How to spot a fake disabled person…

I have been using a 15-year-old desktop computer to write these blogs that many have loved. Of course, some things come to a crashing end, and my computer has, so I am having a friend set me up anew. He is not an archaeologist, but hopefully, he will still have me up and running lickety-split and back on track. Alas, the post for this week is an “oldie but a goodie,” though it is brand new for a few of you. Rest assured, my next blog is good and all new and will remind some that not everything is what it seems. You think you know, but you have no idea.

How to spot a fake disabled person…

If you are reading this post to find out the clues I can teach you so you can spot that faker, then read on. For example, you saw a person park in the handicap space and walk inside unassisted, so you want to call them out. You might have observed an individual use a wheelchair one day and a cane a few days later, and you want to bust them. Well, the truth is: LEAVE THEM THE HELL ALONE!

People with disabilities can have physical challenges that are not visible yet cause struggles you could not imagine. But unfortunately, sometimes, they get attacked by a self-entitled morality vigilante that assaults them verbally or worse. I have heard of these onslaughts as demeaning notes left on a car windshield or a vicious verbal violation that left my friend in tears for hours. This abuse was after she felt exceptionally jubilant because her illness had her bedridden the previous four days, and she was finally in a bipedal propulsion position.

Just because you see a person using a wheelchair one day and a cane, the next only shows that disabilities change daily. The pain level or physical abilities could be high one day and drop like a rock the next day. When you see a person park in the handicap spot and walk in the building with no mobility aid, they could have a heart condition. These invisible symptoms can be as numerous and varied as fish in a lake, meaning: LEAVE THEM ALONE!

The truth is I have heard whispers of a widespread scam of people faking disabilities, and it is simply not true. I heard one person say they let these fakers know I see them so the real disabled can park there. Then I asked him what an individual with a disability looks like, and without giving him a chance to respond, I stopped him. I explained he might have good intentions, but in fact, he is probably about to ruin someone’s day. We cannot spot a person with a disability in a crowd like a guy wearing a fluorescent ball cap. Some people with disabilities stand out because of a medical device like a walker, wheelchair, or oxygen mask. However, many have unseeable disabilities that need your love and support, not condemnation and criticism.

The ignorance of society and the way entitled people can treat others simply makes me sad. To all those who do not have enough in their lives, making them want to criticize others, I say STOP! Live your life to the fullest and let others do the same because what you think you see is not what you actually see. If your life is that empty, find a hobby and spend every bit of your time controlling every aspect of the said hobby. Most importantly, since you know nothing about strangers’ lives, allow them the peace to live their lives as well. Everyone should make this a topic of conversation with friends and family, as the truth needs to be shared.

You may think you know, but you have no idea.

A goal without a plan is just a wish…

Before the pandemic, I pondered periodic pithy peregrinations to various places around the country. Yet, before I embark on one of these journeys, I must make unexpected arrangements. For a person not living with a medical malady, preparations for a trip are an effortless endeavor. However, it is crucial to be meticulous when making the same provisions for a person with any ailment.

In 1910, Lieutenant General Baden-Powell started the Boy Scouts of America. The motto he used was “Be Prepared,” yet it is not only the Boy Scouts who use this motto, reminding us of the importance of preparedness. We need to be ready for anything in this MS life full of unpredictability, uncertainty, and ambiguity. Therefore, it is crucial for us to carefully contemplate and consider our every move, whether picking, packing, or planning. It is true everyone would benefit from methodically scheduling and booking for an extended excursion. Yet, the mismanagement of time for a Non-MS individual may only cause a minor inconvenience.

For many MSers, time miscalculations can cause extremely adverse outcomes no one wants which to contend with. Some key factors need to be considered when I take a trip, such as the time and reasoning for said travel. These seemingly simplistic standards change everything I need to do to prepare for a plethora of possibilities. All aspects of packing, planning, and scheduling have to be changed depending on the reasoning of the excursion. Of course, it changes how much clothing, medical supplies, and other necessities I will pack. I even need to plan whether I am visiting a person, place, or thing.              

I must keep the weather in the forefront of my mind, focusing specifically on the temperatures I will probably encounter. For example, will it be hot enough for my cooling vest, or will the low numbers on the thermometer deeply dip, demanding winter wear? Also essential is if it is rain, snow, sleet, or hail in the future, it is vital to prepare for any form of precipitation.

