A little background on me – I was born and raised in Western NY. I am married and have two daughters. They keep me and my wife busy and our household is always buzzing!
Before I dive into my relapsing remitting MS discussion, I must explain my love for the game of ice hockey. Living in Western NY, our weather and proximity to Canada lends itself to the love of this sport. I started skating and playing hockey at a very young age. I have pictures that show me on the ice at the age of 5 and I also knew, early on, that I wanted to be a goalie. I enjoy the pressure of being between the “pipes.”
What a rush being at the center of it all. I love it so much because I am “in control.” It is just me versus that frozen, extremely hard, vulcanized rubber hockey puck. If I failed to stop that puck, the other team would score and 90% of the time that responsibility fell on my lap. I loved the pressure then, and still enjoy it now!
I will get back to hockey in a moment, but let me take you on a trip through my relapsing MS journey. My journey involves 4 paths, or what I call my 4 C’s: Clowning, Cautious, Control and Compliant.
My relapsing MS story begins in May of 2004 with a seemingly innocent encounter with my daughter. And this is where the first of my “C’s” comes in – “C” for Clowning; my daughter and I making silly faces in the bathroom mirror after she finished her bath.
Through this clowning around I noticed that the left side of my face didn’t seem as symmetric or reactive when making these faces. I asked my wife if it looked odd to her and she acknowledged that it did seem a bit off. Now, I had no pain, numbness, tingling or anything…it was merely a slight asymmetry in my face. So, in this clowning around I realized there may be an issue and I scheduled an appointment with my primary care provider. These innocent silly faces are what propelled me to seek medical advice.
Which brings me to the second of the “C’s” – this one for Cautious. I have always been the type of person to see a doctor, if and when necessary. I am very in tune with my body, and was not hesitant to seek medical advice for this seemingly minor situation. Remember that I like control – I have that goalie mindset. Like many people dealing with an unknown situation, I scoured the internet for an answer; I read a lot regarding my symptoms. Thanks to Google I was confident with my self-diagnosis. I would go to my doctor’s appointment prepared based on my symptoms and research.
I was fortunate that my primary care office had a physician on his neurologic rotation, something many patients don’t have at their disposal. Upon visiting the doctor his first thought was “stroke” and thus scheduled a brain MRI right away. “MRI, really??” My first reaction was, “Oh well, if that is what it takes to get the answer… no problem.” I would approach this with the same set of caution as seeing the doctor in the first place.
So, a few days later I went for my brain MRI. I was a bit anxious as I have never had an MRI. It was unfamiliar. I’ve seen the devices on TV or movies but never in person. The actual MRI procedure caused me more angst than the thoughts of what they might find. This is where my third “C,” Control, comes into play. Again, I am a goalie at heart, so taking “control” of my health and the necessary testing was crucial. I arrived at my appointment and filled out the paperwork involving medical history and so on, and I was just about to enter the room…
But wait, they needed to take my phone, ring and watch – seemed a bit like the airport if you ask me. Sitting on the table of the MRI machine, the tech asked me what radio channel I would like to listen to while “in the tube.” I told him that I typically listen to AM talk radio during the day and they informed me that AM is not option. “Really? In this day and age of technology you can scan my brain, see my insides but you cannot tune into AM radio?” Oh well, that would be a fight for another day (that’s just a little pet peeve of mine). A few loud thumps, hums, and buzzes, and the scan was over.
I recall it being a day or two until the results were ready, and I was all set to hear them. The doctor informed me that my scan was “textbook relapsing MS.” He said that in relapsing Multiple Sclerosis my body was attacking its own myelin. Hmmm… Multiple Sclerosis? I didn’t know much about that, other than the fact that a co-worker of mine had MS. One of the first statements the doctor made was that there were multiple options for treatment and many people can live well with MS. Thanks to his words, I was reassured that this could be managed.
Taking control, I politely told the doctor that I was going to obtain a second opinion. He welcomed this opportunity and I was off to a dedicated neurological practice. I met with a neurologist and he scheduled a series of tests and another brain MRI. Talk about being in control. At this point I was feeling like a human guinea pig and my inner goalie allowed me to move on with things like the Evoked Potential Test, Spinal Tap and even a second MRI.
