Becoming A Quadriplegic, And My Recovery
by Jack Castiglione
“Hello, Aunt Mary. I’m so glad you called. I was wanting to hear from you. How are you?”
“I’m fine, sweetheart, but I’m really concerned about you, Jack. How are you feeling today?”
“Aunt Mary, I need to say something first. If we are talking, and all of a sudden you don’t hear me, just hung up. It would mean that the phone has slipped out from under my chin, and I can’t… “ I started to cry. I couldn’t help it, my whole world was falling apart. I was feeling like my life was fading away to nothingness, feeling all alone, totally helpless. She was silent, just waiting. The emotional release felt good. I composed myself.
“Sorry, Aunt Mary, sorry. But what I was trying to say is that if it seems like I am no longer responding to your voice, it just means that the phone receiver has slipped from under my chin where the nurse placed it. I’m holding it there with my head.” I felt tears welling up in my eyes again, I felt so pathetic, so incapacitated. “I can’t have her stand here and hold the phone while I talk to someone. So just hang up, OK? And I will talk to you tomorrow.”
“I understand, Jack. Don’t worry about it. Do you have any use of your hands at all?”
My back felt kinked up in my bed which had the back raised about a 30-degree incline, so I tried to readjust my body position by trying to scoot my butt more toward the head of the bed, but I just could not move my body, not any part of it. “No, not really. I can’t even press the call button for the nurse. I can touch it, but I don’t have enough strength in my fingers to activate activate the button. I guess with all these monitors connected to me and the video camera eying me constantly, they keep pretty good track of me at the desk. Anyway, the head nurse said she’d have a more sensitive electronic type call button put in later today, so if I can just touch it with my skin, it will call the nurse.” I took a deep breath to exhaust my frustration.
“Honey, I’m praying for you all the time. I don’t know what good it will do.” I can hear her talk with a smile. “God Jack, I think about you day and night. Aunt Virgie lights candles for you every day. You got to know that you will pull through this. I know you will. It’s just going to take time.”
“I know,” I said, not really knowing anything.
“Honey, are you feeling any improvements at all?”
I started to choke up. I tried not to let her hear me, but I had no way to holding the phone away from my face so I could just let it all out unbeknownst to her. In my unsteady voice, I said, “No, Aunt Mary. Actually, I am getting weaker. I had 3 blood cleaning treatments – they are called plasmapheresis – and yet I am still getting weaker.” I was going to explain more to her, but the doctor walked in. “Aunt Mary, I need to go now. The doctor just came in.”
“Ok dear, I love you,” I said that I loved her too and then just let the receiver slip from under my chin to my chest and then down to the bed, next to my right hand.
The doctor, actually one of the teams of neurologists assigned to me, smiled and said hello. I greeted him too and asked him if he would hang up the phone. After doing that, he pulled back the sheet that lightly draped my naked body. I could not wear anything at all, my skin felt tingly and my body had become uncomfortably warm, even though I did not have a fever. Even the bed was a type that had a cooling system to continually cool my body. He went to the foot of the bed and told me to wiggle my toes. I moved them, barely.
He said, rather mechanically, “Good.” Then he checked the motorized device which I have seen on the legs and feet of other non-ambulatory patients who, unlike me, were bedridden with AIDS. It was wrapped around my lower legs so that it would vibrate and squeeze them to keep blood clots from forming in my lower extremities.
He asked me to lift one leg and then the other. I could raise my knees off the mattress only about 3 inches, but my feet could not be lifted. Without exaggeration, my legs felt like they were each encased in a hundred pounds of concrete. Then he gave the same command regarding my arms. I could not lift them. I could drag my hands on the bed, but I was not strong enough to lift them up. He checked the catheter that had been inserted in my upper chest, just below my collar bone. It held the ends of 2 tubes that were routed internally to within millimeters of my heart. Then he scanned the electronic monitors that had leads that were attached to several points on my torso. Satisfied with the status of all equipment “plugged” into me, he started to review and confirm the information on the chart he picked up. “So, Mr. Castiglione, you had three days of plasmapheresis?”
I told him yes. I was transferred to this Fountain Valley hospital in Orange County just four days ago, and the first procedure I underwent was the surgery to place a catheter in my chest. The first morning I was here, they wheeled in a huge machine that looked similar in shape to those bulky, first generation computers auto technicians use to test your car’s smog emissions, but this machine was twice as large. It had lots of dials and digital gauges, and several tubes running in and out of the machine, some that would connect to the catheter in my chest. The function of this machine was to cycle out my blood, clean it and put it back in me. The antibodies in my blood which were quickly eating away at my nerves were causing me to become more and more paralyzed. This plasmapheresis machine was used to remove the antibodies and stop my deterioration.
“Are you feeling any stronger today?” I told the doctor I felt weaker. He looked more concerned; it was obviously not the response he expected from me. I was pretty frightened, feeling like there was not very much of me still functioning, and I was becoming less and less alive by the hour.
I started to daydream myself back 12 days earlier. I was thinking about when I had that cough for a few days. Nothing serious, no congestion, just a low grade, consistent cough. It kept me awake at night so I was not getting much sleep. I felt weak, but that is what one would expect. During the following days the cough never got any worse, but it continued to keep me awake. I felt so exhausted, so tired, and so weak I had trouble walking. My legs felt like rubber. I thought to myself, if only I could sleep, I’d feel so much better and stronger. Finally, I’d had enough and had Doug, my lover, drive me to the nearest emergency room, to get something for my cough, so I could sleep. My beloved life partner had to help me walk, I was so weak from lack of sleep. Well, I didn’t sleep much for over a week; how else would one expect to feel? The doctor examined me and had my chest X-rayed and rather quickly determined that I had bronchitis. He gave me a prescription and sent me home.
The next morning Doug was concerned that I was still in bed when it was time for him to go to work. He is an architect and worked about 40 minutes away. I worked at home but always got up before he did. I told him I would try to sleep more, and not to worry about me. “I’ll be fine,” I told him. It was odd how my weakness was progressing. First, my feet and ankles felt weak, then a few days later my legs felt weak, then my hips had trouble holding up my body. My arms and upper body were fine, and I thought if I only get enough rest, everything would return to normal. A couple of hours later, I decided to get up from my bed, but when I tried, I fell gracelessly onto the floor like the proverbial sack of potatoes. “What the hell!” I thought to myself. I tried to get up on my hands and knees, but now my shoulders didn’t work. I had no shoulder muscles! I tried to get on my knees, but I had no hip or leg muscles. I could not even get myself up off the floor, let alone crawl. I just had no muscle to hold my weight. Now I become terrified. “What is happening to me?” I screamed in my mind. I was laying flat on my belly on the carpeted floor, trying to figure out how I could get to the phone in the kitchen, or if I could even do that. I couldn’t walk, I couldn’t crawl. My arms and hands worked, but that was it. I again struggled to try to get up just enough to somehow move my body to where the phone was. Our household had only one corded phone in the kitchen.
