This is my story of overcoming Guillian Barre Syndrome.
What worked for me may not work for you. We are all biologically unique. Have faith that a recovery will happen. Always check with your doctor before making any changes to your diet or lifestyle.
Guillian Barre Syndrome (GBS) is a living hell and 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. Whatever you don’t give up!
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 in the Cardiac Care Unit 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 I do believe that certainly helped me heal faster. As soon as I could sit up on my own and hand enough strength return to my hands and arms 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 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 myelin 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 of GBS 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 connection with the ingredients in vaccines and GBS.
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 work 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 needed 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.
Each year my ability to ride further and tougher routes has increased. In 2015, 2016 and 2017 I have ridden my bicycle over 6,000 miles each year, climbed numerous mountains, did dozens of rides over 60 miles long and even did 10, 100 mile rides over those 3 years. 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 (4 times).
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.
If you have battled GBS the following information is important.
What worked for me may not work for you. We are all biologically unique. But have faith that a recovery will happen.
Nutrition
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. B Vitamins (particularly B1, B3, B6 and B12), Omega 3, 6 & 9 fatty acids, Vitamin C, Vitamin E and the minerals zinc (should always take a little copper with zinc), and magnesium are important to help heal. There are other nutrients as well that I was taking which are key. Borage oil, Alpha lipoic acid and Phosphatidylcholine in the form of lecithin. The myelin sheath is 80% fat and 20% protein so these fatty acids are important in repairing it. The nutrients in our diet are those building blocks. Before taking any supplements check with your doctor and do your own research. There are many studies proving certain nutrients help repair the myelin sheath. I have a list of those nutrients if you want them.
Exercise
Exercise is important when you are in the healing phase. Be careful not to overdo it. Pace your self and allow time for naps and rest. Everyone heals at a different pace. Be patient with your progress. Trying to exercise the effected muscles lets the brain know that they need to be fixed. The body has many ways to monitor when things are working or not. I know if you do not try to move them they will not heal. Just as if you sit instead of moving, muscles will atrophy because it gets the message that you don’t need them. Exercise such as strength training and cardio is equally important. Until I could go outside I had a course inside my house that I used the walker to exercise with. My wife was so supportive. Exercise also helps stimulate bowel movements.
Sleep
Sleep is also essential for recovery and healing. Our body builds muscle, repairs tissues and organs, restores supplies of hormones, enzymes, neurotransmitter compounds, immune system compounds and heals when we sleep. However, it takes building blocks (nutrition) to do this work. Sleep is your friend. If you are tired rest, nap and get long deep sleep everyday until you feel more energy.
What to avoid
Eliminate as many artificial sweeteners and food colorings as possible. Try to limit or eliminate as much processed food as possible. They are full of unnatural chemicals that overload the immune system. With GBS your immune system is already out of balance. Processed foods stress the digestive system and immune system. Toxic processed foods, stress, lack of sleep and exercising your body to much is harmful for your recovery. Process foods and junk foods put toxic chemicals in your body that stress the CNS.
PLEASE THINK VERY HARD BEFORE GETTING 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.
Do not push your self to hard. I learned the hard way that doing too much to soon will set you back. This is where the patience is important. Take your recovery in baby steps.
GBS Flares
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. Flares can be scary, 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. If you feel a relapse happening seek medical attention immediately.
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
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