Getting a Good Rub

When possible, I like to use natural remedies and avoid medication as much as possible. I'm not one to completely refuse them and deal with the consequences, but I do what I can. One aspect of the quad life where I really apply this practice is with spasticity, or muscle spasms.

The first item is one I regularly mention, going barefoot. Shedding footwear helps with reduction of stimulation to my body and also has many health benefits for my feet. Second, I do passive range of motion (PROM) four times a day and the FES bike as much as possible. Both of these help keep my joints loose, improve circulation, muscle mass, and have recently allowed me to further reduce anti-spasm meds I take.

This has been my primary regimen for decades. However, I heard about another quadriplegic that also received massage to help. This week, I gave it a try as well and was surprised by the result.

A friend of mine from my school years recently moved on from doing physical therapy to massage at a local day spa. After a few message exchanges on Facebook, we figured out logistics in how to make it work and see what happened.

My caregiver and friend transferred me to the table and got me positioned as needed. My limbs are small, but they have strength to them and have hurt my caregivers before. I was concerned the rubbing would set them off, but thankfully they had minimal reaction. I watched and chatted as my arms received a good rubbing, and I could feel them relax. Moving to my shoulders and neck, where I can feel, my talking decreased as I enjoyed the feeling of muscles relaxing and loosing up.

When the hour-long session was complete, I got fully dressed and positioned in my chair again. Five hours later, my legs and arms were still loose, almost floppy, and barely twitched at stimulation they normally jump at. I didn't know what to expect, but I think I have another option to try to use natural methods for muscle control. It would only be monthly at most and not during the winter (too many clothes to remove and put on), but I'm thankful for the opportunity and look forward to next time.

Dealing with Transition

It happens every year, the transition from warm temps in the summer to the cold weather in winter. Bridging the gap between these two is the appropriately named fall, as temperatures begin to drop. Friday, I was out in the elements and not enjoying the new reality.

Early in the morning, my day nurse notified us she was ill and would not be able to come. Therefore, my parents would need to cover the time. They had planned on a day for the two of them to spend time together and I would go to my annual physical. Since the three of us would have the entire day, we would combine our separate plans into one.

Dad finished getting me ready for the day when he returned from work. Despite looking like a nice partly sunny day out my window, my thermostat read a temp in the 40's. Getting out at my doctor's office, the cool air hit my face with a shock. My appointment went well, but I also got my annual flu shot while I was there. I debated since I was scheduled to preach today, but hoped I wouldn't have a reaction.

When my appointment was complete, we headed to southeast Iowa with a goal of visiting the Dutchman's Store in the tiny town of Cantrel. I have heard many stories about this unique store, but never visited myself. On the way, we stopped for lunch in another larger town, but actually went inside to eat (a rarity). After dining on Chinese, we finally reached our destination. Getting out of the van each time, the sun felt good on my face, but the breeze and shade felt miserable.

The store was indeed very unique. It looked like multiple buildings had morphed into one large structure with each having it's own specialty. One section had belts and footwear, another hats, toys, spices of all sorts, and a large grocery store. The area around Cantrel has a large Amish population with many getting supplies at the Dutchman's Store. Young women with traditional Amish clothing gave curious, but polite, glances toward this guy in a wheelchair wearing jeans and barefoot.

With our main goal reached, my parents finished their purchases and we started heading home, with a few more stops on the way. As the sun sank low on the horizon, all I could think of was getting home in bed and under the blankets. I felt cold, but my parents were warm in the van that had been heated by the sun. As home neared, I was mentally planning early hibernation and wanting to stay inside and rest. However, I figured my flu shot had some influence on my feelings.

Around March, 40's-50's will feel warm again. Part of the quad life is dealing with bad temperature regulation, but I'm thankful for warm beds, homes, blankets, and the ability to get out and explore.

Honesty is Best

When I visit schools, I am sometimes asked if I know this or that person who also uses a wheelchair. Most of the time, the answer is no. However, due to connections through social media, I do know several more people that I likely never would have met. One of these individuals is Alex Malarkey and his mother Beth.

