Category Archives: MULTIPLE SCLEROSIS

TREATMENT – MY LEMTRADA STORY – ROUND 2 | DAY 3

February 25, 2016

On November 10th 2014 my neurologist at the UBC Centre for Brain Health confirmed the diagnosis given by my GP few months earlier that I did, in fact, have multiple sclerosis (If you haven’t read my diagnosis story yet, you should totally read it here. I promise it’s worth the read!). After looking over my MRI images and chatting with me about my disease progression he recommended a brand new treatment called Lemtrada as a first line treatment, a treatment that would hopefully halt the progression of the disease for 10-15 years. The drug had just been approved in Canada (even before it was approved in the US) and I would be one of the first to undergo the treatment outside of the clinical trial patients.

I read every piece of information I could get my hands on and after much consideration and prayer, I decided the benefits outweighed the risks and on March 2, 2015 I went for my first of 8 infusions (you can read about my first infusion here.)

My first round of treatment (March 2 – March 6, 2015) was 5 consecutive days and began the process that would protect my malfunctioning immune system from attacking the myelin (the outer coating on the nerves – kind of like the outer coating on an electrical wire) in my brain and spinal cord. 12 months later I would have to return to finish the process off by doing 3 more days of infusions. Well, today I finished my last one!! All 8 infusions are complete and I will hopefully not need any more treatment for 15 years!

5:00am – I had a great night’s sleep last night and woke up ready to take on my final day! I started the day off with a quick shower, wrapping my IV in plastic wrap to protect it from the moisture, got myself ready, and once again started my day with a VegaOne smoothie to give me some extra nutrients to start the day!

7:30am – When we arrived back at the clinic I was still experiencing some heaviness in my chest, making it difficult to breathe deep. My vision was also blurry with little floaters. Besides that I felt pretty good! My IV line wasn’t working as well as needed so my nurse switched it up to another vein and I was ready to go!

8:00am – Before I get the Lemtrada each day I get an hour of steroids (prednisone) to combat some of the side affects that come with an intense treatment like Lemtrada. I also take benydryl and gravol to fight off nausea and rashes/itchiness, which induces what I like to call my drug coma because that stuff knocks me right out!

9:30am – As soon as a doctor is in the building I can start my last round of Lemtrada! Yay! It takes about 4 hours to run through completely, most of which I sleep through because of the other medication they give me.

1:30pm – Once the Lemtrada is finished dripping I was observed for 2 hours to make sure my heart, blood pressure and temperature were okay. Clark and I passed the time with a game of cards, which I totally let him win. That’s not true, I never let anyone win. I love winning.

3:30pm – After my 2 hour observation was up I had my IV removed and I was cleared to go home!!! Peace out Lemtrada! Time to make some new memories!

I am now in recovery, resting and taking care of myself so my immune system can come back to full health. For the next 4 years I’ll be having monthly blood and urine tests to monitor any side effects that may arise so they can be treated as soon as possible!

I would appreciate your continued prayers as I have so many dreams and goals to look forward to now that this season of treatment is behind me! Thanks for your continued support! I wish I could express my gratitude adequately!!!

I’m so excited for the future!! We have some big things planned coming months and years, which we’re excited to share as the time comes!! The best is yet to come!!! Right?

TREATMENT – MY LEMTRADA STORY – ROUND 2 | DAY 2

February 24, 2016

MULTIPLE SCLEROSIS

Another day down and only 1 more to go! If you missed yesterdays update, you can find it here!

I decided to support my good friend and fellow MSer (is that really what we’re calling ourselves. I need to think of something cooler), by wearing my I Am Strong t-shirt today! Sarah launched this campaign a couple months ago to encourage others to find their strength as well as to raise funds to pay off her own climbing medical bills (You can read her story and follow her journey here at sarahduron.com). Still shy of paying off her own bills, Sarah made a beautiful and selfless decision to help out another young woman with MS named Anna who’s MS is progressing quickly, making available treatments ineffective. In a last hope effort to find a solution, Anna is pursuing the possibility of a Stem Cell treatment, which cost thousands of dollars. All funds raised from the sale of t-shirts on Sarah’s website will go to helping Anna get the care she needs. Go buy one here!

