My MS story, ominous cloud rumble…

pic 1 searchI must be pickier than most because I doctor-hopped for a while, jumping from one to another, searching for a good neurologist. I have met many people with MS who said they are unhappy with their doctors, which absolutely confuses me.  I cannot comprehend why they do not merely leave the doctors with whom they are displeased.  If I am going to pay a doctor, he or she must have excellent bedside manners and be personable.  There is a relationship between you and your doctor, meaning he should not dictate things like a king.  The doctor I choose should list options, give the pros and cons of each, and then let me decide.  It is their medical degree, but it is my body, so my doctor should talk with me like a person.

I soon realized that my diagnosing doctor had terrible bedside manners.  On Thanksgiving week, I had an appointment with the doctor, and his cell phone rang during my appointment.  He picked up the phone and stepped out of the room for five minutes while I quietly waited.  He returned apologetically and explained that he had to set up some holiday dinner plans. That was unacceptable to me, so I left his practice never again to return after that appointment.

pic 2 listAfter I left my diagnosing doctor, my search to find a new neurologist continued.  After all, I would be spending a lot of time with him, relying on him to medically take care of me.  Finding a doctor is like finding a friend; there are many great people out there, but not all are friend worthy.  The doctor must take your insurance, and they must be close to where you live.  Accessibility is an often overlooked requirement, although it is more significant for those with physical challenges. I saw one doctor who had one step and a removable makeshift ramp that was too steep for wheelchairs and unsafe.

The next two year period was full of doctor appointments, MRI’s, and weird MS symptoms.  It took me a while to find a doctor that I was happy using, making this time frame extremely chaotic.  It was not easy finding an acceptable doctor, and learning how my MS would affect me made life miserable and did not make sense.  Life now was like trying to get directions from a person who does not speak English.  You will get there, but you will make some wrong turns along the way.  Of course, all of this caused me stress and stress, and MS are mortal enemies.  Stress causes more MS symptoms, creating more stress it was and is a vicious cycle.

pic 3 symptomsI was learning all about my new MS body every day as changes happened just that quickly.  I had these strange symptoms, and I did not know how to deal. For instance, I was extremely temperature-sensitive.  I had weird symptoms like extremely itchy hands that sent me to the ER.  Itchy hands sound silly, but it was much worse than you are thinking.   My walking had become extremely unstable and required me to stabilize myself using any solid surface.  However, I was too stubborn to get a walking aid, so I wobbled every time I walked, trying not to fall.  Pre MS it was easy to push myself when I hit a wall, but now pushing myself had devastatingly adverse outcomes.

last pic madI began to avoid everything because I did not want to be a burden on anyone.  Things were starting to go downhill, and my attitude was getting worse as I was very grumpy, and I had an extremely short temper.  A depression had begun to settle in, but I could not see it, and no one told me. I rarely saw my dad, yet my sister, who I saw even less often, said she did not like the person I had become but did not tell me why.  I saw my mom twice a month when she had me over for dinner.  I turned into a hermit and looked like one too.  I could feel myself slipping away, mentally, and emotionally, and it was not good.

Like the words from a horror movie, the worst was yet to come.

My MS diagnosing story, confusion of chaos…

last picOn a brisk October day of 2001, Doctor Cook called me into his office. I waited for him, and I sat on the padded exam table as my trepidation made me ponder the worst-case scenario. When the doctor came in, he pulled out and sat on a wheeled metal stool that squeaked as he rolled towards me. In a calm and clear voice, Dr. Cook said, Scott, you have Multiple Sclerosis. I could not have imagined what was to come as the next two years were hectic, chaotic, and had me drowning in confusion. I would soon learn life is ever-changing as this tumultuous filled pandemonium became my new normal.

Right away, the doctor put me on an intermuscular injectable interferon, an MS medication. Genuinely I am not too fond of needles, yet at that time, all MS medications were injectable, so my fear of needles did not matter. I began doing a lot of research on MS and found everyone had a cure for this autoimmune disease. Let me let you in on a well-known secret about MS; there is no cure for Multiple Sclerosis. However, I found many scammers who usually wanted you to buy their product. They would sell you special tonic water made from the tears of butterflies or some such nonsense. This pointless potion is guaranteed to deplete your savings account and make theirs swell like a deer tick.

pic 3 netThe internet and I had a close relationship for a long time after my diagnosis. I felt I needed to learn as much as possible about this maleficent monster preparing for the fight of my life. I spent hours that turned into days on the internet, trying to soak up MS knowledge like a sponge. On my quest, I quickly became educated about the shysters and charlatans that are out there ready to take all of your money. I was not about to give away any of my hard-earned coins to some low down swindler.

