In the spring of year since 2010 I reflect inward and look back on the hardest journey of my life, I faced death but God had more plans for my journey. It is important to me to share this in hope that someone who is affected by a life challenge may gain strength and inspiration to continue to fight for their mental, emotional and physical health. There are many people with much worse conditions than mine and have much more powerful stories of triumph. This is my story. Please never give up!
Many that know me do not know this part of my life. I do not talk about it much because it was incredibly hard to face possible death and paralysis. During this event I tried to pretend it wasn’t happening. I did not want to believe I was losing my ability to function. I had just gotten my health back and now to be knocked down was devastating.
I told my wife (Gwen) she couldn’t tell anyone and if they found out to say it wasn’t a big deal. We were both afraid that I would not make it through the next few hours … We fought this war together, Gwen by my side all the way. The doctors quietly told her I might die that night. She stayed all night in the ICU waiting room in and out checking on me. When I was awake she would kiss my head and tell me You Got This!!..God’s not done with us yet! It was effecting my heart, blood pressure and pulse. It looked very dim at this point of what was going to unfold over the next hours, days, and weeks. I was strong, a fighter, defiant and wasn’t about to believe what they were saying.
As a preface to this true story, you need to know I had lost 230 pounds, reversed diabetes and many other adverse health conditions and was living life on top of the world physically and emotionally before this event. For over two decades I was a prisoner to obesity and I had finally gotten my life back. Only to have it jerked out from under me.
In May of 2010 I was diagnosed with Guillain Barre Syndrome (GBS). 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 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. I was in great physical shape before it started and I do believe that certainly helped prevent my death and allowed me to heal faster. As soon as I could sit up on my own and had enough strength return to my hands arms and fingers ….then came the long hard battle to learn how to walk again and all at the same time. From wheelchair to walker and we would walk together in the local church parking lot to get outside in fresh air, build more strength and walk further for longer periods of time then it was to the park and as I was getting stronger I needed more. I had Gwen 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 year walking but with poor balance. Still during all this time I continued working on my hands and fingers relearning how to use them . It was a long very painful journey and worth every struggle I had to face.
Causes of GBS
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. It can also happen after a stomach or respiratory infection.
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 that pain. Today I am medication free.
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, the support and love from my wife Gwen and Gods help to overcome GBS. I was not going to sit back and just become a statistic of GBS.
Two Years Later
We 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.
With some excitement, 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.
Gwen and I continued riding the bike around town. 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.
Even today I still have lingering effects from GBS. I have hand tremors, at time very bad and sometimes it is just a small amount. I have consistent burning and tingling in my hands and feet. The best way to describe what I feel 95% of the time, imagine having gloves filled with sand up to your elbows and socks filled with sand up to the top of your ankles that’s how my hands, arms and feet feel. For unknown reasons sometimes that grit feeling …turns to a burning sensation. At time my balance is off and I run into walls as a turn a corner in a hall way. In some miraculous way it doesn’t happen on my bicycle!
My body has a vibration sensation 100% of the time. It is the same feeling you would get sitting in a chair with built in massage but it follows you everywhere. I have a very high pitched shrill noise in my ears 24/7. At times when I go to sleep, as soon as I close my eyes I have bright flashes of light. It is very much like watching a dim fire works display. To top it off my muscles do not recover from intense exercise like a normal person would. Because of the damaged muscle nerve fibers it effects muscle power and repair. Even with this I am blessed. I can still move, I can exercise, I can work, I can do most things. I praise God everyday for all things!
If you are or have battled GBS the following information may be important for you.
What worked for me may not work for you. We are all biologically unique. But have faith that a recovery will happen. Always get your doctors approval before starting any new supplements or lifestyle routines.
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 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. The pain medication I had to take had bad side effects and one was constipation. Exercise also helps stimulate bowel movements.
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 coloring from your diet as is 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.
IF YOU HAVE HAD GBS PLEASE THINK VERY HARD BEFORE GETTING VACCINES! If your 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. This is information my doctor gave me.
Do not push your self to hard. I learned the hard way that doing too much to soon will set you back. Take your recovery in baby steps.
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! Your attitude about your life ends up telling your life story. Make it a great one!
I hope for you a long and healthy life!
Wally Bishop C.N.C I.N.H.C. C.I.C.P
Nutrition and Health Coach
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