Miraculous Recovery from GBS
by Neal Lebar (President of ICS Shoes)
This story is told through my eyes as my wife’s Caregiver. I cannot imagine the acute pain that GBS patients endure even though I was with My Wife every step of the way. It is hard to know for sure what it was that propelled her to an amazing recovery. The one common response we received from her Doctors was, “every person is affected differently, and we cannot tell you how she will recover.” Before she was discharged from in-patient rehab, all her Doctors, PT’s, and OT’s gushed, “we have never seen anyone recover so quickly – she’s our Rock Star, a Miracle.” My intent of telling her story is for people to believe there is Hope they too can make a full recovery. One of the most compelling issues was that My Wife Always maintained an incredibly positive attitude. As you will see below, she was committed to “putting in the work – doing what it takes”, and it paid off more than we could have ever imagined.
Prior to being diagnosed with GBS, My Wife (59 yrs. old) had a highly active lifestyle. She was a daily practitioner of yoga, gardened, hiked, biked, and took long walks. She had never worked out at a gym or lifted weights. She had an extremely healthy diet that was reflected in her weight and blood work. Her blood pressure and resting heart rate were also in the normal range, even for someone much younger. She took pride in being lean, living without any health issues and not taking any medication.
My Wife’s GBS diagnoses changed everything as she found herself paralyzed from the neck down. Since GBS is a rare disorder, it was not immediately diagnosed, and she experienced several days of acute pain. She spent more than 15 hours in the Emergency Room of the Hospital, literally climbing the walls in excruciating pain. It took three trips to the ER and ME telling the Dr.’s what her diagnosis was before she could get admitted. For several days she was in ICU under heavy sedation as the Dr’s tried in earnest to relieve her pain. She was immediately administered IVIG treatments over a 5-day period. After 3 days in ICU, she was moved to the Neurology floor of the hospital. At this point, she was paralyzed from the neck down and experienced paralysis on one side of her face. She was in immense pain and my daily routine was to gently massage her from head to toe. As I was massaging her back, she would insist that I massage her biceps, then tell me, “oh my calves are on fire… then my hips.” Over a 4-hour period I switched back and forth, trying to help relieve her pain. The massaging was a daily routine that I did throughout her stay in the hospital. The Doctors scheduled her to be moved to rehab once the IVIG treatment was completed. She was really looking forward to getting into rehab. However, once the IVIG was completed, her condition went downhill and immediately moved back to ICU. Her condition deteriorated so quickly as she could no longer breath on her own and was placed on a Respirator. The Doctors immediately started the Plasma treatment, which lasted for 7 days, while she was Intubated. After the Respirator was removed, she was able to breath on her own and moved back to the Neurology floor. The Plasma treatment seemed to help as she began getting small movements in her arms and legs. One week later she was transferred to the hospital’s in-patient rehab floor. At this point, she still could not sit up and had no strength in her arms or legs. She had now been hospitalized for 24 days.
Due to COVID, I was the only person allowed to see My Wife. Although the hospital rules are for one person – one hour a day, the nurses saw how I was helping my wife and never told me to leave. I would get to the hospital at 1pm and stay till 6pm. Because of COVID the hospital was understaffed and most of the nurses were very thankful that I was there and attending to all her needs. After all, she literally could not move and needed help with everything – brushing her hair, feeding, washing her hands and face, toothbrushing, and eating. When she was moved to Rehab, they had to move her in the bed since she could not sit up in a wheelchair.
Everything changed once she was moved to Rehab. They had her scheduled for PT & OT for 3 hours a day. She was so exhausted and had to take naps in between the sessions. After the first day of rehab, she told me, “I’m going to tell them that I just cannot do what they are asking me to do, it’s impossible.” I gently told her, “you need to let go and put yourself in their hands – trust them – they know what they’re doing. Tell them how you feel but never say, NO I can’t - Try you best and never ever give up.” This was the turning point in her recovery… she let go.
Every day I would see significant improvement. They had to hoist her up in a corset like device to teach her to walk again, hours of fine motor skill therapy, lifting weights (1lb was all she could lift), stretching, learning to slide from her bed to the wheelchair, sitting up on the side of the bed, etc. By the end of the first week, she was able to stand for a few minutes, then using a parallel bar, able to slowly walk a few steps. One day she would wake up and find that she could bend her leg or lift her arm… every day there was progress. On the weekends she would get into a wheelchair and try to wheel herself around the floor.
Throughout her entire hospitalization I told her several times a day, “you are going to make a full recovery!” Every day, as I left, I would say, “you’re another day closer to full recovery… everyday you are getting better.” My Wife is loved by so many people I built a Support Network around us. Everyone wanted an update – daily. So, I started sending email updates every few days… I had over 70 families on my email list. Our children had several other people they were updating. We had people doing Zoom prayer sessions… others did Reiki, thoughts, prayers, vibrations… whatever worked. We had hundreds of people pulling for My Wife every day. Everyone asked what they could do, and I asked everyone to send cards – posters and received over 100 cards, blankets, and even clothes from her sisters. One of our sons took off for the rest of the year to come down and help me… he would cook for me, help with our business – anything I needed. I never realized the emotional stress I was undergoing as the Caregiver until my son arrived to take care of ME! I was literally falling apart – alone with all the weight on my shoulders. I could not have gotten through this without our family and friends helping to prop me up. While she was on the Respirator, I would put the phone to her ear and have our children, mother-in-law, and her best friends tell her how much they loved her and tell her, “you are going to make a full recovery.” She would hear those words several times a day… people would write letters of encouragement… 5-10 cards a day would arrive, and I would read them to her. She felt connected and loved by so many people… it helped her to keep pushing through and staying connected.
