Guillian Barre Syndrome (GBS) is a living hell. GBS is different for every person. If you have Guillian Barre Syndrome patience is greatly needed. Your body is going to begin healing at its own pace. Time is your friend. It’s very important not to over do or over stress your Central Nervous System or muscles. The fatigue will set you back a weeks or more. But whatever you don’t give up! Fight like hell to get your function back.
My Humble Beginnings
I started my wellness journey in November of 2006 weighing in at a paltry 450+ pounds. This story has been told many times you can read the rest of my wellness journey here. Today is a different part of that story that has not been shared with my friends and readers. It’s time.
In May of 2010 I was diagnosed with Guillian Barre Syndrome. GBS is a form of temporary paralysis that effects the Central Nervous System (CNS). In addition to causing a severe weakening of the muscles in the arms, hands, legs and torso it can affect pulse, breathing, heart rhythm and blood pressure. I was admitted to the ICU and spent four (4) days there because my pulse, heart rhythm and blood pressure were going crazy. They wouldn’t stabilize. The doctors told my wife Gwen they did not know if I would survive. The paralysis stopped at my diaphragm however it was having spasms. I was very fortunate because many people with GBS are put on ventilators. I had to closely monitor my respiration rates several times daily. Eventually they stabilized enough to move me out of the ICU. GBS kills a small number of those it touches every year. God had other plans for this man!!
I will tell you I was very blessed. I had the slow form and I did not have paralysis of my lungs. I did lose function of my legs and hands and it also greatly affected my autonomic system causing irregular heart rhythm, blood pressure and pulse rates. I almost died. I was in great physical shape before it started and that certainly helped my progress faster I do believe. As soon as I could sit up on my own I had my wife balance me on my exercise bike we had set up in our living room. I just tried to pedal and slowly began the transition of moving my legs. It was a very slow, painful and long process but by asking my muscles to move my brain began to rebuild the meylin sheath quicker because I had placed a demand on them. In a few months, with therapy, I was walking with a walker and by the end of a couple of years walking but with poor balance. During this time I also had to learn how to use my hands and fingers again.
They do not know the exact cause but it is suspiciously tied to a bacterial infection that can come from a particular family of bacteria found on chicken and it can be caused by different viruses. They also know there is a correlation with the ingredients in vaccines and GBS. GBS is the worst experience of my life. It leaves you feeling helpless and hopeless. I had to re-learn to do the simple things we do to live everyday; like walking, ties shoes, eating, buttoning a shirt, bathing, putting clothes on. Hopefully you get the picture. Additionally the pain caused from nerve damage was unbearable at time. I am grateful there are medications that help relieve that pain. I could not have lived with it. It took me three years to recover 95% of my normal functionality. GBS was the biggest battle of my life and I was determined to overcome it! Actually, I was very angry that I had worked so hard to get the weight off, get in great physical shape and then to be robbed of all of it in a 3 week period. I was determined it wasn’t going to keep me down! I am a fighter and it took everything I had and Gods help to overcome GBS. I was not going to sit back and just become a statistic of GBS.
I want to tell you how cycling (greatest form of exercise for total health, just my opinion!) gave me my life back. It started in March of 2012 and was a whopping 1/2 mile bicycle ride! Truthfully I was beyond elated that I could do it. The two years prior was a living hell overcoming a form of temporary paralysis called Guillian Barre Syndrome (GBS). Overcoming obesity was very easy compared to overcoming GBS.
Two Years Later
Gwen and I had bought a couple of run around town bikes a year or so earlier and we rarely took them out to ride around our beautiful little South Carolina town. Our town is small enough to think of it as Mayberry like, very quaint and friendly.
After two years of recovery from GBS I was walking but my strength and balance was still poor. I wanted more from my exercise I wanted more from my body! Prior to GBS I was in great shape and spent a lot of time walking, hiking and exercising at the gym.
