Sunday, June 13, 2021

Six Years and Four Minutes

In July 2015, I first used an FES bike for my legs. Since then, I have regularly used the system and written about on here before. In the nearly six years I have biked, my legs have pedaled over 1,450 miles over hundreds of sessions. Those numbers are impressive and I'm very thankful God has allowed me to do it. However, I have been concerned about other results during my times on the bike.

As a review, the bike provides electrical stimulation to my leg muscles through pads that are placed on them. A motor in the bike moves the pedals while giving stimulation. If my muscles react strong enough to the provided pulse, the motor turns off and my own body does the biking on my own.

Early in 2021, I had a number of times during my 30-minute ride that I would go for a full minute or more on off the motor. My legs responded to the stimulation correctly and were able to bike without the motor taking control. It also meant for nearly 29 minutes I was just along for the ride, but it was at least something. Unfortunately, my legs have gone lazy the last several months and only done 7-30 seconds independently each time. Biking is still great for circulation, some muscle building, and bone maintenance, but it's best if my own muscles can put forth effort and also burn calories.

Thinking to my bike history, it has been 3-4 years since any of my stimulation settings were adjusted. On Thursday, I connected with a remote support therapist from Restorative Therapies (the bike manufacturer). The physical therapist took my history, connected to my bike's computer, and made a few changes. She slowed my speed from 40 RPM to 32, increased the power going to the electrodes, and other adjustments.

As I watched my legs slowly go in circles, I noticed the computer recording much more power coming from my muscles. At the end of the 35-minute ride, they had gone for 2:55 without the motor. On Friday, the time increased to 4:04 without assistance. Both of these times are new records for me in the years I've been cycling. I now go about 0.2 miles less per session with the decreased speed, but I would rather have quality than quantity.

Even though we live in a sin cursed world that includes disabilities, God has not abandoned us. I'm thankful He has provided technology like this bike to help with many areas. I look forward to this week's biking and to see what results come. After years of occasionally burning 0.1 calories, I may even double that amount for a full bite of ice cream!

Sunday, June 6, 2021

Finally a Week Alone

With the world shut down last year, very few vacations were made by anyone. It has been getting increasingly difficult for my parents to get away anyway, and they weren't able to go on any of their regular trips. The year is half complete, but they were able to leave last week Sunday afternoon and returned yesterday evening.

The challenge for my parents is finding enough coverage for me when they normally are responsible. Five hours every evening and weekend days are hard to fill for several days in a row. However, for this week, one caregiver agreed to do three nights, my aunt and uncle two nights, grandmother and aunt one night, and another occasional helper Saturday evening. It's a precarious house of cards, but the plan allowed them to be free of the house.

Sunday and Monday evenings were my aunt and uncle for three hours, and one of my older, retired, helpers was going to cover the remaining two hours. Unfortunately, she was sick, and unable to come, but my relatives were okay with staying longer and my day helper Sara covered one of the two-hour slots.

It was a great weather week in Iowa. Part of my household chores was watering flowers and tomato plants in various locations. I made sure they had good drinks and monitored the plants on the deck for at least 30 minutes a day. It meant sitting in the sun and enjoying the outdoors, but I was willing to make the effort.

Living as a bachelor, I tried a few new, and old, recipes for supper and found another option I think my parents would also like. Saturday evening came, and the scheduled caregiver didn't come at her expected time. Calling her, I discovered she wasn't aware she had been scheduled and was already busy with something else. Sara had already been with me for ten hours, but my helper that was feeling ill early in the week was well enough to come and sit with me until my parents returned.

In the quad life, some days get challenging and I have to quickly adapt and come up with solutions. I'm thankful my parents could get away again as they enjoy. The caregiver that helped three evenings is scheduled for surgery in a few days and won't be available again for a few months. Therefore, if they didn't go this past week, my parents may not have been able to go at all.

Now that everything has returned to normal, it's time to get back to other projects. However, those will be saved for future entries.

Sunday, May 30, 2021

Memorial Vacation

Memorial Day weekend has long been the unofficial start to summer. Most kids are off from school, the weather is nice, and families get a long weekend to get away. Last year, everybody was stuck in quarantine at home, so I imagine this weekend is especially busy all around the country. For me, it has been just that.

