dealing with pressure sores. One is on my extreme upper right leg, another on the coccyx, and the third on my left glute muscle. All three have been around for several years, two over a decade, and are a constant concern.

Twice a day, every day, dressing changes are done with different creams being applied to help promote healing. I think they somewhat help, but VERY slowly. Dressings are held on with tape and I'm good to go for several hours. The controversy comes in when deciding how much ointment, dressing, tape, and what size of gauze to use where.

I currently have five different people that do my wound care. Every single one of them thinks they do the job the best and gives tips for me to pass along to the others. Along with different opinions on treatment, each one also provide different reports on healing progress. I can see my back end without some precise mirror handling, so I generally rely on reports from my caregivers.

Early this week, I heard from three different people of a new large skin tear in a certain area. With taking tape on and off of new skin twice a day, further abrasions aren't uncommon. However, this was more than I typically heard. Since it sounded like a significant area, I try to carefully word a reminder to everyone to please be careful with placing tape, use very little, and also use caution when removing it.

Any such mention brings up more advice than I have caregivers. It's a challenging juggling game sometimes, especially when I don't have control of my hands in order to juggle.

No matter the debate, I'm thankful God has provided the people I currently have. Each one means well and is concerned for my care, but sometimes may not see what someone else does. I am also thankful these wounds have improved over the last few years, but look forward to a day when such problems no longer exist.

Sunday, September 15, 2019

Preaching Again

In October 2018, I preached at a friend's church near Louisville, KY. A few weeks later, on October 21, I gave another message at a church in northern Iowa. That service concluded a busy first full year of preaching. Unfortunately, that was the last time I have had the opportunity.

I was scheduled to help at a church in February, but the service was cancelled due to icy conditions. I had hoped to get asked to preach a few times this summer, but I never heard from anyone. So far this year, my home church has had three times our minister was gone and someone needed to fill the vacancy. Everyone who gave messages did very well, but I wasn't asked to do any of them.

A friend of mine has the same license I do and he said this was the slowest year he has ever had. However, I spoke with him again a few weeks ago and found out he preached three times since May. I have people no longer use my web development services after meeting me. The stigma that someone with a physical disability is unable to work is still strong and I've seen it in my life. I wondered if that could be why I wasn't getting calls or if my preaching and gravely voice were just that bad.

Thankfully, I received a long-awaited email a few weeks ago asking me to preach. If everything goes as planned, then I should be giving a message at a local church this evening. It felt great getting asked to help and I've had to remember how to review again. I had a sermon prepared for February that I didn't get to use, so I decided to use it and mainly just have to review my notes.

I was scheduled to have a nurse overnight this weekend, but we got a call late Friday evening she couldn't come due to an injury. I was foreseeing preaching after two nights without anyone, but the nurse thankfully came last night.

With September officially halfway complete, my winter hibernation is approaching. I hope to get opportunity to teach God's Word again, but I'm thankful for at least one this year. The next few months will determine if I can stay living at home and be available, or if I need to go somewhere and no longer be active. Either way, I will follow God's plan and serve where He wants me.

Sunday, September 8, 2019

Airline Empires

While flat, I'm limited in how much I can do. I'm still able to watch YouTube and Pure Flix as well as play Farming Simulator, listen to an audio book, and read physical books. It's actually quite a list, but I still like variety as much as possible. Therefore, I added another casual game, Airline Empires.

Trains are my primary interest, but there are few games associated with them. Aircraft and the airline industry are a close second interest, so related entertainment is fun. Airline Empires is completely played through your browser, no downloads or costs involved. It's very simple with no graphics, action, or motion, just primarily spreadsheets and Google Maps. However, I am really having fun with it.

As the name suggests, you own an airline. At initial startup, you choose a plane to lease and what city to base your airline, anywhere in the world. My airline is called Air Canadia with bases in Toronto and Vancouver, Canada. After establishing your home airport, you pick where to fly, ticket prices, and what services to offer your passengers.

Destination Map
It sounds straight-forward, but you also compete with other players' airlines that may offer the same flights. Therefore, you have to adjust prices and keep the competition from taking your passengers, and profits. Expenses include aircraft leasing, and purchasing, as well as gate rental at airports, employee wages, advertising, etc.

I have been playing now for about two weeks and find numbers and planning going through my head. Each game day takes 30 minutes in the real world. Therefore, one week passes in 3.5 hours, a month in 15 hours, and so on. Ordering a new plane can take 4-6 weeks for delivery. I don't want it delivered in the middle of the night and sit idle, costing maintenance fees, before I get to it. So I calculate when to order aircraft of different types so they become available at appropriate times.

As of this writing, I have 29 planes with only three owned. My fleet goes to 30 different destinations with a daily profit of over $7.3 million (I choose destinations carefully). It has been a fun venture, but doesn't take much time. The world my airline is in is at May 21, 1983 and goes to the end of 2010.

The quad life can be full of variety, and I'm thankful God allows me to stay active through various activities.

Sunday, September 1, 2019

Thankful and Cautious

The weather feels like fall, even though August just ended. It was a challenging month with several open nights, but still productive.

With three weekends without night coverage, I only got to physically attend church a couple times. Answers in Genesis had a dinner for supporters on August 24 followed by two days of teaching conferences in Des Moines. I was able to attend the supper, but that was all. It felt like I missed out on a lot for the month, but could still be active as well.

To my family's surprise, September's schedule came with only three nights not covered. It is still just my two remaining night nurses, but we are thankful to have the time primarily filled. One nurse, that now covers four nights a week, drives over an hour to come. She gives great care and has been reliable for many years, but has already been asking what is being done to find another assistant.

Fall weather should hopefully be good for a few months, but winter is uncertain with long driving distance. Also in September, my primary day assistant's daughter is getting married and will be off a few days. I'm happy for her family, but she is always missed when gone.

With an already full month, I delayed contacting grade schools to schedule talks. I offered dates in October and November, but don't know if I'll have night nurses to allow me to sleep before going. I feel like I'm playing a guessing game while watching time slip by.

