Ignoring the warning signs did not work for me. At the fork in the road I took the right one.
I have Multiple Sclerosis, a frustrating, debilitating dis-ease that can change a lifestyle in the blink of an eye. The positive is that there has been progress made in its treatment since the mid-1990s with more progress made every week. I have learned that diet and exercise alone are not the answer. MS is always there, waiting, laying dormant, ready to strike when it’s most inconvenient.
In order for me to begin a drug therapy I was required to attend a nursing clinic that would detail the current drug therapies, the benefits, the side effects and proper administration for each. The nursing sessions took place once a month at the UBC MS clinic. I signed up and made my way back to UBC for a session.
I was directed to a classroom, and was surprised at the room being half-full upon arrival with more trickling in by the minute. I found a seat in the far corner at the back of the room. Prior to this day I could have counted the number of people I knew who had MS on one hand. Now I am in a room full of the newly diagnosed. I surveyed the room and observed that the majority were female. I knew that females represent an overwhelmingly larger proportion of those who are affected by MS. I observed that most were young adults. Being in my early 40s I was likely the oldest in the room.
As people trickled in I observed that a few had partners there for emotional support, but most came in alone. While some appeared comfortable with their attendance at this session, others appeared devastated. It was as though they had just received the diagnosis, then walked down the hallway for a drug information session.
Then walked in a young man with his mother. The room was standing room only now with most against the wall close to the door. The young man and his mom walked in and shuffled into a place to lean against the wall. It was apparent they were at the session for the young man. I guessed that he was the age of a high school senior. I could tell he was conflicted about being there by the look on his face. I immediately felt fortunate that I had lived dis-ease-free through my young adult life. This young man has a mountain of challenges ahead of him at a very young age.
Sitting next to me was a married couple. She was nicely dressed, and showed little sign of the dis-ease. He was a small man dressed in a dirty t-shirt and black cotton sweatpants, and was there as her support. I couldn’t help but hear their conversation as he had no volume control, nor filter. She had been crying, and he was angry and cruel towards her. I sat there and gave him my cop stare whenever he said something inappropriate to her – making him ucomfortable. He was there for her support, but it was obvious that, to him, this was putting a dent in his busy TV watching day. He was missing the latest episode of Jerry Springer. This is a big day for her, but a big inconvenience for him.
The room was uncomfortable enough.
The nurse presented information about MS and the current lineup of four drug therapies that were approved for use. No drug therapy in 2011 had been designed as a cure just for use to limit severity and frequency of relapse.
There is no cure.
With all the information presented each person was then asked which therapy they would prefer.
The majority of people picked a drug called Rebif. After we had just heard the positive and negative side of each drug, I was surprised at the popular choice. Rebif is in a class of drugs called interferon and is self-injected three times a week. Another of the two drugs were also in the interferon class that required injection. All three of the interferon drugs required monthly blood tests as research showed that the drug had impaired liver function. There was no drug offered that could be taken orally.
I chose the drug called Copaxone. The big drawback to this drug for others was the daily injections. There was no blood work as the main ingredient is Glatiramer Acetate, which is a chemical produced within the body. Side effect was dead skin if the user didn’t move the injection site daily.
Needles don’t bother me, but, for some, getting a needle is like being poked in the eye with a burning stick.
Sweatpants had obviously heard enough. At the end of the session many remained as they had personal questions and required alone time with the nurse. Many waited patiently except for sweatpants. He went up and stood, arms crossed, directly behind a woman asking the nurse a question. He was huffing like a child who has just been told been told no. The woman he was with had left the room.
I had a couple questions for the nurse so I moved towards the front of the room. Sweatpants was glaring out the door while the nurse finished answering some questions.
I got my drug prescription, thanked the nurse, and was determined that from this day forward I would try to be the most supportive person I can be. I am also determined to help, any way I can, in the search for a cure.
I hope the woman who was with sweatpants is in a better place
On The Road With MS 