I wrote this in 2014 so the 17 Years Ago Today relates to 2014.
In 2015 it will be 18 years ago today.
In 2016 it will be 19 years ago today. I am a litter better because of a new drug that I am taking. See UPDATE at the end of the story.
Guillain-Barré, Miller Fisher Syndrome; what I remember.
I joined a MFS Facebook page and for some reason it has motivated me to finally write some of my memories from when I first got sick. I cannot say that my memory is 100% correct but it is as close as I can get it. I broke it down into several post over time. I have made this page to separate it from the rest of the blog and to start with the first blog and go forward in time. Every hospital should have a box next to the desk when you check in that has a sign that states: “Please leave your humility, embarrassment and modesty in this box. We will try to returned them to you when you are discharged.”
It is a little long at almost 6,000 words and not a great story but if you are looking up Guillain-Barré or Miller Fisher Syndrome this is some of what I went through. If you have read it, please leave me a comment even if it is just to say that you read it. I have seen many stories over the past few years and all I can say is I have not seen two that are the same other than the major symptom of paralysis and even the degree of paralysis can vary from person to person. Recovery is the same with some people only needing a few months for an almost total recovery to those who never recover. I don’t really think that everyone recovers 100% but some people come close but it might take a while. A few constants have been everyone has a problem with fatigue, memory and mental focus but for how much and for how long is different for everyone. I know that everyone would like this to be an illness like many others where you can predict with a high degree of certainty what will happen and what to do and what to expect. This just ain’t that type of illness.
It was 17 years ago today, May 28, 1997, that I shot the best target that I ever shot in practice, a 280 – 3X, for our local 22 cal. NRA Gallery Course pistol league. I used my S&W 41, 22 cal. handgun, (using 5 of the now illegal 12 round magazines,) and CCI Standard ammo. In less than 3 days, my life, as I knew it, would end. Part 2 on Sat.
SLOW FIRE TIMED & RAPID
1 X 7 = 3 1 X 7 = 3
1 X 8 = 2 8 X 9 = 8
4 X 9 = 4
TOTAL 9 11
300 – 20 = 280 SCORE
On this day 17 years ago I woke up around 6 am with double vision. Nothing major but noticeable. I remember closing my eyes and shaking my head several times trying to make sure that I was really seeing double and not just still asleep or imagining it. I had spent the last weekend camping with my wife an daughter. We had even splurged and rented a cabin rather than staying in a tent. I had had an upper respiratory infection in the last week or two but nothing major.
I don’t remember if I had anything for breakfast but after the double vision did not go away after several hours, I decided to go to the ER so my wife took me to the Arden Hill Hospital’s ER. The Doctor working that Saturday looked at me and told me he had to call the ophthalmologist. I waited several hours until the ophthalmologist arrived and he told me that he had to call the neurologist. While there was a neurologist on call, he was not in a rush to run down to see me so I had to wait a while longer. Unfortunately for someone else, the neurologist had to come in to declare someone brain dead so the neurologist* stopped by with the ophthalmologist to look at me. After an exam, they both agreed that I had 6th nerve palsy and not to worry, it would go away in a few months. I had spent the whole day at the hospital without eating and it was late before I went home.
When I got home I was feeling a little funny and I attributed that to low blood sugar level. I don’t remember if I ate anything, I must have, I went to bed as soon as I could.
I woke up at 3 AM. I felt like the cartoon where Donald Duck hides behind a large gong and someone hits the gong and Donald vibrates out the back side of the gong. Plus I felt like I had my finger stuck in a wall outlet. I woke up my wife and told her that I was deathly ill and that I had to go to the hospital. We called our babysitter up and dropped off our five year old daughter. I remember my wife and daughter helping me walk to the car. My wife drove to Hackensack University Medical Center in New Jersey and we arrived at 6 AM. My wife went in to ask for a gurney and they said that they did not do that even after my wife told them that I could not walk. They sent a guard out to the car with a wheelchair. At this point I could not walk so the guard had to put me in the wheelchair and rolled me in. I remember a nurse trying to take my temperature with a mouth thermometer, (remember it was 17 years ago,) and I told her that I could not hold it in my mouth. She said that she would have to take it another way and I told her OK. At that point she realized that I was really sick.