With my body flat on the carpet, I somehow created enough friction to move like a worm, and with the help of my still strong hands, I clawed the carpet, inched by inch, wiggling my body as I pulled it into the kitchen to the area where the phone was. I tried to grab onto the kitchen counter to pull myself up to a standing position, but I was too weak. I could not reach the phone because my shoulders could not lift my arms, but I did manage to grab the phone cord that was hanging down and I pulled the phone on top of me. I called my best friend, Ken, who lived nearby and who happened to be home that morning. Ken already knew I was not feeling well, so he was very concerned when he heard my plea for help. I told him I needed him immediately and then just hung up without waiting for a response. I did the same slithering motions, using my hands as much as possible, to get my body to the front door so I could unlock it for Ken, when he would, hopefully, soon arrive.
I lay there on the floor waiting just inside the front door. I looked at myself, wondering how in the hell I got like this. I always took pride in myself on being a gym-goer. Ever since high school, I routinely visited a gym to do light workouts and sometimes aerobics. I watched what I ate, three times a week I ran seven miles on a treadmill, and I was strong and healthy. I looked again at my flayed-out lifeless form that reminded me of an unconscious drunk sprawled out in a downtown alley, in an overnight stupor. “This isn’t my body!” I mentally ranted. I was looking at someone else, not myself. “This can’t be happening! This is not me. This must be some kind of a nightmare!” All these thoughts and emotions tumbled in my head. Around and around I went, trying to figure out what was happening. My thoughts were interrupted by the long-awaited knock on my door. Actually, Ken arrived in only a few minutes.
“Get me to emergency,” I said, and without exchanging much conversation – we were both so awestruck by my paralysis – he just picked me up, dragged me out to his truck, carefully loaded me in the front seat, and off we went to the same emergency room I had visited last night. After a two- hour wait, I saw a doctor. Just as I started to tell him about my symptoms, that weakness was spreading rapidly from my feet to my shoulders, a male nurse who was standing nearby, and who obviously overheard me, said to the doctor in a low but confident voice, “Guillain Barre Syndrome.” That was all he said.
Words I had never heard before. It is the name of a rare disease also known as GBS. A disease so rare, it affects only about 1 in 100,000 people. A disease that I would eventually, unfortunately, become an expert on from first-hand experience. A disease that would dramatically change my life forever.
So there I came to be in intensive care, being treated for Guillian Barre Syndrome, yet still getting weaker, and now basically paralyzed from the neck down, fading from life.
“Mr. Castiglione, we’re going to continue to give you another two days of plasmapheresis and get this regression stopped. You’ll start to feel better soon.”
“Call me Jack. Okay? What is my prognosis? When will I be able to go home? How long will it take for me to recover?” I was so full of questions. Why did I get Guillain Barre? Would I be able to walk again, or even use my hands? Am I going to be bedridden all my life? Am I going to die?
I was in intensive care for eight days, but not continuously. After about five days, I was moved to a regular room and continued my blood cleaning treatments there. But then I started to have more difficulty breathing. I was lying on my back, using a tremendous effort to draw air into my lungs. I didn’t want to call the nurse, I didn’t want to go back to intensive care or have an air tube put into my throat. I lay there, waiting into the darkest night, monitoring my own ability to breathe. It felt like there was an elephant sitting on my chest. I tried to roll my body over onto my belly thinking it would make it easier to breathe, but I was not strong enough to move that much. I would have to buzz the nurse to turn me over. I tried to turn my body just onto my side, but, again, I could not maneuver my limbs or torso. I remained on my back, just thinking, just hoping my breathing would get easier.
What scared me, even more, was that earlier in the day, one of the doctors noted that certain muscles in my head were getting weaker. My neck muscles were now starting to become affected as well as the muscles that move my eyes, my mouth, and tongue. It was slight, but I could tell that when I spoke that my words were slurred. Would I lose all ability to move? to communicate? to eat or drink? to breathe?
I surrender, I thought. Let the doctors do what they need to do. If I had to be ventilated, I’d be ventilated. I looked for the call button, which was now the type I only had to touch to activate. It was near my right shoulder. I could not lift either hand, but I did manage to move my right arm in such a way that I could touch the call button with my right elbow. The nurse came in immediately and called in a respiratory technician when I told her I was having difficulty breathing.
The technician arrived promptly, carrying a small device to measure lung capacity. He saw the heaviness in my face and mirrored the same look. I told him it was difficult for me to breathe, that I was scared, and that I did not want to be ventilated. He simply said, “Well, let’s have a look,” and had me blow into the device as hard and as long as I could in one breath. His face softened, “One more time.” I exhausted my lungs a second time. Then, “And one more time.” I repeated the exercise. He looked at the reading this time and his face lit up with a big smile. “Well, you’re doing fine. As long as you can move one liter of air, you do not need to be ventilated. And, you are between 2.9 and 3.4. So you’re doing OK.”
I felt relieved, yet still concerned. “But why is it so hard for me to breathe? My chest is sore, my belly is sore, my entire upper body hurts. I feel like there’s a huge weight pressing on my chest whenever I try to take a deep breath.”
“With GBS most of your muscles are not working because your nervous system is so damaged. You might have only 10 percent of your diaphragm muscle actually connected to working nerves. That means it takes 10 times the effort to breathe now. That means that 10 percent of your muscles are doing the work that your entire diaphragm used to do.” He went on to further explain, “In your arms and legs, you might have only 2 or 3 percent of your muscles working. That’s why you can hardly move at all. It’s like you’re paralyzed.”
“Paralyzed,” I repeated in my mind. “Paralyzed from the top of my head to the tips of my toes. Is that who I am becoming?” Wow, he doesn’t have to explain that helpless condition to me. I may not be an expert on GBS, but I certain have learned during these few days what it is like to need to be fed, washed and shaved, to be dependent on someone else to give me water, or let me piss, or even scratch my nose. Just to change my position in bed, I must call for a nurse to move me. And, for the most part, the staff was very nice and very friendly. I even tried not to bother them if my need or discomfort was not great. And, somehow, through these terrible days, I managed to maintain my sense of humor, at least with those staff members who seemed to respond pleasantly to it.
In Search of Hope
I did experience a rather strange night while I was in intensive care. It involved a night shift male nurse who was there on a hospital contract basis. I guess he was a type of “rent-a-nurse” the hospital hires to alleviate the need to, and expense of, hiring regular night staff. When he came in to start his shift at 10 p.m. there were only two of us patients in this ward. We would be the only two to occupy his attention. What was strange about him, was that when he introduced himself, he did it from the doorway of my room, he did not come in to actually see me, to check any of the equipment attached to me, or to ask if I wanted anything. In my brief experience, the nursing staff is always so personal, cheerful, touchy-feely and eager to assist. But his man stayed in the doorway and maintained a rather serious look on his face. Perhaps he had had a bad day.