Will this be a simple overnight excursion or an expedition, including multiple days that I am planning? There are other issues to examine for each, like the amenities I will stay in are definitely of significant concern. The bed must be lower to the ground for me to transfer to and from the bed safely. It is a requirement there is a shower chair with a back wherever I bathe and a transfer board to aid my transition. The last mandatory item for the bathroom is a toilet that meets ADA height and space requirements for maneuverability.

A map of the area or basic knowledge of the surroundings is valuable information to have. For example, do I know where the closest hospital and pharmacy are compared to where I will stay? Also, since we all like to eat, what is the locale of the non-fast-food restaurants, and are they wheelchair friendly?

These tasks may be overwhelming to the inexperienced, but my wheelchair felt awkward initially and is now second nature. In most cases, one phone call can resolve many issues all at once, while in this connected world, a search for this type of information is straightforward. Finding these facts is like playing hide and seek with a four-year-old as they take minimal effort to find.

If you fail to plan, you plan to fail because even Santa Claus makes a list and checks it twice. I am sure the man in red made a few mistakes initially, so do not fear missing something. I learned to Be Prepared in the Boy Scouts and how those two words can rescue you in a tight spot in the Marine Corps. As an MSer, you learn how living by the motto can help save lives.

We must prepare and prevent, not repair and repent.

Cupid, where are you???

All of us need to be wanted, or is it we want to be needed? No matter the case, as humans, we are built to love and to be loved. I heard someone say everybody’s got something, so stand tall with your issue and help others learn and maybe even comprehend. That being said, romance and multiple sclerosis have been a significant discussion point with MSers for an extremely long time. I have a deep-seated fear of dating, like a schoolgirl watching her first horror movie. So knowing I am as confused as many on the topic of love, I thought I would discuss it from my point of view.    

The definition of love is subjective, although some may say it is nebulous. For those of us with any medical conditions, the idea of love is a twisted, torturous topic no one wants to discuss. This concern of finding our forever love depends on one’s personality and willingness to put themselves out there for the world to see. These issues also depend on their symptoms to the viewing public or even a potential date. It may be easier to discuss less apparent symptoms with a companion by making funny statements like “occasionally I move like a weeble-wobble and may need to sit down before I fall down.”

However, my MS is more impactful, like my visible-to-the-world wheelchair, which is impossible to hide. It could be my less than obvious distance vision concerns or any of the myriad of MS maladies plaguing my life. I am unsure how my MS will impact my life since I rarely get out during this pandemic. I have always been shy, and my multiple sclerosis and wheelchair have pushed my trepidation to heights unknown. This mechanical monster securely stuck to my rump like a chump is not like having a cool car or nice clothes to attract someone.                       

Another commanding concern is that I do not drive, and the idea that I must ask for a date to pick me up for our dinner is dreadfully difficult. It makes me feel awkward, like if I was asking my partner to cut up my steak. It is annoying enough requesting a date to deal with a guy in a wheelchair for a few hours through dinner and a movie, let alone long term. Society is now accepting the disabled in everyday life, so I wonder if handicapped parking is enough of an attraction for a female suitor.

Coping with wheelchair life is not for the faint of heart, and I fear burdening a potential girlfriend by putting that anchor around her neck. This feeling weighs heavily on my heart, as I cannot imagine adding my defective deficiencies to a woman’s life for a short or long timeframe. Whenever I see a woman I would like to ask out, a video plays in my head of her yelling and telling me she did not ask for this. These thoughts terrify me to the core and encourage me to avoid any probable plight permeated plans to stay safe.

I run a nonprofit organization and discussed business with a woman who had given me her business card. After several minutes, the conversation became more social, and soon, unbeknown to me, she became a little flirtatious. As she walked away, I heard her say something like text me and my friend, sitting close enough to hear everything, explained how I easily could have asked her to dinner. I tried texting later and must have said the wrong words because I never heard from her again. This situation proves I am going to be the biggest downfall in my romantic life. I would love to say this was a rare occurrence of my ignorance, but it is more common than uncommon.

I have tried the anonymity of online dating and found I did not have the right words to woo any of the women to simply respond. I do fancy myself as a budding logophile, but I do not even possess the verbal skills needed to attract a starving dog with food. I contacted many women but apparently did not use the correct words to encourage any response, not even merely saying go away.

I thought being anonymous during my online search, in the beginning, would allow them to see me first and not my chair. I assumed if these women heard the fumbling and bumbling guy I am, I would sound like many guys. Sadly, I did not have time to talk to them because they never replied to my messages. So, alas, I am not an internet dating guy.