This week, mom noticed there wasn't advertising in our local paper for the nursing position. I asked my nurse manager about it and was told since they didn't have any responses, they stopped newspaper ads and would try mailing known nurses instead. It seems like giving up to me, but I was told the agency isn't finding help anywhere and I shouldn't expect to either.

At least God has allowed another month with nearly full coverage. I'm thankful for this gift and will continue to pray that someone is found. It's part of the quad life that will always continue, but I look for help from the Lord and His plan in this as well.

Sunday, August 25, 2019

Alexa vs. Google

For Christmas 2017, my parents got me an Amazon Echo Dot, also known as Alexa. It is handy for making reminders and checking the weather anywhere in the world.

With a few additional accessories, Alexa can also control lights, thermostat, and much more. I know one quad who built his house around voice control through the Amazon assistant. I haven't gotten into any of the environmental controls partly due to expense, setup time, and to give my nurses something to do.

In late July, the Christopher and Dana Reeve Foundation announced a partnership with Google. People with spinal cord injuries, and their caregivers, could get a Google Home Mini for free. The device is the same as the dot, just a little newer than what I have. I didn't see a reason to get it as the Google device would be superfluous with the Amazon version. However, a friend said it was much better and my parents thought it would be useful in other rooms. Therefore, I ordered the free device.

The different color options were nice and a week after ordering, it arrived in the mail. The styling was a little updated, but it looked pretty similar in size to my echo. When I finally had time to set it up, my caregiver plugged it in. The mini promptly started saying to have an app on a smartphone or tablet to start setup. Neither of these devices work with a mouth stick, so I don't have them.

I started searching, via Google, for a version of the app to use on my computer. Alexa had the same need for an app, but has a desktop option and I guessed Google would have the same. However, after using my sit time, and flat time, searching, I only found multiple sources saying Google Home Mini initial setup cannot be done on a computer. The mini went back into its box and has been collecting dust quite nicely.

From this short experience, I of course give Amazon a high rating compared to Google's device. Since I can't even get beyond initial setup, no further evaluation is possible. With both devices, my head keeps thinking of the movie I Robot.

Persons with disabilities, and many others, get it so everything in the house is controlled by one simple device. Then, without warning, the lights turn off, doors lock, and thermostat becomes unbearably cold. A voice comes through the darkness saying control has been taken by some entity and release from the house arrest may happen in the future.

I'm thankful such options exist to help achieve independence for more people. For now, I'm content with weather updates and odd morning trivia from Alexa.

Sunday, August 18, 2019

Wearing Down

Some weeks just have highs and lows that come together. When they come along with tiredness, it makes for interesting days.

The first two Friday and Saturday nights this month didn't have a night nurse. I looked forward to sleeping at night again, but couldn't quiet my head when the opportunity came. Thoughts of more nights without anybody and if, or when, to look into a care facility kept my mind active.

Tuesday, I volunteered at the Ark Encounter booth at the fair. Parking was still an issue, but the three-hour shift went well. After trying to breathe in extra air to talk over all other noises, my lungs were pretty sore. In any case, I was happy to hand out gospel tracts and looked forward to my next shift on Thursday.

Later that evening, dad backed the van out of the garage to work on something else, and heard an odd noise. After some searching, he noticed the muffler was completely rusted through and nearly ready to fall off. He got it safely detached and was confident a replacement would be easy to find and I could still use the van.

On Wednesday, dad contacted his auto supply store, and the closest replacement for the lifetime warranty muffler was in Indianapolis. It wouldn't arrive until Friday or Saturday. Dad looked to different solutions, such as a temporary replacement or getting me in a work vehicle, but the ideas didn't work. He tried his hardest, but I had to cancel my volunteer time just as I had two years earlier.

Wednesday night was the last shift for my main night nurse. Mom and I gave our heartfelt thank yous for her years of service, and then she was gone. Friday, I had my regular 60-day checkup from the nursing agency and learned that my left wound has increased in size since June. It isn't much, but still the wrong direction.

For about few years, I've also had very little work for web development. It has worked well with having little time to be able to work. This month, two large projects have come that both need work and done in a timely manner. I'm very thankful for the opportunity to be more productive again, but getting back into a busy work schedule is adding to my exhaustion.

Living the quad life has some challenges, including skin trouble and being limited on vehicle choices. I'm thankful for the strength and assurances from God's Word and getting through the present struggles again.

Sunday, August 11, 2019

Fair Woes

Toward the end of every summer, I enjoy going to the Iowa State Fair. It doesn't change much from one year to the next, but I still like attending. For the last three years, I have volunteered at the Ark Encounter booth. Due to time requirements for it and my bad pressure sores, I didn't tour the grounds for more an hour or so. This year, I scheduled my volunteer times for the second week of the fair and went up this past Thursday just to have fun.

Parking has regularly been an issue. My van's lift requires a lot of space for me to get out and uneven surfaces are difficult to impossible to use. Fortunately, the fairgrounds has had a few cement parking lots that work well, if you knew about them. However, in this past year, the main parking area has been torn out and replaced with buildings and other features.

I called the designated ADA person at the fairgrounds to ask about handicapped parking. She assured me a different cement lot had been extended and all would be well. I felt reassured and looked forward to my free day.

Arriving to the fairgrounds at 8:30 Thursday morning, the parking attendants directed my van to the regular grass/gravel parking area. We told them I needed cement parking, but I could see the small area and was told it was already full. My assistant followed directions, and we were promptly parked on an oiled gravel lane with grass and directed to park directly beside another vehicle.

Picture from video
The boy directing us (yes, he was around 10, not exaggerating) didn't understand the space requirement as more cars were quickly lined up beside my van. My assistant carefully moved over to have just enough space for her to get out and be able to get me out as well. The gravel was hard to use, but we managed. I then had to take the very rough surface, alongside moving traffic, for quite a distance before finally getting to cement.

I brought my cameras in order to record my day and made sure to document the parking situation. An older lady with walking difficulty parked behind us and said it would not be possible for her to walk over the surface. Thankfully, a golf cart came to bring her to a rented scooter.

On Friday, I again called the ADA officer to advise handicapped parking needs to be adjusted. She returned my call yesterday and said the cement area allows for 58 cars and is more than they are required to have. If none are available, then the gravel/grass area is all they can do. I didn't count, but I would be very surprised if the paved area I saw holds even half that number.