I wondered if he was bothered when he read my chart, which I’m sure indicated that I was gay, or if he thought I might be HIV-positive, and that that’s why he kept me at an arms-length distance. I did find that my HIV status was of interests to most of my doctors, but none of them treated me standoffishly, they just raised the issue for medical reasons. When a gay man has a rare disease, especially an autoimmune disease such as GBS, doctors first seek to rule out AIDS. Since my GBS journey took me through three hospitals and two-dozen doctors, I have been subjected to six to eight HIV tests, all negative. But, as I suggested, he probably was just having a bad day.
Then he said something that shocked me. He told me, “I won’t be available to attend you for two or three hours because the other patient who I am attending is very ill, and he needs my full attention. So try not to call me.” With that, he left my doorway and walked to the room directly across the way. I could only make out that part of the other patient’s form that I could see through our doorways. I could only see his midsection and his arms. I could not see his head. I noticed very large bandages on his hands, and that his hands were tethered to his bed side rails in a manner that prohibited him from touching his face.
The nurse went into this patient’s room, pulled up a small, hardback chair next to the bed, and held the patient’s hands, trying to keep the man quiet and his arms down to his sides. “Oh my God!” I thought. What has happened to this poor man? Who was he? Why was he all bandaged up like that? His head must be bandaged too! Was he badly burned? Maybe he was a fireman and was severely burned while trying to rescue some child. I remembered seeing on the news last year a story about a police officer or was it a store clerk, who was shot in the face with a shotgun blast. Was it something like that? Could he be a college chemistry professor who mixed the wrong ingredients together and became a victim of an accidental explosion in his classroom? I was so frightened for that poor guy that I began to pray.
“Lord, here I am paralyzed and so helpless, yet that man over there, that precious man, has been terribly injured in some way, perhaps near death. He must be in tremendous pain and discomfort. ” I could see the man moving his arms, trying to reach toward his head. I could not hear clearly, except an occasional, gentle but authoritative instruction from the nurse, “Calm down, now. You must lay still.” And I can see the nurse periodically push the patient’s hands down onto the bed. That compassionate and dedicated nurse would not leave the side of this patient. “Lord, I don’t know who this man is, or what happened to him, but please, Lord, please attend to him. Embrace him. Comfort him, take away his pain and anxiety. Heal him, Lord.”
I was embarrassed to realize that I needed to pee. I did not have a catheter. Since it seemed to be my choice, I opted to have as few tubes and devices as allowed. It may seem unimportant, but I already had the life of a rag doll, and if I had a catheter and bag to collect my urine, it would be one more bodily function I could not control. I had a urine bottle, an old-fashioned, lightweight plastic “thunder jug,” that was hanging on my bed rail. It was empty and ready for use. Except, I couldn’t grab it and lift it up. I could touch it, move it on the rail, but I could not actually lift it up and off the rail. Hell, I couldn’t even grab and lift a pencil.
Normally, I’d just buzz the nurse and she’d take my plastic bottle and place it between my legs, insert my equipment, and I’d just let it go. But, at this moment, dare I selfishly distract this nurse. I could hear the other patient mumbling loudly, almost yelling. It sounded like “What’s this, what’s this!” He must be in shock and in terrible pain. Maybe he is confused and just now realizing he has a lot of tubes and IV’s stuck in him, and he is referring to all that when he yells, “what’s this.” Maybe it is just scaring him. I decided my needs could wait until this nurse makes his rounds and comes to attend me. I could hold my urine for a while. I envisioned the other patient heroically climbing a very tall ladder that was hastily placed against a burning four-story apartment building where there were children crying for help from their bedroom window. I hope he is going to be alright.
Many people in the early stages of GBS are incontinent. I’m glad I was not. Many of them need to be ventilated, I didn’t, at least not yet. GBS can cause a wide range of varying degrees of temporary and permanent damage. I have learned, for example, that movie and television star Andy Griffith had GBS, but only from the knees down. And I have talked to two people who had GBS in the worst way, each of them was so totally devastated by this disease that the only part of their body either could control, was to blink one eye. With one of these two examples, the patient became totally immobile within six hours. It started with tingling in his hands, and six hours later, he could only control the blinking of one eye. In my case, the symptoms started when I first felt weakness in my legs, becoming paralyzed from the neck down in about 14 days. Interesting too, is that doctors now believe that President Franklin D. Roosevelt did not actually have polio, but rather Guillian Barre. Without wanting to oversimplify these dramatic diseases, GBS and polio have two major differences. GBS is more associated with adults than polio is, and GBS is considered totally curable in a relatively short time.
After about another hour, I began to get cramps in my bladder. So I knew it was either disturb the nurse later by having him change my wet bed covers, or disturb him now by having him assist me with the urine bottle. I touched the call button, and he came to my doorway and stopped. He looked pointedly at me and asked, “Yes?”
“I need to go pee.”
“Your bottle is right there on the bed rail.” He pointed to it.
“I know, but I cannot pick it up,” I said. So he came into the room for the first time, picked up my urine bottle and tried to hand it to me.
“I cannot grab it, you’ll need to place it for me, and hold it there while I pee.” He exhibited brief frustration, pulled back my sheet, then seeing me naked he placed the large-mouth bottle between my legs, making sure to scoop my member into the bottle opening, and I finally relieved myself. When finished, he took it to the toilet, flushed it away, washed his hands and quickly left, saying nothing. I wanted to also ask him for some water, but I didn’t have the chance. I soon fell asleep, so I don’t know if he ever checked on me after that.
The next morning I was asked by the regular nursing staff how I had slept the previous night and if I had any problems. I mentioned the behavior of the male nurse, how he asked me not to disturb him, how he needed to give the “patient who was very ill” his constant attention, and my sense that that night nurse felt uncomfortable coming into my room. Her face dropped. She left immediately and returned in a moment with her supervisor to whom I repeated, in more detail, the events of the evening. I then expressed my concern for the burn victim in the room across the way but was not told anything about him. The supervisor leaned over to me and touched me gently on the arm and said flatly, “Jack, that will not happen again. I’ll see to it.”
I did not know what that meant. But that afternoon my regular nurse, a very kind and friendly woman named Heidi, who spoke with a German accent and with whom I kidded a lot and got to know pretty well, filled me in. The other patient was not a fireman seriously burned while saving the lives of children trapped in an apartment blaze. He was a local drunk who approached a driver of a car to ask for money and when the driver refused and drove off, the totally inebriated man stumbled away from the car and fell at a curb and hit his head. He was not burned or seriously injured. When he was brought in he was still drunk and combative, so his hands were wrapped with gauze to prevent him from scratching himself, and they were loosely tied to the bed rails to prevent him from pulling out his one IV. His loudly mumbled, panicky words, “What’s this, what’s this,” was a misinterpretation on my part. What he was actually yelling (for) was “Whiskey, whiskey.”
And, according to Heidi, the “compassionate and dedicated” rent-a-nurse of last night was homophobic, and used the other patient as reason not to have to attend to the needs of a gay man, who, as such (as relayed back to hospital staff then to me in his words) “did not warrant my attention.” Heidi concluded her comments by saying that she thought he would be fired, or at the very least, barred from working in this hospital again.