They say love is hiding behind every corner, I must be walking in circles. I get down on my knees and pray I will not be single forever or even much longer, but who knows if that will help. Others often tell me I am a good-looking guy with a super smile and have a lot to offer, so maybe I am simply overqualified. I wish this dating thing felt less like swimming in quicksand and more like swimming at the local pool because I can definitely swim. When I was on the assembly line for my creation, confidence was on backorder, and they upgraded my smile instead. These facts have not helped my shyness nor helped any part of my life except at job interviews.

I was always the guy helping others, whether it was giving a hand to a friend who was moving, carrying groceries, or even assisting a stranger to push his car to the side of the road. Currently, I cannot do minor or major things for people, let alone do anything for a potential girlfriend or wife. This situation makes me feel shameful, embarrassed, and even a bit inadequate. They say there is somebody for everyone in the dating world, and mine is probably pulling a push door right now. I hope she is not in Taipei or some other faraway land because long-distance travel is improbable for me. All of this means loneliness might be my wife for the foreseeable future as I think about who I was before and see who I am now.

Are you struggling to find your mate? Remember they are looking for you too.

Unexpected inspiration…

My friend John recently told me I was an inspiration, but others have previously said it as well. Although his kind words humble me, I do not feel like an inspirational person as I have only done things others frequently do. Yet, my friend explained I have a great attitude and jovial disposition even after conquering adversities precariously placed in my path. For example, was it the 5k I did in my wheelchair proving to a buddy who all but dared me to take on such a courageous conquest? Or was it the eight miles I swam without the aid of my lethargic lower limbs to raise money for a charity that causes me the continual compliments. Maybe it was leaving the US Marine Corps a disabled vet and not letting that stop me, as some before me have done.  John shared that those things and others gave him these feelings of revelation, motivation, and adoration.

I explained to John that I was not trying to impress or motivate anyone but simply do what I needed to live my life to the fullest. I know several non-disabled people who sit on the couch making excuses while watching kids grow, friends go, and life blow. I do not want life to pass me by, plus my monstrous MS malady has gotten worse every time I sit too long in one place.  I do not feel like an inspirational person but let me share a few stories of those who inspire me. These individuals motivate me to keep moving forward and allow nothing to put a horrific halt or hamper on my headway.

A soldier named Travis Mills came back from the Iraq war after an IED explosion incident.  He was the fourth quadruple amputee who came back from this war, and although he was lost mentally briefly, he quickly got it together. Most would have understood if he played the sympathy card upon his return; however, that is far from the case. With his wife and family by his side, currently, he does more in one day than most of us do in several days.  He speaks with all returning veterans, mainly focusing on the severely wounded, showing what a positive attitude can do.  He has an exercise training regimen rivaled only by die-hard fitness trainers.  He also wrote a book sharing his life story and does book signings showing no signs of slowing.

There is another man who was on the X-Factor named Immanuel, who is physically debilitated and unsure of his birthday. Immanuel and his brother were born in the war-torn country of Iraq, where a nun found them in a shoebox. They were adopted by an Australian family who showed them the love and affection they deserved as infants. Even though he is ambulatory, his legs and arms are not in great physical shape, although his smile puts most to shame. Nevertheless, he stood on the X-Factor stage with a slight tilt and great lilt and sang a beautiful rendition of Imagine by John Lennon. Faced with life’s difficulties, he stood up and stood out when so many would have hidden in the house.

Another person who inspires me is Kenya Sesser, a woman born in Thailand with no legs. She was an abandoned baby left on the steps of a Buddhist temple in Pak Chong, where monks raised her for the first two years of her life. After four years of foster care at six, Kenya was adopted by an American couple living in Oregon. Now living in Venice Beach, CA, she has a resume that puts others to shame, including modeling, acting, surfing, skateboarding, and being a Paralympics athlete. Sesser shows how a can-do attitude can get you very far in life when you take this brick wall of no legs and find ways around it over it or even through it. With no legs, she stands taller than most full of pride and reminds us all to look directly at our issues and say, get out of my way.  

Nick Vujicic was born with no arms or legs in Melbourne, Australia, to two loving parents. Neither he nor his parents knew what kind of life Nick could even have in the early years of his life other than constant and continual care. However, his severe struggles and significant setbacks did not keep him from achieving seemingly unattainable goals. Nick Vujicic has become a powerful motivational speaker who speaks worldwide, reminding people never to give up. He has written several books and is raising four children along with his beautiful wife. When confronted with his physically challenged life, he accomplished much more than anyone could have imagined. The question he often asks his audience and I ask you now: what is your excuse? 