Now for my infusion day 2!

5:00am – Got to sleep in a little later (1/2 hour) and after a quick shower with my IV wrapped in Saran Wrap, I packed my bag, drank my Vega Smoothie and we were on our way! We arrived in New West a little early so we grabbed a hot drink before heading to the clinic for day 2!

7:30am – The nurse flushed my IV line (left in from the day before) and all was well, so no poking around today! It’s the little things that make me happy! Once the line way cleaned and ready, I started an hour of steroids to combat any side effects that might come with the Lemtrada. I also look an anti-viral medication to fight off the viruses that my immune system no longer can, gravol, benydryl, reactine and zantac. All required to keep away side effects!

9:00am – As soon as a doctor is the building at 9am the Lemtrada can start. The gravol and benydryl knock me out, so I slept for a couple hours in the morning.

11:00am – A couple awesome young women from the college where I work gave me a gift bag, instructing me to open it when I was bored, so I did! I was blown away at what was inside! A few fabulous little gifts and stacks of letters and cards from the women at the college! So encouraging! The joy and life those words brought me is difficult to describe! It’s such an honour to be able to lead, pastor and teach them!

11:30am – I had a few minor side effects today. Floaters in my vision, a heavy chest when I breathe deep and a slight fever. No headache today though! Yay! The fever had subsided by the end of the day, so hoping all is well!

1:30pm – Lemtrada finished and now begins my 2 hours of observation to make sure I’m responding okay to everything. I finished off the afternoon playing cards with Clark! I won, obviously, and he continues to claim that it’s because I’m on performance enhancing drugs. Honestly, he’s been the most supportive, selfless husband through our whole marriage, but weeks like this I get to see his dedication to me in a whole new way. He’s one of kind!

3:30pm – Infusion finished. Observation period is over and by 3:45 we’re in the car on our way home!

Overall, I’m feeling pretty good and I’m in great spirits! The constant outpouring of love makes a difference. I feel so loved and cared for. From the bottom of my heart, thank you. Thank you for the comments, messages, gifts, cards, letters and everything else you’ve shared with our family this week. I am blown away. We are better in community. I’m honoured to be a part of such a strong one!

TREATMENT – MY LEMTRADA STORY – ROUND 2 | DAY 1

February 23, 2016

MULTIPLE SCLEROSIS

Today I began my second and final round of Lemtrada (alemtuzumab), a drug also used to treat lymphocytic leukemia. The drug is administered by IV for 5 days in row, and 12 months later for 3 days in a row. Since I completed my 5 day infusion a year ago (you can read about my first round here DAY 1 DAY 2 DAY 3 DAY 4 DAY 5), I’m now completing my last round this week!

Essentially the drug is targeting my malfunctioning immune system (MS is believed to be an autoimmune disease that causes my immune system to attack the myelin coating, or the protective sheath, on the outside of my nerves). The idea is that if they can kill off my malfunctioning immune system, when it heals and comes back, it will come back healthier, no longer attacking my myelin. That’s the goal!

My hope is to keep people updated on my journey but also to provide a resource for others who are awaiting their treatment, or thinking about the possibility of Lemtrada. I hope you find it helpful!

DAY 1

4:30am – I got up early to have a nice shower and prepare for the day. I always feel so much better when I have a shower, do my hair, put on makeup etc. When I dress like I’m ready for the day, I think I psychologically come in with a different attitude. I packed my day bag which included: A small knit blanket, a pillow, my Ipad, my phone, earphones, a book (Leadership Pain by Samuel R Chand), candies (to suck on to overpower the metallic taste that comes with steroids), my medication, a water bottle and snacks!

I also made myself a smoothie with my favourite plant-based protein powder, Vega One in hope that it would kick start my day well! I was ready to go by 6:00am for our short 50 minute drive from Abbotsford to the infusion clinic in New Westminister.