Yesterday, my parents and I picked up fast food for lunch and had a car picnic. Afterword, we went to my paternal grandfather's grave site to add a flower to the existing decorations. The rest of the day, dad spent running around the house doing yard work, vacuuming, and other household cleaning to prepare for vacation.

A few months ago, mom got it arranged that she and dad could be gone this week to celebrate their 45th wedding anniversary. They normally go out earlier in the year, but one of my evening assistants was busy with helping at her school job until now. That same caregiver is scheduled to have surgery in a little over a week and won't be available until late summer and then return to school. Therefore, my parent's only option was this week.

Mom officially got off of quarantine a few days ago, but is still feeling the effects of having Covid. Coughing still comes and goes and she gets tired after not much work. I think if they had an option to delay going out a few weeks, they would. However, I'm guessing their trip will consist of much napping beside train tracks near various small towns in the Midwest.

This morning started off early with me preaching at a small church about 45 minutes away. It was my first time leading a full service instead of just giving the sermon. I have wanted the opportunity to take a full service before, but it took more planning time and prep work than I fully anticipated.

In a few hours from when this blog goes live, I'll have the house to myself for the week. Assuming I don't completely fail in my responsibilities, I will report on the experience of the quad life in the next entry. Until then, remember those who have fought and died for the freedoms we do enjoy and don't forget that a time will come when each of us to also leave this world and enter eternity.

Sunday, May 23, 2021

School to Staying Home

Tuesday morning was my final grade school visit for the year. The students were four days away from being done for the year. As usual, I arrived during recess to an empty room and had time to look around a bit. The day's schedule had me in the morning and a class party in the afternoon. Exploring my

surroundings further, I spotted a large bag of M&Ms propped against a bag of microwave popcorn. I started to wonder if I could prolong my segment of the day so I could join in the festivities.

Ten minutes after I came, the combined 3rd and 4th grade class got off from break and I met the new, to me, instructor. The total class size consisted of eight kids, four per grade. With the small class size and basically as much time as I wanted, I tried adding a new lesson. In addition to having the kids write by mouth, like me, I also had them try writing by foot. It helped demonstrate other disabilities, such as not having arms, and was fun for everyone. The students concluded mouth writing was easier than feet, which was opposite my prediction.

When my caregiver and I got home, we were greeted with a note on the door into the house. While away, my parents got tested for Covid, with mom coming back positive and dad negative. She has suspected something was wrong a few days earlier and as a precaution, had stayed away from me. Since the positive test, mom has been in quarantine in the basement until ten days have passed.

Therefore, it has been dad running the house and helping mom and I on his own. Mom has been directing supper items from her post in the basement and giving directions on how to make the dish. It has looked like dad running around like a masked headless chicken. During the day, I have tried to have my caregivers help where they can to decrease the work load.

Thankfully, I have felt fine and not shown any symptoms of having caught it. For precaution, I will be starting to take a couple extra supplements, zinc and vitamin D, that are supposed to help boost the immune system.

I'm thankful for the blessings of health God has given me in the quad life. I look forward to when mom can be released from her quarantine, but am thankful she doesn't appear to have a severe case. This week will primarily be spent at home, but I hope the sun will come out and allow for time on the deck.

Sunday, May 16, 2021

Reaching Out in 2021

It almost seems like every week, the world is becoming more hostile, especially toward Christians. In Canada, three pastors are in the public spotlight for being arrested or heavily fined for having church services. Life is also seen as just an accident that arose from evolution, and not something to be cherished as a gift from God. Therefore, funding for abortion is now greatly increasing as well as the availability of euthanasia.

No matter what is happening, Jesus said to go into all the world and make disciples of all nation (Matthew 28:18-20). Much of what is going on around us is a symptom of hearts that have turned away from God. Passing laws that restrict evils such as abortion are great, but they can be switched back again in another generation. The only lasting solution is turning hearts, and minds, back to Christ and why life is unique.

A little over a week ago, I worked with a gospel outreach group at an annual Dutch heritage celebration. I have helped with the group every year (except 2020 of course) since they started in 2017. This year, groups were sent to certain sections of town with one person designated as the group leader. For those that were inexperienced at outreach, they could get training with their leader. Since I have been out for several years, and preach on evangelism, I was designated as one of the leaders.