These are just a few of the inspirational stories helping to encourage me on my road of life. There are a plethora of stories in this world of people showing true fortitude against personal hardships.  If someone was inspired by something I have done or said, then I am humbled. I have been inspired by people I have met along the way, although they were also merely doing what they had to do to make it. Life threw a monkey wrench into their lives, and they regrouped and reengaged to accomplish their goals. I feel everyone has a challenge or two pertaining to their lives, and so the question is, what are you willing to do to complete the task?

If you can’t find inspiration, be an inspiration.

An attitude of gratitude…

I am a ridiculously nice man I know this. Until… The following is a true story.

My Google Home device: *ding* I have a reminder for Scott

Me: Hey, Google, what’s up?

My Google Home: I have a reminder called you have a doctor’s appointment in 4 days.

Me: thank you, Google.

My Google Home: thank you for thanking me. I guess we are caught in a thanks loop…

I think I broke my Google home device.

I believe the key to happiness is genuinely twofold.  First, you must wear a smile and have gratitude for everything in life, whether big or small.  This attitude means no matter what happens, keep a positive outlook and always have a sparkling sunny disposition. Second, when you need help and require assistance, people will be willing to assist you if you are gloriously glowing.  Grumpy Gus’s get bitter rejection when support is needed the most, so no sourpuss faces on your mug. 

My experience shows most people fear those who are different as they fit into the others category. Individuals who walk with a wobble, use canes, forearm crutches, or even use wheelchairs get shunned and chagrined. However, those of us who ambulate using these methods are the ambassadors of the disabled, meaning we need to put our best foot forward.  We need to prove we should not be rejected and neglected but deserve the same respect as everyone else.

The second part is subjective yet more critical, in my opinion, which is to help people before they ask for any assistance.  To insert true happiness into the mess we call society, I say pay it forward by helping others even when they cannot help you back.  Asking is the hardest part of need, so if we can stand out to show we care for a stranger, it makes us better people. Be aware you do not have to do anything outside of your comfort zone.  The list of volunteering options is just as long as the non-volunteering items that are desired.   A kind word, an offer to do the dishes, a ride, a smile, and these seemingly simple stunts may seem silly but may mean the world to the recipient. 

When I was growing up, my family was lower middle class, although we were a hare’s breadth away from being poor. Unfortunately, our family held onto the title of the lower middle class like it was the last Twinkie at a Weight Watchers meeting.  My mother, a single parent, worked a full-time job and went to college, so we rode that tightrope between poor and poor-ish for seven years.

We were low-income, but I had no idea what being poor meant until I met some genuinely poor people in high school.  I was not afraid to make friends with anyone, including those shunned and socially shamed because of their appearance or clothing.  I made good friends with those who were the real impoverished individuals in high school.  Freshman through senior year was the most challenging years for a kid to hide the family’s financial footing.  So I had both rich and poor friends though I learned the most about life and the real meaning of friendships from those with the least.

I learned from seeing this downtrodden lifestyle and how some of my friends did not work so their parents could do so.  Most days, Jim needed to watch his younger siblings because his parents could ill-afford decent childcare.  I quickly realized that when we were going to eat fast food, Jim could not buy food for lunch.  I did not want them to feel bad and look needy if I only bought food for him.  The solution was to pay for the group as not to single out the most disadvantaged amongst us.  It felt good to do good for others without making Jim feel embarrassed or ashamed for not contributing financially. My action was done with no expectation of payback, thus I began a life of utilizing opportunities to pay it forward or daily acts of kindness.

My mom tells me I am merely leading by example, yet I genuinely hope people are willing to follow suit.  I understand not everyone can afford to do a lot, but little acts of kindness make a difference in this bitter-filled world.  So the next time you are out at your favorite coffee place, buy a coffee for a stranger or do some other random act of kindness.  I guarantee you it will make them feel good, but it will give you an incredible feeling as well.  On the other hand, if someone does something kind for you, be gracious and say thank you while consider paying it forward.

Be the change in the world that you want to see- Gandhi.