7:00am – We arrived at the infusion clinic right on time and the the nurse began by going over some paper work and questions about my recent health. By 7:30 she started me on Cortisone steroids, given each day before the infusion to help combat some of the side effects that often comes with Lemtrada. The steroids aren’t bad, but they do leave a terrible metallic taste in your mouth!

9:00am – By 9:00am I was given Lemtrada by IV. The actually drug can’t start until 9:00, until a doctor is present and on-call in the building in case something goes wrong. I was also given gravol and benydryl to combat common side effects like nausea and hives/itching. I am super sensitive to things like gravol and benydryl, so with 1/2 hour I was out like a light! I slept like a baby until about 12:30, barely waking up to my blood pressure and temperature being taken every 1/2 hour!

12:30pm – When I woke up from my nap I have a pretty strong headache behind my eyes, but beside that, no other side effects. I was able to read a little and catch up on all the encouraging messages I received that morning! Thanks friends! During that time our friend, colleague and mentor, Fred Fulford, stopped by to visit! It was so nice to have a familiar face stop by! The afternoon flew by!

1:30pm – By 1:30 the drug was finished but I had to stay hooked up to the fluid for 2 hours while the nurses continued to monitor my heart, symptoms and side effects, but beside the headache, which refuses to go away, even with medication, I’m all good!

3:30pm – I was discharged 1/2 hour early and was home by 4:30! Yay!

Thanks so much for your unbelievable outpouring of love and support! I am convinced more and more that I really do have an incredible community standing with me! I’m in great spirits and ready to rest tonight and take on the day again tomorrow!

I AM STRONG – Guest Post by Sarah Duron + Free Tech Download

November 3, 2015

HEALTH & FITNESS / MULTIPLE SCLEROSIS / TECH DOWNLOADS

The last two months have been tough for me (You can read more about that here). Since the end of August just getting through the work day has been a struggle, and by the time I got home I hardly had the energy to cook, let alone work out. My muscles were disappearing. My strength was failing. I was weak.

I knew that regaining strength would be an important part of my recovery, but it’s hard.

Recognizing I couldn’t do it on my own, I sent a message to my friend Sarah in Florida. Sarah and I connected earlier this year, through her sister-in-law, after she was diagnosed with MS. Our common diagnosis and passion for ministry made for an instant friendship. As we’ve talked about life with MS, we have both found common ground in our struggle to stay healthy and active. It’s not easy for either of us to find the energy to work out, but we know we need to. We both feel weak. We both feel out of shape. But we’re both ready to get stronger and healthier!

I can’t wait for you to meet Sarah!

SARAH DURON – I AM STRONG

Sarah is a mother of two, a graphic designer, and a student at Southeastern University. You can read her blog at sarahduron.com and follow her on instagram @sarahduron. (Also, how gorgeous is she?)

A couple months ago, I decided to go off of MS treatment. I originally discontinued the medication I was on with the intent of switching to a new option, but in the interim I noticed that I was starting to feel better. Finally feeling more like myself for the first time in a long time, I decided to take on the gamble of going without treatment completely. With this decision has come the awareness that I must up my game on my own personal health and fitness. If I am not going to utilize the treatments that are out there, then the only responsible alternative is to equip my body to function at optimum performance. This means I need to be consuming tons of nutrients, avoiding harmful ingredients, and I also need to be working out- like, a lot.

It all seems so simple! Yet, lately it is just so hard. With the holidays coming up, which is always the time of year that I throw standards and caution to the wind when it comes to proper diet, and due to the fact that I feel so much better physically, I have been slacking off BIG TIME. Also, I have been really struggling lately with pushing myself to exercise. You know how it feels when you haven’t worked out in awhile, and since you are so out of shape it takes so much self-discipline to get started? Well, I feel like that times a thousand. My muscles are super weak and I am just incredibly unfit. In my situation, with the odds that I am facing, being a slacker is NOT an option! If you have ever surfed the web to study how one can thrive and experience a high quality of life despite MS, you would know that this cannot possibly be accomplished without a high commitment to health and fitness.

