My untold MS story (part 1). The beginning…

This is my real life MS story. The good, the bad and the ugly. Let me start by saying this. People who have MS have a “trigger” that activates and exacerbates the MS that lies dormant within them. “MSers” have had some significant “stress” in their lives, causing the MS to flare. MS can lie dormant until either physical or mental stress “provokes” the MS. There are people out there who have MS and don’t even realize it. This MS can lurk until they are much older. A divorce, death of a loved one or even a car accident, just to name a few, can activate MS. I have found that everyone with MS has a story. Most MSers can tell you the story of their misdiagnosis. They can also tell you about their MS “spark.” Sometimes they will even talk about the first symptom that they had years before their diagnosis.

After my divorce in 2000, I went “off the rails.” This time in my life that was full of dejection put me in a major “tailspin.” I began drinking and clubbing with a buddy who was also newly divorced. Up to this point in my life, I had consumed very little alcohol, so the effects were magnified. As an introverted person, the outcome was merely drinking as I did not dance and I was too shy to date. I was drinking and clubbing nearly every weekend while working all week. This destructive lifestyle lasted almost a year.

My divorce left me with plenty of extra bills as well. These financial requirements meant that I needed to work two jobs to get back on “financially stable ground.” I worked five days a week as an engineering draftsman. I also worked many evening and weekend hours at a local Walmart. Attempting to climb out of this erroneous alcoholic lifestyle, I began to pull myself together.

I was heavier at the time of my divorce. The fantastic food of my marriage really “packed on the pounds.” During my seven-year marriage, I had “nurtured” a 40-inch waist. I began to lift weights. My friend had always lifted weights, so I decided to join him. Steadfast in my determination, this new physical training went well. I started out at a hefty 200 pounds with a waist size of 40 inches. I quickly began losing weight with my dedication to this new exercise regimen. I dropped weight very quickly, too quick some have said. I lost so much weight that I thought I might fall through the sewer grate. After all of that exercise, I became a svelte 125lbs guy with a 29inch waist. However, I QUICKLY learned that to find a pair of 29inch pants you must visit the boy’s department. I also learned that pants that small have pockets that are WAY TOO SMALL to be useful.

One day I woke up, and something felt “wrong.” I went to work that day and as I tried to talk my speech was a “garbled mess.” When I tried to speak to people, it was like I a bunch of marbles in my mouth. I went through the day thinking that it must be stress. Remembering a phrase that I had learned in the Marine Corps, I began to “adapt and overcome.” I became more of a methodical person. I spoke slowly and would repeat myself very carefully without being asked. I would always “THINK” the right words. However, only when speaking out loud would I know if things sounded correct. Many times, I would think to myself that this would stop and go back to “normal,” very soon. No matter how frustrated I got, my co-workers were patient and understanding.

After nearly a week had gone by, my disheartening verbal issues were still present. I decided that it was time to see a doctor. All of my life I rarely saw doctors. I was sure that my appointment must have told my doctor that this was an important issue. The moment that I finished explaining my problem to the doctor, he said without hesitation: “You have mini migraines.” He then gave me some medication. Over the next few days, the medication did not change anything. I went back to see my primary care physician. Nearly a month had passed. My primary care doctor said, “I recommend that you see a neurologist.”

At this point, the speech issues had disappeared entirely. I started to debate whether I should continue with this medical testing. On the one hand, it was inconvenient and time-consuming. I also had to miss the work that I truly enjoyed. On the other hand, I had insurance, and I rarely used it. Not to mention, it would be one thing if it were just my family doctor. However, my PCP was now sending me to a neurologist. Something told me that this was important.

Over the next month, I had several strange medical tests. For the first test, I had to look at a TV screen that showed a black and white checkerboard. In the center of this checkerboard, there was a black dot. I was told to keep my eyes focused on this spot. On this checkerboard, the squares would rapidly alternate between black and white. The attendant continually reminded me to “keep your eyes on the dot.” I don’t know how well most people would do with this task. However, my eyes are attracted to movement. “Keep your eyes on the dot!” he said, repeatedly. If I had a nickel for every time that he said those words, I’d have like a dollar.