I don’t really remember much from the next few days. They put me in isolation for a while and tried to figure out what was wrong with me. I could not walk and was becoming totaly paralyzed with my arms and hand being the last thing to go. I was in a lot, and I mean a lot of pain. It had just started.
* Years later I was looking for a local neurologist and went to see several who live close to me. One of them was the neurologist who had seen me at Arden Hill. I did not remember him or his name but he remembered me. He looked at my history and I got the impression he was mad at me because he told me he was the Doctor from the ER and that he was surprised that I had not come to his office that next week for a follow-up exam.
Not too much has really happened. My doctors still don’t know what is wrong with me. I am in a single room and I am getting much worse. What movement I have is going away and I am in a lot of pain. I am loosing the ability to feel anything. Things are not looking very good at all but I am in so much pain that I am not really worried about what is going to happen. Pain is starting to totally take over everything and dealing with the pain is all I am thinking about. I don’t remember much of what is happening because of the pain. I don’t remember eating anything and I know that I did not eat anything for several weeks.
At some point the doctor gave me an exam where he held up a pen and said “follow this with your eyes,” and he moved the pen back and forth. I moved my head back and forth, my eyes were totally paralyzed.
I think that between Sat. and Wed. I had a brain MRI. They did not have a machine in the hospital so they had to load me into an ambulance and take me one or two blocks away to have the scan done. It was cool and overcast with a slight drizzle. When they took me out of the ambulance we were under a covered area. I asked to be rolled out so that the drizzle could fall on my face. The two guys agreed and rolled me out for a minute or two. I thought that it was the last time I would feel rain. I always remember that moment when I am out in the rain. I am glad that the two guys agreed to my request, I guess they figured, “what could it hurt.”
The reason I remember Wednesday is because on Tuesday my wife had said that she was planning to bring our 5 year old daughter to visit me on Thursday. I told my wife that she had to bring our daughter on Wednesday because at the rate I was going, I did not know if I would be able to see our daughter on Thursday. My daughter’s visit was short and I tried to be the best that I could. My daughter sat on the bed with me and after my wife left the room I told my daughter the normal things and asked her to take care of mom. At this point, I thought that this would be the last time that I would see my daughter.
I have been sick for 5 days.
I have been sick for a week. I am getting worse. I have lost almost all feeling other than pain. I listen to a small radio using ear bud headphones. My wife said that she knew that I was really sick when I did not want to listen to Rush Limbaugh. I got to the point that I could not tell where my small radio was so because I could not feel anything with my hands so I borrowed a hand puppet from my daughter and I put the radio in that. I would find the wire to the head phones and put the wire in my mouth and pull the wire down until I got to the end and then push the ear buds next to my ear. I did not have the dexterity in my hands and fingers to put the ear buds in my ears.
As I got worse I could not push the call button so they taped the call button onto the movable lamp that was on the bed so that the button was about half an inch away from the tip of my nose when no one was in the room. When I needed the nurse I could put my hands in a fist, my fingers were not working, to push the button against my nose. I could not tell if I pushed the button but the door to my room was open so I could hear the buzzer going off at the nurses’ station.
At some point in the last few days the doctors decided that I needed to have a swallow study done, not that I was eating anything, so they sent me to the x-ray lab for a barium swallow study using a fluoroscope. First I swallowed barium, then apple sauce with barium and finally barium with egg salad. I refused to swallow the barium/egg salad mixture.
Someone came in to give me a sponge bath. I asked her if the next time she gave me another sponge bath, could she please use 200 grit sand paper rather than the 80 grit sand paper she had used that time.
The doctors think they know what is wrong with me but as the doctor put it; ” we are still looking for another diagnosis that would allow you to have a better outcome.” (I am glad the doctor was wrong.) I was put on large and heavy IVs of steroids. That was a problem because when the nurse came in to hook me up she told me that I was getting steroids so I should let her know if I got a rash. My wife ask her how I was suppose to know if I had a rash and the nurse said if I saw a rash I should tell the nurse. My wife pointed out that I really could not see at this point so how did the nurse expect me to see the rash. The nurse then said if I felt a rash to tell a nurse and my wife pointed out that I could not feel anything except pain, the nurse just left.
