Interesting trip
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Since I am always ragging on people with bad backs, shoulders,etc., I just had to report on my latest trip. 10 days ago I started having back pains. After suffering over the weekend, I decided it was time to go to the doctor. A reutine check of the blood pressure showed 185/130, or pre explosion levels. A trip to the emergency room, ekg, cat scan and blood tests showed no heart issues. So armed with muscle relaxer, pain pills and blood preasure medicene, I was sent home. That’s when things really started to get interesting.
Along with the back pain, I was having tingling and numbness in my fingers and toes. By wednesday, I was having some trouble walking and the numbness had progressed to my hands and feet. Thursday comes and things are going down hill fast. I can barely walk and head back to the doctor. We go though a bunch of strength tests. Then he says, “this isn’t good, I think I’ll send you to the neurologist.”
Neurologist goes though the same strength tests. Seems I have good core strength but I’m rapidly losing arm and leg strength. “You are going to the Hospital”, which happens to be Mease Countryside, right next door. Simple enough, we’ll just walk over. Next thing I know, I’ve collapsed in the driveway.
The virdict, I have Guillian-Barre Syndrome, a rare disease in which your immune system attacks your nervous system. Well, since Thursday I have not been able to stand and can barely hold anything with my hands. Friday was an intersting day, spinal tap, electoneurology tests, breathing test (it can eventually affect your breathing), cathater inserted in my jugular vein, topped with a filtering of my entire blood supply.
Fortunately, catching it this early its rarely fatal, but they will be filtering my whole blood supply 4 more times over the next 8 days. Well needless to say, probably will not be fishing this weakend, so catch something for me and, if you are so inclined, say a little prayer.
_________________As my grandmother used to say a lot, Bob, “Lord, have mercy.”
I will certainly be remembering you in prayer this week. Please keep us informed as you are able.
Scott
Goodness, Bob – I had the same thought as Carter and hadn’t even opened this message until this evening.
Well I chose one heck of a subject for my first posting here so you’ll have to forgive me if this comes off as being about me and not the OP. I am certainly not trying to turn this subject away from Bob Riggins and what he is going through but more to address the debilitating effects of Guillain Barre’ Syndrome and hope that everyone will understand the trip Bob is really going through.
First let me offer Bob my prayers and best wishes for his recovery but I’m not going to add the word speedy since from my own experience it is anything but. Just to set the record straight though I would not change the experience of going through GBS for anything since it really made me much stronger in many ways that I can’t even begin to explain them to do the experience justice and I hope Bob finds that strength within himself as he progresses and wins.
I was working in Scotland in May of 1987 as part of a group doing an overhaul on a nuclear submarine there. My longest work day was 23 hours and my shortest 16 hours, 7 days a week. About 3 weeks into the job I started feeling odd, loss of concentration, vertigo, loss of strength and the continued feeling the barge I was working on was moving, I attributed this to long work days, short rest, not eating regular and that everyone around me was coming down with what the locals call The Crud, a sort of flu like thing most of the crew had. Needless to say I just kept doing my job albeit not always easy to do as I found I was easily tired or lost my focus something foreign to me.
I was working on a power distribution panel and was having a lost moment so I thought I’d pull my hands out of the panel and let my head settle before making a big mistake with live electricity, I noted the time was 1300 on my watch. I sat there trying to reason through the job I had in front of me to help me refocus so I could finish what I was doing and after what I thought had been 10 minutes felt ready to continue but noticed my hands were shaking pretty badly so I set them down in my lap and looked out over the loch we were tied up in. I looked at my watch and was very surprised to see it was 1415 and that more than an hour had passed since I pulled my hands out of the control cabinet. I secured my job and decided I should find my way to the crews lounge and get a drink and while only 2 decks down from where I was it took me nearly 20 minutes to get there and I was totally exhausted.
The next thing I knew I was being asked if I was OK to which I replied that I just needed a few minutes and a drink and I’d be fine, it was one of my co-workers who stopped by where I had been working to see if I completed the job only to find I had not actually done anything which he found odd and even odder that I was not at my work site and after waiting nearly 45 minutes and I still didn’t show up decided to look for me. I told him I was there until 1415 and came here to get a drink, a quick look at my watch had me stunned it was now 1730 and I had no idea where 3 hours had gone.
I tried to get up and fell back into my seat like a ton of bricks with excruciating pain in my legs and arms, my co-worker told me to sit there while he got the supervisor. The supervisor came and spoke with me for a few moments and told me to take the next day off and if I didn’t come around to see the Dr. that we had under contract in Dunoon.
Took the next day off and found I did not want to get out of bed but voices told me that I had to, not another person mind you but from inside my head, I was told to take a walk and when I did I would collapse and fall asleep. I did manage 2 meals though and went into work the following day which the supervisor cut short to 12 hours and told me to head back to the hotel. I managed the next 3 days in this manner but felt more exhausted each day and I was told to see the Dr. the next day since what I had was obviously not The Crud that everyone was getting and before it got worse they wanted me seen by the Dr.