The hike that almost killed me…

I have decided to try telling some of my more difficult early multiple sclerosis stories. I was scared to shares these torturous tales as I do not want anyone to judge me for my feelings of fear or fright. Like a friend once told me, I was making “mountains out of molehills”, and I should “build a bridge and get over it.” However, this pain still lies deep in my psyche, and as I write about it nearly twenty years later, I still feel the anxiety and dread. This disturbing tale is going to take much time and tears to put down in writing.

It is my understanding that talking about issues such as these is imperative to one’s mental well-being. However, these troublesome tragedies are difficult to think about and are no more comfortable to put into words. I have to keep reminding myself that everyone deals differently, which is why some people come back from war mentally broken, and others have no visible or invisible scars. The following blog is my war story, and it has broken me mentally, leaving scars on my psyche that will haunt me forever.

In Columbus, Ohio, the metro parks hosted a weekly winter hike program every year, and my mom invited me to join her and my stepdad. Up to this point, I had virtually no MS symptoms, although this time, that would seriously change. On this day, I would meet the maleficent monster who would haunt my nightmares and negatively change my life forever. The hikes are held at various parks around Columbus, Ohio, starting on Saturday at 9 am. I showed up in the morning wearing my hiking boots, ready to take on the snow Mother Nature spread that night.

Most people had proper pad paraphernalia, although a few sadly did not understand the importance of suitable footwear. There are often several trail lengths to choose from, including a short one mile a three-mile, and sometimes five milers. This park offered one and three miles, and being we were all avid hikers, we chose the lengthier three-mile route.

The hike started on time, bright and early, even though it snowed significantly overnight. About a quarter of a mile in, I began to feel extremely exhausted and verified with the rear guide how far we had gone thus far. I told this rear volunteer I would be going back to the beginning and explained I was fine, but I felt a little unwell. Unfortunately, that was when I should have quickly clarified I have multiple sclerosis, and extreme cold can quickly and viciously rip all strength and energy from my being. Right then would have been the perfect time to define my monstrous MS malady, and it would be in my best interest to have someone walk back with me. However, I was a big bad bull-headed Marine who was embarrassed and ashamed to ask for help even at my detriment or peril.

As I walked back alone, the wind was bitterly cold and felt like sandpaper dragged across my face. I could feel my strength vanishing as every step became slower and was more difficult, just as my thinking became sluggish and lethargic. There was no one on the trail, and my weakness was quickly overpowering my tenacity and perseverance. I had less stability with every passing second, and I needed to lie down for just a minute to catch my feeble breath, then I would finish the hike back to the start. After I laid there for several minutes, I heard a voice call out, and I panicked. I jumped up and ran to a walkway underpass about ten yards away, and I stood against the wall as the group hiked by.

I have no clue why I ran, but it was likely because I was always an able-bodied, weightlifting, tough-as-nails Marine, and I did not want to appear weak. One of their group guides was left behind with me, so we walked back on this treacherous trail together. However, the walk was slow and desperately difficult, as my weakness and sluggish walking were back. I tried to hide my wobbly walk from this woman, but I was as easy to read as a Dr. Seuss book. As we walked back in silence, every slight uphill step felt like climbing Mount Everest, all the while the guide continually looked back and cautiously observed my every step. It felt like I was caught in an MC Escher drawing as the path just kept coming with no end in sight. This female guide did not understand nor question my arresting ambulation oddities, and I did not share. I was an Eagle Scout, US Marine, and a young guy in his twenties and felt incredibly ashamed of my insufficient capabilities.

When we made it back, I sat silently on a bench for twenty minutes or so before I began to feel physically fine. Once I was feeling up to par, I decided to join my family to hear about their adventures. My mom told me about their hike and then asked where I went, and I downplayed things by saying I found a bench and sat for a while. It turned out my hike was a half-mile of sojourn I will never forget.

I now understand my MS and the physical restrictions and challenges that limit my abilities in these situations. Unfortunately, sometimes I take things for granted, which can cause havoc and encourage me to devalue typical transfer movements. These thoughtless actions can force me to make mistakes that can threaten my well-being. However, I am always trying to think through everything I do, including sitting positions and transfers. So, yes, this day significantly impacted my nightmares, but it also created a staggering impression on my understanding of multiple sclerosis and my life to come.

Empathize not sympathize

Quickly conquer chaos…

Staying organized in life is an immensely important endeavor, no matter who you are. It is beneficial to keep all of your doodads and doohickeys diligently divided so you can reach them in an instant. The intelligent choice is to keep your selection of widgets and digits neatly stacked for your quick, convenient calculations. In addition, it is essential to keep your entire calendar of events prominently posted for your perfunctory perusal.