As I get worse I am almost totally consumed with the pain more and more. The pain comes in waves and I have to focus on just staying calm. If something breaks my focus or I have a spike of pain I just loose it and start to sob. Any sensory input gets translated as pain in my brain. Even though I am not moving, somehow the sheets that I am laying on get wrinkles in them and it causes me a lot of pain.
(As best as I can remember.)
Several days ago my wife lost confidence in the doctors and brought in Infectious Disease Control and they finally gave me a diagnosis that will give me a chance to live; Guillain-Barré, Miller Fisher Syndrome. I think what happened was several days ago the head doctor came in to see me and asked me to move my foot and I was able to make a slight movement. The doctor said that I was responsive and my wife went ballistic saying; “What are you talking about? That is the first he has moved all day!”
I am having more pain and my world is shrinking because all I am focusing on is dealing with the pain. All I could do is focus on staying calm, if anything stimulated me I would loose it and start sobbing. I would then have to try to calm back down again. It was the same, calming-sobbing-calming cycle that repeated over an over again.
I had to have a spinal tap to confirm the GB-MFS diagnosis so a doctor came in to give me the spinal tap. The doctor liked to use the sitting position so he draped me over a nurse’s shoulder and stuck the needle in. It was not that bad or at least it was not as bad as I thought that it would be. When he was done, they laid me back down on the bed.
A few hours latter, I don’t know how long because I could not keep track of time at this point, I realized that my right shoulder was hurting. It must have been hurting really bad because I was in so much pain to start off with, it would have taken a high level of pain for me to notice. When the nurse came in she checked me and found out that they had laid me down with a 1 inch roll of medical tape under my right shoulder. (I would not be able to use my right arm very much for the next year because of pain and reduced movement and I ended up having to have an operation 2 1/2 years latter that was not 100% effective. While I now have full movement, I have a constant low level of pain in my right shoulder.)
Today I have been complaining to my wife that something is going wrong with my chest and I am having a hard time breathing. I think that the nurse on duty is the same one that asked me to tell her about the rash so my wife has no confidence in the staff so she is trying to hire a private nurse to sit with me. I don’t think that the nurses are too happy about that. My wife called the doctor to get his advise and he is upset and mad that she is calling him about this and ask her why she is calling him and then ask to speak to the nurse.
At this point I am very very tired and I am having a hard time breathing. My wife hands the nurse the phone and I can hear the nurse saying that I am fine and everything is OK and they, the nurses, are taking care of me. At this point I just decided that I could not breathe anymore so I stopped breathing. All the bells and whistles went off, something I am sure that the doctor could hear over the phone, the nurse stopped talking in mid-sentence and told the doctor, “I have to go.” She hung up on the doctor and called some kind of code. I remember other nurses coming in and one nurse sticking a tube down my throat saying in a panicked voice; “I’m not getting anything, I’m not getting anything,” as she suctioned my throat. As my wife left the room I waved goodby to her with my right hand or at least I thought I did.
That is it, that is all I remember for the next 10 days or so. I was sent to ICU and my wife tells the story that when I went to the ICU she told one of the nurses she was glad that I was being sent to the ICU and the nurses said that she had never heard someone say that they were glad that someone was going to the ICU. My wife replied that she knew that I would be under better care if I was in the ICU.
I would say that my wife probably saved my life. She was at my side as much as she could be and made sure that everyone was doing what they are suppose to do and if not, she did something about it. I think that it is easier on the people who are sick than it is the people who are watching. At a certain point when you are sick, you are so focused on being sick that you are not thinking about what will happen or about the future, even the next hour. You are in so much pain that you cannot think about anything else other than the pain even if you wanted to. Those watching you are upset with what you are going through and the pain you are in and they are also thinking about the future and what will happen to you and they feel helpless.
(As best as I can remember.)
