The Comeback Kid of Neurological Disorders That Everyone Should Be Talking About-
Meet Guillain-Barre Syndrome
by: Kelli Martino
I consider myself a lucky girl. I won the lottery in family and friends but never imagined I’d hit the jackpot with my own mini “famiglia”. I’ve been spared from major injury in a car accident, outran a knife wielding mugger, found my best sport on a fluke, and landed a dream job thanks to fate and good timing. As luck would have it I’m also 1 in 100,000 people to share a rare, neurological disorder called Guillain-Barre Syndrome (GBS). It literally stopped me in my tracks. Guillain-Barre Syndrome can pilfer your body from head to toe and temporarily hijack your ability to move, speak, eat, or even breathe. I’m lucky to have a more moderate case of GBS but in extreme versions we’re talking paralysis and pain with a capital P.
Guillain-Barre is the monster under the bed but the bigger reveal is the Zika Virus lurking in the closet. Did you know that scientific studies have found a correlation between Zika and a recent spike in the number of Guillain-Barre Syndrome cases in Brazil and other South American countries? GBS figures have grown nearly 7 percent in these hardest hit areas, yet it’s as rare to find someone who’s heard of it as the disease itself. Rare should be reserved for how we like our steak or humor, because attached to illness means difficult to identify, treat, or resource. Take it from a girl who fell down a hole of uncertainty for three weeks that a long awaited diagnosis doesn’t guarantee a quick fix. I learned there weren’t any hospitals equipped with Guillain-Barre treatment options in Chester County (hyperventilating), and the closest resource was an hour away in Philadelphia (OMG!). But I’m here to inform and not alarm so that should you encounter GBS, you’ll know there is light at the end of the tunnel.
So what exactly is Guillain-Barre Syndrome? GBS causes your body’s autoimmune system to get confused and go to town on your peripheral nervous system. Once the coating of your nerves (the myelin sheath) gets damaged, it can’t transmit signals as effectively and all hell breaks loose. First signs are usually weakness or tingling in your hands and feet (the furthest away to receive messages from the brain), but GBS is an ascending disorder where paralysis can spread to your core and in some cases even the diaphragm. On and on she goes; where GBS stops nobody knows. You endure this waiting game until your body plateaus at about 4-6 weeks and begins recovery which ranges anywhere from months to years. The good news is that despite the sensory and motor damage, nerves have the ability to regenerate on their own albeit a snail’s pace. You’ll need the patience of Mother Teresa to embrace the slow-mo rebuild and fact that no one knows what causes GBS in the first place.
I’m about 5 months into the Guillain-Barre experience and although fighting a moderate case has been no picnic, it’s the sniffles when compared to full paralysis. I’ve connected with true warriors who’ve been trapped in their bodies unable to speak or move, except blinking their eyes to communicate. A ventilator for life and a food tube for sustenance; the stuff of Stephen King novels. Milder cases such as mine experience numbness but akin to coming out of novocain from a dental visit. I experienced pins and needles in my hands and feet depleting any strength to do basics like cut my food, grip a drinking glass, or walk further than the confinements of my house. I had initially blamed pinched nerves from yoga class as the culprit (dang downward dogs!), but days turned into weeks and each proposed diagnosis came up empty. I could function on my own but had regressed to a toddler.
By week two, I was falling down the rabbit hole at alarming speeds and deteriorating quickly. Pain and numbness intensified, and I was barely able to move. My legs became so heavy and fatigued that it felt like I was walking with an imaginary kid wrapped around each ankle. I could only manage the stairs by my husband heaving me up by the armpits, step by step. I experienced random “zaps” of pain all over my body as if I’d put my finger in an electric socket, and I’d involuntarily “jump out of my skin”. A few overzealous zaps seemed to suspend midair jumps into brief levitation. I was hospitalized for more tests but all theories were again dispelled. I was paralyzed but with fear.
Finally, by week three my doctors had meticulously crossed off all other potential offenders and had an “ah ha” moment. I was a victim of Guillain-Barre Syndrome as confirmed by nerve tests and a spinal tap. Doctors believed I was still a few weeks from being out of danger, the concern being paralysis of my diaphragm. Each day thereafter I’d wake up in a panic until I realized all systems were still go. The longest week of my life culminated in autonomic dysfunction taking away my ability to eat without excruciating pain, but the long fall finally bottomed out. I’m happy to report that after 5 months my new normal is being able to drive, work part time, swim for therapy, and walk 2 miles at a speed that’s closer to my age than my Grandmama’s. My husband is having trouble keeping up with me again, so things are definitely coming back around.
Illness like most adversity gives us two choices- focus on loss, or choose to learn and grow. Guillain-Barre Syndrome continues to teach me that strength isn’t purely in body but also in mind and spirit. Lord knows it took every ounce of mental stubbornness and some yoga breathing to survive the trip down. Twice, I even questioned if I was strong enough to survive this journey; the first when I lost the ability to swallow effectively and was intermittently choking on food or muscle spasms. The second was after the nerves misfired in my esophagus, masquerading as hundreds of tiny spiders crawling inside my throat. I hit rock bottom both times but that butt kicking also motivated, agitated, and riled me up to fight. I wanted my kids to see me do something other than deteriorate. Advocacy would be the call to action, helping take fear out of the GBS equation. Education would in turn provide a faster diagnosis, better recovery outcomes, more resources, and ultimately a cure for GBS sufferers and survivors.
Life will always have those moments where we’re frozen with fear, but we persevere when we keep moving forward. I battle mini relapses that constantly remind me of my temporary physical limitations, but it doesn’t take a 5k race to “walk the walk” and build advocacy. We can raise our voices to in turn raise spirits, hope, and awareness. Them’s fightin’ words! And although Guillain-Barre Syndrome cases are spiking on another continent, it’s in our best interest to be proactive and prepared should it land on our own doorstep. I’m a fan of lady luck but why leave the fate of GBS to chance? Tip the odds in our favor by starting the conversation so that more information, research and support can follow. Education is power and together we can turn the tables on Guillain-Barre Syndrome and stop a paralyzing disease dead in its tracks.
Brief Bio: Urban girl meets small town boy. Marriage, children and the burbs ensue. Parents say alleluia, pigs fly. Occasional sightings of teenagers, hamsters, and parakeets. PR/Marketing gig by day; mom-mobile at night; rare disease fighting crusader 24/7. Goal: Full health recovery celebration summer 2017 with sprint triathlon (ocean swim, bike, run). #keepmovingforward