This is me, Barenaked…

My regularly scheduled blog will not be airing today as I bring you this special report. Instead, my next blog post will release at its standard time in two weeks. 

Some people have questioned why I say I am not deteriorating, yet lately, I have shared my struggles. Let me explain why I say these things, although I can only speak about my experiences. First, there has been a significant difference for me between pre and post-pandemic exercising and blogging both. Second, I have gone through something like this before, and although I recover slowly, I still do return to my fitness level.

Before the pandemic, my life was full of activities keeping me busy and always moving.  For example, I swam three days a week for two to three hours each day, giving my body abilities I lose without exercise. If you read my blogs before the pandemic, I wrote about things like when I did my 5K in my wheelchair, something my endurance encouraged.  I also learned how to swim without using my legs or a flotation device, giving me another form of fantastic fitness. Three months after learning this new swim skill, I swam eight miles to raise money for a swim challenge the MSAA put on.  I also wrote about the various sports and extreme sports available for wheelchairs and the one sport that piqued my interest: kayaking. Lastly, I wrote about my MRI, which showed no new activity. I blogged about all of these things, exhibiting some great activities I accomplished, and my multiple sclerosis did not hold me back.

During this pandemic, I have not been able to exercise the same as I had before. And this is because the pool releases the bonds of gravity, making it exceptionally easy to reap positive impacts from total body exercise. Unfortunately, this information means my physical struggles have been a little bit more frequent. Although, I have been through a stoppage before and have recovered. Be that as it may, my doctor pointed out some of the most recent issues I blogged about are not MS-related, reminding me father time does not care about your problems and continually moves forward.

This blog refers to me and my choices in life and discusses the path I chose and why I zigged where others might have zagged. The preferences we make in life are not right or wrong but are just the decisions we make, and we have to live with any outcomes. I have never told anyone not to take any MS medications without doing basic research.  Either we make our own decision, or someone decides for us. Yet, no one should scare you into taking a drug that might not be right for you, do your research.

In the beginning, I let the doctor decide for me because he is known as a great doctor in Columbus, Ohio. Although we did not discuss options or even medications on the market, he merely said take this and gave me details on receiving the meds in a cold pack via UPS.  The first medication he prescribed I took for two years, yet sadly it seemed every appointment I had deteriorated a bit more.  His recommendation was always to wait and see, which led to the next visit and declined even further.  Finally, after two years of this bad body breakdown, he put me on a different medication in which the degradation continued.

After deteriorating for the third month, when starting the new medication, I began to do research. There were four MS medications available at the time, and I had failed on half of them. As a result, I no longer have faith in the Pharmaceuticals for MS and searched to find what others were doing to manage their MS. Since diet seemed to be a significant factor, I followed the doctor Swank diet, specifically for multiple sclerosis. 

I then found something called low-dose Naltrexone, aka LDN, which has been helpful for many MSers.  LDN was FDA-approved in the 1980s for drug and alcohol addiction in much larger quantities, that plus the thousands already taking it, let me know it is safe. There is an annual National LDN Conference where doctors from all over the world get together and discuss its benefits. I researched diligently for well over a month, and I even found a doctor to prescribe LDN. When I began taking this medication, others on LDN commonly said any symptom that began six months prior to starting the medicine could get better. Only some of my issues got better, yet when my mom saw me walking with a cane and not struggling with my walker, she cried like a baby. I have been taking LDN continually ever since that first prescription and plan to continue.

Do your research because who is a better advocate for you than you? Do not listen to only one person when doing your research and if anyone spouts statistics, say thank you and keep studying. It sounds like a lot of work, and it can be, but it is a beneficial burden when your health is concerned. Read as much as you can and learn why this medication is better than that one. Why is the chance of becoming ill less likely with one drug over another?  You have options, so learn them and do not let others make your choices for you.  I understand it can be overwhelming, so slow down, take a breath and find a friend or family member to help you get in a good headspace. Join an MS support group or two since they are living it, they can tell you the facts. I do not feel it is as bad as you think it is.