After my week-and-a-half stay here, which included six sessions of plasmapheresis, I was declared stable. I never lost very much ability to move my neck, mouth, and tongue. And I never had to be ventilated. The blood-cleaning process had worked. It took an extra couple of sessions, but I was now stable. That meant that I had stopped getting worse and I would be switched to a patient recovery program. My new understanding that I would. indeed, recover back to my old self-relieved me of much anxiety and fear. I smiled almost all the time, except during short moments of emotional depression and frustration over my tremendous physical inabilities.
In Search of Light
Upon leaving this hospital and the care of these very fine nurses, I reflected on my predicament. I came to accept that being temporarily disabled was OK with me. I maintained my sense of humor, which is a core value for me. I thought of the unique opportunity I had to experience and learn what it was like to be severely disabled, and how that would give me new insight and sensitivity to others who live with a disability all their lives. I have known people who were disabled and tried to treat them and others compassionately, but what exactly were they going through? How did they manage to get around? Did their friends and families stick with them? How limited were they in their ability to interact with others socially? How did they overcome their physical and emotional obstacles? Could they work or was their condition too limiting? What did they have to relearn?
I was already finding out some of the basics, like how it feels to have to be fed, and dressed, and bathed, and groomed, and turned over in bed. I’ve been told to be careful and patient with myself because my recovery will be a lot of work and that I would face many challenges which may rekindle fear or depression. But I did not think of my “new life” as a dark journey into lifelong paralysis. With GBS, my paralysis, my disability would be only temporary. I began to understand and to believe the mantra of every doctor, every nurse, and every therapist, which was that GBS and all its nightmarish, life-sucking tentacles, would be gone in six to nine months. So, I had the privilege, as it were, to visit my own life as a quadriplegic in all its function-limiting aspects, and in a short while, return home to my fully recovered, healthy body. I would be a better person. What’s that cliché? That which doesn’t kill you, makes you stronger?
I was transferred to a convalescent hospital, where I stayed for 30 days to undergo massive doses of therapy to relearn very basic functions, such as how to feed myself, brush my teeth, button my shirt tie my shoelace and drink from a cup. I had three therapy sessions a day, Monday through Friday. At 7 a.m., I had an occupational therapy session and at 8:30 a.m. and 1 p.m. I had physical therapy sessions. In addition, I had a reduced schedule of therapy on the weekends. Seventeen sessions a week in all. Generally, occupational therapy is working with muscle function in the body from the waist up, and physical therapy is working with the legs, in my case, mainly to teach me how to walk again.
The convalescent hospital in Long Beach, California where I stayed for the month was a nice enough place. All rooms had two occupants. I shared my room with a 92-year-old man named John. I felt out of place because as a convalescent hospital, the average age here was 87. I was jokingly referred to as “that damn teenager.” I liked people to joke with me, and I enjoyed joking with them. I was also referred to as “a feeder” because I had to be fed. In written reports such as my daily charts, I was simply referred to as 32A-GBS, meaning room: 32, bed: A, condition: Guillain Barre Syndrome.
I was informed early on that the patients here were really considered to be permanent residents because they would live here until they died. In fact, I think I was currently the only one here who was just a short term “visitor.” That surprised me. I thought I would have been transferred to a facility where there were people of all ages who had missing limbs, MS, and other conditions and needs such as those people with GBS. Before I arrived here, I envisioned a modern complex with a huge gymnasium full of equipment to strengthen muscles, hot water spa and heated pool for exercising and a facility full of life, vigor, and hope. But in fact, this was more of a medical version of an old folks’ home. The only equipment they had was stacked, or better put, stored, in a large closet, not actually set up for anyone’s use. I never used any of it. Still, I was thankful to be taken care of.
The other thing that surprised me was that I was not offered or allowed to have a neurologist here to visit me. With the rare neurological disease I had, I thought it would have been important to my care to have a proper specialist, but I was told that there is only one doctor available, and he came in only when needed, to see only patients who needed his attention. I saw this doctor only twice. Once when I arrived, and once when I was released. I guess this was one way that my health insurance company, Healthnet, cut back on “unnecessary” expenses. (When I was released from here. I did get a primary care doctor and an assigned neurologist to monitor my condition. My new neurologist was shocked, to say the least, that no neurologist ever checked on me while in the convalescent hospital. There were certain treatments that I should have had during that month long stay.)
My daily routine, or perhaps “daily experience” is more apropos, was that I would wake up each morning about 4:30 a.m.; it just happened naturally to me. I would be in total pain from the waist up, except for my hands. My arms, chest, belly, back, all screamed in pain. I need a pain killer, just one. Even though I was prescribed one every 4 hours as needed, it only took one pill each morning, and I’d be free of pain all day. I never believed in taking medication that I thought was unnecessary. And, too, there is no medication to treat GBS, the body is just to heal itself to the extent that it can. So, if I just got rid of the pain, I’d be fairly comfortable. On one particular morning, a medication nurse who was new to me, refused to give me a pain pill when I woke up. I was nearly in tears from the agony of pain. She said the chart showed that I was scheduled to have it at 5:50 a.m., and it was one hour too early to give it to me. I tried to reason with her, telling her I only needed one each morning when I woke up. But she, speaking in a rude tone, would not allow it. I complained to the head nurse about her, and she was fired that afternoon. Apparently, I was not the only patient to whom she was unreasonable.
Getting back to my daily events, after my morning pill I’d buzz my regular nurse to come in to help me out of bed by lifting my body and guiding me into my wheelchair, which stayed at the side of my bed. I’d then sweet talk her, or him (depending on the nursing shift, I had any one of three nurses assigned to me, one man and two women) into getting me my morning coffee which I always wanted earlier than the regular “kitchen hours.” Most of the nursing staff was great, and I really tried not to bother them unnecessarily.
My first visitor was Thelma, the occupational therapist. She arranged to get here just before breakfast time so she could teach me how to care for myself. Thelma would wheel me into the bathroom, soap up a wash cloth, and help me move it all around my face. Then she’d place my toothpaste-loaded toothbrush in my clumsy hand and, holding my elbow up for stability, I would move the brush around in my mouth. The exercise was not to do these things perfectly, just to start doing them, anyway I could. When breakfast arrived, she watched me rub scrambled eggs all over my face, as I tried to figure out how to hold the folk and how to maneuver it into my mouth. She smiled, as did I, but what can you say, I was a funny mess, I had to learn how to eat, and it was going to take time. After allowing me to struggle a short time, and with my wrist starting to hurt, she took over and fed me. I drank my coffee through a straw without touching the cup. I simply leaned my head over to the cup and grabbed the straw with my lips. Before she left, Thelma would help me back into bed, to rest. I was exhausted.
