Domo Arigato, Mr. Roboto…

pic 1 mr robatoThere are many health benefits to the simple act of physically standing in an upright position. The bipedal part of society does not need to concern themselves with this issue as they already reap the ambulation awards. Bone density strengthening just from baring weight onto your lower limbs seems small but is vital in life. This bone deterioration was a quizzical concern that NASA had to contemplate to help their astronauts when they return from space. After being in orbit, your bone density weakens by one percent each month that a space person is in zero gravity. NASA finally found an exercise machine that allows an astronaut to have resistance similar to the gravity on earth while in space.

Standing also helps with spasticity in the muscles caused by issues like bad positioning, circulatory problems, and poor posture, to name a few. The bipedal propulsion position encourages proper blood flow, which is difficult while seated. Even when an ambulatory individual is sitting at the office, many of these issues plague them as well. These concerns and the fact that many people are aware of health encouraged the resurrection of the standing desk. These physical difficulties make the simple act of standing an essential part of life.

collectionFor several years at my old house, I would stand using a grab bar and a 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. The stopping of my mild exercise program forced my leg muscles to deteriorate, making getting into cars challenging. 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 by myself safely.

While at the VA physical therapy, I was able to stand with minor assistance while using the parallel bars. I thought that standing repetitiously at the bars would reward me with positive results.
I desired to strengthen the needed muscles that would allow me to continue rising at my house with no assistance.
Sadly it is not in the cards for me to stand unassisted ever again.

power stand chairWhen the physical therapist and I talked, she explained that my goal was sadly unattainable. The topic of conversation quickly evolved into power standing wheelchairs and the benefits that I could expect. I clarified my intention of not going to a power chair until it was a physical requirement that I could not ignore. I want to use my arms until I lose my arms, I exclaimed fervently. The therapist saw that I was steadfast in my ideals and quickly clarified that it was not an either-or issue. She gave details telling me how many of her clients have both types of chairs and uses either 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 that we did was schedule a power chair representative as well as the 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 a limited number of 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 that the footprint of these armchair accommodations is relatively small for such a big seat. On the other hand, a standing power wheelchair must counterbalance a standing human and has a larger footprint.

ek jumpWhen the power chair rep pulled his minivan in front of my house, he began unloading various motorize marvels. I went out to look at the selection he brought, and I asked what the differences were specifying how they would benefit me. He explained that he just came from a trade show and that only one of the four chairs would work for me. The chair that was chosen for me was wheeled into my living room so that I could see it up close. 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 so that I could safely transfer into this colossal contraption.

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

final picThis story now has to be put on hold as two things have slammed the breaks on this endeavor. First and foremost, the COVID-19 virus has thrown a monkey wrench into an already arrested adventurer. Second, they are trying to contemplate how I can transfer from one chair to the other safely without assistance. Now I wait until the viral dust settles and the transfer calculations come back as safety is of the utmost importance.

Machines will save our lives, not de-humanize.

Tenacious me???

pich 1 wrestleAs multiple sclerosis patients, our MS riddled bodies continually fight us like a WWE wrestling match with no rules. We know that we must stand firm against this brutal beast to avoid the terrifying disease prospects that can arrive when we let our guards down. Assistance is excellent and very much appreciated, yet we need to try to hold onto as much independence and self-reliance as possible. This monster, called MS, has violently ripped so much from our control that we need to hold carefully onto everything that we can. There is a desire to tightly clasp onto the remaining competence that we have like a little girl who just got her favorite doll for Christmas.

One morning when the lights came on, I woke up, and something felt a little discombobulated. I tend to push myself when that happens, trying to find that line of doing too much and not crossing it. So I muddled through my morning routine cautiously aware of every maneuver that I made. I spouted my memorized morning mantra like a cheerleader repeats a cheer, helping to focus my concentration. I stayed overly guarded amid every movement prudently positioning myself during transfers, or anytime that I bent, leaned, and reached. The entire morning I was pleasantly surprised that no catastrophic event occurred though several minor issues slightly slowed my advancement.

pic 2--zippers-danaMy dad arrived to take me to aqua therapy, and since both of us prefer to arrive early, we had plenty of time. As I put my coat on, I had significant difficulty with the zipper and struggled with it for several minutes. It felt like I was trying to thumb wrestle while using someone else’s thumbs and I was blindfolded. My dad saw my winter wear skirmish and, in all of his infinite wisdom, asked: “Why don’t you just not go today?” I understand his reasoning as he was trying to make my life easier by suggesting that I back down from the obstacle in my path. So I stopped and quietly counted to ten and began anew with the zipper this time successfully securing my coat. I never give up as my sanity depends on it.