I felt like someone threw me in the deep end of the wave pool, and I did not know how to swim. Multiple sclerosis symptoms were smacking me around like waves from all sides faster than I could move. My eyesight went haywire, and I became legally blind, although I could sort of see causing constant consternation. I woke up one morning, and my legs were as unsteady as a newborn fawn forcing me at times to drag myself across the floor. Sometimes I had to military craw to the bathroom and somehow get myself up and onto the commode. At times while driving, my legs would be as useless as the ay in okay, forcing me to control my legs literally with my hands.

pic 4 bad eyeSince I worked as a draftsman, and vision of details was paramount to my job, those crazy symptoms forced me to stop working. I also had to stop driving as using my hands to physically grab my pant leg to move to the gas or brake pedal was unsafe. My body was simply going crazy, and I did not know what to do or if there was anything I could do. It seemed like every day, my body was fighting me and not letting me get up to defend myself brutally punching me blow after blow.

So I was now unemployed, which required me to live off of my seriously small savings. Once I moved out of my mom’s house after high school, I never again asked anyone for money. I now had to become creative in my accounting to make my bank account last as long as possible. I made sure my mortgage was on time, so I always had a roof over my head and a safe place to sleep. When it came to my utility bills, I paid one bill per month. January water bill only and February only electricity in March only gas in April it started over with my water bill.

Primarily I lived like the downtrodden wearing clothes that were old and made me look homeless. However, I had a few less worn clothes I could wear to my doctor’s appointments and not look excessively destitute. I kept my house at an uncomfortable temperature, to help keep my utility bills as low as possible. I had forty watt light bulbs in a few places around the house, meaning I walked around my house in near darkness most of the time. I am an Eagle Scout and a US Marine, so I was not afraid of camping in bad weather or with no heat or electricity. I did everything I could to keep from spending money needlessly.

last too smallBy this time, my weight had fallen below one hundred pounds. My doctors would always ask me if I was eating, I would say I ate three meals a day. Little did they know my portions were kept ridiculously small to keep my food bill exceptionally low. I would count twelve biscuits or one serving of spoon-sized frosted shredded wheat cereal with powdered milk for breakfast. I may have a drained can of corn with some Italian dressing for lunch. Then for my evening meal, I would possibly have one cup of mac-n-cheese always drinking water because my water bill was always paid. If I got hungry in between meals, I would have a couple of multigrain saltine crackers.

My new MS life was not going well…

My MS story, The calm before the storm …

pic 1 officesWhen I walked into the offices of the neurologist Dr. Cook sent me to, I was in awe of the beautiful facility. My primary care doctor offices were pleasant and clean middle-class America welcoming. However, this new doctor’s office felt like I walked into upscale offices on Saks 5th Avenue. When I spoke to the receptionist, she did not wear typical medical scrubs but instead a business blouse and slacks. I gave her my name and appointment time, and she handed me a clipboard loaded with paperwork to ask medically all about me. I had a seat and began scribbling away, answering their queries, knowing the doctor would soon ask the same questions in his initial examination.

Shortly after I finished the paperwork, I was taken back to an exam room, where I waited for the doctor. The room for my examination looked like no other medical exam room I have been to. In this room, there was a small office desk, a padded patient table with carpeting on part of the floor. There was casual artwork adorning the walls though they made it look a bit more upscale than the average exam room of my past.

pic 2 tiedSoon the doctor walked in and introduced himself as Dr. Michael Mann, one of four neurologists at his medical office. I told the story of the verbal sparring between my lips and tongue and the conversation complications it caused for me. He did not tell me what he thought my ailment could be, but said he would be sending me for various tests. This doctor of few words did not explain the tests at all, and I left without asking for details as I was apprehensive about everything.

Over the next month or so, I completed several strange medical tests. For the first test, I had to look at a small TV screen showing a black and white checkerboard. I had to keep my eyes focused on a black dot that sat in the center of this checkerboard. The squares on this checkerboard rapidly flashed between black and white. Although all the squares were dancing I was supposed to continually focus on the dot at the screen center. The attendant continually reminded me to keep my eyes focused on the dot and never explained why. The problematic part is my eyes are attracted to movement, making the task an impossible imposition. Keep your eyes on the dot! he said repeatedly.

pic 4 brainThe next test was an exam of my brain. The nurse had a swim cap looking device, which was prodigiously perforated and loaded with metal prongs. Wires connected these metal studs to a machine for reading my brain waves as she placed it on my head. The nurse took some gel and put it on the underside of each of these metal nodules. She then took the cap, placed it on my head, and began wiggling and digging each metal nubs into my skull. This nurse finally had me lie on a padded exam table in this dark room and said it was OK to fall asleep during the test. I had dozed off several times as the test was incredibly dull for me.

