I guess I don’t understand when some people say “walking doesn’t define happiness.” To me, it really does: I’ve grown up with Cerebral Palsy and I’ve undergone years of surgery and therapy to become independent, only to begin all over again after developing Guillain-Barré syndrome (GBS).
But I’m stubborn and I can do this. When you start your life as a premature baby, you have to be.
I’m writing this post for you, because I want more people to know what GBS is.
Guillain-Barré(ghee-yan-bar) Syndrome: the facts
Created by CPA, sourced from Physiopedia, the National Institute of Neurological Disorders and Stroke(NIH), the Mayo Clinic
What it is: GBS is considered a syndrome rather than a disease, because the exact disease-causing process is not known. GBS is a disorder where your body’s immune system attacks your body. It can happen at any time in your life, and complications can include paralysis and respiratory failure. Most people who develop GBS need to be hospitalized. While there is no cure for GBS, most patients recover. However, recovery can last anywhere from weeks to a several years, while in some cases residual weakness remains.
What happens: The immune system starts to destroy the myelin sheath that surrounds the axons of many peripheral nerves, or even the axons themselves. This results in inflammation (acute inflammatory lesions), which are present within several days of symptom onset. These lesions slow down the transmission of signals along the nerve. Further studies about nerve conduction may provide a clue to the diagnosis.
Symptoms: While signs and symptoms vary, they can include muscle weakness and tingling sensations (which usually first appear in the hands and feet and progress upwards), less ability to feel, and paralysis. When the respiratory muscles are involved, ventilator support is often required to support respiration.
Who it affects: GBS can affect anyone of any gender, at any time. It is a rare, non-contagious disease, and affects about one in 100,000.
Why it happens: While the cause is unknown, developing GBS is often preceded by a respiratory infection or stomach flu. It is believed that a compromised immune system can trigger GBS. Occasionally, a surgery or vaccination may trigger the onset of GBS.
Treatment: Often patients are treated with plasmapheresis and high doses of IV immunoglobulin therapy, to lessen the severity of the immune response. Physiotherapy treatment in the initial stages is supportive, to help prevent respiratory and musculoskeletal complication. After the initial stage, the role of physiotherapy is to help with rehabilitation.
How physiotherapy can help: Some of the ways that Physiopedia lists how physiotherapy can help GBS patients early in their recovery include to:
- Maintain clear airways
- Prevent lung infection
- Maintain anatomical joint range
- Support joint in functional position to minimize damage or deformity
- Provide psychological support for the patient and relatives
- Positioning to prevent pressure sores and maintain circulation
My story so far with Guillain-Barré Syndrome (GBS)
Rachael answered a few questions about her experience with GBS:
- So what happened?
It’s actually a bit foggy, because we aren’t 100% sure ourselves what caused it. I experienced some initial tingling and pain. The next day, I woke up paralyzed and it got worse from there.
- What is it like to have GBS?
Extremely scary and serious – you know something is wrong, but you don’t know what. Neither did the people around me, so I had a delayed diagnosis and treatment.
- What challenges did you face along the way?
Many people didn’t know what was happening to me. I was told “it was nothing.” Some said that my cerebral palsy (CP) was getting worse. But CP doesn’t get worse overnight; you don’t go from walking to being paralysed so quickly.Another challenge I’ve faced is that there are currently no facilities for people my age, (21 at the time) in Brisbane, Australia. At one point, I was placed in the geriatric rehab ward, where it was difficult for geriatric physicians to handle a case so rare and unique. In Canada, most GBS patients would initially be treated in a neuro ward, then transferred to a rehab facility/ward for the rehab phase.
- What was your experience in geriatric rehabilitation?
Geriatric rehab was mainly full of patients with stroke, Parkinson’s, knee and hip replacements, and occasional back surgery. The youngest patient may have been around 40 and at one point, the oldest was 102! Unfortunately, they didn’t have the equipment or the staff to help with the rehabilitation of such a rare condition like GBS, or for someone so young.
- What steps did you take to get where you are now?
After discharge from the hospital, I went to a spinal cord injury recovery centre. I’ve found this to be the best thing for me.
- What has your experience with physiotherapy been like so far?
The team at Making Strides (Australia) have been amazing. They work with patients who have spinal injuries. My rehab program is similar to one of a quadriplegic; they have the knowledge and skills to help me and I’m very lucky to go there. If that’s what going to get me up and walking again, then it’s worth the investment.
- What goals have you set for yourself so far?
I learned early on that in order to avoid disappointment, I needed to set small goals for myself. So far, just a few of my goals are to:
- Be able to transfer (from one position to another or from bed to chair)
- Get in and out of bed
- (Long term): Stand up unassisted
- (Long term): Walk
Whilst these may seem like small goals, they are actually rather big because of the process involved (not to mention to muscle groups to strengthen).To put this in perspective, my initial goal was just to move anything; even a flicker of movement was a good sign!
- What exercises has your physiotherapist prescribed for you/how has your physio helped?
I need assistance with exercises –for now. We start off a session with passive stretches, followed my upper body work (crunches, triceps extensions) then leg press or standing and cross training; we also use functional electrical stimulation (FES).
Each session can vary, but we do always try to focus on the mentioned exercises, simply because I need to strengthen certain muscle groups before I can progress to more difficult exercises.
- Anything else you think physiotherapists should know about your experience?
My wish is for physiotherapists to continue to let patients like me keep whatever dignity we can during this recovery. It’s embarrassing and frustrating to be reliant on help. I wish there was a facility in Brisbane and that staff had more knowledge and training to help people recover.
- What do you wish people knew more about Guillain-Barre Syndrome?
I wish people would learn to recognise the symptoms and learn how to best treat the condition. I want more GBS awareness so that:
- Symptoms are recognized and tests are done in a timely manner
- People learn how best to support someone through a similar situation
- More research is done into GBS
- More funding and resources are provided for those with GBS
- Areas are more fully accessible for everyone.
I’d like to thank you. Physiotherapy continues to play a major role in helping me get my life back.
Thank you also to:
- Tom, who told me about Making Strides (Australia) and my trainers Genny, Jim, Bec, Jess and Jack
- The practical students who are so eager to learn
- Other clients, especially Peter, who always gives me a quick pep talk
- People like Holly Gerlach, who bravely share their journey to raise awareness
- My parents, family and friends, and in particular my amazing Mum for continuously sacrificing so much for me
- My puppy for never-ending love
As you can see, it has taken a huge group of people (and a puppy!) to encourage and support me to keep going. A lot of people don’t realise that going through a condition like this is far more than just losing the physical ability to do things; it affects every aspect of your life.
And I’m not where I want to be just yet. Here’s a snippet of my progress so far:
Please don’t hesitate to contact me about my experience with GBS; I’ll answer when I can.
- Rachael Watson’s progress so far: https://www.facebook.com/rwatson092/videos/1660518900886051/?theater
- Holly Gerlach: Rebounded from GBS https://www.facebook.com/Holly-Gerlach-161167847340320/
- Guillain-Barré Syndrome Association of NSW: http://www.gbs-cidp-nsw.org.au/
- Guillain-Barré & Associated Inflammatory Neuropathies (GAIN) http://www.gaincharity.org.uk/
- (Canadian) GBS/CIDP Foundation of Canada: http://www.gbs-cidp.org/canada/