When my friend and I spoke about this issue, she told me that her husband acts the same way. If he hears Heather say that something is becoming a significant struggle, he tells her to leave it for him to do. Heather pointed out that she understands that her husband is trying to be helpful, but at the same time, she does not want to give up. Multiple sclerosis has taken so much from us that we do not want to give up anything else willingly, she said.

pic3 never giv upMost MSers that I know do not want to back down from obstructions simply to make their lives easier. You cannot persevere over an obstacle if you turn tail and run or hide under a blanket to avoid the challenge. One does not grow in life when everything is running smoothly, but we grow when we face adversity head-on. The individuals that I know with multiple sclerosis desire to live life as independently as possible. We want to be able to do as much on our own because MSers know and fear the degenerative disease possibilities. Knowing what we do about the conceivable symptoms, our imaginations run wild, picturing these horror stories. This ambition to avoid what could be our fate encourages us always to act and evade the maleficent potentiality of MS.

pic4 against oddsMy persistently pertinacious and fierce philosophy has helped me to achieve seemingly insurmountable odds. A never give up ideology has taught me to have the fortitude to keep pressing forward even when others tell me that things are impossible. They said to give up, do not waste your energy, you can’t, it is inconceivable, and yet I have prevailed. My intransigent attitude helped me complete a 5k in my wheelchair as well as swimming eight miles with no leg assistance. So the answer is no, I will not buckle to the fright of the masses I will not back down from fear nor bow down to the word “can’t.” I may be slow, but I am not in a race as success comes differently and has a unique meaning for everyone. Those of us with Multiple sclerosis need to hang onto the dignity that remains and not let MS steal that as well.

Think slowly, move cautiously, but never give up.

Instant gradualism…

changeWhat I have noticed with my MS is that drastic changes are unacceptable, and slow evolution is required. As the season begins to change from fall to winter, the temperature starts to drop, and life becomes more difficult for me and my MS compadres. The climate is a challenge for me because here in Columbus, Ohio, the season swiftly switches, causing difficulties in the bodies of MSers. This trouble is the reason that we MS sufferers make lethargic movements that resemble a sloth at nap-time. Sadly it is more of a difficult challenge and can even be painful as well as exhausting for those of us who are stricken with MS. Let me explain to help you understand some of the struggles of the MS sufferers.

Five years ago, I needed Provigil, a particularly pricey prescription to help me stay awake as my muscle relaxer makes me sleepy. This calming muscle medication called Baclofen helps to relax my leg muscles that often jump like two caffeinated puppies. The more of this antispasmodic agent that I take, the more that the sandman comes pounding on my door like a landlord to whom I owe rent. I needed so much of this medication that the only way to stay awake was to take the stimulant called Provigil.

cycleThe longer that you take Provigil, the less effective it becomes requiring you to take more of it, costing even more money. It is a mind-boggling ballgame because one medication led to the need for a new prescription and requiring more of the first medication. This screwball cycle has a domino effect that many MSers and other medical patients nation-wide know all too well.

I was able to end this diabolical drug dissolution by changing my physical activity level. This evolution of my fitness needed to happen very slowly as not to anger my multiple sclerosis laden body. In the beginning, I moved slower than a herd of turtles stampeding through peanut butter as going too fast would quickly put my body in a heated argument with itself. For the first twelve months, I completed minor pool leg exercises avoiding at all costs the dreaded too much title. Gradually I began to add more to my fitness training routine to include movements that did not cross the line of excessive.

I am now able to swim for three hours periodically punctuated with a time of rest. This change was at a sloths pace happening over three years, allowing my body to adapt to its new lifestyle. Before my exercise regimen started so long ago, I had a physical therapy session at my home that made me nearly bedridden for almost two days. All of this proves to me that we MSers might be able to do a little more than we think that we can, although we fear all of the negative consequences. If we start unbelievably slow and continually move our bodies at this pace all for a year, we can fight the inevitability of MS complications.

Temperature is another one of the bitter battles that we multiple sclerosis patients deal with regularly. This challenge can be as simple as a slight temperature change that causes quick lightheadedness and nothing else. On the other hand, this difficulty can create a whirlwind of physical struggles that can make your muscles weak for several days. With multiple sclerosis, I heard it once said that the word multiple is the most crucial aspect of understanding MS. This confusion is because any number of MSers can have any number of symptoms and makes comparing competitions that are superfluous.

thermoSeveral summers ago, I needed to have the thermostat in my house set at sixty-nine degrees. My multiple sclerosis riddled body would wreak vengeance and viciously retaliate if the temperature fluctuated. Even a slight one degree higher or lower temperature in my house and physical difficulties would ensue making transfers without falls an unlikely reality. During that entire season, my movements were nearly halted, making any life outside the home an inconceivable impossibility.

As the next summer began, my A/C unit died, forcing me to acclimate to warming temperatures that frequently fluctuated. I sat in this warmth for nearly two days, and when the air conditioner was finally fixed, my number was no longer sixty-nine but an astonishing seventy-five. The rest of that season had very few negative heat impact days that put me out of operation for any length of time. Dealing with degrees in the upper register of the thermometer was mostly a painless endeavor. It was no longer a threat to contemplate going outside and no more strategic movements when considering traversing out of the home.

adapt an overcomeLife is extremely different from my early days of multiple sclerosis and its significantly unfavorable impacts. I used to sit motionless fearful of body agitations and worried that making any sudden movements would cause MS to strike like a cornered badger. I am in this wheelchair because I did not move enough, causing my body to deteriorate past the point of no return. All of that being said, we MSers cannot handle extremely expeditious evolution in anything such as temperature and fitness. Now that we move slower, we require and desire any change to be moderately mundane so that our bodies can adapt to life’s alterations.

The only constant in life is change, so make it work for you.