One of my dearest new friends and fellow MS fighter, Kimberlee Moran, is one of my hugest inspirations. Diagnosed with MS a year ago, she has continued with such determination to thrive as an incredible preacher, theology professor, pastor and wife! Not to mention, she has an amazing blog, mad design skills, and this doesn’t even begin to cover the remarkable person that she is. We are both determined to experience a long, energetic life bringing the message, hope and love of Jesus Christ to the world. This is why we’ve decided to come together and join arms to encourage one another toward our health and fitness goals.

I am sharing this with you because we want to invite you to join in this challenge with us! Even if you don’t have MS, I imagine you probably have your own personal health and fitness goals that you would like to see become a reality! On our own, and without the accountability of others, we all can easily slack off. This is why we want to invite you to be IAMStrong! Together, we can do this! We are making a commitment to devote at least thirty minutes a day, five days a week, to exercise. We are also making the commitment to eating everything we eat on PURPOSE. We want to plan ahead for meals, share recipes, and encourage each other to enjoy all the healthy, nutritious, yet yummy foods that God has provided to us. I think this will be fun! I’m feeling the motivation already! So, there is our invite! Who’s with me? Who’s with me?!

If there’s one thing I’ve learned, it’s the power of coming together. Sarah and I are challenging all of you to join with us in our pledge to get healthier and finish 2015 strong! I refuse to wait until 2016 to make a New Year’s resolution to get my strength back! We’re starting now, post-Hallowe’en/pre-Holiday season, which may be the most challenging time of the year to stay on track! But we can do it together right?

We’re asking you to join us. Our goal is to start 2016 strong and healthy, but we can’t do it on our own. If you want to join us in our journey let us know in the comments below or connect with us on instagram @sarahduron & @kimberleemoran. If we’re all in this together, I know it will be easier! Let’s do this!

Grab this FREE TECH DOWNLOAD to remind yourself, “I AM STRONG,” regardless of the obstacles you face!

DESKTOP | IPHONE | IPAD

Buy the matching I AM STRONG t-shirt HERE to help support others fighting MS.

My Personal Health Update – 7 months post Lemtrada – The not-so-great news

October 18, 2015

MULTIPLE SCLEROSIS

I’ve been struggling with how to write this post. This blog began as a way for me to share my journey to find joy and purpose in the hardest season of my life, and I don’t want to lose that.

There’s part of me that wants to be honest and transparent about my health, especially to help those who may be in similar situations; but there’s another part of me that just wants to celebrate the victories in life and withhold the harder, more difficult moments. I’m not sure exactly why that is. Maybe it’s partly because I like to try to be positive and encouraging. Maybe it’s because admitting weakness makes me vulnerable. Part of it is I don’t want to seem like a victim. Regardless of the reason, after processing this last season, I’ve decided to be as honest as I can in this update, because life isn’t always as easy as it can appear on the surface.

If you’ve been following my journey you know that last year I was diagnosed with MS. (You can read the story here in part 1, part 2 and part 3.) it’s been a truly transformative year for me, changing me in ways I never could have imagined. I’m more open; more willing to reach out; I slow down and rest more often; I enjoy the people and things I love more; I’m a different, and, in my opinion, a better person.

A huge part of my journey has also been the treatment I received this past March, a new MS treatment drug called Lemtrada. I underwent 5 long days of treatment to infuse the drug into my system (you can read about each day of treatment here on day 1, day 2, day 3, day 4, and day 5). Essentially the drug completely wiped out my immune system, forcing my body to rebuild a new immune system by regenerating new white blood cells. Initially it seemed like the treatment worked really well. My post-treatment appointment with my neurologist was positive and just a few weeks later I was able to run substantial distances, run stairs again, and much of the energy and strength I had been lacking seemed to return (you can read my post-treatment updates here and here).

The hope was that this treatment would halt the progression of the disease by preventing any future attacks or relapses. It couldn’t heal the damage that was already done, but it would prevent any new lesions from developing on my brain and spine. Patients get two rounds of this treatment, 12 months apart, but many people are relapse free after their first round. Thats most people.

Near the beginning of September this all-too-familiar fatigue and weakness began to return. I was struggling to sit up straight, I could barely run, I could hardly stand to teach a whole class, and some strange new symptoms began to show up. First I noticed that my left foot could no longer feel temperature properly, then I began to feel numbness in left side of my face, almost like it was frozen. I really thought I was done with this.