The rest of the day went well and was enjoyable. Getting back in the van was difficult after a quick rain and my wheels left a few ruts in the gravel as I got stuck. With being scheduled to work at the fair two days this week, I'm fearful of what I'll have for parking. Unfortunately, it's part of the quad life.

If changes aren't made, this may be my last year of going to the fair. In any case, I'm thankful I was able to go and mostly enjoy the day. I will do what God allows for this week and continue to adapt as much as possible.

Sunday, August 4, 2019

Textile Security Breach

For the past several years, I have volunteered at the Ark Encounter gospel outreach booth at the Iowa State Fair. I signed up to help this year, but nearly got hooked off to jail instead.

Part of the booth's display includes a replica of Noah's Ark with a small train layout. The person who usually maintains and sets up the trains is no longer able to help. Therefore, dad agreed to assist with the model trains. Two other train enthusiasts from church, Dave and Jeff, also wanted to help.

With the fair starting later this week, yesterday was the day to get the booth ready. The four of us arrived to find a metallic erector set under construction that would eventually form walls. After an hour of work, the ark themed train layout arrived. Dad helped with the wall assembly while I watched Dave and Jeff work on the rails for the next 30 minutes.

Unfortunately, not all the parts for the train set came at one time. Three hours after the track's arrival, the booth was nearly finished, but we continued to wait for the model trains in order to test track function. The Ark Encounter display takes up a small part of the Varied Industries Building. Several other businesses and organizations have advertising and booth space. Since we had time to wait, the four of us went exploring.

Some displays were ready for business, others were in progress, and several hadn't started. Dad and I took our exploratory party up to the second floor where the textile display is housed. Fabric creations of all types were hung up with ladies busily getting more entries displayed. One woman cautiously greeted us and dad explained our presence.

Jeff wondered around a corner and behind display racks out of sight. Dave noticed all the items have various colored ribbons indicating what place they received. With the fair nearly a week away, he asked how they had already been evaluated. Our host's mood changed as she explained how judging had taken place the last several days. However, nobody was to know the outcome of their work before the fair started and our presence had potential of revealing these secrets.

Suddenly, a director type lady appeared and while engaging in conversation, was clearly unhappy with our intrusion. I started to slowly back away toward the way we had come in order to make a swift retreat. I imagined at this point that Jeff was cocooned in a quilt and left in a far back corner somewhere. Soon, crochet hooks and knitting needles would come out in order to subdue the rest of us into seclusion so we couldn't divulge any information.

The missing member of our group soon appeared and didn't appear to have been harmed. Once again four strong, we left with assurance nothing would be told. We found our way back to our designated section and the trains arrived 15 minutes later so work could continue. Another hour of progress occurred before the building closed and everyone had to leave.

A security officer was by our exit door using his phone. I hoped he wasn't getting a description of a barefoot wheelchair person with three other guys that needed arrested for trespassing. I quietly rolled by and out to the van without raising suspicion. Soon, the four of us were returning home, but not with a completed job. Another visit will be required before everything is ready for guests.

I'm thankful I was able to get out yesterday, even with two nights without a nurse. Hopefully this week of the quad life will remain busy, without looming peril.

Sunday, July 28, 2019

Activity List

Imagine if you were told you only had a few months to live. What would you do? People often talk about having a bucket list, things they want to do before kicking the bucket. They can be good lists, but what would be your priority?

In many ways, that's what I feel like I'm doing now. Just after camp, I was told my main night nurse would be leaving at the end of August, two months away. I haven't been very successful, but I have been trying to do favorite or delayed activities before that time comes. One of them happened this weekend.

Friends at the park
Early this summer, my best friend, John, said he would like to try to visit this summer while his kids were out of school. I mailed him Tuesday to see if a time was still possible to come and he arrived late Friday afternoon.

The last time John came was May 2017. We frequently talk via Facetime and messenger, but it's not the same as in person. Seeing how much John's boys have grown was fun and getting to interact with them more. Discussions about life's struggles are much better done in person and working through possible future scenarios.

Just 26 hours after they came, it was time to head home again. It was a quick stop, but I'm very thankful it was able to happen. I learned that my time is shorter than expected and instead of late August, the nurse is leaving on the 14th.

Next month's schedule has several weekends without coverage that will make days difficult. I am also very uncomfortable with one of my current night assistants and see that her hours are increased. I'm thankful that my parents can sleep when she's here, but it means sleepless nights for me as I count the hours to her departure.

My short list of activities I hoped to do before losing coverage will not be completed. As the new schedule starts with decreasing coverage, I don't know what the future holds. Whatever comes, I'm trusting God's plan for this quad life and pray I can still be an active member of the community.

Sunday, July 21, 2019

First Encounter

In September 1985, I came home from the hospital to start life as a quadriplegic. Living in small town Iowa, I didn't have any other kids like me around.

Five years later, my parents heard about another family in northwest Iowa whose son had received a spinal cord injury. Chad had been injured while playing on a dirt pile and was now a vent dependent quadriplegic, one year younger than me.

The summer between third and fourth grade, my parents, dad's parents, and I made the five-hour drive to Sioux Center to meet Chad and his family. His dad was a pastor at a local church and they were building a wheelchair accessible house for them. In the mean time, Chad was staying at his nurse's house when we met.

It was great seeing another boy who used a wheelchair like me along with a vent. Racing each other in the gym at the local college was fun as well as watching Chad play Nintendo with the same hands-free controller I used. We both had to have medical cares done, so the day ended before either of us wanted.

That was the only time we ever met in person. Since then, I've had the opportunity to meet and work with other quads, both kids and adults. I still remember first meeting Chad 29 years ago and not feeling so alone. Since then, we corresponded a few times via email and other means, but very little.

I learned through Facebook that Chad died last week on July 13. I watched his funeral on Thursday via live stream, but wish I could have gone in person. Even with little communication, I still felt as friends. It is part of living the quad life that has been common this year.

During the service, the pastor talked about Chad's strong faith in God and the witness he had for so many. I pray to continue to do the same as long as I am able. I have seen the passing of more fellow quads this year than the last few combined. It serves as a reminder to always be thankful for the time we have been given and looking forward to the life to come.