I decide to pull the old bike out and see if I could even ride it. I was very nervous because my balance was still not very good. GBS greatly affects the small muscles that are so essential for balance. As I took the bike out of the shed and dusted it off I remember mumbling “Okay Lord here we go, I pray you give me the strength and balance to keep this thing upright!” As I pushed off; picture the first time you remember seeing a little one beginning to ride a bike. I was all over the place, handle bars swaying left and right but I was upright and moving forward. It was struggle to keep the handle bars straight because the GBS left me with some hand tremor and arm weakness but I made it 1/4 mile to the end of the street. I stopped with tears in my eyes and said a thank you to God and turned around and headed home.
I can do this! Yes I can do this!! Something inside me said this is the recipe for my full recovery. I knew that the body adapts to the demands being placed on it. I needed to demand more of the nerves in my arms, hands, legs and feet to improve my condition. If I am not showing my body my nerves need to function better by putting them under demand they are not going to improve as quickly or maybe not as much or not at all. My body need to be told what it needed to fix. Cycling was going to send the message.
I continued riding the bike around town with Gwen at my side. One mile, two miles, three miles. I was ecstatic!! The addiction to cycling was happening. Later that month I bought us both Giant touring bikes and we rode those until I had to have a little more speed. I saw people speeding by us with ease and I wanted to push my body more. As I would mention getting a new bike Gwen would just look at me and smile. She saw my competitive spirit returning and that meant I was healing! I learned to listen to my body. It was not going to recover from exercise like a normal persons would. The recovery process was slower. However, as I continued to build my health slowly, my recovery time got better and better.
Over the past four (4) years I have moved through 4 bicycles upgrading each time to meet my bodies physical improvements! Each year my ability to ride further and tougher routes has increased. In 2015 and 2016 I road my bicycle over 6,000 miles, climbed numerous mountains, did dozens of rides over 60 miles long and even did 5, 100 mile rides. I participated in dozens of charity cycling events. We even participated in a charity event called A Ride to Remember (supports the Alzheimer’s Association) which covers 252 miles across the state of South Carolina in 3 days in the middle of the summer.
Out of the horrific condition called GBS has blossomed a team of more than 40 cyclist that ride together every chance we get. We cover all adult age groups and sectors of life. We focus on peddling our bikes to help others in need. We all share the same passion of cycling and enjoy this great sport. Our team is called Team Vive. We celebrate life and every moment it brings.
Nutrition is also key to overcoming GBS. I was blessed to have a strong background in nutrition as a Nutrition and Health Coach and knew the right supplements and foods to help rebuild my myelin sheath and nerve fibers. A clean healthy diet is important for recovery of GBS. Sleep is essential for recovery and healing. Our body heals when we sleep.
What to avoid
Stress and pushing your body to hard is harmful for your recovery. Process foods and junk foods put toxic chemicals in your body that stress the CNS. DO NOT GET VACCINES! If you doctors tells you to get the flu vaccine or any vaccine please tell them you have had GBS. It can cause a relapse of GBS.
Don’t be alarmed or surprised if you occasionally have GBS flares. They happen for me about once a year and last a month to 6 weeks. A flare is minor symptoms of GBS and fatigue not a complete relapse. They can be scary but just pull back on activity (don’t stop exercising, just reduce it), nourish your body more and get more rest. With GBS its important to listen to your bodies needs.
You are strong, be determined to get you life back, get up and do something about your condition, DO NOT LET YOUR CONDITION DEFINE YOU! You attitude about life ends up telling your life story. Make it a great one!
Please contact me with any question about GBS.
To A Long and Healthy Life!
Wally Bishop C.N.C I.N.H.C.
Nutrition and Health Coach
The contents of the email or written communication are not medical advice and should not be considered as such! This blog is for informational purposes only. Please consult with your physician or health care provider if you have medical issues and before changing your diet or lifestyle or taking herbal or dietary supplements. Never start an exercise program with getting your doctors approval. Never quit taking medications unless advised to do so by your doctor. Only your health care provider, personal physician, or pharmacist can provide you with advice on what is safe and effective for your unique needs.