Every morning started with group training about evangelism basics or apologetics. After the hour long session, we then spread out around town. One of the women in my team was normally content with staying at home and avoiding people. However, after some tips on how to approach people and ideas for conversation starters, she did share gospel tracts and prayed with a few people.

I talked with one man who said he was a Buddhist, but believed because of Jesus' sacrifice on the cross, everyone goes to heaven, even Hitler. I went through a few questions and shared with him, but he wasn't interested in listening. It was still a friendly conversation and I was able to leave a gospel tract with him and I pray he will have a change of mind while he has time.

The quad life doesn't need to be boring with sitting at home all the time. I'm thankful I had this opportunity again this year and hope for more to come.

Sunday, May 9, 2021

Sleepy Mother's Day

The second Sunday in May has been dedicated to celebrate mother's. This year, I am thankful for all my mom does, while trying to stay awake.

Monday afternoon, I received a message that my primary night nurse was sick. He ended up being gone all week, but will hopefully be back tonight. My other caregiver covered a few nights, but I haven't had anyone for night coverage since Tuesday. Therefore, the last four nights have been mom and I staying up until 1:30 in the morning. After about 4-5 hours of sleep, dad gets up to take over.

We knew Friday and Saturday would not be covered, and that was going to be a challenge already. Now with it doubled, the three of us feel like zombies during the day. I also had two days of helping with an outreach group (upcoming blog) that started with an hour of training. The speakers were interesting and ones I looked forward to hearing, but I kept yawning while they spoke.

Nights like the last four are times I'm even more thankful for the mom God has given me. She has had more responsibilities lately in helping other family members and continues to deal with her own health needs. Every week, mom continues to work with my caregiver's paperwork and keep everything straight so I can live at home. Whatever is happening, she continues to help in every way possible.

I'm most thankful for the instructions mom gave me when growing up. She taught me to read the Bible and trust God's word in everything. Mom also worked to make me as independent as possible and to help me get through school. Some days my independent nature doesn't agree with hers, but we have learned to compromise as needed.

Every day should be one where parents are recognized for what they do. Thank you mom for another year with many unexpected circumstances, but adapting as needed for all of us.

Sunday, May 2, 2021

Stuck in the System

When I received my spinal cord injury in 1985, most of my medical expenses were covered by private insurance through my dad's employer. In 2014, due to the Affordable Care Act, I nearly lost that coverage. After a long trial, I ended up with private insurance covering nights and a program through Iowa Medicaid covering my day hours. This is what I have been using since that time, and it appears with no alternative.

In the last few months, my parents have celebrated their birthdays; with both either at or near retirement age. When most people reach this milestone, they look forward to decreasing their hours at work and doing other activities they enjoy. However, that apparently isn't something my parents are allowed to do.

Mom discovered that if my parents go off of private insurance and start taking retirement funds, it would disqualify me for the Medicaid program I use, as well as other consequences. Iowa uses what's called MCOs, or Managed Care Organizations, for all but a few recipients in the state. I'm one of the few that doesn't use an MCO, and it's a good thing. Many stories of problems with Iowa's system have been documented, including receiving less coverage. We can't find anyone to tell us for certain what I could get covered if I switched, and it very likely would be much less than I use. Also, since my private insurance is through dad's employer, he needs to continue working full-time to receive medical benefits.

This has been an upcoming issue my family has known was coming for about a year. We have looked for solutions, but it appears the only guaranteed answer would require an act of congress. I don't have any plans on running for an elected position, so it's very unlikely that anything would change in the next decade, or three.

Seeing all my parents have done for me, it has been hard not feeling responsible for keeping them from enjoying what they have worked decades to achieve. While attempting to sleep, thoughts of going to a care facility to ease their work load have filled many nights. However, I know that moving to a facility would also end everything I do outside of home.

The only comfort in this, and all, situation is diving deeply into God's Word. Just as He cares for the birds of the air, He knows our needs as well. I have had many times in life that looked uncertain, but God has carried me through. The time before a solution comes is hardest, but it does come in God's time. I have no idea what that could be in this situation, but I will continue to pray, wait, and do His will until change comes.