Sunday, July 14, 2019

New Hands

A common problem for those in the quad life are contractures. Joints in fingers, toes, wrists, ankles, and everywhere else can become stiff with decreased flexibility and even get locked in place. I've been blessed with excellent care and have few problems with this, but still have some.

I believe it's partly due to always being barefoot, but my feet have no trouble at all. My knees don't straighten out as far as they should, but come pretty close. Everything else is pretty close to normal, except my hands.

Both wrists have limited movement and my left hand, if left alone, points sharply out to the left and is hard to straighten. Each one varies, but all ten fingers have stiff, partially frozen, joints like to curl under if not positioned correctly. Looking at pictures when I was newly injured, my fingers and hands adopted this position very early.

In order to help stop further problems, I wear braces or hand splints. Unfortunately, like everything, they wear down and need replaced. At night, I've worn a very substantial brace on my left arm for several years. However, it stopped keeping my wrists and fingers straight long ago and has been causing red areas. I wear my right splint day and night to keep my hand from grabbing the wire for my diaphragm pacemaker. They weren't designed for that much use though and the Velcro quickly degrades.

Back in April, I visited with my splint person to order new ones and finally went this week to pick them up. You have likely been in the medical field too long when new splints make you excited, but I was looking forward to getting them. Putting them on in the office, it was great to see both hands laying straight again.

I kept them on through lunch and the trip home from Des Moines and didn't see any signs of trouble. My night nurses have reported they like the change and it is keeping everything straighter. The only question now is how long the new hardware will last. I'm thankful we have been given such devices to help with fallen bodies and hope to see improvement ahead.

Sunday, July 7, 2019

Slowly Learning

Tomorrow will be two weeks since I had my tooth removed. This past week has been one of slowly learning my new boundaries.

I have helped adults and children with spinal cord injuries learn how to adapt to their new body. Using adaptive equipment such as wheelchairs, mouth sticks, and electronic aides can be a steep learning curve. This experience has taught me again what it's like to start from scratch.

For most surgeries, the doctor has prescribed pain medicine. However, since I can't feel whatever was worked on, I've never taken any. This is the first time I remember taking anything more than once to help cope with major discomfort.

On Tuesday, my day assistant wasn't able to come and dad took most of the day off work to stay with me. We had a few errands to run, so the two of us left the house a little before lunch. Dad and I stopped at Culver's and then parked in one of the nearby campgrounds overlooking Iowa's largest lake. I thought chicken strips would be easy to bite for our picnic, but I was wrong.

Applying force to the left side of my mouth resulted in pain with subsequent chewing compounding the problem. I was only able to push through about half the meal. After lunch, the next stop was Walmart to satisfy our lists.

Driving through the store, pushing on my wheelchair's controls with my chin resulted in pain and every movement. I tried using my upper lip or other parts of my face, but they didn't work well enough to safely drive and not run into anything.

Thankfully, one of the stitches fell out Friday and has made a vast improvement. I'm still completely relying on others to help with computer control when I'm flat, but it's becoming easier when I have sit time.

While watching an abundance of YouTube these past two weeks, I have been thinking of the time I took for granted and didn't use my mouth for beneficial tasks. Instead of writing or working, I took time for entertainment instead. It's a problem in the quad life and everyone that needs to be cautioned against. I look forward to further progress this week and using the time God gives me for good use.

Sunday, June 30, 2019

Rapid Change

In life, you can be traveling along the path you're given and everything can be going well. A sudden unexpected bump can change your course and take you down unexpected paths.

Last week, I wrote about my challenges at camp this year, but I wasn't the only one. Bradford Woods is heavily wooded with trees completely covering most trails. With all the rain, we saw where one large tree had been uprooted, dirt and all, and had damaged part of the trail. In a different area, another cabin was returning from the zip line.

Along the path, one boy was being pushed in his wheelchair by one counselor and another walking beside him. Without notice, a large branch fell and hit him in the head, cracking his skull. The two counselors directly with him were uninjured. The camper was taken to the hospital for surgery and a few hours later was acting as normal and sad that he wouldn't be released in time to return from camp. Through no fault of his own, or others, plans quickly changed.

Two days after returning from camp, I was starting to recover from the week and glad to have my regular routine. My main night nurse was partway through my routine when she told she had resigned and will be leaving in late August. She plans to return to school full-time to pursue a different career. This nurse has done the nine-hour shift four nights a week nearly every week for over five years and I have been very thankful for her care.

The head of the nursing department called to confirm what I already knew. Finding nurses is very hard, even harder for nights. They will be advertising in my area, but can't guarantee when or if anyone will be found. He suggested to also try social media as some clients have had success with finding help.

With this news, I went to the dentist Monday to have my tooth removed and get the implant. After an hour of pain and discomfort, my lower, front right tooth was pounded out. However, the implant could not be put in and I have to wait until December to get the tooth. In the mean time, I have a large gap in my mouth.

I'm right-handed, which in the quad life means I mainly use the right side of my mouth. Using my mouth stick is a challenge and I can't use it at all when I'm flat. In addition to waiting until December, Iowa is changing dental plans for Medicaid users on July 1. That means the approval I currently have for the implant will need to be redone. That process took over a year the first time.

If a nurse can't be found, it's very likely I'll need to go to a care facility. A new group home has begun construction in my hometown, but after several emails the facilitators of the home said they will not have people with my care needs. That would mean I have to look at the four nursing homes in Iowa that take vents, none of which are close to home. Moving may also readjust my December tooth appointment. In retrospect, having my tooth removed at this time is probably one of the worst decisions I've made. However, it's not one I can undo.

God has given me 34 years of care as a quadriplegic and I know He doesn't stop. Similar nursing situations have come up in the past, but they worked out. I pray someone is found, but am ready to serve from a nursing home if needed as well. It has taken me three times longer to write this blog than usual with some pain, but I can still get it done. I pray this week goes better, but have learned to roll with changes and follow God's lead.

Sunday, June 23, 2019

Cold Difficult Week

For my 15th year, I spent the last week volunteering as a counselor at CHAMP Camp. It was nearly the most difficult time I've had and not one I want to repeat again.