The last test they performed was called a lumbar puncture, known initially as a spinal tap. A nurse hooked me up to a machine that continually monitored my heart rate and other vital information. Finally, after thirty minutes, the doctor came in and began explaining the procedure for the lumbar puncture. He had me lie on my side with my spine, facing him, bending my knees toward my chest, and holding that position. However, despite my fears, the doctor did an excellent job with the lumbar puncture. My experience compared to the horror stories I heard from other MSers, I had much less pain and discomfort.

The doctor scheduled these tests, so they were spread over the next month or so. On a brisk October day of 2001, my primary care physician called me into his office. I waited for him while I sat on the padded exam table as my trepidation made me ponder the worst-case scenario. When the doctor came in, he pulled out and sat on a wheeled metal stool that squeaked as he rolled towards me. In a calm and clear voice, Dr. Cook said, Scott, you have Multiple Sclerosis.

last picI got quiet as his words soaked into my brain like a paper towel that picks up spilled milk. The fear settled deep as I did not know what any of this meant for my life while my imagination had me six feet under within a year. I sat quietly for a minute, staring at my feet, not knowing how to feel, and as my brain was drowned in confusion. Drenched in dismay fearful of the unknown, I simply asked, OK, doc, what’s next?

Things began turning ugly…

My MS diagnosing story, The beginning…

pic 1 factsThe following is my true personal MS diagnosis story, including how my life moved along in those early dark years. It is not a pretty story, but it needs to be told so others will know they are not alone on this MS battlefield. I am going to format it into a series of five blogs that each will focus on a different part of the story. My history proves life is not all rainbows and butterflies, but we need to play the hand that we are dealt.

It is essential to understand that people who have MS have it lying dormant within them. My research shows that MS can lay silent until physical, mental, or emotional stress causes this beast to flair with ferociousness. Bad divorces, the death of a loved one, or even a car accident are examples of stresses that can activate MS.

pic 2 wallI did not see it coming; after all, I was an Eagle Scout and a Marine who overcame every challenge I had faced. During my last year in the Marine Corps, I started experiencing little things that were a bit off. Looking back, I can see what the symptoms were, but at the time, I merely blew them off as clumsiness or stress. My buddy Mike and I were running and weightlifting regularly, so I continued to think these issues were stress-related. I did not know that something awful was stirring deep inside me, waiting for the wrong time to rear its venomous head.

After my divorce in 2000, I went off the rails as my life was full of dejection and rejection that thrust me into a major tailspin. I began drinking and clubbing with my buddy Mike who was also newly divorced and handling it much better than me. In my life, I had consumed very little alcohol, so its effects were now massively magnified on my body and brain. As an introverted individual, the results were mostly drinking as I did not dance, and I was too shy to talk to women. I was drinking and going to clubs nearly every weekend while working all week. Sadly this destructively debilitating lifestyle lasted over a year.

pic 3 drunkMy divorce also left me in a banking deficit nightmare, which meant I needed to work two jobs to get financially on stable ground. I worked five days a week as an engineering draftsman and many evening and weekend hours at a local Walmart. I began to climb out of this destructive alcoholic lifestyle and pull myself together both economically and mentally. Although it was robbing Peter to pay Paul at times, I got on payment plans and slowly got caught up.

I was physically more rotund at the time of my divorce as the fantastic food of my marriage packed on the pounds. During my seven-year marriage, I had inched up to a forty-inch waist as I gained seventy-five pounds over my Maine Corps fighting weight. At five foot six inches tall, the two hundred pounds of body weight made me look much chunkier than my Marine Corps days.

pic 4 foodI soon began to lift weights with my friend Mike, who had always lifted weights and looked the part. Steadfast in my determination, the weight started to fall off as I trained three days a week by lifting heavy weights and running. This new physical fitness went so well that I began losing weight very rapidly, too quickly, some said. I lost so much weight that I thought I might fall through a sewer grate. After my hard work, I became a svelte one hundred and a twenty-five-pound guy with a twenty-nine-inch waist losing seventy-five pounds in about a year.