While waiting a day or two to hear back from Dr. #2, I was back at work and I struck up a conversation with the co-worker who had MS. As a new employee I didn’t formally meet this person, but now was the time – time to take control, to open up! I approached her and we talked at length about her situation. She helped put things into perspective and was a great source of moral support.
The time came for my follow up and wouldn’t you know, Dr. #2 verified that my scan was “textbook relapsing MS.” He was sure that I had Multiple Sclerosis and oddly enough I was not too surprised. Now it was VERY official; 2 doctors provided the same diagnosis.
Using a holistic evaluation of my physical and mental acuity, plus my MRI results, the Dr. was comfortable putting the ball in my court and gave me control of the next steps. At that time, he stated that there were four FDA-approved therapies, and they were all proven to be effective. The doctor offered me all the material relating to the available therapies and advised to ask him any/all questions and to let him know as soon as I decided on one. He was confident that any therapy would be beneficial for me. Armed with this information I was eager to speak with my coworker, who informed me about her past therapy experience over the years in dealing with the disease.
I quickly decided on one of the therapies I thought would meet my treatment goals. And this leads to the last of my four C’s— Compliance. Being compliant with the doctor’s wishes and compliant with my medication has been a key to managing my relapsing MS. I’ve found that being compliant with doctor appointments and brain MRIs are also crucial. After all, it was a now-annual MRI that propelled my doctor to suggest a discussion about my treatment options when he noticed a change on my scan results.
So, based on my previous medication, my overall health history as well as new medications available on the market, he suggested I start a new disease modifying therapy. Up to that point, having attended all the MS related talks, seminars and webcasts, I was well aware of new treatment options and their ability to slow disease progression, reduce relapses and stabilize brain MRI results. Besides all the benefits, I was also aware of possible side effects.
So, talk about some of my “C’s” coming into play – Cautious? Control? Wow, it was a lot to consider and to discuss with my family; especially weighing the possible risks and benefits. For me, being Compliant on medication is not an issue.
Again, thinking as a goalie, I conceptualize my relapsing MS in a more concrete way. We all understand that MS is the result of our own immune cells getting across the blood/brain barrier and attacking the nerve myelin. Just as goalies try their hardest to keep pucks from crossing the goal line, my relapsing MS medication is trying to slow the progression of my physical disability. Think of it this way: would you want to play hockey without a goalie or a frayed net?
In spite of having relapsing MS, many of the challenges I face are of the more hidden or unseen variety. Forgetfulness and difficulty with word-recall and the like. After all, I “don’t look sick.” Do I misplace my keys? Sure do. Open the fridge only to realize I forgot why I opened it? Yup. Be in the middle of a conversation and totally go blank on a word or a person’s name. Happens a fair bit. However, I have been able to adapt and not let these things interfere with me and my day to day routine.
Using a calendar app on my phone keeps my plans well documented so I don’t forget. Installing a key hook allows for my keys to be hung in the same place all the time. I have also incorporated online memory type tasks and games to assist with memory and recall. I have also learned some great ways to remember names which has helped tremendously. I am a creature of habit and keeping my routine the same from day to day assists with mitigating any forgetfulness that may creep in.
My “Four C’s,” which all started with me Clowning in a mirror with my daughter, being Cautious, then taking Control and always being Compliant…have all helped me navigate life with relapsing MS. Believe me, a lot of clowning around still happens at our house. Family is always first in my life and I continue to be the best father and husband I can be. For me, living well with MS is doing the work I enjoy and being surrounded by supportive colleagues. Living well with relapsing MS is attending support group meetings, sharing experiences and enjoying conversations.
Living well with relapsing MS is sharing, inspiring and educating. As a goalie, I am always looking for the next puck in life that needs to be stopped.
Forever a goalie!
Original author Gene Pohancsek, Jr. is a proud husband, and father of two. An ice hockey goalie since childhood, he has stayed resilient through his life by applying his goalie mentality to any and all issues that life has thrown at him, overcoming everything as though it’s all just pucks on the ice.