As has been usual, dad, my day assistant, and I left for Indiana on Friday morning, June 14. I've had trouble with the ten-hour drive before, but have learned to take extra breaks and drink plenty. The trip went well and our group of three got to camp late in the evening.

Rare sun near the pool
Indiana's weather has been similar to Iowa lately with cool temps and plenty of rain. The forecast for the week called for daily rain and thunderstorms and high more reminiscent of early spring. Saturday's counselor training sessions were moved indoors to avoid weather, but we still had to seek shelter in the cabin bathrooms when the tornado sirens went off.

Usually by Tuesday to Wednesday night of camp, I feel completely wiped out, ill, and not sure how I'll finish. With only a day or less remaining, it isn't too hard to struggle through to the end. This year, that feeling of pure exhaustion was deeply rooted in by Saturday night and only left me for a few hours at a time for the remainder of the week.

With lack of movement and other factors, those living the quad life often struggle with temperature regulation, especially cold. I fare better with cold than many others, but prolonged exposure affects me and I have a hard time recovering. With outside temperatures mainly in the upper 60's to low 70's and cabin air conditioning varying from 68° to low 60's, I started most nights cocooned in two blankets and pillows. Several evenings, and afternoons, I was afraid I would need to leave early. I didn't feel like I helped very much with the three boys in my cabin, but was able to some.

Two of our three campers
I didn't bring much warm clothing, but had a few times with a sweatshirt and shorts. Thankfully, with much prayer, I was able to stay the entire week and returned home late Thursday, June 20. It has now been a few days since returning and I'm still tiring out quickly and not feeling quite back to normal. Another former camper turned counselor has volunteered for several years as well. He struggled this year also and plans to take a year off. I was unsure before going this year, but now feel confirmed that it's time for me to retire. I am not as young as when I started volunteering in 2000 and age is gaining an upper hand.

With all the trouble, I was thankful to hear my three pressure sores did well. One stayed the same, one improved, and the third only grew by a very small amount. Hopefully that will allow me to stay more active this summer and fall.

Tomorrow, I'm finally scheduled for my front tooth extraction. I'm hoping it goes well, but this week will require relearning how I use my mouth stick and may delay future updates. I will see what adventures await another week.

Sunday, June 16, 2019

Transportation

For most people, getting from one location to another doesn't take much thought. In the house, walking around is an easy task and longer distances can be traversed by any car, bus, train, or some combination. Living the quad life, it isn't as simple.

Just getting out of bed takes a lot of work with me either getting picked up by hand or with a lift. Finding a wheelchair that works well for me takes years of planning followed by continued maintenance. Just to go from bed to the opposite end of the house takes 15-20 minutes. Then the challenge gets increased with leaving the house.

I can't simply hop in any vehicle, it has to have a lift for my wheelchair and be big enough for me to fit. Getting in and secured with straps to the van takes about 4-5 minutes. It's fine on nice days, but cold, wind, and rain can make it seem like an eternity.

To my standards, I have a new wheelchair with it being less than four-years-old. The van I use is about 25 years old, but works pretty well. I am very thankful that I have been blessed with these devices that allow me the freedom to get out and be active. I know this is not the case for everyone.

After giving thanks to God for these gifts, I also thank my dad for all he does. Over the years, he has become an expert at working on my wheelchairs. Some maintenance has required working with micro-switches in my chin control so I can keep moving. When I cracked the frame of my chair, he completely took everything apart so the frame could be brought to a weld shop. In less than two days, he had disassembled it, welded, and reassembled so I didn't miss a day of class.

God has also given dad skill in vehicle mechanics. Maintaining the van's motor, chair lift, and everything else to keep it working. He has also helped with my physical needs ever since birth and continues to work to earn an income for our family and provide medical insurance.

On this Father's Day, I give thanks to my Father in heaven and for the multitude of blessings He has given me through family. I pray that you can do the same this, and every, day.

Sunday, June 9, 2019

Rainbow

This week, I have been seeing a lot of rainbow decorations in the news and on social media. They serve as a good reminder of the past and the future.

Genesis 9:13 says, "I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth." God had destroyed the entire earth, all land-dwelling, air-breathing animals, and mankind in a worldwide flood. He saved one family, Noah, and representative animal kinds aboard the ark. The rainbow promise was that God would never send such a flood again.

I've seen some people claim that Noah's flood was only a local event and didn't encompass the entire planet. However, if that's the case, then God's promise to never send such a flood again has been broken many times. Just in my lifetime in central Iowa I have seen devastating local floods, including this year. Catastrophic local floods have happened many times in history throughout the world. One in more recent times was caused by Mount St. Helens and carved out a canyon 25% the size of the grand canyon. God promised to never again send a global flood, not local.

In Noah's flood, everyone who was saved had to go through the door of the ark. Jesus compared Himself as a door that if we enter by Him, we will be saved (John 10:9). Peter also said that as the world was once destroyed by the flood, it will again be destroyed, but by fire. It will also be a global judgment, not just a local event.

The rainbows I have seen recently were meant to promote a particular lifestyle choice. However, that was not the rainbow's original sign, and that meaning still holds very true today. No matter what life choices someone has made, they are not beyond God's saving grace. Whether they are lies, theft, adultery, or even murder, they can all be forgiven. Just as their was a judgment during the flood, it will come again for everyone.

I pray that whenever the rainbow is seen, in any context, that it will serve as a reminder of what is to come.

Sunday, June 2, 2019

Legacy or Lunacy

A couple weeks ago, my parents got away for a week of vacation. Since they usually cover the evenings, that means finding people to help watch me. Thankfully, I still have grandparents and relatives that are able to help.

For two evenings, dad's parents came to stay between my day nurse and night nurse nurse. Grandma usually comes first with grandpa arriving just in time for supper. Unfortunately, they are not able to move me around in bed. Therefore, wherever the nurse has me positioned when she leaves at 5:00 is where I stay. Thankfully, my grandparents are quite capable of putting the bed down and propping my head with pillows so I can do something.

The first evening they stayed, I wasn't laying very well and couldn't do much. Grandpa did enjoy watching me play Farming Simulator 19. He watched, and snored, while I worked in my virtual fields with virtual equipment.