About an hour later, Mike, the physical therapist, would come into my room. In short, his job was to get me walking using a walker. For the first two weeks, he assisted me in only doing leg exercises. The morning session was initially only about 20 minutes long. Progress was slow. I really had very little muscle mass left. Where I used to have big shoulders, I was more like skin and bones, and when I was able to briefly hold my arm straight out, horizontal to the floor, I had loose skin hanging off my upper arm where I used to have a very nice, fully-mounded bicep and tricep muscle. Gone. Wasted away. I soon developed the habit of not looking in the mirror with my shirt off, and not letting others see my body, if I could help it. What a mess I was. This is going to take a long, long time, I said to myself. After a short rest, I’d sometimes get a nurse to wheel me out to the patio area. I could not wheel myself, my shoulder muscles did not work. I’d see residents and visitors walking around, and I wanted to do that so badly, but I could not stand, not even with assistance. About lunchtime, I’d be anxious for the nurse to return to wheel me back to my room, but I’d just have to wait, hoping I was not forgotten.
Lunchtime usually brought me a visitor. Although Doug came every evening, various friends stopped by during the day and evening, as did members of my family. If my lunch was brought into my room, I’d have them feed me so the nurses could spend more time looking after those who needed more attention than I did. Throughout my stay here, I thought of myself as needing a lot of care from these nurses than the elderly residents did, and that because I was not their typical patient, I was considered by the staff to be more difficult to attend to. It was only toward the very end of my stay that several nurses told me that just the opposite was true. Apparently, nurses fought over providing my care because I was easier to work with, and a lot friendlier than the older residents here. Many of the residents were angry or in a lot of discomfort, some were severely confused with Alzheimer’s disease, and others were just plain uncooperative because they just did not want to be here. At least, I made them laugh, and regularly expressed my appreciation.
After lunch, I’d continue chatting with any visitors I had, but would soon tire, and try to nap. Mike would come in for my afternoon therapy session, and we would repeat the same exercises that we did earlier. I mentioned to him, as I would mention to most staff there, that I was gay. I feel so strongly that gays and lesbians need to just come out of the closet, and let those around them deal with that information. If most of us gay people don’t, and we simply allow others to think we are straight, then society would conclude that there are a lot fewer gays and lesbians out there than there really are. There is, indeed, strength in numbers. I’m not saying that we gays and lesbians need to exist in large numbers in order to warrant equal rights, but it is certainly a lot more difficult for straights to deny rights to a larger segment of the population. And one other point. Most (I think) straight people still do not realize that there are gays and lesbian all around them, at their workplace, in their church, at the recreational and entertainment centers, on the police force and in the military, in their schools, in the court rooms, and in every field of employment, as well as in their very neighborhood. How in the world are they going to know that if we stay in the closet? Some straights think that the only gays there are, are the few silly ones they see on TV. And whose fault is that?
Twice a week, one of my assigned nurses would come into my room to take me to the shower room. He or she would remove my T-shirt and underwear, place a large sheet around me, help me into a shower chair, which is a chair with small wheels and a seat similar to a toilet seat, so it was open on the bottom. I’d be wheeled into a shower stall and my wrap was removed. The nurse would wet me down with a spray hose, then soap me up from head to toe, then rinse me off and dry me off. Several times a week I’d ask to have my face shaved. Looking back on it and my new habit of not wanting to see myself in the mirror, I wish I would have asked for a shave more frequently, as well as to have my hair combed regularly, because, looking back, I must have looked a wreck.
In the late afternoon, I would rest or maybe watch TV. I’d think about Doug coming to see me and reflect frequently on how lucky I was to have him. He usually arrived about dinner time and he would feed me, and we’d watch TV together, into the night. Usually, I’d fall asleep at 9 PM or so, and he’d tiptoe out, hopefully after kissing me good night.
Even though I emotionally wanted to go home, and my insurance company wanted to push me out of this bed as soon as possible for financial reasons, I tried everything I could to stay here as long as I could. I was extremely concerned that if I went home too soon, Doug and other family and friends who I would need for a time to take care of me, would face a very difficult task. And the thing I dreaded most was needing someone to wipe my butt when I went to the bathroom. My wrist muscles were terribly damaged and were strengthening very slowly. I could barely use my hands at all. The insurance company would not provide for in-home care. (Looking back on it, I think I could have required them to do exactly that, but initially, they refused.) So before I went home, I had Doug arrange for various people to come over to attend to me for the first two weeks of my being home. If only I was stronger to do at least my bathroom functions I would not feel quite so helpless. I knew I could ask Doug to assist me in that intimate chore, but how do I ask a niece or a friend to wipe my butt? And is it appropriate to ask?
The End of the Tunnel
On my last day at the convalescent hospital, Doug was there to pack me up and take me home. I said my farewells to the administrative staff and the fine nurses I appreciated so much and even had a nice bouquet of fresh flowers delivered to their station desk. I was in my wheelchair watching Doug collect my things. He was smiling broadly and very happy to finally being taking me home. I mentioned I needed to use the toilet. “Babe, there’s no one else who can help me. You’re it.” I could have called the nurse, but Doug needed to learn what exactly to do. So I wheeled myself into the bathroom adjacent to the toilet. At this point in my recovery, I was able to push myself in the wheelchair for short distances, as well as to stand if I had something to hold onto for support. I grabbed the hand rails next to the toilet and stood. Doug lowered my pants. I then pivoted my body a little and sat down on the toilet. When I had finished my business, I asked Doug to wipe me with a damp paper towel. He used several as I reflected on how difficult and challenging this was going to be for him as well. I pulled myself up to a standing position using the hand rails, then he pulled my pants up. I turned slightly and plunked myself into the wheelchair. “Wow!” I thought to myself. “How in the world are we going to manage this? This is really tough!” He finished grabbing a few more things that the hospital gave me for home use, such as a couple of boxes of wet-wipes, a walker, a toilet seat apparatus that would fit around the toilet at home to make it easier for me to use, and a brand- new wheelchair, which was loaned to me.
We had set up my hospital release to be on a Saturday, so Doug would be with me for the weekend, before needing to return to work. Friends and family members would begin their “babysitting” shifts on Monday. My brother Frank, a carpenter by profession, came over and constructed a large, wooden – and thank God, temporary – wheelchair ramp that allowed me to wheel myself into the sunken family room. And then he constructed a second smaller ramp out the back door so that if I had to leave the house in an emergency, such as a fire, I’d be able to wheel myself away from the building by myself. In addition, he installed some grab bars near one of the toilets and one other in the shower. Saturday evening, an in-home visiting nurse stopped by to check on me, but that was the only time I ever saw her. I really could not figure out her purpose because she did not provide any service.
I woke up Sunday morning in my own bed. Boy was that just great. Doug helped me dress and I used the walker to get to the bathroom. I stared at the toilet and commanded myself, “Jack, you are going to do this all by yourself.” I grabbed the newly installed handrail, struggled to lower my pants, sat on the toilet, did my business, pulled several wet-wipes out of the box, leaned over, and cleaned myself. I did it. My hand and wrist were sore, but I could do this, and it will only get easier from here. Doug put a plastic patio chair in the shower so I could sit while he showered me. He prepared my meals and he (and many kind others) fed me my meal after allowing me a few frustrating minutes to practice this most basic task.