I tried not to panic, but my fears were confirmed when I saw my medical team at UBC last Thursday. I had relapsed. Again.

I was so disappointed. I was frustrated. Honestly, I was so sad. I knew there was a small chance of relapse between treatment courses, but I truly, with all my heart, never thought it would happen. My neurologist explained that based the frequency of my attacks over the last 18 months, my MS seemed to be fairly aggressive. When MS is so active and aggressive it’s not totally uncommon for patients to relapse before their second dose.

My medical team agreed that the best course of action for me would be do a three day steroid infusion to help my body recover from the relapse and reduce the current inflammation in my brain. I was a little reluctant, but I trust my team, and tomorrow I begin 3 days of steroids as a day care patient at the Abbotsford hospital. Yay for the taste of metal and ridiculous swelling.

I’m desperately hoping that I don’t relapse again before my next round of Lemtrada in February, but if I’ve already relapsed once, it means my immune system didn’t come back the way it was supposed to. Instead of attacking viruses and infections like it’s supposed to, it’s still attacking my Central Nervous System.

This doesn’t necessarily mean that the treatment won’t work. This is why people have two rounds 12 months apart, just in case something like this happens. My doctor also said on Thursday that if it’s still not working after round 2, they can do a third round, which He is confident will be enough.

I know it’s not a celebratory or encouraging post, but I don’t want to give the illusion that this process is going better than it actually is. I’m still full of joy and hope, but that doesn’t completely erase the disappointment and frustration I feel. Please pray for me if you think of it! I could use a little extra strength these days!

YOU ARE NOT ALONE + FREE DOWNLOAD – TECH TUESDAY

October 6, 2015

MULTIPLE SCLEROSIS / TECH DOWNLOADS

I recently wrote this piece for the MS Society of Canada, so I thought I’d share it with you here! And as a bonus, here’s a fall-themed “You Are Not Alone” tech download. Enjoy!

My whole life I prided myself on my independence. I set goals. I worked hard. I accomplished them. It wasn’t like I made a conscious decision to block others out, but I did. Every time I chose to go through something on my own. Every time I refused to ask to for help. Every time I did my own thing, I sent the message, “I don’t need your help. I can do it on my own.”

One year ago my world was turned upside down as I sat nervously in a small examination room and listened to the doctor relay the words I was dreading, “Kim, you have MS.”

I was devastated. Confused. Broken. What was I supposed to do now? I braced myself for what I believed was going to be one of the hardest, darkest seasons of my life. I knew it wasn’t going to be easy, and I was terrified.

I recognized I had a choice to make; I could choose to live my life in independence, holding this new diagnosis close to my chest and away from the rest of the world, or I could open myself up, allowing people to walk alongside me, support me, and help carry me as I journeyed into the unknown.

One by one I began to let people in on my journey. I began to open up and tell my story, experience their support, and before I knew it I was wading through this mucky mess of a disease with people all around me. I was not alone.

I expected this last year to be one of the hardest, darkest seasons of my life, but that hasn’t been my experience at all. As I’ve opened up myself to the people around me, I’ve experienced one of the most life giving, encouraging seasons of my life so far. As a community of people has rallied around me in love and support, I am reminded that I do need help, every single day. I am reminded that I am not alone.

This past weekend I participated in Muck MS in Chilliwack, BC. I was surrounded by some of my closest friends, members of the MS community who I’ve met over the past year, and hundreds of others who united together in the fight against MS.

Our Muck MS Team – Saturday, October 3rd, 2015.

Your presence and participation in events like Muck MS impact far more than you may ever understand. It’s not solely about the money we raise for MS care and research; it extends far further than that. Long after the funds are spent, the cheers of spectators still ring in my ears. The high fives from fellow participants still bring a smile to my face; and I’m still experiencing the presence of friends, family and strangers who chose to stand alongside me and remind me that those who fight MS don’t have to do it alone.