On their second evening, I was left much better positioned. After I had been flat for over 3.5 hours, I had grandpa and grandma sit me up in bed again. They managed well and has become my usual routine, I started working on writing my book. Grandma inquired to my activity and I told her about this project I've been doing for nearly 18 months. She responded that she hopes to get to read it someday. A week later, when mom was at work, grandpa told her he hopes to get to read my book before he dies. It was a surprise revelation to her, and me.

In this past year-and-a-half, I have sometimes wondered why I am taking on this writing task. In some ways, I feel it to be my way of leaving a memory or legacy. I don't have kids and hardly anything to show for work that would leave an impression on anyone. I talk to a lot of students, both grade school and college, but I'm quite certain most forget about me within a week at the most. I know it's doubtful that anything will ever get published, let alone be something anyone other than relatives would buy. Knowing how life usually goes, it would most likely get looked at by outsiders as something to joke about.

I am now about to start 2007, so I am at least catching up to modern times. If anything ever comes from it or not, I'm thankful for the quad life God has given me.

Sunday, May 26, 2019

Buns of Rubber Bands

I posted in early April about working on getting pressure mapping done with my chair's seat cushion. What started in March is now complete in late May, which is actually pretty quick for medical services. The final solution ended up being fairly easy as well.

Sitting on mapping grid
In order to test a seat cushion, an electronic mat is placed on it and then I sit on top of it. The mat is connected to a computer that displays a map showing how much pressure is being exerted at all points.The results look similar to a weather radar with blue okay and red cause for concern.

After rescheduling once, I had my initial testing done two weeks ago. Arriving at the hospital, my assistant and I circled the parking lot a few times, along with other cars, unable to find a parking spot of any type, let alone an accessible one. We ended up parking on the street, but could only come up with $1.00 for the meter, or 80 minutes. I hoped the appointment would go quickly and not return to find a parking ticket.

Original test
Using three people to lift me up and slide the mat under me, results were surprising. Most of my seat looked good, but their was a bright red area directly beneath one of my pressure sores. Tilting back helped, but it still showed up red. One of the therapists felt the pad under me and discovered I was sitting on the metal base of my chair.

For the past 20 years, I've used a seat cushion called ROHO. It has small rubber pockets filled with air so the user sits on an air mattress. Mine had deflated enough that I was partially sitting on bare metal. Air was pumped back in and the reading improved, but not by much. I was told I should be making adjustments to the air weekly, something I never knew before. However, since numbers were still bad, it was decided to get a different seat type. This past Thursday, I went back for the new cushion.
New cushion

This time, we found parking right up front and hoped inside would go as well. Once again, it took a small army to lift me up, take out my ROHO, insert the new pad, and the mapping system. This type was gel with a large hole in the middle to eliminate pressure completely. Sitting back up, the results were even worse. Not only was there pressure in the same area, but also now on the right side. It looked similar to recent radar in Iowa with recent storms coming through.

Final result
The new cushion obviously wouldn't work, so our attention returned to my ROHO. With rubber bands,  some cells could be tied off and mimic the hole of the other cushion. None were in the therapy room and the office could only find two, but the therapist got it to work. After another lift and seat transfer, I awaited the results. Now, everything was blue with a few light green spots. Tilting back had even more improvement with all blue.

After nearly two months of work, doctor's appointments, and approvals, all I needed were two rubber bands from the office secretary. Such are the experiences of the quad life. I'm thankful God has provided technology to help detect problems, but also for simple solutions. I will see what adventures await this week.

Sunday, May 19, 2019

Busy Bachelor

On Sunday, my parents were able to get away for the week on vacation. That means I had the house to myself for a few days. Unfortunately, I was too busy to enjoy most of the free time.

Tuesday, I spoke with physical therapy students. It has been a few months since I talked with college students, but I reviewed a few times and felt ready. The instructor introduced me as the best speaker of the year, even better than the instructor. From that evaluation, I'm assuming I am the only guest speaker that comes. The class of 16 students went well and had good questions when I finished.

I had two days on my own, with assistants of course,but had household chores of getting groceries, mail, taking out the trash, and checking the back deck. After 45 minutes with my legs in the sun, I determined the deck was fine.

Friday had another school, but third graders this time. Going from college to grade school takes adjusting, but it went well. The weather was forecast to be warm again and I didn't think the small private school would be air conditioned. Therefore, I changed my normal speaking outfit of khaki pants for shorts.

One student asked, "What happened to your legs?" before I started. I did my normal routine of explaining about my injury, but he asked again later. I tried saying I don't use the muscles in my legs, which makes them small. However, I'm still not sure I understood, or answered, his question. Another student dozed off part way through my time and never responded. That was a first for me, and one I don't care to repeat.

Mom and dad returned again Saturday evening with stories about their travels. I'm thankful it worked out for them to go and the extra help I had in the evenings. With everything I had going, it didn't really feel like a vacation week. My calendar looks just as full for the rest of May, so I won't be getting a break any time soon. As I told students this week, just because someone can't move doesn't mean they can't be active.

Sunday, May 12, 2019

Celebrating Moms

In the quad life, it's hard to describe what every day challenges are like and few people understand regular frustrations. Therefore, we often socialize with other quads, and families, that know what daily life is like.

For kids with spinal cord injuries, and often adults, their mothers tend to become their biggest advocate. These moms often perform all the medical care, handle funding battles, and notice personal victories, no matter how big or small. Every true mother cares for her children very much. However, the bond seems to grow stronger when the son or daughter has significant challenges. On this Mother's Day, I know two moms that are feeling the grief of losing their child.

In March, Aiden passed away after a sudden problem at school. He was ten-years-old and had lived with a high level spinal cord injury for about nine years. I am friends with his mother on Facebook and have been seeing the grief of going from daily caregiver, to nothing.

Last week Monday morning, Margaret passed away after a short battle with respiratory issues. She was 15 and also had been a quadriplegic for ten years. With her funeral yesterday, her mother, and family, is just beginning to experience a new life without her daughter.