One morning I woke up for work, and something felt inexplicably wrong. When I arrived at work, more chaos ensued as I tried to talk. When I began to speak, it felt and sounded like I had a mouth full of marbles, I thought it must be stress. Remembering the Marine Corps phrase that I learned many years ago, I began to adapt and overcome. I spoke slowly and carefully, repeating myself without being asked, although my coworkers were always extremely patient. I continued to think that this would stop, and I would go back to normal very soon, but this medical issue was relentless.

After nearly a week, my distressing verbal issues were still present, so I knew it was time to see a medical professional. After I finished explaining my problem to my primary care doctor without hesitation, Dr. Cook told me I had mini migraines. The doctor explained my issue, but it was nebulous at best though we were moving the correct direction. I was not concerned because I just wanted the medication that would make my issue go away. He gave me a two week supply of this low dose pill that was as he explained a receptor antagonist. Over the next few days, the sample medication Dr. Cook gave me did not change a thing. I went back to see him after nearly two weeks, and he recommended that I see a neurologist.

pic 6 magicAt this point, my speech issues had completely and strangely disappeared. I debated whether I should follow up and see this doctor of neurology. On the one hand, it was inconvenient, time-consuming and I had to miss the work that I truly enjoyed. On the other hand, I had the insurance that I rarely used, so I decided that I would get some use. I also realized it would be one thing if it was just my family doctor, but Dr. Cook was now sending me to a neurologist. Something told me that this new doctor visit was probably pretty paramount.

Here I was completely confused…

Life’s limiting limitations…

pic 1 reachEveryone has things they cannot do like, maybe you do not have the skills to cook and only have the ability to boil water. Possibly you do not have the talent to write a poem and barely can write a birthday card. However, most times in life you can learn those things by having someone show you or you can read how-to books. Depending on the skills you are looking for, you could take a class or even find instructional books at the library.

However, when someone with multiple sclerosis loses any ability, it has a negative long term impact. This loss could be permanent, or it could return significantly weakened, making life again a little more challenging. Many MSers deal with this terrible degradation that routinely has significant impacts on our lives. These possibly permanent problems could be ambulation related and introduce us to canes, walkers, and manual or power wheelchairs.

pic 2 stepsOne of the most challenging things for me since the introduction to MS my permanent nemesis is asking for help. I know that most people with multiple sclerosis hate asking for help because it makes us feel weak and indolent. There are things that I cannot do in my house to live life and keep a clean and welcoming home. I have fought physically to change my sheets and make my bed clean, comfortable, and cozy. This mission has been unsuccessful, requiring me to find assistance from someone on a routine basis for many household duties.

Ten years ago, I searched for weeks to find assistance programs that would help me with my cleaning concerns. Many agencies cater to the elderly and disabled and help with laundry and various housekeeping tasks. Ten years ago, when I was at my poorest, I got prices and found them on average twenty-five dollars an hour. They were made even more expensive because they had a three-hour minimum, causing a monthly cost of one hundred and fifty dollars.

pix 3 home aidSeven years ago, I began looking for a much lower cost, if not a free option. I thought I would have a quiet and quick quest, but it seemed endless as my list of conditions made for a slow hunt. I was beginning to have difficulty getting my laundry and myself up and down the slightly steep steps of my basement. This issue added one more task that needed to be done again, making my pursuit a bit more challenging. My search lasted hours each day and ended successfully after several long weeks.

I finally discovered a church from town that had an outreach program aimed to help in that capacity. This program assists the elderly and disabled with light housekeeping and other tasks to help those individuals stay at home. It took approximately three weeks to connect everyone involved and have my initial meeting at my house. This visit was when I met Shakira, and we began our long term friendship that has now lasted over seven years.

PIC 4 COTA BUSWhen Shakira started working for me, she took the city bus for one hour to my home and one hour to return home. Her trip home was after working at my house for four hours, making an exhausting six-hour day for her. Her dedication to me and the job was more apparent when three months after starting, she moved even further from me. Her new place made a one-hour bus ride become a one-way two-hour sojourn that made me think her help would end. This new eight hour day was done once every two weeks rain or shine snow or hail, proving Shakira had a strong work ethic unlike many.

Shakira went through a time when she shared a car meaning only sometimes would she take the bus. Now this wonderful woman has a car of her own and continued working with me when I moved nearly ten miles away. She is extremely trustworthy and has become indispensable and at times, works at my home when I could not be there.