In rehab she had her own room that I decorated with all the cards, posters, pictures of friends and family. Nurses and Doctors would come into her room and say, “I’ve never seen anyone do that… it’s absolutely beautiful.” My Wife looked at all the cards and would say, “these are all my angels, looking over me – helping me.”
After 3 weeks at in-patient rehab, My Wife was discharged. She had been hospitalized for 50 days. She could barely walk using a walker and had little strength in her arms or legs. The next week she started out-patient rehab at the same hospital. After a week of out-patient rehab it became clear that she needed much more physical therapy – twice a week for one hour was not enough. We added a few things to our home gym and planned the next step.
I am 68 years old and have lived a highly active life. I run, lift weights, exercise with resistance bands, play tennis, stretch daily, bike ride, hike, and practice yoga… every day I spend at least an hour pushing myself. Throughout my life I have been highly active and experienced many injuries. I have logged many hours of Physical Therapy and learned that with the proper therapy and hard work, the body will heal itself in most cases. That has always worked for me and I believed it would work for My Wife. The other issue we were facing was that due to Covid, she could not go to a gym or be around other people… I was IT!
I designed a program to rebuild My Wife’s strength by working out daily. I thought it was essential that I worked out with her, so she could see the proper form and as a method of motivation. Prior to this, My Wife had Never worked out with weights or resistance bands. Even though My Wife and I have practiced Yoga for 40+ years, she could only do a few yoga poses – they were too difficult for her. Here is what we did:
• Stretching: This is the first thing we do Every morning – even now. When My Wife began, she had no range of motion and could not raise her arms or bend her legs very much. Her muscles were like Jell-O. In order to exercise, it was essential that the first order of business was getting her to Stretch – increasing her range of motion… rotating her arms in circles and lifting them up. Her neck was very tight and needed to loosen up her rotation. We needed to stretch her legs – hamstrings – glutes – hips. We have a routine that we do together every morning, which is a workout in itself. Every day she would gain more flexibility – strength. This only takes about 30 minutes a day and is essential to her recovery and continued therapy.
• Treadmill: We bought a treadmill so My Wife could start walking. I encouraged her to walk slowly every day, even if it was for just 5 minutes. She would put it at the lowest setting, hold onto the side rails and lumber through. It was extremely hard at first, but she powered through. This really helped her legs to gain strength and mobility.
• Walking: We would take walks using her walker, as far as she could go. Most days it was just down the block but every day she would gain better balance and strength.
After just one week of our daily routine, My Wife stopped using the walker and moved to a Cane. She continued to stretch, walk on the treadmill, and walk in our neighborhood – daily.
Now that My Wife was getting more range of motion and stronger, I started her on this strength exercise program three days a week:
• Stretching: We do this every day… shoulders, neck, legs, and hips.
• Yoga: As My Wife got stronger, she was able to do more and more yoga poses.
• Weightlifting & Resistance band exercises: We would alternate the days for these exercises. When we started out, My Wife could only lift 2lb dumbbells.
o Weightlifting: This is the toughest workout, that results in big gains of strength. The first thing we do are Squats – we hold onto a horizontal bar or it can be done by opening a door and holding onto each knob to give us balance and form. We started out with 10 squats and increased them as time went on. I outlined 2 sets of 4 exercises for the shoulders, arms, and legs. It was amazing how fast she regained her strength from the weightlifting.
o Resistance Bands: The nice thing about this type of exercise is, it hits different parts of the muscles in the shoulders, arms, and legs. I found a routine on-line that gave us a thorough workout. We only need to do this for one set as we are totally spent - soaking wet at the end.
After the second week of integrating the weightlifting and resistance bands, My Wife got rid of the Cane… she was now walking completely / independently on her own. We continued to do all the weightlifting and resistance exercises three times a week and stretching every day.
By the 6th week of our exercise program, My Wife was ready to ride her bike. We took it slow and only rode a short distance, making sure she was comfortable getting on and off. From the beginning of our exercise program, we targeted that once she could ride her bike, she had made a Full Recovery!
By the 8th week of our program, My Wife’s strength and endurance improved dramatically. She was now lifting 10lb weights, increased the tension (doubled it) of the resistance bands, and taking much longer bike rides. She was continuing with the daily stretching and started walking much faster on the Treadmill. She also ramped up her Yoga routines and was able to do everything she had done before getting GBS.
One Hundred days after being diagnosed with GBS, My Wife had fully recovered, and was stronger than she had ever been.
Four months after being diagnosed we took at 3-hour bike ride and hike. She continues to Stretch daily, workout with weights, resistance bands, and Yoga.
Shortly after being discharged from the hospital, her Doctors took her off all medications. Her only issue is neuropathy in her feet which continues to improve.
Was this a Miracle? There were many factors that played into her recovery including:
• Very Positive attitude throughout
• Her health prior to GBS diagnosis
• Fantastic care from the hospital
• Plasma Treatment
• Daily massage and tending to her every need
• Many friends and family praying for her daily
• The many pictures, cards and letters from her Angels surrounding her
• Letting go and trusting her doctors & therapists
• In-Patient Physical Therapy 3 hours a day
• Our daily workout regimen
• Commitment to working extremely hard and doing whatever it takes
As I was leaving the hospital rehab center one day, I saw this written on the wall:
Miracles happen every day,
Change your perception of
What a miracle is and
You'll see them all around you.
By JON BON JOVI
Please feel free to email me with any of your questions…
Stay Strong - Keep the Faith - Never Give Up!,
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