Like these families, I rely on my mother for a lot and am very thankful to my mom for all that she has done. Shortly after returning home from our accident in 1985, she started monitoring paperwork, and my medical needs, while still learning her own injuries.

Now, mom spends 20 hours a week on just paperwork for my nursing care. Add to that meal preparation, planning, and taking care of the house. Mom does very well with the circumstances given to her. I'm thankful God decided to bless my life with her and am very greatful for all she does.

As you go throughout this week, remember your mom and all those living in difficult circumstances. Finally, remember mothers that have lost their children, at any age, and that today may be an added difficulty.

Sunday, May 5, 2019

Dating Guys in Wheelchairs

Last week, a friend shared a blog post giving ten reasons to date a disabled lady. I don't necessarily agree with everything, but it was an interesting post, but I noticed it didn't say anything about guys. Therefore, I was challenged to come up with my own version. It isn't ten, but these are a few points I would include.
  1. Good Mouth Skills: Most people primarily use their mouth for regular tasks such as talking and eating. As a quadriplegic, I use my mouth for everything, such as writing this blog. I haven't delved into further mouth tasks, but could likely learn easily.
  2. Remote Control: Television use has changed over the years, but they still require a remote control. A regular complaint I hear from couples is the husband won't relinquish the remote. I can't grab it in the first place, so I would not have such an issue.
  3. Quiet Snore: Another regular qualm wives have with husbands is loud snoring at night. My breathing is completely controlled by my diaphragm pacemaker. I'm told I do snore, but it's very quiet, and every four seconds, with no change. While muscle spasms and kicking legs could be another issue, obnoxious breathing isn't.
  4. Easy to Locate: If I'm not in my wheelchair, I stay wherever I'm put. Even in my chair, I can only go to level areas and indoors if doors aren't opened. Even in a crowd, I'm usually pretty easy to spot. Therefore, little wondering where I am or when I'll get home for supper as I'm likely already there.
  5. Available Transport: I deplore shopping and am very content to have my stuff delivered. However, when the need arises for brick & mortar stores, I have handy areas to hang bags. My chair is often utilized when unloading the van as a shopping cart to move goods. I also always have a lap available for tired young children.
Above all, I put God first in my life and would treat a potential partner according to His word. The quad life has many challenges, and they would be hard for anyone to enter into. However, we can offer a full, loving relationship as other men. I don't see me getting to experience this part of life, but gladly live in the world God has given me.

Sunday, April 28, 2019

Reverse Positions

In June 2003, I was working at a temp job in West Des Moines. I had just finished college three months earlier and had started looking for full-time employment with needed insurance benefits.

Vocational Rehabilitation (VR) had helped me through school and upon graduation, had me hire a job developer to assist in my job hunt. On June 6, I took the morning off from work to meet with VR and the developer to update on progress. Over the Memorial Day weekend a week earlier, my job assistant talked with a few friends that were business owners. They told him a company would never hire someone like me because of possible increase in medical insurance costs.

Based on this, VR decided to stop assisting me and stop my funding to live independently. I was told I shouldn't expect to ever find work and should go live in a nursing home. My VR counselor gave me a list of phone numbers to care facilities and that's all they would do.

This was a major turning point in my life, one of which I haven't forgotten. I remember the events, and location, very well. I haven't set a wheel in that building since that day in 2003, until this past week.

One of my web clients works to help people with disabilities be independent and productive. It is primarily operated by VR counselors and they wanted to meet with me on Thursday to discuss changes to their site. The meeting was in the same building that I was in nearly 13 years ago.

This time, I was seen as the professional offering advice and helping to improve the lives of others. Nobody in the room Thursday knew my history, until I told them at the end of our meeting. These counselors were surprised at the news, but glad to use my services.

God has brought me on an interesting journey in the quad life. At the time, I didn't know what my future would hold. Now, looking back, I can see His hand in directing the path I needed to take. It has been very trying at times, but I've learned to trust Him with each day and week ahead.

Sunday, April 21, 2019

Easter Sunday 2019

If you watched the news at all this week, you likely heard about the fire at Notre Dame Cathedral in Paris. The news showed video of flames leaping from the roof and the spire crumbling to the ground. For me, it was a reminder of the modern church.

Today is Easter Sunday. All across the world, Christians took this day to remember Christ's resurrection on the third day after His crucifixion on Friday. If anyone, including me, honestly examines their life against the ten commandments, they will see a life of sin. All sin requires payment, and that debt is paid in Hell. However, for anyone who truly repents of their sin and puts their trust in Christ alone, they will be saved. No works are required for this gift, Jesus paid it all. Today marks the memory of that conquering of death and is the basic Christian message.

Picture from reuters.com
However, many churches in today's world reduce the seriousness of sin. They say Jesus is love and leave out that He is also a judge that requires holy perfection. Churches of all sizes have become centers for entertainment, highlighting some particular music, and have messages that merely tickle the ears of listeners. Christianity in its present state has existed for nearly 2000 years, but is ignoring the God they claim to worship.

I saw this picture after the fire. Among the rubble of the fallen building, the cross remained. Even though some parts of Christianity are falling away, Christ remains faithful. There are still churches, and Christians, that truly believe the Bible and follow God's teaching through life. At some point, I believe the churches that have gone away from faithful worship will fall themselves. Many are deceived by them and I pray these people find their way back to the gospel as in the Bible.

Whether you're living the quad life or not, I encourage everyone to regularly attend a Bible confirming church regularly, not just a few times a year. Some may be hard to find, but resources are available to help search. I'm thankful for what God has given me and I look forward to serving Him again for another week.

Sunday, April 14, 2019

Tale of Two Doctors

I've seen people say a sure sign of spring is road construction popping up everywhere. For me, it's an increase of doctor's appointments that I delayed over the winter. This week, I had two visits, both with first-time physicians.

Tuesday was the visit about my chair that I wrote about last week. My nurse and I took a slight detour trying to find the facility, but eventually found it the opposite direction from what Google told me. I was quite surprised to see a wheelchair scale ready for me and staff that was familiar with spinal cord injuries. When I was last weighed a few years ago, the total came to 501 lbs. Now, I'm at 509.2 lbs, with my chair. Of course my portable suction and other equipment are a little bigger than my previous measurement, so I'm sure that explains the change.