The next test was a test of my brain. The nurse had a “swim cap” looking thing which was prodigiously punctured with metal “prongs.” These metal “studs” were connected by wires to a machine for reading brain waves. The nurse took a gel and put it on the underside of each of these metal nodules. At this point, she took the swim cap and placed it on my head. She then began carefully wiggling and digging each one of those metal nubs into my skull. She explained that she had to make sure that there was no hair to block the connection between these metal prongs and my “brain bones.” Keep in mind that I had an extremely short Marine Corps haircut. This nurse finally had me lie on a padded exam table in this dark room. She then made me aware that, it was okay if I fall asleep during this test. I don’t know what they were testing, but I had dozed off several times. It was a dull test for me.

The last test that they performed was called a “lumbar puncture,” known initially as a “spinal tap.” I waited in a cold hospital room. I sat on a medical bed while wearing a hospital gown. A nurse hooked me up to a machine that continually watched my heart rate and other vital information. Finally, after thirty minutes the doctor came in. He began explaining the procedure for the lumbar puncture. I interrupted him politely and said: “With all due respect doc, I don’t want to know how ‘the sausage is made,’ let’s just do this.” It had to do with a needle and puncturing my spine with it. I did not want to know. He had me lay on my side with my spine facing him. I had to bend my knees toward my chest and hold that position. Positioning myself like this opened up my spine for him to slide a needle precisely between the bones, I think. As I was in that spot, well I’m not 100% sure what he did. I did not want to see, but a needle was involved. However, the doctor did an excellent job with the lumbar puncture. This compared to the horror stories that I have heard from other MSers. In comparison to these other stories, I had less pain and discomfort.

The doctor had scheduled these tests over several weeks. My primary care physician called me into his office, on a brisk October day of 2001. I sat on the exam table, wondering what he would say. When the doctor came in, he pulled up and sat on a wheeled metal stool. In a calm and clear voice, he told me “you have Multiple Sclerosis.” My next question to him was simple: “OK doc, what’s next?”

We all need vitamins S, U & N…

This Sputnik tells me AGAIN that we are having a high “solar toxicity” day. I have noticed that we have had more of these toxic solar days, than in years past. My sun shields have been getting more of a workout than Richard Simons in the 1980’s. We have had to stay indoors so much recently, that I think that we are all going a little berserk. I ordered my groceries yesterday, and they were delivered to me an hour ago. The delivery people always look funny when they deliver groceries on high solar toxicity days. I always remember the movie “Back to the Future,” the spaceman scene. I mentioned the movie, to the delivery guy. Sadly, he was too young and looked at me like I was weird. I think that some of the films that I grew up with, like that one, should be mandatory viewing.

I heard this questionnaire yesterday. The first question went like this: what is your favorite thing in your bedroom? My answer would have to be “my heart.” The second question was: what is your least favorite thing in your bedroom? My answer to that one is also “my heart.” My heart causes me extreme sadness and sometimes joy. It causes me great consternation and other times calm. However, many days I want to merely say: Dear heart, please stop getting involved in everything. Your job is to pump blood, that’s it.

However, I wear my heart on my sleeve. I know that someone out there will appreciate that. Sadly, I also realize that I have to win the lotto of love. The number of women that will understand me is shrinking, because of my “irregularities.” I am in a wheelchair, I wear my heart on my sleeve, and I have a beard. Although, that last one has changed about a million times over the previous 113 years. Other than a scratch off once, I do not play the lottery. Hopefully, one day I will win this lotto of love.

When they build houses now, they put in a “sunroom.” I found this odd, as it is not a sunroom like my younger days. The “sunroom” of today has the same concept, as the old “sunlamp.” The “sunlamp” was a treatment for “seasonal affective disorder” (aka S.A.D.). The idea of “Heliotherapy” was to sit with this lamp facing you. The rationale was that, if you don’t get enough sunlight, you could get depressed. This lamp had light bulbs that were specific for the treatment of sunlight deficiency, giving off the needed UV light waves. When using the old “sunlamp,” you had to sit directly in front of the lamp, not doing anything else. This practice was extremely time-consuming and wasteful time management.

