It’s hard to believe that just two weeks ago I could barely stand and now I’ve almost returned to life as normal! On March 2nd 2015 I began 5 days of the Lemtrada infusions to treat MS, and I’m currently going on my third week of recovery! You can read the whole story here.  

Last week I returned to work after two full weeks off and although I had a hard time making it through the entire day without a nap, I was still back! I work at a college, and last week there were quite a few viruses going around, so I encouraged students to keep their distance as I tried to protect my very weak immune system from intruders. I lasted the entire week without getting sick, and Friday morning I was able to resume my place in the classroom teaching! It felt so good! 

Friday also marked the beginning of our annual leadership conference at Summit. Again, I was nervous about the potential of getting sick, but the conference, called More, is one of my favourite things we do at the college. I was also scheduled to speak for two of the four main sessions, on Saturday night and again on Sunday morning. I always have a stool ready in case I need to sit while I’m speaking, but for both messages I was able to speak standing the whole time! If you’re interested, you can listen to recordings from the conference here. (Photos from #more15 by James Bak)

Speaking at More 15 at Summit Pacific College

Yesterday I had my first post-treatment appointment with my neurologist at UBC in Vancouver. He assured me although it’s a very aggressive treatment option, Lemtrada was definitely the right choice for treatment for me at this stage in my disease. He said I’m doing very well and he expects that once I have my final round of infusions in 12 months, I should not see additional new MS symptoms for 15 years. I am incredibly hopeful and truly believe that this treatment is going to change my life. 

My energy levels feel almost normal and I’m feeling much stronger. Yesterday I went back to the gym for the first time and I ran for 42 minutes without stopping! It may not seem like much, but considering I could hardly stand 2 weeks ago, I’m pretty excited! 

Celebrating a good report from the neurologist!

I’ve also had quite a few questions over the last few weeks, so I’ll attempt to answer them the best I can:

Q: So, what exactly did this treatment do? 

A: Basically, the treatment reset my immune system by binding to and depleting the immune cells (white blood cells) that are currently attacking the myelin coating on the nerves in my brain and spinal cord. Normally white blood cells are good because they attack bacteria and sickness in our bodies; but with autoimmune diseases like MS, the white blood cells are mistakingly attacking the brain and spinal cord. Now that this round of infusions is complete, all of the white blood cells in my body have been killed off and my body is now going to be working hard for the next few months to regenerate new cells they are less active against the myelin (nerve coating in my brain and spinal cord), ultimately reducing my relapses and slowing the progression of the disease. If all goes well, my body will produce new immune cells that will only attack sickness and infection instead of my central nervous system!

Q: Are all your symptoms gone now?

A: Unfortunately, no. I still have all of the same symptoms. My left ear is still partially deaf, my head still vibrates when I bite down, my arms are still numb, I still have buzzing in my legs, and I still feel an electric shock when I touch my chin to my chest. All of the same symptoms are still there. However, the neurologist said about 50% of people experience a decrease in their symptoms after about 1 or 2 years, once their brain and spine have had a chance to heal. So, although I don’t feel different yet, I’m still hopeful!

Q: Lemtrada seems like a very intense treatment option. Why did you choose such an agressive treatment? 

A: That’s easy. Multiple Sclerosis is a disease without a cure. It almost always gets worse and not better, and when you look into the future of someone with MS there are so many unknowns. Although I’m near the beginning of my disease, I already have “a pretty good handful” of lesions and in the last 10 months I’ve had 4 relapses. There are people who have it far worse, but I knew that I needed to be active in doing something to stop the progression of the disease before it progressed too far. Both Clark and I, and my neurologist agreed that for me, aggressive treatment was the best option. 

Q: Do you have to take any more medication?

A: For one month after the infusion I have to take anti-viral drugs to make up for my depleted immune system. But as for medication to treat MS, this is it! I will have one more infusion in 12 months, then I’m good for 15 years!

Q: You keep mentioning another infusion in 12 months. Do you have to have another infusion?

A: In 12 months I will go back in for 3 more day of consecutive infusions to finish off the treatment. Once that infusion is finished I should be finished the treatment! However, about 20% have a relapse after their second treatment and need to have a third infusion. I’m not anticipating that, but it does happen! 

Q: How will you know when your immune system is working again?

A: For the next 5 years I have to have to give blood and urine samples every month so they can monitor my health and screen for potential serious side effects. I have my first set of tests in a week, but I expect that it will take about 4 – 6 months until my immune system is healthy again!

I’m happy to try and answer any other questions you have!

I’ll continue to update monthly for the next few months, but so far, so good!