I am at Helen Hayes Hospital in West Haverstraw, NY. I have been here for several days. I woke up a few days ago just before I was transferred from my NJ hospital to Helen Hayes. I remember one thing from one of my last days in the hospital in NJ. I was in my bed with all of the curtains drawn around my bed. I was having a lot of pain from my lower intestines. I had not eaten for many days so all I had in my system was gas. I let out a very large fart. It turns out that my wife was with me and she told me that I can’t do that anymore because I am not in a single room. I am now in a double room and someone else is in the next bed and they have visitors. I tell the people on the other side of the curtain that I apologize but at this point, this is the only pleasure that I have. They laugh.
I don’t remember leaving the hospital in NJ or the trip up to Helen Hayes. I do remember arriving and getting out of the ambulance on a gurney and that’s about it for the next few days. The only other thing I remember is being in a room with 6 other people and being in a lot of pain. The pain was focused in my back where I had a back operation, L5-S1, three years earlier. I remember my doctor came in at 2 AM to see me and they packed me in ice. Also, at some point I had also developed Bell’s palsy on the left side of my face so I had problems talking, drinking and eating though I still don’t remember eating anything at this point.
I stayed in the room for several days but because of all of the noise in the room that kept waking me up and the fact that they had another person who had GB come in for rehab, they decided to put us together in a double. The other person with GB was already in the other room when they poured me into a wheelchair and rolled me into the room. I knew he had GB but he did not know that I had MFS. (What follows is a guy one-upmanship joke.) When they rolled me into the room the other guy introduced himself and told me that he had a rare disease called Guillain-Barré and had been paralyzed and gave me a few details. I waited for him to finish and with a patch over my eye and in my Bell’s palsy mumble stated, “Guillain-Barré, I know all about it. I have the rare form.”
We got along OK as roommates with his girlfriend bringing us KFC when she came to visit. He left Helen Hayes about a week before I did and did quite well in recovery. He was going on his normal morning jog a month after leaving Helen Hayes, his main complaint being the tingling in his feet. He had had the classic foot pain where he could not even stand the sheets touching his feet.
One thing that we shared was our morning heparin shots. For those who don’t know, we got our shots in the morning in our stomach to prevent blood clots. Really not as bad as it sounds, a very small shot with the smallest needle I have ever see. That being said, it was still something that we did not look forward to. Because we had GB we got to sleep as late as we wanted to. The nurses would normally come in around 7:30 AM to see if we were up. If we were not up, the nurses would keep peeking in until we were up and then the nurse would come in to give us our shot. Normally both of us were awake by about 6:30 AM or so but we would play possum when the nurses came in, that is until around 8:30 AM. By then the anticipation would become too much for us and we would buzz the nurse to come in and give us our shots and get it over with. He took his shot sitting up, I preferred my laying down.
While I did not look forward to the shots, I preferred them to the compression bags I had on my legs when I was in the NJ hospital. The bags would inflate and deflate and squeeze my legs so that the blood would be forced out of my legs and help me from getting a blood clot. You can’t imagine how painful that was and I still can’t believe that I was ever able to sleep with those things on. It was very noisy with the compressor pumping up the bags and loud hiss when a valve released the air in the bags.
After I was in the double room at Helen Hayes for a few days, I started hearing something that sort of sounded like someone on the other side of my room’s wall had the same compression bags as I had. About the same time I was fitted with a wheelchair and they started letting me roam the halls as exercise. My first excursion was to go to the next room to see who had the compression bags. When I went to the other side of the wall I found out that it was a hallway and not a room so I realized that the noise was coming from me. When I told the nurses and doctor they thought I was having a mental problem but I kept insisting and finally I figured out that I was hearing arterial sounds from the blood vessels in my left ear. The noise was loud and would even wake me up but fortunately the problem only lasted a few weeks.
Helen Hayes was a great place for rehab and they had a great pool. It was warm, very large and had many levels with a one foot different between adjoining levels. They would wheel me to a lift powered by a garden hose in my wheelchair and transfer me to the lift and then they would lower me into the water. I started off in the 5’ section with foam noodles under my arms with the goal of walking across the width of the pool. As I improved, I moved up to the 4’ section, then 3’ then 2’ section so more and more of my weight would be held by my legs.