As a twenty-year veteran of multiple sclerosis, I like to stay exceptionally coordinated and formulated to help my life run smoothly. However, things have changed since before I began using technology to aid my memory and simplistic systematization. Before utilizing any automation application, I was old school, and the inside of my house showed it. Everything was coated in a thick yellow layer of post-it notes, reminding me of things like I was a retired senile scientist. These notes reminded me of the most mundane tasks because, at the time, depression made sitting on the couch my only priority. These inked notes reminded me of everything, including brushing my teeth, meal times, and when to check the mail, along with many other just as ridiculous reminders. My bills were all piled neatly in several separate stacks showing me what had been paid and what was still outstanding.

There is now so much technology to help you stay organized excuses have gone with the dodo bird. 3.48 million Applications exist in the Android Play Store, and 2.22 million apps reside in the Apple app store, reminding us there are many apps for that. These application operations can assist you in budgeting, household chore reminders, or even when to simply throw old apps out the window. Gone is the day of tying a string around your finger to remind you of a task you inevitably forget anyway. The process of writing a to-do list on a piece of paper you soon lose track of is a thing of the past.

Smartphones, Google Home, Amazon Alexa, Apple Home Pod, computers, tablets, and even smartwatches make staying unorganized a problematic task. We MSers and most people need to find what works best to keep our lives formulated and coordinated to avoid confusion and chaotic clutter. Multiple sclerosis causes plenty of mind messes like shoddy short-term memory. So we must be aware of our weaknesses and find assistive tools to help us be the best we can be. Do yourself a favor and find apps to help organize all areas of your life, from finances to scheduling and everything in-between, as the possibilities are endless.

With organization comes empowerment.

Bipedal position priority…

The following entry is my last blog in the series discussing my standing power wheelchair. Let me first explain when a person is in an accident and must live in a wheelchair, quite extensive training is shared. This information improvisation is given because a wheelchair is life-altering when added to someone’s existence. However, I was given a manual wheelchair but not even five minutes of life lessons which would have helped make my life exponentially better. Although getting into my standing device is a top priority, these facts mean it is not the only purpose for physical therapy.

We have all heard the horror stories of how slow the Veterans Administration can be with the red tape. However, this is my story of how things have moved rather quickly to get everything I require and desire. This speed is even though the pandemic is an ongoing obstacle and constantly sends stuff to slow success.  After making my land-stand demand, it did not take long to receive the upright stature manufacturer via special delivery.

When I received the massive mechanical monstrosity from the Veterans Administration, I was faced with a new challenge. My goal is to learn how to climb this contraption calamity unassisted and stand several times a week. The VA rep and I spoke pretty extensively on my options to transfer from manual to power chair safely and unaided. We talked about building a platform to make my manual chair at the same elevation as my power chair, later recognizing this was a bad idea. Also, we discussed using a power elevating bed, inevitably adding six extra transfers into and back out of the standing device. This process would be too exhausting before standing and another bad idea. I only wish a physical therapist was involved in the conversation because the therapist who eventually helped me said a direct transfer is the best and only real idea.  She shared how it would become second nature and easier in the long run while challenging initially.

The first thing I learned in my new manual wheelchair life is the plethora of unexpected muscles required. Every movement brings a need for a new set of power holders you did not know you had or even needed. Pre multiple sclerosis, my choice for exercise was weight lifting, yet I was still missing the correct strength for my sad seated situation. There are a mere 206 bones in the adult human body, but about 600 muscles, meaning many do not get used in daily life. These muscles can get pulled off the bench when life situations change, like a wheelchair, requiring new abnormal movements. It is also my understanding every position and action the body makes requires stabilizer muscles. These equilibrium enforcers encourage individual external balance allowing synergy in the body movements.   

I wanted to wrap this blog series up in a pretty little bow and simply say all is well. I was hoping to share I am standing in my massive machine several times a week, and it only took a month or so of training. Unfortunately, that is not how our wonderful world works, and sometimes you must put in your blood, sweat, and tears. Many times you must refuse no for an answer and bust your hump and make life happen. It is essential to understand life often requires hard work no matter what you want to accomplish. So let me close by saying I am pleading for perpetual progress leading to plummeting problems, and my daily life is safe and secure.

At times life demands significant effort so make yours count.

Read more about my MS adventures, visit http://www.mymsramblings.com    

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.