When I used to hear the term ‘support group’, an image of middle-aged sad people, sitting in a circle came to mind. My name is John, and I am an alcoholic. Support groups always sounded really depressing to me.
That is, until I was diagnosed with GBS. I’d never heard of it. My family and friends had never heard of it. Some of my own doctors and nurses had never seen it before. I felt completely alone. But I wasn’t. When I found out there were others who had GBS – others who knew my pain, who could offer my advice – support groups didn’t sound so depressing after all.
Shortly after I was released from the hospital in 2011, I attended my first GBS conference. It was more than a support group – yes there were others there who’d been through what I had – but there were doctors and specialists, dedicated on learning, educating, and helping us. I realized we were far from alone. Since then, I’ve been to 5 more conferences across Canada, each one leaving me feeling more alive and inspired. The conferences remind me that learning about our disease, and connecting with other survivors is so important. Why go through our struggles uneducated and alone? Why not help others that are going through it now?
When I found out the GBS/CIDP Foundation International was celebrating their 30-year symposium (one of the largest GBS and CIDP conferences in the world) in 2018, I knew I had to attend.
The symposium was held at the beautiful Hilton in San Diego. Surrounded by large cascading palm trees and located right on the beach, I couldn’t have asked for a better location. The event started on Thursday night, with a 1km walk around the hotel. Considering majority of us lost the ability to use our legs at some point, this walk was extra special to us. The walk was followed by a mix and mingle, where we all had our corresponding t-shirts on – each color represented the area in the country (or the world) that you lived. It was a great way for people to find others that live in their area, and I was immediately able to find my fellow Canadians – and other International travelers!
The conference kicked off on Friday morning with a Key Note address from the talented Michael Coleman – the actor who played Happy on ABC’s “Once Upon a Time.” Michael was diagnosed with GBS in 2016, and we’d connected after he saw my YouTube video. It came as a complete surprise when Michael announced in his speech that he was star struck having met me the night before (an actor on a TV show, telling me he was star struck?!), and it made me realize just how many people really have seen that video! His speech, that made us laugh and cry was a great start to the event.
The next two days were packed full of various different sessions – from managing fatigue, pain and stress, research updates, new treatments, emotional and sexual health, insurance updates, exercise, vaccinations, and my favorite – Ask the Experts, where you were able to ask any questions to some of the most knowledgeable doctors on GBS in the world. I liked how they broke out some of the sessions specific to GBS or CIDP, specific to patients or caregivers, and specific to men or women – to make most of everyone’s time and ensure no one was sitting through too much that didn’t apply to them. I met so many new people, and so many people I’d connected with online. I met people in wheelchairs and walkers, determined to not let their diseases hold them back. I made lifelong friends that I cant wait to see again. The conference concluded on Saturday night with a reception for dinner, drinks and dancing.
There were a lot of fine details I loved about the conference. How the doctors stuck around to actually have more in depth conversations with us. Getting to do aerobics in our chairs, to show that when it comes to fitness, there are no excuses. The room to do Yoga, for people to take a mental break. A makeover room for those wanting a little pick me up of their appearance. The boxed lunches you could take wherever for the one and a half hour lunches. And the ability to skip out on any session that didn’t pertain to you. With it being winter back in Canada I was sure to head to the pool a few times to enjoy the sun.
Here are a few key things I learned from the sessions that I wanted to share:
Fatigue is the number one residual complaint of GBS and CIDP survivors. I can’t even count how many times I’ve heard of neurologists tell their patients that fatigue is NOT a residual – even my own. When actually, it’s THE most common residual. About 80% of GBS patients (whether they have a mild or severe case) experience relentless fatigue that interferes with their daily life. While unfortunately the doctors have not found any medication that helps, their clinical studies show that exercise can. Even as little as 3 x a week for 30 min improved fatigue in the patients they studied. But they stressed the importance of not pushing yourself to the extreme. If fatigue worsens over 12-24 hours after a workout, then you worked too hard. You don’t want to stop completely, but adjust accordingly. It’s totally okay to do low reps, low resistance, and range of motion exercises – as long as you get that heart rate up.
Pain was the second most common residual complaint, with 60% of patients experiencing pain (either nerve or muscle pain.) In addition to the usual medications prescribed (Gabapentin, antidepressants, etc.) they also pointed out that sleep, stress management, mindfulness (Yoga, Tai Chi, etc.), acupuncture and physical exercise help pain as well. There was mention of inflammatory diets and cannabis – I myself have not cut out foods known to cause inflammation but cannabis is the number one thing I use for nerve pain; either CBD, or THC.
Another interesting topic was about mental health. Accepting our circumstances and adjusting our lifestyles. Of course, we should always strive to be positive and push forward, but sometimes we have to remind ourselves that our bodies are just not the same anymore. We may not be able to do as much as we once could. Which is why it’s extremely important to do the things that you are able to do that bring you joy, and cut out the things that drain you. Little things like online grocery shopping, getting a cleaner, or a Rumba, Smart Home devices such as controls on locks, lights and thermostats can make such a difference in people’s lives. Make Alexa do the work! The overall message was about resilience, and sometimes its not what happens to you, its how you react, respond and recover emotionally from what happens to you.
The most exciting thing brought up at the conference was a breakthrough in research studies for GBS – the first breakthrough in over 20 years. Recent studies have found a specific complement (C5) within our antibodies that is activated when GBS is triggered. While IVIG and plasmapheresis treatments decrease the antibodies and inhibit this compound, the treatment Eculizumab completely blocks it. By blocking the C5 complement protein, Eculizumab prevents these proteins from causing further damage. For this trial, the new treatment was given with IVIG at the time of diagnosis. The patients that received both treatments, had faster and more complete recoveries. It may not be a cure, but it’s certainly progress! The results of that clinical trial from Japan are expected sometime in 2019.
On Sunday, I spoke at Patient Summit, a smaller annual event where patients get the opportunity to share their story. I was incredibly honored to be awarded the Jeanne Barnard award, for my dedication to the GBS/CIDP community. I also got to meet one of my idols, a woman who did ninja warrior after recovering from GBS! (Her video is in the resource section of my website). Kudos to Jacob Lowry for organizing this great event – it was streamed live on Facebook, which I though was a brilliant idea for those that weren’t able to make it.
If you are ever considering attending a US symposium or Patient Summit in the future, I highly recommend you do. (The next symposium is October 1-3, 2020 in Alexandria, Virginia; the next Patient Summit is sometime in 2019 in Nashville, Tennessee.) The things you learn and the people you meet are completely worth the cost.
As Michael Coleman quoted in his keynote address ” I feel like an alien who has finally found my home.”