My home-based business which I had for over 20 years would have gone down the tubes if it were not for Ken and Doug running it while I was in the hospital, and the fact that they did a large chunk of that work even after I got home. For three months I had occupational and physical therapists assisting me with all the important exercises to help me get stronger. Therapy was important but not as important as rest and relaxation, and to be free from stress. It was drummed into me over and over again: Rest is the key to recovery.
Where is the Dawn
I was not going to go into the problems I had with my health insurance, but it is difficult to just pass it by since it created so much stress and frustration in my life. But before I mention the problems I had with the insurance company, I must say that I was very fortunate to actually even have health insurance. As I mentioned previously, I have worked out of my home operating a small mail order business. Being self-employed and financially doing only okay all these years did not allow me the “luxury” to buy my own health insurance. But it was not jus the cost, it was mostly the idea that I’d never need it, so why waste all that money. To me, it was like betting against myself, betting that I’d get sick. All during the 1980s and 1990s, I had no coverage at all. I was a self-made man – a Renaissance man – who tended to take care of himself.
As fate would show her wisdom and kindness, it just so happened that Doug’s employer began to offer health insurance coverage which included the families of the employees, and I, as Doug’s domestic partner, was considered as his spouse, and therefore, was also covered as of January 1, 2001. Thank God for the equal rights laws in California protecting gays and lesbians! Here is a perfect example of why gays and lesbians need equality. What a blessing! We had elected to have the plan offered by Healthnet. It was not perfect, but it did cover 80 percent of all hospital bills, and so on. For someone like me who has always looked out for himself, it was like a heavenly intervention that after 20 years of zero insurance, coverage just happens to fall into my lap just five months before the worst medical disaster of my life. Twenty percent would still be more than what I could handle, but maybe I’d only lose my house and nothing more. (Somehow I’d have to work that out with Doug.) So that 80 percent coverage would have been a tremendous blessing. I say “would have,” because fate stepped in again and enhanced her offer, and embraced me even more fully.
Effective on June 1, 2001, just two weeks before I contracted this dreadful GBS, Doug’s employer switched health insurance packages to one that increased my coverage from 80 percent to 100 percent. Wow! They say – I never quite know who “they” is – but, they say that truth is stranger than fiction. What timing, what a relief! I was now totally covered. I’d still have to deal with all the traumatic experiences and challenges of having GBS, but at least I could relax those financial worries. I still had to figure out how I’d earn a living, but I would not have to deal with all these medical bills.
Believe me, I appreciated the coverage; it was a ton of weight off my shoulders. Or so I thought. The horror stories about insurance companies not accepting their responsibility and paying the bills as promised – which we have all heard from people we know or from in-depth news reports – raised its ugly head, and bit me right in the ass. I knew there was something ominous out there, it was a little question regarding my Heathnet approved admission to the hospital. I warned the admissions staff, I warned the social workers at all three hospitals, and I asked others to call Healthnet, to make sure all approvals were in order.
When I arrived at the first emergency room to see a doctor and it was thought at that point that I had GBS, the doctor said I must be admitted immediately. He phoned Healthnet, gave them my health insurance number and asked them who my primary care doctor was. He called that doctor but was not able to reach him directly, so he left an urgent message for him to call back. I simply waited on my curtain-surrounded, emergency room bed with Ken and Doug. Doug arrived after leaving work early to get there to be with me. It took over four hours of wondering and waiting, but then, the curtain was pulled wide open, and the doctor came bounding over to me with a smile. “Your doctor finally responded to my calls and has authorized your admission into this hospital.” Looking at the form in the doctor’s hand, Doug noted that it was the wrong doctor.
“This is not Jack’s current doctor. This is the doctor we had for years, but we recently switched to another doctor,” Doug told him, and we both expressed our concern about the need to do this admission by the book.
“That may be true,” The doctor noted, “But you need to be in intensive care now. You could stop breathing at any moment, and we need you admitted now.” He went on to say, “Both this doctor and your new one are both with Healthnet. This doctor authorized your admission. We really don’t have time to find another doctor. Besides, it is Healthnet who gave me this doctor to contact. Let’s sort all the administrative stuff out later, and let’s get you taken care of now.”
Well, it made sense to me, it made sense to Doug, it made sense to the emergency room doctor, and it made sense to Healthnet now. But would it still make sense to Healthnet in the final analysis, when it really mattered? We all knew Healthnet’s procedure: ONLY one’s primary care doctor has the authority to approve one’s admission into a hospital. But what other reasonable choice did I have? Contact my real primary doctor after I’m wheeled into the hospital morgue? Both doctors work for Healthnet, this can’t be too big of an issue. Can it?
So I was admitted to this first hospital from the emergency room. Then the next day, as required by Healthnet, I was transferred to one of their contract hospitals for treatment in Fountain Valley. After two days in this hospital, when I was in intensive care, I was visited by the hospital social worker. It was a routine visit. I told her about the issue of the wrong primary care doctor authorizing my admission. I asked her to look into it and asked her to talk to a supervisor at Healthnet and explain what happened. She didn’t see any reason for my concern but said she’d call Healthnet to be sure. The next day she reported back to me indicating that everything was fine. She saw my continued look of worry and added, “Jack, Healthnet admitted you, transferred you here, and authorized your treatment, and I have never heard of a health insurance company rescinding their approval.” I said OK, but I was still unsettled.
When I was transferred one more time, this time to the convalescent hospital in Long Beach, I again raised the issue. I asked the social worker there to re-check Healthnet’s approval. And again this social worker said all was in order. About two weeks later, the issue came up again, and still, I was fully covered. But then (yes, dear reader, you are way ahead of me) on the very day of my release, after being there for 30 days, that very same social worker came into my room and said, “Jack, we have a problem.” I blew it. I really blew it! I ranted and yelled, ”How can you tell me that! I have checked over and over again. My partner has checked it again, you have verified everything! The social worker at the other hospital verified everything! Everyone talked to everybody! How in hell can they now say I am not covered!” Boy, was I pissed!
She tried to calm me down. “Jack, I will talk to them again. It wasn’t their final word. Let me go higher up and see what I can do.” I was steaming, crying, angry. My stomach was in knots. First I lose my ability to move, then I lose my ability to survive. What a fucking mess. With GBS, emotional stress is one of the conditions I was supposed to avoid. It can further damage my health. I am supposed to have a quiet, calm, relaxing lifestyle, free of physical or emotional stress in order for nerve re-growth to fully take place.
She came back in about three hours and said that it was difficult to get to someone in charge, they try to route everyone only to lower-level phone staff. She told me she spoke to a supervisor and made my case. “Jack, he just called me back. I think this is all worked out, finally.” She said,” The deal is that the Healthnet group of the doctor who admitted you would cover the bills from the first two hospitals, and the Healthnet group of your actual primary care doctor would cover bills from this convalescent hospital and all future bills attributed to you as a result of your Guillian Barre.” Now I had a definitive plan. Now I could truly relax. Yes! I was covered. I could concentrate on my recovery and forget about the bills. I did ask for a written copy of this “solution” but I was told it was against their policy. Oh well.