Also, go to any number of online MS support groups and find out who is not taking any medication and is doing well. I have known people to have used the DMTs and do well and others who take it and do not. I also know people who have not taken any of the medications and done well and others not so much. And for those who spout the statistics like they are the literal words of God, your statistics have failed me not once but twice with the MS medications I tried. This fact proves statistics are nice but not the end-all-be-all.  There is no right or wrong answer for everyone, so you have to decide what is best for you. Once again, who is a better advocate for you than you? It is your life and your health so determine if you want to make the decisions for yourself or do you want others to make the call for you? These words are just my humble opinion as a twenty-year MS veteran.

We are all trying to be the best of ourselves. So do not let someone tell you who to be.

Part one: The Fault in Our Cosmos…

There are many health benefits to the simple act of standing in an upright position.  However, the bipedal part of society does not need to concern themselves with this issue as they already reap any ambulation rewards. Strengthening bone density from bearing weight onto your lower limbs seems small but is a vital part of life. Skeletal deterioration was a quizzical concern NASA had to carefully contemplate to help astronauts when returning from space.  When visiting the cosmos, your bone density weakens one percent each month in zero gravity. NASA finally designed an exercise machine allowing an astronaut to exercise and feel gravity like on earth.

Standing also helps with spasticity in the muscles caused by pitiful positioning, circulatory slowing, and poor posture.  The bipedal propulsion position also encourages proper blood flow, which is difficult while seated, causing more problems.  When an ambulatory individual is sitting at the office, many of these issues plague them as well.  These concerns and the fact many people are heedful of healthy habits inspired the resurrection of the standing desk.  These physical challenges make the simple act of walking on two legs an essential part of life.

For several years at my old house, I would stand using a grab bar and sink in the bathroom to do five squats, and calf raises hourly.  When I moved, the size and shape of my new house made this procedure more difficult to continue because of the travel time and inconvenience. In addition, the stopping of my mild exercise program encouraged my leg muscles to deteriorate, making many tasks a struggle.  Wanting to reverse my lower limb loss, I decided to go to the VA for physical therapy with the sole purpose of learning to stand at home with limited assistance.

While at the VA physical therapy, I was able to stand with minor assistance and use the parallel bars. I thought standing repetitiously at the bars would reward me with positive results, yet sadly, it is not in the cards for me to stand unassisted.  The physical therapist and I talked, and the conversation evolved into power-standing wheelchairs and the benefits I could expect from having one. I clarified my intention of not going to a power chair until it was a physical requirement I could not ignore. I want to use my arms until I lose my arms, I proclaimed fervently. The therapist saw I was steadfast in my ideals and quickly clarified it was not an either-or issue.  She explained many of her clients have both types of chairs. They use each depending on the day and how they feel. However, they stand a lot at home using the standing chair because more benefits are received as more standing is achieved. 

The next thing we did was schedule a power chair representative and a veteran rep to visit my home.  The delivering duo came to my house and brought out one of these mechanized monstrosities to show its capabilities. Most power chairs have limited skills, only moving anywhere on a single plane like forward and backward.  Because of its limited abilities, the motor is small and sits directly under the driver of this chair.  This action means the footprint of these armchair accommodations is relatively small for such a big seat. However, a standing power wheelchair must counterbalance a standing human and has a larger footprint.  The sales rep sat in the chair and began moving levers and wrapping straps, showing me how it worked.  They then asked me how best to position the chair to transfer into this colossal contraption safely.

When I pulled alongside this massive machinery, two things stood out and made me realize a transfer would not occur.  The first thing that stood out to me like a burnt potato chip was the six-inch gap between the two chairs.  Next was the four-inch height difference on the other side of the six-inch gap.  Like Evil Knievel jumping over Snake River with his jet-powered motorcycle, this too would be a failure if I tried.

I started this blog entry four months after the beginning of the pandemic. It is part one in a series talking about attaining and maintaining my power-standing wheelchair. I had to wait for the VA to figure out my options for getting into the chair by myself. The possibilities for me, self-mounting this motorized mechanism were plentiful but none yet successful. The task is essential, making options extensive. Stay tuned for the next episode, where I discussed the battle to plop my posterior to the proper position to transition this Titan Into a training tower to teach my leg bones to build more density.

Machines will save our lives, not dehumanize.