Helen Hayes also had a car with triple controls, steering, gas and brake, so I was able to take a driving test the day before I left Helen Hayes so I could drive a few miles to rehab when I got back home. I still had double vision and so I had a patch over one of my eyes and I also had tremors and was very weak but somehow I passed with a graduation prize of being able to go through the local KFC drive through to pick up some chicken. It was obvious from the KFC person’s reaction when they handed me the bag of chicken that this was the first time they had seen this done.
Helen Hayes is very close to the Hudson River and I remember that on the July 4 weekend, getting in my wheelchair and going to the end of the wing so that I could look up the Hudson River and see several towns’ fireworks off in the distance.
I stayed in Helen Hayes a month and then the insurance ran out. I was still in a wheelchair when I came home and I could walk up and down the stairs with my wife’s help. Just before I got sick I had finished a 2nd bath with a shower with a seat in our basement so with the help of my wife I could go to the basement and sit down and take a shower.
I cannot describe how hard all of this was on my wife and even my 5 year old daughter. In some ways my illness was worse on them than it was for me. I was too sick to worry but they worried and felt helpless. Don’t discount how much suffering this illness causes those around us.
I have been home for 16 days. (I looked at my medical history and it looks like I came home from Helen Hayes on 7/11/97.) Helen Hayes let me come home for the weekend before I was discharged as a trial and so I could see what I would have to deal with at home and make any adjustment. I came home in a wheelchair and will keep it for over a month but I can walk short distances with help or holding on to something. We live in a raised ranch so that means the shower that I can sit down in is on the lower level so my wife has to help me up and down the steps and has to stay with me while I am in the shower for the first few weeks. I have started to go to rehab a few miles away and we live in a fairly rural area so I did not have to deal with much traffic. I am still wearing my eye patch and I will use it for another month or two. I also still have my Bell’s Palsy but it is getting better. I will go to PT & OT for three months until my insurance runs out. I will get 3 months of Physical Therapy each year from my insurance company for the next three years. I still have tremors and weakness and fatigue is a major problem as will be the pain that I continue to have. Sometimes my legs feel like they are being crushed and it sometimes brings me to tears. I have problems with my memory and concentration. I also have muscle-twitching or muscle fasciculation as each individual nerve reconnects to a muscle group and goes into spasm, dozens or more all over at the same time. Not painful but annoying especially on my face and eyebrows, enough so they wake me up sometimes. Most of the time you can’t see them but when they are on the surface you can.
I am improving slowly. Over the next 6 months I will move from the wheelchair to a walker to two walking canes then one walking cane with 3 feet to a regular cane then nothing. My feet tend to drag so when I walk I have to focus on picking my toes up or I will drag my foot and my toes will catch and I will trip. It will be another 6 years before I can get a regular part time job. I did do some work in the meantime. I worked for the US Census and collected Census information and I did work for the local Board of Elections. I still had problems with my memory and I ended up having to get my first cell phone because I was dropping off Census forms and forgot to go home and take my daughter off the bus from elementary school. She went to the next door neighbors so it was not really a big problem but it was a very big deal. I also worked on my house some and finished the basement.
Some other memories
When I was in the hospital and they were still trying to figure out what was wrong with me they decided to send me to a lab on another floor for a test. My wife was with me and when we got to the lab we found out that I was going to be required to sit a desk, look at a computer screen and push a button when I saw something on the screen. My wife pointed out how absurd the test was because I was on a gurney, unable to sit up, use my hands or use my paralyzed eyes to look at the screen. She went ballistic when she looked at the chart and they had put down that I was “uncooperative” and insisted that the chart be changed.
