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.