Watch the Squirts

I posted recently about using natural alternatives to pharmaceuticals as much as possible. However, now it feels like I'm the target of a sprinkler after this week's doctor's appointments.

First on Tuesday, I visited with my dermatologist to check on my skin sores. He was very happy to see the progress and decreased the amount of meds I need to use for treatment. I pray that my next visit this spring will see as much progress again. Following the skin check and checking out Ben's Burgers for lunch, it was time to work on my neck.

As I rolled back to the exam room, I wasn't sure what to expect. Soon, the doctor arrived and discussed the plans we already knew. With removal of my button's closure plug, I had to mouth any words to my caregiver to interpret. After a quick scope of my throat, he carefully popped out the button that has been with me for seven years. Thankfully, the anticipated painful extraction was very minimal discomfort.

Now, I sat quietly as the doctor investigated the opening in my neck to decide what to insert. Thankfully, he went with my spare button first. Unfortunately, the new device didn't fit quite right and was promptly removed to adjust spacers. Just like the previous extraction though, it wasn't very painful and the second insertion was satisfactory. Finally, with everything in place, I could speak once again. My neck was sore, but I was glad to be finished.

For follow-up, I now have to do drops of a steroid medicine around it as well as inside for a few days. Therefore, at bed time, I now do liquid medicine around my neck, in my button/lungs, and another one in my nose. It feels odd to use so much stuff for bed and morning, but it's the current part of the quad life.

It has been a few days since the button change and medicine started and I'm thankful to see excellent progress. The drainage problems have basically stopped and redness decreased drastically. Hopefully this has solved the issue and everything will go well for a long time to come. With everything going on, my friend John and his sons also visited. However, that will be the subject of an upcoming post!

Neck Trouble Continues

In October 2015, I was able to do something I never thought would be possible. After five years of using the diaphragm pacemaker and not needing a regular ventilator, I got rid of my regular trach and replaced it with a trach button. I loved the feeling of not having trach ties around my neck and the pain I was getting from the trach rubbing my throat.

It has been seven years since that change and it has gone very well. Several months after getting the button, I discovered it was very hard to remove and would likely need to be yanked out. However, I hoped that wouldn't need to happen for many years to come. Unfortunately, it looks like my time will be up this coming Tuesday.

All summer, I have had a lot of trouble with drainage coming from the button. I have been using a tissue under my shirts to try and keep them clean, otherwise I go through 2-3 shirts per day due to my neck. My doctor tried burning off granulation tissue twice with a chemical called silver nitrite and once with a laser. We also did two rounds of oral antibiotics, but none of the attempts made any lasting impact.

Therefore, he is now going to try to remove my trach button and put in a new one that I have for backup. If something doesn't go right, then my doctor will put a regular trach in to hopefully allow for healing. An added complication is that the company who made my button stopped producing them a couple years after I got mine. Therefore, I can't get any new ones and can only try what I have on hand.

The doctor gave me the option of going to an operating room to change the button, but that adds further logistical problems. Instead, I will be fully awake with full feeling for the procedure. To say the least, I'm not looking forward to this appointment. However, something needs to be done to try to stop the drainage.

I'm praying I will not need to go back to the regular trach again. Part of the problem I was having in 2015 is that it was starting to rub a hole in my throat due to being flat so much. I am still doing the flat routine and obviously do not want to have holes in my airway. I've heard of other quads that have had this rubbing and it pokes a hole in a major artery and they bleed to death in under a minute.

Such is the quad life sometimes, but I'm thankful for the years I have been able to be free of a trach. Whatever happens, I know God is in control and I will continue to look to Him in all circumstances.

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.