On the other hand, today’s sunroom is an entire room, filled with these beneficial glowing “orbs.” Now, more people can use this sunroom at the same time. If you are alone, you can do other things, like paperwork for school or the office. As an entire room, it is more successful at healing, than a simple lamp. All of these high solar toxicity days can cause depression. Now with these sunrooms, deep sadness caused by lack of sun, is nearly eliminated. My doctor told me to always watch out for “depression,” in everyone that I know. If people do not take the time for the sunroom treatments, depression can occur.

The Fast food industry’s popularity has taken a monstrous nosedive. This decline is because families have become “wallet conscious.” These “wallet watcher” families have been cooking at home. When they began to cook for the entire family at once, they saw how it is better in every way. For many years, families got away from the “communal table.” Now, fast food attendance has been in a total decline, as families return to the family meal. Fast food companies have tried various enticements to encourage customers to return. They have had no success with this. “Fast-casual” eateries, like Panera Bread, have significantly surpassed the burger places, like the old McDonalds.

Young people have been eating less fast food, for years. So three years ago most fast food companies merged. These businesses had barely been able to keep their doors open, as customers disappeared. Two weeks ago Wendy’s decided that it was time to “bite the bullet,” and join the downtrodden. So they joined this new fast-food conglomerate. This fast food merger made the company “Quik Bites.”

Fast food advertisements used to focus on a specific type of food, like tacos, burgers or subs. They now promulgate by boasting of the plethora of choices that you have with Quik Bites. They “pretend” that this was always the plan. However, most of us know the truth.

Then last night, Migro purchased this “Quik Bites.” I was able to talk with some of the head personnel at Migro. These Migro officials explained that they are going to be shrinking the fast food industry. Migro hopes to erase the existence of fast food, within the next five years.

A few years ago, most of the corporate “sit down” restaurants were also bought by Migro. They have been downsizing these corporate businesses, in hopes of eliminating them as well. This elimination has allowed the small family owned businesses, to boost the quality of everything. They are no longer in a challenging competition with corporations. Several Migro employees did not have a good family life as they grew up. They did not get to sit down and break bread with their families, as many of their friends often did. For this reason, they want to bring back the family meals that, they longed to have.

I am glad that family is what drives Migro. The puissant dollar was the focus for most corporations and individuals when I was younger. As I spoke with some of the heads at Migro, they explained that everything that Migro does revolves around family ideals. The family unit is what the focus should be. Most of my life, the family was not the cynosure of everyone, like it should have been. Everyone fended for themselves. As I was growing up, it was a “fast-paced, run, run” life. Mom rarely saw dad, and the kids rarely saw either. This life was different from the “Leave it to Beaver” days, of the 1950’s. THANKFULLY, I think that we are returning to that lifestyle.

The sanitized story of the saturnine…

I woke up before the buzz of the alarm clock. I laid there listening to the metronome of the second hand of my wall o’clock. As I got up, I cracked open the windows and visors. From the moment that my eyes greeted the morning light, there has been nothing but quiescence. There has not even been a “squelch” from my Sputnik. The noiselessness is torturous. I don’t like the deafening silence of my house. For this reason, I typically have the house system playing either music or an audiobook from my younger days. Sometimes I even play talk radio, anything to fight the isolationism of quietness. Sadly, this has made me a saturnine person today. Maybe this Sputnik is doing something to my brain…I don’t know. This seems to be one of those “forlorn” days. It looks like today I will have to go to Migro, to get this Sputnik fixed. I have put this off for months now, and my procrastination has gotten me nowhere.

I called Migro this morning, to make an appointment, because of my Sputnik issues. The woman told me that I did not need to make an appointment, as the people in the Sputnik trial would be seen right away. When I showed up, I realized that it had been nearly five years since I was here last. This meant that there had been plenty of time for a change.

