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.

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 a 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.

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.

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.

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.

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.

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.