In rehab if you wanted to hang out and talk to someone, you had to go outside where the smokers gathered. Smoking was limited to a small area outside of the hospital and it was really bizarre to see someone smoking who was in rehab because they just lost a foot, leg, fingers or hand to blood circulation problems caused by diabetes. (As an x-smoker all I can say is “what more would it take to motivate you to quit smoking?” I quit when I was filling cigarette vending machines so it was not easy for me but I did it cold turkey.) I remember one person confined to a slanted bed who was totally paralyzed and had to have someone else light the cigarette, put it in his mouth, keep track to take it out to knock off the ash and finally put it out. Many times I would feel guilty because even though I was in a wheelchair, I knew that I would be able to get out and many of the people at rehab would never get out of a bed, much less a wheelchair. (And the associated daily medical procedures that go along with total paralysis that most people can’t even imagine.)
The rehab was OK and the people were great and made sure that I did not over do anything. I was able to “go with the flow” for most of rehab and I always try to be a low maintenance patient and I think that I always try to have a good attitude when pain allows but it is normal to be upset and even get depressed when going through a major life change and challenge like GB/MFS. The thing that got me in rehab was the exercise where you take empty paper yarn cones and stack, unstack and restack them.
Don’t expect to go through all of this without some emotional challenges no matter how good your outlook. You will have to adjust and accept what has happened and how you have changed. It is hard to have someone look at you and to them you look OK but your legs are killing you, you have tingling in some part of your body, and you are so tired you want to go to just go lay down. What happens to each person is different and it ranges from those that get over it in a very short period of time and don’t have any long term problems to those who don’t make it. Andy Griffith had GB in April 1983 where he was paralyzed from his knees down but still went on to produce and star in Matlock in 1986. I saw an interview with him where he said that he was still wearing leg braces and it drove the sound guys crazy because when he walked they would creak.
The End, Almost
Just keep in mind all the stress that this puts on the people around you. Don’t get upset at yourself if you can’t do something that you used to do or want to do. Don’t get upset if those around you don’t understand why you can’t do something that you used to do or want to do.
I hate stairs. I have more pain with each step I take. I can walk up a slope and only have a little pain but stairs kill me. I hate having blood drawn for blood gases.
I was told to avoid any operations. That was two kidney, one shoulder, one knee operation and one bowel resection caused by perforation from Diverticulitis after I had two bouts of Peritonitis ago. I also had Benign Prostatic Hyperplasia caused by an infection, Sleep Apnea that resolved after a year, and I was diagnosed with Normal pressure hydrocephalus that went away without treatment or was a misdiagnosis. Last but not least, I got bit by a coyote so I ended up getting a rabies shots. (They were not a problem and did not hurt when given the way they do now, in your shoulder.) Still no relapse.
After 17 years all of the main problems have gone away. (OK, so I lied,) I still have to deal with the fatigue, some memory and focus problems, pain in my legs when standing still and walking up stairs, my eyes are still a little off but not enough for me to notice except when I get tired and then it is harder for my eyes to focus. When I am tired I have to focus on keeping my toes up when I walk. My face still droops on my left side from the Bell’s Palsy but most people don’t notice it. My recovery has come in waves, better for 6 months then I stop improving and even get a little worse for a few months then I start improving again. Now I am getting so old, I will be 65 in September 2015, that I don’t know what problems are from the GB/MFS or just getting old. At this point, I don’t think that it really matters.
Several years ago, in September of 2012, I was having so much of a problem with fatigue, memory and focus, I had to quit my part time job even though I was only working 5 hours a day, four days a week. At the time, I was told by one doctor that he thought that I had Normal Pressure Hydrocephalus but I would have to wait 6 months to have another MRI to confirm the brain damage. I don’t know why or how but a few months after I quit my job I started to get better and I never went back for the follow up MRI. At the last meeting that I had with Doctor who said that I had NPH, I had told him that I was going to wait the 6 months to have a follow up MRI. His parting words were; “Call me when you become incontinent.” I have not called him yet.
UPDATE 5/31/2016: I started taking Baclofen; (Brand Names: Lioresal, Lioresal Intrathecal, Gablofen,) several months ago at a very low dose of 10 to 20 MG a day. It has eliminated the crushing feeling in my legs and the small muscle spasms that I was having. I am also sleeping better and not waking up because of leg pain. It is normally given to people with MS in the 40-80 MG dosage a day. I still “vibrate” so I can’t shoot as well as I would like. I can’t hold the sights still.