Alex and his dad, Kevin, were in a car accident when Alex was six-years-old. He received a very high level spinal injury and dad didn't have any lasting injuries. A few years after Alex's injury, he told a story that he went to heaven in the accident, but was sent back. Kevin wrote this account into a book called "A Boy Who Came back from Heaven." It was very popular and sold over 1 million copies. I believe it was also made into a movie. The problem is, the trip didn't happen.

A few years after the book's release, Alex became a Christian and boldly admitted the story was fiction, he made it up. Beth and Alex, along with others, tried getting the book taken off the market, but stores wouldn't listen. Thankfully, after years of trying, the true story was revealed and the book was no longer sold.

Now that he couldn't make money from book sales, Kevin left his wife, Alex, and took the other children with him. Alex is now 24 and lives with his mom as his only caregiver. They had been living in the same house since the accident, but Kevin decided he wants to sell it and has evicted Alex and Beth.

They went through several court sessions to overturn the eviction, but Beth's lawyer died unexpectedly in early September and left them without representation. Unable to find a place to purchase, they spent this past week moving to a temporary location until somewhere else can be found.

In many ways, Alex has a lot of the same care needs that I do. However, his injury is higher and included the brain stem which includes much more specialized care. Therefore, a house that works for his needs is not easy to find and any residence would likely require much renovating. You can watch a synopsis of his story done by Justin Peters Ministries, along with a link to help with funds.

I am very thankful for the parents and family God has blessed me with. Living the quad life is a challenge, but this type of situation is even worse in my thought. I ask for prayers for Alex and Beth that they may find a place to live soon. However, I also pray for Alex's dad Kevin, that he may truly come to God and love his entire family as he should. I keep hoping someone will buy the house and then let Alex and Beth continue to live there as renters or some type of arrangement.

Whatever comes, I'm thankful Alex came to Christ and was honest, even though it has cost him much in this life. I pray I would do the same if such a circumstance happened in my life.

30 in 30

A few weeks ago, I wrote about a new goal for September, getting a video out every day on my YouTube channel. Yesterday, I finished editing and uploading the 30th and final video for the month. If I assume they all get released as scheduled, I will have made my goal.

Getting them made was somewhat fun, but a challenge as well. I like educating about the life I have been given and trying to help others. However, I didn't like the constant feeling of being pushed to get more content out.

At night, I had ideas for script running through my head while also trying to plan time to record. I did about half the videos while in bed. I prefer recording while in my chair, but I knew that it wouldn't be possible to finish everything. Therefore, I tried to prepare messages that included a lot of data for bed recording. It was easier to show statistics and other information on screen while talking about it and not needing to remember it and then add screen shots in editing.

I have watched some YouTube channels that regularly release daily videos, but I don't envy them. Constantly planning and editing is probably a routine you can get used to, but not something I want to do. For me, it would quickly get boring as most days are nearly the same. The channels I watch that do frequent videos are usually families with several kids. Children are usually active in various items and therefore more interest for videos.

While it was a fun experiment, I do not want to continue with the routine. Also this month, I had a doctor's appointment that found I have an infection around my trach. I started an antibiotic about a week ago, but I have to take extra precaution in order to keep my gut working correctly.

The quad life is one I know well and I'm thankful God has given me the ability to do this. I hope to do more videos soon, but only after a few week's break.

Falling Apart or in Control?

Since early 2020, I have not watched mainstream news channels, such as ABC, CBS, NBC, CNN, etc. I may go to my local CBS website for weather updates on occasion, but that's about it. I haven't missed their reports and generally have been fine without it.

Sometimes, I do watch short segments online from Fox news to stay aware of what is going on in the world. The items I watched this week reported on the large increase in violence around the country as some states basically do away with punishment. Another report was somewhat sarcastic as illegal immigrants were brought to areas that say they welcome migrants, but actually don't want any.

Whether you watch the news or not, it isn't hard to see the world is increasing in chaos. Much blame is put on a certain political party, but this isn't the sole source of problems. Looking through history, before it's erased, you can see it building over the last several decades. It has increased as trust in the Bible has decreased.