She helps in a variety of ways, from laundry to making my bed to dusting, four hours per visit. Shakira also runs the sweeper, cleans bathrooms, or any other tasks that needs done. Occasionally I have been so exhausted from MS life that I have even asked her to put my groceries away. However, I try to do as many things myself that I can to prove to myself and the world that I am not indolent.

last picEveryone needs a little help sometimes even though asking for help is harder than jumping the Grand Canyon on a ten-speed. The people who do these types of jobs are some of the great unsung heroes in life and get paid very little. These individuals help keep their clients, or in some cases, friends lives in good working order. Without this assistance, our lives could easily fall into the dark ages and become a cluttered, disorganized pigsty.

If you need help, just ask.

Assuming is not knowing…

pic 2 sickSome people think MS is contagious, like a virus that causes people to fear and avoid us. Others believe that we have mental problems making them ignore and reject us. Some individuals feel multiple sclerosis is simply a made-up illness, so they want to shun us. However, MS is a real and debilitative medical condition that can ruin lives, friendships, and even families.

People can quickly put their foot in their mouths when interacting with disabled people. When anyone uses a cane, walker, wheelchair, or some other personal transport device, strangers can visually see the need. It is when the disability is not visible when people can become a know-it-all and can be obnoxious. I heard it once said it is better to keep your mouth shut and appear stupid then open it and remove all doubt. Sadly enough, people do not follow this sage advice.

pic 3 sickThe other day I woke up on a swim day, and something felt a little off. I had a challenging start to the day, but I was not about to give in. I was moving slower with a hint of weakness in my arms. Thankfully I always plan for an extra thirty minutes or more for unexpected MS and other life issues.

COTA made me over an hour later to the pool than usual, and at this point, I was late, starving, and flustered. After this frustrating morning, I finally was ready to get into the pool. I pulled up next to the chairlift and should have paid attention to the warning signs within as I felt an internal quiver. As I transferred to the chairlift, I landed very close to the edge in a precarious position. Within the span of a blink CRASH and down, I went hitting the concrete floor. I did not say anything, but I hurt my hip and my hand a little. Sadly I hurt my pride much more that morning. Thankfully a lifeguard was standing there and lifted me to the seat.

pic 4I have been a member of my pool for over a year and never dealt with a debacle like that. I say all that to say this: there was an older woman in the pool, and her first words were you should get a caregiver. I let her know that I live alone and one hundred percent take care of myself and that this was the first time that I have ever had this happen at the pool. I told her not to worry if I show no fear.

When my friend Janet found out that I was diagnosed with MS, she asked me, “how long?” “How long what?” I asked. “How long have you been given to live?” she queried. I had to explain that multiple sclerosis is not a death sentence and told her that I have the same life expectancy as anyone else. “I will live longer than some people and not as long as others just like you” I explained.

the stae 2When I was planning to move, my former neighbor Jeff said to me, “you should move into an assisted living facility.” “Why,” I questioned. “Because of…you know…your MS” he said sheepishly. I reiterated that I live alone now with no problems. I reminded Jeff that people live with this condition both alone and with families all of the time.

Right after my diagnosis, I was assisting my friend Mark with his kitchen remodel. Mark, Jim, and I worked hard to get this kitchen back in working condition before Mark’s wife returned to town. Jim found out I was diagnosed with MS and kept staring at me all day like he thought I would go into a seizure. He never said anything to me but glared at me during every move I made. It was disturbing, to say the least, at how his eyes were boring a hole in my head as his stare made me feel judged and devalued.

walkeringA friend Heather who also has MS was shopping and was using her walker. A little girl saw her and asked her mom, “What is wrong with that lady?” Her mom grabbed her and said, “Be quiet.” Heather went up to the little girl and nicely explained why she used a walker so that a little kid could understand. At that point, Heather looked at the mom and said, “I would prefer to be asked about why I use a walker than being feared.

last picThese real-life stories show how people who do not know how to act or what to say can look bad. The lack of understanding and empathy makes some people double down on saying or doing the wrong thing. I think people act the way they do around the disabled because they do not know what to say or do, and I understand to a point. I mean, you may not know what to say but talk to us like anyone else you see in public. So if you see us smile and say hello and talk to us like anyone might you meet on the street.

We do not fear the unknown. We fear what we think we know about the unknown.