I managed to get there the next day but I’d be less than honest if I said it was easy since it took a herculean effort to do so. When the Dr. saw me she put me through some physical tests and then some motor muscular tests which I nearly passed out while doing. When I could once again focus she told me she believed I was suffering from vestibular neuronitis and that if several days rest in bed did not bring me around they may need to ship me back home to the US to see my own physician.
After several days in bed I was no better off than I had been when I last saw the Dr. so the site manager listed me as medically unable to perform my duties and made the decision to send me home. This was really the toughest thing I had ever had to hear anyone say since my wife was a mere 10 days away from coming over where she would spend the next 3 weeks when I would complete the job I was sent to do and we were to spend 2 weeks traveling Scotland, Ireland and Britain which we had paid for upfront and telling her I was being sent home was not easy.
I have very little clear memory of the flight from London to Boston nor the bus ride from Boston to Newington NH where my wife picked me up. The hardest thing was that physically there is no outward sign of my being ill which was difficult for my wife. I had an appointment to see my Dr. in 2 days and when I went to see him and he ordered some blood work and other tests to help with his diagnosis I did bring the charts the Dr. in Scotland had provided with me. Once the lab work came back it showed high enzymes and other things which my Dr. felt pointed toward GBS and made an appointment to have me see a neurologist rather than digging deeper on his own.
Reading what Bob wrote in part 2 of his journey I must say that medicine has come a long way since my diagnosis in June 1987 as there were no blood procedures as he speaks about although some of the other things I vaguely remember. I do remember the EEG the neurologist performed though as it came right about at the threshold of my illness, i.e. pretty much the turning point where you start to rebound.
The neurologist told me my therapy and journey would be difficult since I was different. He explained that 99.9% of the world population could be classified as being left or right brained and the remaining 0.01% were called Left-Right or Right-Left brained. Of the L-R, R-L population 99.9% were such and the remaining 0.01% were classified as Handshake which was what I am. What this meant was that for a right or left brained individual they would reach a certain point where their motor muscular functions would shut down from fatigue, many would endure total loss of motor muscular memory needing to relearn how to walk, talk and various other motor muscular functions which had become automatic to them. My case would be different since neither side of my brain would relinquish control and allow this collapse making my rehabilitation longer.
As I said earlier physically I looked, and acted, as if nothing was wrong with me which made my wife question my actually being ill. Then my world changed with the arrival of debilitation, i.e. semi paralysis, not constant but in spurts lasting minutes to hours always with severe pain in my upper legs and arms and the ability to speak clearly was diminished as well, once this manifested itself any questions my wife had, and the questions I had going through my own mind, were set aside as I knew then how ill I really was.
Rehabilitation was very slow, I would go through stages and hit walls, there was depression, despair, anxiety and some physical damage which we did not know if they would be permanent or rehabilitate as time and my body allowed. What became clear was that I had to be patient, I had to help my family be patient to help me as well. This is probably the best advice I can offer you Bob and that is be patient and tell your family when you need their patience because you will and with their help, understanding, love, guidance and patience you will win the fight this journey presents you with.
Learn to take joy in the winning of the small battles and don’t face defeat of the ones you’re not winning, the day will come when those defeats will turn to joy as they are just another small battle behind you. Don’t be afraid to ask questions of your Dr. or to get assistance from the various GBS Support Groups that are on the internet, it will do much for you to know that you will not face your challenges alone, as a side note Joseph Heller, author of Catch-22 and television star, Andy Griffith have both had GBS.
I returned to work in late October of 1987 part time with caution and had a relapse in late December which is not all that uncommon, this was not said to frighten you but to remind you to take things slowly and just because your strength feels solid your endurance may still be weak since your immunity system takes a gigantic hit from GBS. I finally returned to work in April 1988 for good.
Things that were permanently damaged were my thyroid (I take medication daily), my blood pressure (again medication daily) I suffered a hearing loss (I now wear hearing aids) and I still have residuals, fatigue brings them on. I was also cautioned to never take a flu shot or to have a spinal which may cause GBS to come out of dormancy but reading your second post has me wondering if things have changed although when I had knee surgery in 2003 and was originally told I’d have a spinal I told them I once had GBS and they said that I would be sedated instead.
I realize I have written a short novel and hope that I haven’t made this sound bleak, it’s not, but it isn’t an easy journey but you have no choice but to take it. If I can help in any way just pipe in even if it’s that you don’t want to hear anything, believe me I’ll understand. I also wrote a little piece which I host on my website but since I’ve been so long winded already I won’t take up any more space here but leave the link, it’s called
Sante,
Thank you for the wonderful post. Your description of GBS and the symptoms you incurred are very insightful and should help Bob and others better understand the process. You are an inspiration to us all. My wife is a therapist and she has listened to your podcast a few times and got the idea to incorporate people’s hobby’s/sport’s interests into her rehab planning through your experience with bamboo fly rods.
Bob, we are all thinking of you and wish you the best in your recovery. Keep us posted.
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