The truth is, we all need help. We can’t do it on our own. All you have to do is take a good look around at the masses of mud-runners, volunteers and cheering squads to see it. We’re wading through this muck together, and we’re better for it.

You can download this graphic for FREE for your desktop, iphone or ipad as a daily reminder that you are not alone.

DESKTOP IPHONE IPAD

I’M WALKING TO FIGHT MS

May 13, 2015

MULTIPLE SCLEROSIS

A few months ago Clark was going through some old files and he came across a donation receipt with my name on it from 2007 for $40 for the MS Walk. I made that donation before I ever knew how MS would affect me. To be honest, at that point I really had no clue what MS even was. (If you haven’t heard my MS story yet, you can read it here: Part 1, Part 2 and Part 3.)

On Sunday, May 24th 2015, I’m walking in my first ever MS Walk. I’ve set a goal to try and raise $1000 in the next 10 days to go towards finding a cure for MS.

You can follow this link (http://mssoc.convio.net/goto/kimmoran) to take you directly to my support page to make a donation!

Canada has one of the highest rates of MS in the world, and I think Canadians can play a huge part in raising money for further research! Funds raised from the walk also help to support those living with MS in our own communities, many who are no longer able to work.

Thanks for supporting me as I walk!!

TREATMENT – LEMTRADA – 6 WEEKS POST TREATMENT

April 18, 2015

MULTIPLE SCLEROSIS

It’s been 6 weeks since I finished my first 5-day round of LEMTRADA infusions to treat MS. Crazy! I sometimes forget that just 6 weeks ago I could barely move, let alone function normally! I’ve come a long way! (You can read about treatment and my experience with MS here.)

Life has been so busy the past few weeks as I’m trying to catch up on the time I was away from work. I barely remember to update social media, let alone that I have a blog to update, so I’m sorry I’ve been a little M.I.A.!

Let me bring you up to speed!

The two questions I get most often are, “so, how do you feel?” and “did it work?” So, to answer the first, and most commonly asked question, I feel amazing! To be honest, there are days lately that I almost feel normal. I’ve been working out regularly at the gym, and I’ve been training for that half marathon that I intend to run later this year. I was so excited a few weeks ago when I was able to run 15km! Honestly, I never thought in a million years I’d be running so far, so quickly, but I did it! But it get’s better!

Yesterday Clark and I planned to go to the gym in the evening, but what we didn’t realize was that our gym closes at 5pm on Saturday! Apparently we’re the only ~~losers~~ really cool people who like to work out on a Saturday night? Anyway, we went over to our local outdoor stadium to run stairs! It’s been close to nine months since I’ve even attempted to run stairs, as stairs were one of the hardest things for me when it came to my mobility over the last few months. I was almost able to keep up with Clark and it felt so good to know that I had returned to something I thought may be out of reach for me! So exciting!

But, the really exciting news comes after our run today! We’ve labelled Sundays, Sunday Run-Day, and have dedicated Sunday afternoon/evening to completing our long run for the week. As part of our half marathon training we run 5-10km a few days a week, and on the weekends we push ourselves to see how far we can go. Today we ran… are you ready for this? … 22 km!! That’s more than the distance of a half marathon!

Now, I should mention that I’m absolutely exhausted and I can barely move, but if someone told me 6 weeks ago, or even 3 months ago that I’d be running 22km by April, I would have thought they were crazy! My goal was to the defy the odds this year, and I really believe that with supernatural strength from Heaven, I’m going to show the world that my God has me in His hands every day.

To answer the second question, at this point it’s too early say if the treatment “worked” or not. That will be evident in the next few years as my MRI’s are monitored to ensure there’s no new damage in my brain and spinal cord. At this point I can only go off the absence of new relapses and how I feel; and so far I’m relapse-free and I feel great! That’s a good sign!

I’ve also received my first round of lab work. For the next five years they will monitor my blood and urine for any side effects from the Lemtrada, as well they are keeping track of where my white blood cell count is. Below is my first month results, and as you can see, my white blood cells are still slightly below the range they should be, and my lymphocytes are also quite low. Apparently this is normal for someone at the stage of recovery I’m at. It will likely take a few more months before my white blood cells and lymphocytes are within normal range and my immune system begins to function normally.