While home, I continued to recover, slowly. I tried to relax and not overwork myself, which meant, for me, to limit activities to about an hour and then rest. I thought things were coming along well, but after being home about three months, I was shocked when medical bills started to arrive. I got bills from doctors and hospitals, and for equipment, and for procedures and for ambulances services, and on and on, all marked with a similar decree: “You insurance company has denied this claim. This amount is your responsibility. Please pay promptly.”
We’re looking at over $100,000 here! (And that was back in 2001.) What was I paying insurance premiums for? I talked to Healthnet, the people sending the bills, the person at Doug’s employment assigned to handle insurance disputes, and whoever else would listen. It was that old issue of the “wrong” doctor authorizing my hospital admission. I considered visiting an attorney to file a lawsuit against Healthnet, as well as filing for bankruptcy. I was really freaking out. This was all taken care of! I had trouble eating and sleeping. I know this was bad for my health, and for my chance for a full recovery. Various people told me not to worry, the insurance company will pay it. I complained repeatedly, and even changed my health insurance from Healthnet to Kaiser. The bills continued for two years! Two FULL years of stress and frustration. Two years of battling. And, finally, the bills stopped. The issue was resolved in my favor. Needless to say, Kaiser treated me much better and their system of providing service is far superior to that of Healthnet.
In the midst of getting all these bills, I received more bad news. (Does it ever end?) I was informed by my neurologist after he had completed a one-year analysis of my nervous system, that I would not likely recover much more than I already did. Up until now, putting the bills aside, I had kept my spirits up very well through all my difficult challenges with GBS, mainly because I knew at some point soon, the nightmare of disability would be over. I’d be as good as new, so all the doctors told me. Now, one year after getting GBS when I was to be totally recovered, I am instead told I will be permanently disabled. That was not even discussed with me previously, at any time.
I have since learned that in the United States, GBS is generally thought of as temporary and that full recovery is expected. In Europe, people with GBS are told (generally) that 70 percent of those with it can expect a full recovery, while the remaining 30 percent will have various degrees of remaining disability. In Europe, they more accurately communicate to their patients the fact that there are two types of GBS. In the simplest, non-technical language, the recoverable form of GBS, which is also the most common, is when only (or mainly) the nerve coating, called myelin, is destroyed. The body simply rebuilds this coating and within six months one is back to (near) full recovery. The harsher form is when the nerve core dies in addition to the myelin, and although the body will slowly re-grow some nerves, the prognosis here is that one will be partially or extensively permanently disabled. For a fuller and more technical look at GBS, simply write “Guillain Barre” in any Internet search engine. You’ll get tons of information about it.
The tremendous pain in my upper body that I woke up with each morning subsided in a month or two. You will recall that I mentioned how my body entire upper body would hurt except for my hands? Well, after a couple of months at home, only the palms of my hands and the soles of my feet hurt when touched by others. My upper body no long hurt. This over-sensitivity of my hands and feet to touch continues even to the time of this writing. The other painful problem of cramps started about six months after being home. From that point, continuing to the time of this writing, I would get very painful legs cramps during the night, nearly every night. No medication, vitamins or minerals alleviate these cramps. When I use my hands a lot, such as when I shave, I still get cramps in my hands and arms. When I walk more than I should, I get pains in my calf muscles as well as shin splits. These pains last three or four days. Certain body movements also cause cramps in my torso and neck. But after acknowledging all of this, I must tell you that I no longer think of pain as pain, but rather as an inconvenience that I simply experience from time-to-time. I do not feel debilitated by it at all. The three most crippling effects of GBS that have persisted and which do greatly reduce my quality of life are extreme fatigue, extreme muscle weakness and an extreme reduction in sexual pleasure.
At the time of this writing, I have been living with GBS for nearly three years. I consider myself about 65 percent recovered. I can drive. I can walk unaided for short distances like around the house and yard or into the post office or bank, but if I need to go to a larger store like a home improvement center or a larger supermarket, I need a motorized cart. If I attempt to simply walk through these large places, I’d become so fatigued that I’d be unable to function well for the remainder of that day, and most of the next day. I’d be totally exhausted. If I were to go to an amusement park or travel on vacation, I’d bring my wheelchair with me and have Doug push me to most places. My fingers, hands, and wrists are OK, but they are weak and I am limited in what I can handle in terms of weight and balance. I have no problem cooking dinner and feeding myself, but I have trouble holding things like a large cup of coffee, or a standard dictionary, and typing with all fingers, as I used to do. Handwriting is something I can only do very little of, for after about 50 words it becomes unreadable. When I shower I hang onto grab rails continuously, when I shave I cut myself often, and I still have trouble buttoning buttons. I go to my own gym to do my own therapy only about twice a week because I get so easily fatigued – a condition I am supposed to avoid at all times. I still have a lot of trouble lifting my arms in the air, like when I tried to change a light bulb in a low ceiling. I just could not hold my hands up in the air long enough to take out the old bulb and put in the new bulb. I lack balance and coordination. It’s really too dangerous for me to be on a ladder or to walk down a flight of steps unassisted.
My body cannot stand warm weather very well. I used to enjoy going to Palm Springs, even in the summer time and lying out by the pool for hours. A 100-or-more-degree day did not bother me, it even felt good. Now, when the temperature gets to 90, I not only become uncomfortable, but it is like all my energy just drains away. I become so very tired that I cannot do my work, I just cannot do anything. Even during the winter nights when the house is cool, I sleep with only one blanket, and that is never pulled up above my waist. Prior to GBS, I used to look forward to a cool night so when I went to bed I could wrap myself up like in a cocoon with a sheet, two blankets, and a quilt, and feel so wonderfully cozy and toasty. But the was prior to GBS, not now.
I miss being able to tend our garden; my wrists cannot do even minor weeding for more a few minutes. I miss not walking around the block and taking leisurely strolls with Doug, it’s just too fatiguing. I feel bad that Doug has to do nearly all the housework, as I just sit there watching TV and resting. A few times, I tried to wash dishes or put them away, but after dropping a few I saw the futility in doing it, especially when I chipped our new kitchen sink in the process, not to mention chipping the floor tile. We have traveled a couple of times in the past year, and I missed not being able to walk around and explore new sites. I miss long intimate sexual play which has always been central in my life. I miss not being able to go out in the evening with friends to dinner or to a movie. I do it on rare occasion, but generally, after 7 p.m. it is too easy for me to become overly tired. I try to pace myself in doing all things.
For two years, I fought getting leg braces, but I just recently got some, and they help me tremendously. They make it easier for me to walk. My legs, and in fact, my entire body get less fatigued when I wear them. The only drawback is that if I wear them every day, all day, my legs actually get weaker. So I wear them about half a day. They are super lightweight, plastic and undetectable under my pant leg.
It’s odd to some. I don’t look disabled. I look strong, tanned and healthy. I have reacquired much of my muscle mass, but not much of my muscle strength. If you did not notice the unsteadiness with which I walk, and just saw me standing still, you’d think I’d be able to pick up a 100-pound weight and easily lift it above my head. Sometimes I will ask a stranger for assistance, and their first reaction, I think, is to wonder why I need assistance.