Continuation Isolation nation …

pic 1 lifeI typically get my blog ideas from my life experiences as I muddle through my daily existence. How someone interacts with me or maybe has an attitude and verbalizes it gives me some ideas. I might write about a fall I had or how a piece of equipment helps me in some particular way. A few times, a TV show or movie has widened my eyes to an issue that has allowed me to feed the brains of my readers about MS. There have been times when a book and even a song helped mold a blog topic that made a difference in at least one person’s life.

However, as I sit here in a house full of only me, my blog topic ideas continue to dwindle. The blog concepts have shrunk so low you have to use numbers scientists use when measuring atoms to count them. I am struggling to find a topic that I can discuss in a valuable way leading to education information that I can share. I have a handful of followers and readers, and I want to make any time they spend on my website worth their time, so they return.

pic 2 eduIn this seclusion delusion, we find ourselves in I am struggling mentally, physically, and even emotionally. My brain and my emotions battle with each other in search of any blog ideas that can help me educate anyone who still reads my writings. Physically my exercise options are significantly limited not only restrained by my lack of abilities but by the fact that I am alone. There is no one here to keep me accountable, and that fact allows me to limit what I do.

I still keep myself on the same sleep schedule, waking up early and going to bed early. I do this so that in a few years, whenever they open the pool up again, I will be able to return without difficulty. I also keep a similar daily routine, trying not to mess up my daily duty procedures, all in hopes of making my returning transitioning less stressful. I still take a brief twenty-minute nap as not to mess up my nighttime slumber practices.

pic 3 health fdoodI try to eat healthier to avoid gaining weight so that seat to seat transfers are as safe as possible. I eat only three meals a day and do not snack throughout the day to again lessen the chance of my midsection swelling unnecessarily. I also eat on a schedule and limit the volume of my food to keep me from engulfing all the food I have. Lastly, I do not eat candy or sugary sweets I fend off fast-food, and dodge deep-fried meals as these all can help pack on the pounds.

pic lastI understand that this quarantine is hard on us, forcing us to do things and be places that we usually are not. I do not know about anyone else, but the consequences from this lockdown will have devastating setbacks that will last for years. This solitary confinement will still have such negative impacts even with all of my cautious preparedness. So I say to anyone reading these written words do you a favor and hope for the best but plan for the worst.

Think smarter, not harder.

The fight for dominance…

pic 1 domEveryone knows this Christmas song, but with a word twist or two, it can be played in the summertime for us MSers. As spring advances into summer, the outside temperatures jump up and down the thermometer like a pogo stick. This season change with its drastic temperature swings, is physically draining for most of us with multiple sclerosis. However, the summer heat can drastically debilitate the majority of those with multiple sclerosis.

It’s the most terrible time of the year.
With the temperature swinging and my body screaming,
the ground is so near.
It’s the most terrible time of the year.
It’s the crap-crappiest season of all.
With the temperatures leaping and bad body beatings
‘cause I tend to fall.
It’s the crap-crappiest season of all.

pic 2 vestIt is common knowledge among those with multiple sclerosis, their families, and even friends of our heat sensitivity. When the summertime stampedes into existence, the various MS organizations begin to pass out cooling vests as well as tips to stay cool. For some MSers, this is not the only challenging time of year as the mercury in the thermometer sticks in the upper temperatures. Some of us are also impacted by the drastic swing of spring and fall, where the temperatures move inconsistently. This seemingly mild time of year for others is rough as the thermometer moves like the wings of a hummingbird after a triple shot espresso for us. This issue is not the entire spring or fall, but just as the season begins to roll into summer or winter.

During this evolution from fall or springtime, I often want to wrap myself in bubble wrap to protect me from every fall. My brutal bruises remind me next time to be more cautious by thinking slowly and moving deliberately. Alas, I typically forget by the following season change, and the psycho cycle continues causing my rump to meet the ground.

pic 3 pogoI want to wrap myself in protective padding as my falls during this newly arriving season precipitously rise. Arm strength is essential for wheelchair users, yet the muscles in my arms become extremely weak. This weakening muscle issue is due to the temperature that rises and falls like the stock market and causes my transfers to be hazardous. For an ambulatory person, legs are the cornerstone for most daily tasks like standing and walking. However, for the average person in a wheelchair, our arms are our ambulation mode, and we need them to be in top form. We cannot depend on our legs to help at all because, for many of us, our legs do not work.