Previously, everything looked like the “stereotypical” doctor’s office. The waiting room was covered in low pile carpeting. The chairs were metal framed padded seats that accented the color of the carpet. Beyond the waiting room door, the floors were austere linoleum tile. Cinder block walls lined the corridor to the exam room. Basically, everything looked very clean, like all medical facilities should look. The receptionist was dressed in business casual attire. Yet, all of the nurses were wearing scrubs, which were a variety of colors. Lastly, when I saw the doctor, he was wearing khaki pants, a green button-up dress shirt with a white lab coat. This was emblematic of all medical facilities and staff members.

However this time, everything was very different. Everything had a “sterile” look and feel to it. White, light grey and even some Chrome were basically the only colors that I saw. The receptionist was a nice looking woman, dressed in white pants and a white dress shirt. There was no hint of perfume, yet there was a smell of cleanness. She also had a slight whisper of make-up. The waiting room was void of any color. I felt like I was in an old black and white TV show. This waiting room had a white floor with white walls. There were chairs, which were framed in chrome metal with white padded seats. Everything was “lined up” in a precision fashion, like a platoon of Marines, standing for inspection.

I was told that approximately one-third of the patients that are seen in this medical facility, come in alone. I was one of the “loners”. I was very pleased that they had a staff member sitting next to me. This employee was dressed like a civilian. She was there to make sure that I did not feel alone, I was told. The staff member had a few minutes alone with me, and spoke about her role as a “patient advocate”. She said that all of the patient advocates are medical staff. This meant that confidentiality should not be a concern. She also made me aware that her role was to be “support”. She told me that she would support me, however, I needed. Depending on the situation, she could hold a hand or explain terms and procedures. Basically, she would do whatever I needed, like the concierge of a high-end hotel. To keep continuity, the same patient advocate would always be with me, unless I requested a change.

Twenty minutes had gone by, and I was walked to an examination room. This exam room looked like a white cube with lines on the walls. When the doctor began his examination, his medical tools were “hidden” in the walls. He took two steps to the right and pushed the wall in slightly, and then let go, the wall began to slide out. His medical equipment slid out on a shelf. Everything that he needed, including the exam table, was “in” the wall. I thought this wall storage was creative.

Using a machine for “imaging” they took pictures of my brain. They wanted these images, to view the connection between my brain and Sputnik. They took these pictures about ten minutes prior to the examination. The images were sent directly to a large table/screen, for all of us to look at. After he showed me the images, he explained that there was a slight complication. He pointed out the area of concern, on the screen. Thankfully, it did not sound like this was a dire situation. He told me that I would need to stay the night, none the less. They said that they would buy me the clothing and anything else, that I needed. Later, they took me to my room.

The room that I was to stay in, seemed to have been designed by the same person who did the examination room. It too was a cube that had white walls and a white floor. There were lines around the room, just like the exam room. My patient advocate walked me through the room and showed me various features. Where the first set of lines were, she pushed in slightly, and then let go. A full-size bed, ready to be slept in slid out of the wall. Another push of the wall, in a different location, and a “closet rack”, slid out. In another location, she pushed the wall in, and it slid open sideways. This was a full sized bathroom, with a shower, toilet and a sink. It was a very convenient “box in a box”.

When I am “old and gray” and I die, someone might find this journal. Those futuristic people may be interested to hear how Migro used to look. They might like to hear about the Migro medical facilities, and how much they have changed. My experience at Migro Medical was pretty good. I appreciated the patient advocate that they assigned to me. No one should have to be alone, ESPECIALLY IN A MEDICAL SITUATION. None of the study participants currently, has had any issues with Sputnik affecting their brain. The doctor said that it could have been, just one of those melancholy days. They were able to get my Sputnik active again. Now, we will have to see what tomorrow will bring.

The Migroth of a company…

This is my first journal entry of 2088. Ten years ago there was a business merger between Google and Microsoft. This merger made the colossal powerhouse Migro. I still think the name sounds like plant food. When these two companies merged, they were able to catapult human life expectancy, beyond imagination. The current life expectancy of a human is 150 years. I am now 113 years old. Although it has been said that 113 is the new 40, I defiantly do not feel 40. Migro seems to be buying companies, big and small, left and right. I think they want to own everything on the planet.