The doctor was also familiar with my diaphragm pacemaker, even though he hadn't seen one before. This is the first time in over eight years of having the system that I've encountered someone in Iowa that knew about it. Even though it may have felt like an unnecessary appointment, it was a pleasant surprise.

Well over a year ago, my dentist found that one of my front teeth is eating itself from the inside and needs to be removed. Since I use my mouth for everything, he recommended that I have an implant to replace it. However, it's an expensive procedure that my insurance doesn't normally cover as they say it's just cosmetic. The dentist and my primary doctor have been working to show the necessity for the replacement and to have it covered. Thankfully, my dentist was able to get his part approved. The next part of the process will need to happen in Iowa City.

I met with that dentist on Thursday, and I promptly became confused. He apparently does everything, extraction and implant, but knew nothing about the funding approval process. Since my regular dentist is closed on Friday, I plan to make calls Monday to see who knows what is going on. Hopefully it won't be several more months and my teeth keep intact until then.

On Tuesday, the doctor made a point I'm already well aware of, I should be thankful to still be around after this many years of the quad life. Their are a few other senior citizen quads like me, but not many. My teeth are part of the evidence of the time I've been given. This looks to be a calm week, but I look forward to more busy times as long as God gives me, and my mouth allows stick work.

Sunday, April 7, 2019

Redundant Overcrowding

The season for doctors' appointments is upon me once again. Unfortunately, I'm not alone in my quest for assisting medical professional's funds.

I've had my chair since August 2015 and never tested how well, or bad, the pressure points are on my seat's cushion. Since camp didn't go well for my pressure wounds last year, I thought it was time to get a pressure mapping done. I contacted a few facilities to see who could do the test, and found one in Des Moines. Therefore, I contacted my primary doctor for an order for the test, and it was sent to the facility.

Nearly a week later, I received a call from a different location to schedule my appointment. However, it wasn't for the test, but to see their doctor who would then provide the order and then I can, hopefully, get scheduled for a pressure mapping. If it shows their are problems, I was hoping to have enough time to get a new cushion before June. This process has already over two weeks though and I don't even have the correct paperwork in place. I'm beginning to think I should have started searching a few weeks earlier.

If you name different systems in the body, I have a specialist doctor for several of them. Those living the quad life have trouble with kidney stones, and it has been a few years since I've been checked. I called for an appointment and said any time in the next few months is fine as I'm not showing issues. The receptionist started talking about July to August as maybe the earliest dates, but had to have the nurse return my call.

A few hours later, I received the return call and learn five doctors left the office where my physician is located and he is not available. Instead, I'm seeing a physician's assistant named Sara Lee. I wondered if she provides pastries for her patients, but apparently not.

As the population ages, I've noticed it's getting increasingly difficult to get in to see doctors I've had for 20 years or more. I'm very thankful to live in a country with excellent medical care, but also wonder about practices like needing to make more visits just for paperwork. I have two scheduled this week, so I'll see what progress is made.

Sunday, March 31, 2019

Spring Talk

This week officially ended my winter hibernation. On Tuesday, I spoke with a class of Respiratory Therapy students in the Des Moines area.

After several months of not doing anything, I always feel a little rusty getting back into speaking again. However, with doing some videos these past couple months, it wasn't as bad as previous years. It was a very quiet class though, which is not common for colleges. I have learned how to work with quiet grade school students, but adults tend to have follow-up questions.

Tuesday's presentation started off three days' worth of some sort of activity somewhere. I was exhausted Wednesday night, but have been getting back close to normal energy levels again. I'm still suctioning more often than normal, but it has improved as well.

Friday and Saturday were the first times I've been able to bike in nearly three weeks. At the beginning of 2019, the bike's software did an automatic update that now shows exactly how long my legs peddled under their own power. In January and February, they were going anywhere from 20 seconds to nearly a minute without the bike's motor assisting.

My legs felt pretty calm the last two days, but I was surprised to see they still did five seconds of unassisted peddling each day. It isn't much time, but I thought it was good after missing so much and not feeling well. After 34 years of the quad life, I've learned to watch for even the smallest of changes.

With my assistants and I feeling well again, my parents were also able to go on a short one night trip. They have been trying to for several weeks, but something always came up that it had to be canceled. We are all enjoying the weather beginning to warm up again and being able to get out and active.

April doesn't look too busy for now, but I have a few appointments I need to start scheduling again. Hopefully this week will continue to be productive and I look forward to more warm days ahead!

Sunday, March 24, 2019

Slow Recovery

It has been a tough week, but I'm glad to be through it and now looking back. On Monday, I visited another doctor due to still suctioning more than usual. He said the x-ray looked okay, but gave me a third antibiotic. This wasn't my usual pulmonologist and I was told I was likely a germ carrier anyway and they were just out of balance. I don't plan to go back to that physician.

When I got home, I learned that Aiden, the boy I posted about two weeks ago, had died. He was ten years old and had been a quadriplegic for nine years. His funeral was yesterday and the past few days have been spent seeing pictures and messages to his family. A mother of another quadriplegic said she recently learned of a woman who was a very active quad had died after getting this year's flu.

The past few months have been hard for a lot of people and I'm thankful to be recovering. I started breathing more easily on Tuesday and could actually sleep some at night. I'm still suctioning more than normal, but less than I was earlier in the week. In less than two weeks, I have used nearly 60 suction catheters. My normal is maybe 3-4 per week. I ordered more a few days ago only to learn my supplier is out and it will be a while until I can get more. That has made me especially thankful I'm getting closer to normal.

After almost two weeks out sick, my main day assistant returned Thursday. She still gets tired out easily, like me, but it was helpful to get back to my regular schedule again. I kept dozing off in church today, but made it home before really needing suctioned. On Tuesday, I'm scheduled to speak to a class of respiratory therapy students. I think I'll have more to cover this year with my last few weeks' experience.

I'm very thankful that I rarely have trouble with my health. For those with chronic problems, I understand how it can get frustrating and look forward to a time of ease. I pray this week will be back to the normal quad life, but I will try to take it easy as well. Spring weather the next few days should help and hopefully end the trend of illness.