Starting around 1800, evolutionary theories began to grow in the church. Many theories were proposed that basically said we could reinterpret the clear teaching of Genesis and make it say what we wanted. If you can't trust the opening pages of a book, the foundation it is built upon, why believe the rest? As generations were taught this understanding, less of the Bible was believed.

In the 1970's, children went from being precious gifts from God to a blob of cells that can be killed. More recently, marriage being for one man and woman for life (Genesis 1-2) has become almost anything but this definition. Finally, a person doesn't even need to be the gender they were born as and can pick from over 100 options.

Reading Romans 1, this type of situation is described when a nation is under God's judgment. I continue to pray for a return to Christianity, but am afraid the trend toward more trouble will grow worse. No matter what is going on though, I remember God is in control and is the King of kings and Lord of lords.

For the next several weeks, as another election cycle looms in the United States, I expect to see more outrageous claims and actions. However, I look to the fully reliable history in God's Word and remember that nations come and go, but the Lord's will carries on.

Olmstead Term

In 1999, the US Supreme Court made what's called the Olmstead Decision. The main point was that people with disabilities have the right to live independently, even when using state-funded resources. However, each state is responsible for monitoring its own compliance of this law.

Iowa supports an organization called the Olmstead Consumer Task Force to monitor the state's adherence to this decision and recommend changes. I joined the task force in late 2019 for a three-year term to see where I could help.

Full group meetings were held every-other month at a library near Des Moines. I wasn't sure about attending the four-hour long meetings in winter, but an option was available to join by phone. I think we had three meetings before the pandemic started and every one since then has been completely virtual.

For the first two years, I didn't really know how to help. I commented on occasion about issues I experienced, but not much else. Sitting here on my computer watching people give lengthy reports on Iowa government issues became a test of paying attention and awake. A year ago, I was able to join one of the sub-committees to help with more specific items.

Now, I was able to contribute more to the monthly meetings and feel like I was actually helping. This summer, I initiated a project to address accessibility concerns at a large event held in the state annually. Finally, for the first time in nearly three years, I felt like I was helping and making a difference.

Friday was the last meeting of my term. Several other members voiced opinion with wanting to do more, just as I wanted to do. I felt bad leaving at a time that I could possibly help more Iowans with disabilities. Therefore, I agreed to serve another term.

I have no idea what will happen in three more years, or if I'll be able to complete the term. I also don't need more things to do, but such is the quad life. I pray that I can be a productive member and help others through my participation, however long that is.

Self-Imposed Labor

We have reached September and Labor Day weekend in the U.S. Throughout August, I was looking forward to having a calm month ahead. However, my head wouldn't shut off one night and now I have another full month, even though my calendar is quite sparse.

September is National Spinal Cord Injury awareness month. In 2019, following the example of a friend, I posted something SCI related on Facebook every day of the month. With 30 items, I covered a lot of the aspects of living the quad life and I received several compliments on the project. At some hour of the night around August 20, I got the idea to do the same this year on my YouTube channel.

The next day, I found the list of items I covered in 2019 and adjusted a few to better fit video format. This was all great, but I now committed myself to recording, editing, and uploading 30 videos. I have been struggling to get two out per week the past few months and this would be a lot more work.

Unlike Facebook, I can at least make videos ahead of time and schedule them to be released on certain days and times with YouTube. If I was going to make it happen, I determined I needed to have at least one week's worth of videos finished before September 1. By August 30, I had completed and uploaded eight videos. They weren't all sequential, but I had the first few days covered at least.

Now, I am trying to make at least one video per day and have done two a few times. As of this writing, I have now uploaded 12 videos and hope to get another one finished before this blog goes live. I enjoy helping people learn and it has been fun getting to teach about the life I've been given. The few videos that have gone out to the public have already received good comments and more views than I normally get.

Hopefully, I can finish this project without getting overwhelmed. Maybe by the time the middle of the month arrives I will be able to slow down. However, I wouldn't count on it knowing me.