Five years ago, I signed up for the human trial for “Sputnik”. This is a device implanted in and powered by the brain. The Sputnik device is a “turbocharged” version of the old “voice assistant” released in 2016. It also has many similarities with Google Glass from 2012. When they implanted the Sputnik into my head, they synced it with my “house system”. Migro wants there to be “synergy” among everything that you own. Important, and sometimes dire, information comes to the Sputnik. For this reason, they want everything to stop so that you are sure to hear this, quite possibly, detrimental information.

Like yesterday, when they warned us that it was going to be a high “solar toxicity” day. This meant that we needed to keep our windows, sun shields and visors closed. This information also made us aware that, we needed to wear our solar protection suits when venturing outside. This is why on days like yesterday I avoid going outside like a cat avoids bathwater.

I woke up this morning, hearing the sounds of oldies playing all over my house. After I got dressed, a really good song began to play. I decided to “dance” around, as I was cleaning. After 10 minutes or so, the music stopped because the doorbell rang. When I opened the door, my neighbor Tom, with a smile on his face, asked: “is everything OK Scott?” I said “oh, the sweat? Yeah, I was just cleaning”. “Well,” he said, roaring with laughter “through the window it looked like you were practicing for a musical.” We both laughed and talked for a few minutes. This reminds me to shut the windows as well as the sun shields when I dance.

I was told the other day, that Migro is very close to being able to erase specific memories. I personally would love to sign up for that procedure. I continually have memories and thoughts that haunt me, like a bad dream. Many times I walk around, my house like I have Tourette’s. I yell out “stop it!” or “what’s done, is done!” all to try to stop the memories and thoughts. All of these memories of ignorant comments and/or actions that, I have made or thought about, drive me crazy. I know that you have to be able to laugh at yourself, but I would not want my neighbors to see that. Someone seeing me dancing around as I clean is one thing. Yet, someone seeing me “yell” at myself is another thing altogether. Luckily, there are no “voices” in my head, other than Sputnik. Of course, I would only do this procedure if only “specific” memories were erased.

Migro has created many medical devices to help people. They are currently focusing on the disabled. I was intrigued to hear about, several devices that they have created to help people in wheelchairs, walk again. They started 5 years ago, with large “machines”. Seeing people climb into them, reminded me of climbing into an X-Wing fighter. These early machines were very expensive. They were also large, and would not easily fit into the average home. However, as with everything, it starts off large and expensive. Yet, as these innovations become commonly used, the price drops like the stock price of Apple after the merger.

I am curious about these “machines” that, aid in walking. I often wonder if having the ability to walk could help my romantic life. Should I even be thinking like this? I am always wondering if my deprivation of walking abilities has any effect on my romantic life or lack thereof. Could this new technology have a positive effect on my life, romantic or otherwise? Not to mention, since I am only 113, what technologies are still on the horizon?

The more that I think about it, I would say that my lack of walking abilities, probably has little effect on my romantic life. Meaning that these “mechanized legs” would also have little effect on my social life. This is likely the case, as I remember when TV was a big thing, I saw a TV show called “Push Girls”. We are talking about over 70 years ago. Sputnik obviously DOES boost the memory. Push Girls was a reality TV show about four women, living in LA, in wheelchairs. It showed all aspects of their daily lives including their romantic lives.

It reminded me that legs, whether working correctly or not, have little effect on romance. I still think that it is simply my “shyness” and my lack of “confidence” that has the larger effect on my romance. I will continue to contemplate this complicated conundrum. I need to come up with a solution, as I don’t want to be alone forever.

I was apparently born at the correct time. As Robert F Kennedy said in a speech in 1966, “we are living in interesting times”. If I am going to have MS and be in a wheelchair, this is the right time. They have these wearable “contraptions” that may help wheelchair users, walk again. This means that I could be out of my wheelchair more often, than in my wheelchair…maybe?

I am excited to see what comes of these wearable apparatuses. Will they help only in specific situations? Will the battery packs last, like the autonomous electric cars of today? There are MANY questions that can only be answered by “time”. I feel better than yesterday but not as good as tomorrow. I am keeping a positive outlook on life “tomorrow WILL be better…I hope