I have come to accept my limitations. I focus on what I can do rather than on what I cannot do. I interact with friends and family during the day more now than in the evening. I have found a new appreciation for the “little things” in life. For instance, when I had been home from the hospital for about two months, and just starting to walk a little unassisted, Doug drove me to the grocery store to allow me some time away from home. I distinctly remember pushing the shopping cart into the vegetable section of the store, over to where the selection of squash was. The cart gave me good support while in the store. I let go of the handle of the cart and took a few steps to the display. I leaned over and picked up a small zucchini, and held it. I was absolutely amazed. My eyes started to tear. What a bitchin’ miracle! There I was, in public, standing unassisted, “firmly” holding a zucchini in my grip. I had not done anything that successfully, that was that challenging, in a long time. I did it. I yelled out to Doug, “Get me a bag.” As he held the plastic bag open, not really understanding what I just did, I proceeded to fill it up with squash. I smiled inside, my whole body smiled. I was going to be OK.
A Letter to My Brothers
Oct. 17, 2011
To Frank and Vince
I dislike telling you guys the details of my medical problems, but I owe you both an explanation why I have not been able to see mom much in the past 6 months, and why I will not be seeing her much in the near future. I don’t want to harp on my disability, but this affects all of us.
In the past 6 months, my GBS (Guillain Barre Syndrome) has been getting worse in some aspects. The information that is widely known and accepted about this disease is not always true. 20 percent of us will never fully recover. After having GBS for two years, I was told that I don’t have the common version of GBS (which means that only my nerve coating was temporarily eaten away by antibodies), but rather I have Acute GBS (which means that the nerve core was also eaten away).
Then, about the five-year mark, it was determined that I will have a constant issue with GBS so I was re-diagnosed with Chronic Acute Guillian Barre.
Now, 11 years and 4 months into GBS, I am feeling that I am very gradually getting weaker and in more pain (over the last 6 months). I underwent further tests last week and was informed by my neurologist that I was getting worse. It’s complicated, but to put it in his words, he says my “… nerves are continuing to grow back, but not in a good way.”
In simplified words, when the human body is so severely damaged as mine, the nervous system regenerates in a shortcut fashion. The neat tree-like limb structure of nerves that we are all born with is not replaced, as such, by the body because it would take years and decades to do that “correctly.” As a matter of self-survival, my nervous system has grown back nerves that crisscrossed and do something called “terminal sprouting” which causes my nerves to touch each other where they are not supposed to. Nerves that were “designed” to connect with, and control, a limited amount of muscle fibers (called motor units) are now struggling to control 10 to 50 times that number of muscle fibers. Plus I have far fewer muscle “motor units” to … say … move my arm, than I had before GBS.
This is why I get tired quickly and have little strength and even less stamina. What is happening more now is that I am increasingly getting muscle spasms and cramps, most commonly in my neck, hands, lower back, legs, and feet. This is due to the nerves growing back in a “bad way.”
I learned last week from my neurologist that I now have a sciatic nerve issue, which is causing a pain in my butt that runs down my left leg. This is the single more debilitating issue I now suffer and it has been going on for months. I have gotten accustomed to the other “issues,” but this is new and I am trying to figure it out and deal with it.
The standard treatment is intravenous immune globulin which is a type of protein (immunoglobulin) that contains healthy antibodies from blood donors. This involves a 10 hours hospital procedure for each of 4 days. A doctor inserts an intravenous (IV) line and injects high doses of immunoglobulin. These doses help block any damaging antibodies in my blood that are there. But since I most likely don’t have GBS antibodies anymore, the main purpose of these infusions would be to just build up my immune system in general. Normally, patients have this done only once. I had one of these treatments when I first got sick and a second one about 4 years ago. Although this is the only medical treatment, its positive effects are not that great, they last only about 3 months. The caution is that this infusion can have terrible side effects for some people. So far, I have not decided to go for this treatment a 3rd time.
Other helps are physical therapy which both help and hurt since I often pull muscles in the process. Stretching the muscles and nerves in my legs every day is the other big help but this causes intense pain to the point that I feel I will vomit or black out. The stretching is done by my chiropractor twice a week and on the other five days, I rely on help from either Doug or Ken. I am expected to do this every day for at least the next months.
Other than physical therapy, I try to do less physical stuff and relax more. Fortunately, my work is 90% done on a computer. The other 10% is what I have difficulty doing.
I consider myself to be very fortunate not to have the continual intense pains or the greater disabilities that some other GBS patients have. I have met people who have no use of their legs or arms, while I have only weakness in my limbs.
I’m glad that what mom has asked me to do for her happens to be what I am best able to do, manage her money and some other financial tasks. These things I do at my computer or at my local bank. Unfortunately, my past habit of seeing mom twice a month and taking her out to lunch each time is no longer an option. I think she should get out more, but I cannot easily get to San Pedro, nor can I now assist her in and out of my car, or in and out of her restaurant seat. I’m even thankful that she does not miss me. She is so involved in her life there at the Villa, that on a couple of my recent visits to treat her out to lunch, she “dismissed” me, telling me to “come back tomorrow.” This after driving an hour to get there. It did not upset me; I was rather glad that she was content living there and focused on her bingo, cards, game shows, and sports games.
I will see her as I can, and I would take her out for lunch, but since Doug has a bad back, I’d have to have Ken with me to help lift her out of her seat. So it is much more difficult now.
Anyway, I felt it important to explain what is going on with me, inasmuch as it affects my ability to visit mom.
UPDATE – February 1, 2017
WOW! It has been a long time and a difficult struggle since I contracted Guillain Barre Syndrome. After 16 years, and some 26 different therapists (over the years), all giving me slightly different advice of how to improve, I received an office evaluation from my Neurologist that I have regained only 50% of my nervous system. He did not see that changing. I did learn one interesting thing that is very helpful. That is, if I work out less, I can gain a little more strength. For years I had been going to the gym and working out about 11 minutes most days. 11 minutes was all the energy I had. And after those 11 minutes, I frequently had difficulty walking out to the parking lot to get in my car. I did notice that on those occasions when I was preoccupied for a week at a time and could not go to the gym, I actually got less tired. And, I noticed that when I skipped a week, I did not lose any strength. That was odd. I now go to the gym only once every 6 days for 16 minutes. I am lifting more weight and getting less tired. Apparently, my body needs five days of rest to recover, after 16 minutes of a workout.
UPDATE – April 20, 2018
This is odd to me. I had been going to a gym starting in my first year of high school, at the age of 16. And, I have been working out almost continuously until 2 months ago, at the age of 70. (How many people you know have done that?) I continue to be more stable the less I work out. This is counter to the advice and guidance of every therapist I have had since 2001 when I contracted GBS. I have decided not to work out at all and see how my body handles it. I still get tired once in awhile, but not as much as I used to. I walk unassisted, drive, and do very limited chores around the apartment. My partner, Doug and I, do travel more, still being careful of my lower energy. I appreciate all his love, assistance and patience over the years. I think I have arrived at the new me.