The swings on the thermometer can make us get lightheaded more often, making seat shifts more unstable and unsafe. A transfer at this time from one surface to another becomes more of a precarious proposition. These dizzying moments can happen at any time, whether we are sitting still or transitioning our positioning. This vertigo feeling can put a damper on any part of multiple sclerosis and wheelchair life.

pic 4 bubblewrapHowever, the horrific heat can cause us to fear the outside temperatures and dread leaving the house. Some MSers wake up feeling stiff and barely able to move all day while others feel tenacious tingling thru-out their body. The optic neuritis that many have tends to go haywire, possibly causing temporary blindness, which shakes us to our core. As our multiple sclerosis flairs in this inconsistent and chaotic weather, we fear the unknown of the MS monster. Many times we move slower, doing our best to muddle through our day at times, counting on our reserves to get us home.

MSers like to be included in the activities of our friends. We do not want to be pushed into the land of the ignored, abandoned, and forgotten. Sadly, we have our limitations that we must find ways to work around in hopes of not being shunned and outcast. Many of us feel our restrictions make us a burden and do not want to stop the activities of others.

pic 5 skydiveWe appreciate being invited to most anything even if our answer is no like maybe you are going skydiving. Most MSers will probably say no, but some of us would literally or at least figuratively jump at the opportunity to leap out of a plane. Quite possibly, you are merely going to have a family game night at home. That type of event keeps the activity level down, making the majority of us say yes to this less strenuous day more reasonable. You may also entice more of us with a trip to the movies provided you choose the correct theater. We wheelchair users do not want to break our necks as we sit in the front row, looking directly up at a forty-eight-foot screen.

Be empathetic towards those who are physically limited, include us when you can, and we will be glad to join you.

If The Incredible Hulk had MS…

pic 1 hulkI have shared the importance of keeping the body moving so often that I am sure people can spout my speech like saying The Pledge of Allegiance. I tell people so often I guarantee that some people are getting sick of my disgustingly dull diatribe. I remind them of the success of just how far I have come using fortitude and tenacity through my struggles. I tell people how my story of overcoming my adversities is meant to be inspirational and motivational. These tales of mine are not intended to be derogatory or accusatory of others.

I knew a man named Rick a few years ago who taught fitness models the proper way to train and win. The preparation prescribed these competitors to correctly formulate a plan for excelling their bodies to the winners’ circle. They had to be exceedingly fit physically, mentally, and even emotionally to compete, and his students often won their fitness competitions.

When Rick was later diagnosed with multiple sclerosis, he thought that his training days were done. However, he decided to keep moving forward until his MS laden body demanded that he end his training career. Fifteen years later, Rick continues to train others as well as routinely exercises his physique, as his body does not give in to this idea of a sit still style of living.

I recently learned of a bodybuilding trainer Jim who as diagnosed with multiple sclerosis. This condition of his began thirty years ago at the age of twenty-six. Even though this type of announcement can often be career-ending, he continues to lift weights and train other bodybuilders. It is amazing what a strong will, along with a never give up attitude, can do.

old and swimAn older woman and her husband sat next to me in the pool a while back as their granddaughter played in the water. Lisa and I spoke for about twenty minutes before I realized that she has a twin sister named Melissa, who has the same medical issues Lisa does. She explained how Melisa’s husband babies her by doing everything for her negatively impacting her daily life. He does not allow her to lift a finger, causing deterioration and atrophy, making the dependency on her husband more of a requirement. The longer you use a crutch of any kind, the more you will come to depend on the assistive device.

Melisa’s story reinforces my point of the importance of continual body movement. They both have the same medical issues and yet deal with the complications very differently. Although Lisa still feels pain, she does not let that stop her from living her life to the fullest. By swimming, traveling with her husband, taking care of her family, she can significantly slow the negative impacts of her medical issues.

When Melissa feels pain or discomfort, she deals differently with this miserable plight. She simply asks her husband for some pain killers and a glass of water and continues to sit and waits for nothing good. Again, do not let your body become inactive and stop working like a rusty pair of scissors. This tale of these twin sisters should be like American Express and accepted everywhere.

I have seen people experience retirement in one of two methods, and it does not have to do with money. For some, it is about staying active and living, not only the rest of their lives but the best of their lives. These individuals worked all their lives on the daily grind with retirement as the target. I have seen them do everything to stay active from simple walking to rollerblading and speed walking to surfing. No matter the level of activity, they remain in motion.

