It’s as if a big hammer falls down on you. It puts everything into perspective.

01.03.2017
Patient stories

I started experiencing extreme back pain while on vacation in Halifax, Nova Scotia during Christmas 2009. I got into the bathtub every two hours to try to relieve the pain. I had a sore throat and I couldn’t swallow properly. I was feeling weak. Days passed and things got worse. Then I got on the ground to change my two year old daughter’s diaper and I just couldn’t get up again.

This happened during the swine flu pandemic, so when I arrived at the emergency room I was put into isolation. They thought I might have swine flu. I had tingles in my tongue and I was very lucky the emergency room doctor recognised that my symptoms were neurological. The neurologist told me that I had either Guillain-Barré Syndrome (GBS) or multiple sclerosis (MS).

By this point I was losing feeling in different parts of my body. I was unable to walk or write my name. I had facial paralysis. I couldn’t smile. I couldn’t blink properly. I started losing my swallowing reflex. I am claustrophobic and have a fear of not being able to breathe properly. I was afraid I would lose the use of my lungs, which I knew was a possibility. I kept thinking the whole time: “Don’t lose your lungs.”

Four hours after being seen, I was put on intravenous immunoglobulin (IVIG). The immunotherapy slowed everything down. I was wheelchair bound but thankfully, because of the quick diagnosis and early IVIG treatment, I was not put on respiratory support.

I was losing feeling in different parts of my body. I was unable to walk or write my name. I had facial paralysis. I couldn’t smile.

When I was diagnosed with GBS I had no idea of the gravity of what that meant. I didn’t realise it was going to take months away from my life. I ended up spending three months in hospital and three months in outpatient physiotherapy.

After an almost full recovery I was considering returning to work as an IT consultant. I had been off treatment for 15 months and was doing well. Then I had two relapses in early 2011 triggered by the flu. We were in Mexico on vacation. I had been feeling exhausted. I was having trouble getting up the stairs. I called the then Executive Director of the GBP/ CIDP Foundation, Susan Keast, who advised me to call my neurologist.

I was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) after having another acute onset. CIDP is considered to be the chronic counterpart of the acute disease GBS. My symptoms are acute so I present like GBS, but because I am relapsing I am considered chronic. I was put on IVIG therapy and stayed on treatment until 2015. My treatments were eventually spread out to every six weeks. I became tired of the inconvenience of going to an infusion clinic and I wanted to try home therapy. I entered a study investigating subcutaneous immunoglobulin treatment for CIDP. This involved stopping IVIG treatment to see if I developed increased weakness. After three months of no IVIG treatment and no onset of increased weakness, I was released from the trial and deemed not to require treatment. Wonderful, or so I thought.

 

If I could live in a bubble things would be better. I picked up a virus – it was a typical cold. I developed sensory loss just up to my knees, and was walking like a duck. In March 2016, after being exposed to another flu virus, I had an acute onset of CIDP. I was fully paralysed, unable to move from the neck down. Being paralysed and aware of everything that is to come is scary. Throughout this I never stopped working my fingers and wiggling the toes which still had slight movement. I received IVIG treatment and a moderate dose of prednisone, and 10 days later I walked out of hospital using two canes.

The GBS/CIDP Foundation of Canada was there for me and my family when we needed them. I wanted to give back by supporting newly diagnosed patients. In 2013, I became a liaison for the Foundation, and late that summer I became the Executive Director. Because my CIDP presents acutely I can speak to GBS patients just as well as to CIDP patients.

I was fully paralysed, unable to move from the neck down. Being paralysed and aware of everything that is to come is scary. IVIG saved me and for this I am grateful. 

We are rare disorders, 1 to 2 in 100,000 for GBS. All our volunteers are either patients or caregivers of patients. We have 32 liaison volunteers across Canada and our patients are our biggest source of information. The Foundation builds relationships with doctors and specialists, and we make connections and provide information about services, best practice, challenges, and activities.

I have observed that a common denominator of people developing these disorders is that they tend to be type A personalities – these are people involved in a lot of activities, with busy lifestyles and careers. When you develop a condition such as GBS or CIDP it’s as if a big hammer falls down on you. It is a warning bell that puts everything into perspective. Some of us listen; but truthfully, it’s hard to change your personality.

Now when I am exhausted I listen to my body. I lie down to get a quick rest to get through the rest of the day. One of the biggest challenges facing patients with these conditions is that not enough emphasis is placed on the management of residuals. Once a patient has either been treated for GBS or has achieved stability with CIDP, many of us are left with after effects that are difficult to manage. After GBS you may be left with permanent physical limitations – you could be in a wheelchair. Imagine you are a plumber and now you are in a wheelchair.

You have to accept that your life has changed. You have to go through a mourning of what you were once able to do. You must come to terms with the new reality and adapt what you can do physically. It is difficult when you still have to walk with a cane, or you still have major amounts of pain. How do you maintain a job when you are exhausted? The consequences of GBS could mean you have to change your career. Or you could find yourself struggling with family life because some people just don’t know how to support a loved one who is ill.

We used to be carefree. Now I have a husband who worries about me and two little girls who make sure I am constantly checking in and reassuring them I am okay. Every time you get flu you wonder if you will have a relapse. I don’t want to be on treatment if I don’t need to be, but every time I get hit with one of these acute relapses I don’t know what is going to be recoverable. When you relapse it takes a lot of willpower to get through it. Every time I relapse it becomes harder to deal with. A lot of patients deal with depression.

The Foundation is committed to ensuring that no one with GBS or CIDP suffers alone and that everyone has access to treatment. We are a foundation run by patients for patients. We are here to support and every day we are continuing to get better at what we do. Doing this work, I have met fantastic people from all walks of life. Their courage is inspiring.

IVIG saved me and for this I am grateful. Experiencing this condition, you discover a sense of your own mortality. I have seen my mortality more than once. After coming through that you hug your kids more often. You tell your family you love them more often. You take one day at a time and you appreciate that day. You live life to the fullest. I want to thank Octapharma for the chance to tell my story, our story.

Keywords

Annual report

Diseases & therapies

Immunology