Overall, I am so glad I decided to move forward with Lemtrada. It’s already changing my quality of life and I’m so optimistic that it’s altered the course of my disease! Thanks again for following along with my journey! I’m happy to answer any treatment or recovery questions you may have if you comment below!

TREATMENT – LEMTRADA – 2 WEEKS POST-TREATMENT + Q&A

March 24, 2015

FAITH & MINISTRY / MULTIPLE SCLEROSIS

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)

More 15

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!

TREATMENT – MY LEMTRADA STORY – 1 WEEK POST-TREATMENT

March 13, 2015

MULTIPLE SCLEROSIS

One week ago today I finished my final Lemtrada infusion (You can follow my infusion journey here). During infusion week I had slight tremors in my hands, a little weakness in my legs, blurred vision, slight heaviness in my chest and an abnormally low heart-beat, but for the most part, I felt a million times better than I thought I would! It was the “after-math” that I was unprepared for!

It’s hard to put into words how my body has felt the past week. It felt like everything good in my body had been sucked out, and my body was fighting for dear life just to stay alive. I know that sounds extreme, but I don’t know how else to explain it. The first weekend I couldn’t hold up my own body weight to sit. I barely had the energy to eat, not to mention I was extremely nauseous and couldn’t keep food down. I couldn’t even stand long enough to brush my teeth or fill a cup full of water. Really, I was brushing my teeth from my knees. I had no idea how I was going to make it.

post Infusion

By Monday I felt stronger. I was able to walk around the house on my own strength and even take a shower! Ambitious to make a quick recovery I convinced Clark to take me for a walk to the bookstore, less than 3/4 of a kilometre from our home. He agreed and we began to slow journey around the corner. By the time we arrived at the bookstore, I was wiped. I had to sit because I thought I was going to pass out. Once we made it back home I crawled onto my bed and didn’t move for the rest of the day. Maybe a quick recovery needed to come by way of rest instead of pushing my boundaries.

Tuesday I was forced to stay put, so I parked myself on my balcony for the day and enjoyed the sunny 17 degree weather outside! It was nice to be outside, but what I was craving was human interaction! I absolutely love being with people, so by Tuesday I was going a little nuts. I needed to get out! I scheduled a coffee date Wednesday with a friend, optimistic that I could handle sitting upright for at least an hour. I made it through coffee on Wednesday morning, but that resulted in sleeping the afternoon away as soon as I got home. It seemed like I would pay for every effort to do something besides sleep and eat.

On Wednesday evening I decided that if my body couldn’t handle walking, maybe it could handle yoga, or at least a good stretch! I do yoga strictly for the physical training, not mediation and my favourite way to get a good yoga routine in at home is the Yoga.com app (you can check it out here). It has number of different routines ranging from beginner to advanced and cost only a few dollars. You can also change the background music to suit your style, which I love. I did a beginner stretching routine to ease myself back into it, and it was perfect for where I’m at right now! Gave me lots of time to rest between stretches!

Post-infusion Yoga

I can’t even explain how much better I felt Thursday! I was able to do another simple yoga routine, and I ventured outside! I needed to pick up a Bridal shower gift, so I went to do that and I also did my first post-infusion grocery shop! By the time I was finished at the grocery store, I was wiped, but I did it! Progress! My nurse also called to see how I was doing and assured me that the extreme fatigue I had been experiencing was perfectly normal.

That brings us to today, Friday! Today I cleaned the floors, washed my bedding, made lunch, did another yoga routine and enjoyed the sunshine on the balcony! Yoga is really helping to regain my strength without exhausting my body. I still feel great, and no nap today! I think I’m almost ready to return to life as normal!

Thanks again for keeping me in your thoughts and prayers this past week. I know I’ve said it a million times, but I’ blown away at the support I’ve felt over the last 2 weeks! I see my neurologist again in a week Monday, and I’ll be giving blood and urine samples every month for the next 5 years to monitor by health. I’m hopeful this treatment is going work! I’ll keep you posted!