On the other hand, I have seen those who have a more sedentary view of life. The extent of daily exercise for those people is pushing the buttons on the television remote. Sure they may get up to visit the facilities or make a sandwich but then return to their derriere’s indention on the couch. I have heard them say things like “my legs hurt if I” and “I get too tired when I,” but they do not believe my cure recommendations. They do not comprehend when I say Dwayne “the Rock” Johnson would also deteriorate if he sat sluggishly stationary on the couch.

old walkingSimply walking outside down a few houses and back will have a significantly beneficial impact on one’s life. This short journey should be made once maybe twice per day to affect your total physical and mental wellness positively. If you do not want to walk outside, then walk around inside your house every time a commercial comes on. You get out of life what you put into it, so put in a little effort in and reap the rewards as you extend your life.

In the pool that I use, I have met more people in their upper seventies and eighties who look like they are in their sixties. Everyone appears to be at least ten years younger than those who do not exercise. I have met seventy-five-year-old farmers still working in the fields like they are twenty. I have a friend who is a nurse and is over eighty years old and moves like she just turned sixty-two.

be fitI hope my writing encourages everyone to get off the couch and begin even a mild fitness program. These stories remind us to move whatever you can as much as you can for as long as you can to slow the effects of father time. We must remember that any rust build-up comes from a sedentary existence. The truth is that “if you always do what you’ve always done, you will always get what you’ve always got.”

Constant movement is the key to continual mobility ability.

To be or not to be…

pic 1 riteblockJust at the point when I think that I am not going to have anything to write about something new occurs. A bright light has been shined on someone’s ignorance and imbecility, allowing my faith in humanity to get knocked down a peg. This belief backslide of my credulity was caused by the total lack of empathy for someone. Luckily for me, in my older age, I have learned how to avoid confrontation in these silly situations.

At the fitness center where I swim, there are three rooms specifically for dressing for any form of fitness. These changing rooms are available for families or the disabled to use for preparation privacy. In all actuality, anyone can use these rooms as there is no bouncer at the door to let in only the chosen few. There are a variety of needs too many to list that cause the needed privacy of these changing rooms.

pic2 belongI patiently waited while eating a protein bar and talking to a physically challenged friend who also found no benefit in the men’s locker room. A woman and her daughter came out of the dressing room as they slowly gathered their belongings. She looked at the two empty rooms and then, with a curt inflection, asked me if this was the only room that I could use? This brusque tone to her query felt snarky and, for just a minute, made me question if I belonged. I said yes and then nicely explained how the other two rooms do not work for my physical needs. Can’t you use the men’s locker room she continued with her terse tone these are the family changing rooms as she emphasized the word family.

Confrontation is not suitable for my MS, so I was speechless by her inane interrogation. Thankfully my friend spoke up as he could see the look of consternation plastered on my face. He explained that the men’s locker room is not set up correctly for the needs of those of us who are disabled, making life more challenging. They went round and round as he tried to be clear and concise in his explanation to help her truly understand this problematic plight. She was done with the information dissemination, and this obdurate woman departed abruptly as her feathers seemed ruffled. I often want to ask all of the antagonists that I interact with one straightforward question. How does MY situation impact YOUR life?

Side note: Let us forget about the disabled for a minute and focus specifically on the original purpose of the family changing room. The initial reasoning was to help parents who had children from the opposite sex in the locker rooms. These rooms are incredibly beneficial to moms with sons and dads with daughters since they could not go in the standard locker rooms. That means that since she had only her granddaughter-by, her logic-she should have been using the women’s locker room.

pic3udouThere was one time when another woman saw me in the passenger seat in an accessible parking space. The handicap placard was sitting on the driver side dash, and as she walked by, spoke into the open car window and complained about its positioning. She vociferously declared that the handicap placard legally needs to be hung on the rearview mirror. I then corrected her and explained that the law states that it needs to be hanging on the mirror or placed on the driver side dash. She just walked away without apologizing or acknowledging that she was wrong and learned something.

I understand that she did not know the law and should have said nothing, yet she felt entitled to say something. I again pose my query: How does MY situation impact YOUR life? I have seen people question those who park in accessible parking spots many times saying you are walking fine why are you using handicap parking? If you do not know that person’s health situation or abilities, you will inevitably embarrass yourself if you speak out of turn.

pic4defendI think that in America, people feel overly entitled and involve themselves in things of which they know nothing. For those who want to be helpful to those who are being attacked or challenged then yes, say or do something. Stand up for someone who is being picked on, abused, or devalued. However, do not say anything if you do not know anything.

Wise men speak because they have something to say, fools speak because they have to say something.