All about Guillain-Barré syndrome: Ron describes life as a survivor of GBS

Ron Clingin was off on a skiing trip with his daughter in America when - you guessed it!, GBS found him and slowed him up for a while.

"My GBS was, and is, different to all the cases you read about because I wasn’t very sick. My friends and relatives say I must have been sick when I couldn’t walk or even stand, but in truth I had a very mild attack and I feel for the people who had severe GBS. When I visited Dr Roxburgh (neurosurgeon) who was in charge on 30th March I asked him how sick I was, and he said on a scale of 0 – 10 I was about a 4, and that on the day I went into ICU (1st Feb) another man was also admitted and he was still there. That statement was scarey – believe you me!

I arrived at Syracuse, New York State, about November 23rd 2004. My daughter Karen and granddaughter Maddison (6 ½) live at Port Byron, a little old village by what used to be a canal linking two of the lakes. Her husband Bob was, and still is, in Iraq attached to the Army.

I developed a nasty cold which took a couple of weeks to clear, but my throat turned to a strep throat. Karen took me to a clinic adjacent to Auburn hospital. It was staffed by 14 doctors on a rotating basis. I got 6 tablets which cleared up my throat.

On the Sunday, 13 Dec, Karen’s in-laws held an early Christmas dinner and we and lots of others from near and far attended. It was the usual Christmas fare, turkey etc. Some of the others drank beer – not too much, or non alchohic drinks and somebody got a bottle out of the fridge with pink wine like a rose in it. In it was about a glass – it had been there for a while, and gave it to me. It looked alright, wasn’t cloudy, smelled OK and that was the only thing I ate or drank differently to anybody else. We got home and to bed, about 1 and at about 12 I had to rush to the toilet with violent diarrhoea. Back to bed and an hour later the same thing – cleaned my stomach out! I didn’t vomit and more or less felt OK next day. I was a bit weak but OK.

Life went on but I was disappointed with my level of fitness. Christmas and New Year passed. Karen worked as an instructor at the Auburn YMCA 3 mornings a week and Madison was off to school. Sometimes I’d go with Karen and take part in the classes, but I wasn’t very fit and I thought I was. I used to work two days a week as handyman gardener, looking after two houses and lawns on a ten acre block and I know how others used to say how hard I worked and that I’d do more in a day than men half my age. I was proud of my fitness although not in a boastful or show-off way. Never been sick in my life. Usual colds and occasionally flu, but nothing else.

On January 9th we went to a ski slope about an hour away. Karen and Madison are experts but I have never done anything like that. I climbed around the hill and took some photos. Time to go home. We were heading out to the car park and I decided I needed to go to the toilet. I went to walk from the path I was on, to another one about three meters away and slightly lower. The ground was icy but I though ‘No problem”. Other people were doing it. MY feet and whole body slipped out and I landed on my shoulders and the back of my head. I was carrying something in each hand. I was a bit dazed for a moment but got up and carried on. No problems.

Next morning I had pins and needles in my fore-arms and hands, and lower legs and feet. Not very severe. I thought I’d bruised my spine or something.

On the 12th, I was getting unsteady and climbing the stairs at Karens on all fours. We three had booked and paid for a train journey to New York City and 3 nights there, and I was determined to do it. This we did – and had a fabulous time, although I was getting slower and more unsteady. Pain in my upper chest although no unbearable – I can live with it!

We arrived New York on the afternoon of the 13th and home Sunday evening, the 16th, Monday 17th and Tuesday 18th I had pain in my chest – getting quite bad. It was in a wide band all around my upper chest, front back and sides. I still think it is from the fall and why can’t I get in a position that will ease it. Pins and needles and numbness worsen and I can’t get my feet warm. Still below freezing outside both day and night, so what more could I expect. Karen didn’t believe in overheating the house because of the big change when venturing outside. She kept it about 63F on the thermostat. It was OK.

No sleep at all on the night of Tuesday 18th. Karen went to work Wednesday morning and when she came home just after lunch I am not too good. I later heard her tell someone on the phone that I am in severe pain, hyperventilating and not really knowing what is going on, so back to the Auburn clinic. Different doctors – two women, young and keen. They did all the hands-on they can think of, EKG, 7 ex-rays and they can’t find anything wrong. I thought they were going to tell me its all in my mind, and to get over it, but they didn’t. They prescribed tablets for the pain and they worked. I took one every 6 hours and I found that one every 12 hours with Codeine tablets in between made life bearable. They said if I got worse to go to Emergency at Auburn hospital and see about an MRI>

I’m OK on the 23rd, and we are off to another ski slope, I stayed in the lodge and watched. On the way home we stopped for a coffee, and on the way back to the car I fell down about……but no problem. I also had a few falls in Karen’s house but never hurt myself. I learned to hold on to something where possible and when out and about Karen took my arm or I’d use a shopping trolley. Eventually the neighbour gave me an old walking stick which helped.

I was to leave Rochester Saturday 30th January (US time) and arrive here on Monday 31st at Auckland. Anniversary Day. I wanted to keep to schedule to avoid any hassles and also I didn’t want to go in to hospital in the US. Also, the long range weather forecast was fine and cold, whereas the previous weekend all airports across US were closed by snow. Karen rang airports about wheelchairs, and they said it was no problem. She could see that when I got away from her, life would be difficult. All I had to do was ask for a wheelchair and it was supplied with a minder. Excellent service at Chicargo, Los Angeles and Auckland.

I arrived at Auckland at 5.30 a.m. Monday 31st . During the flights, against all advice, I cut my fluid intake drastically because of the problems of going to the toilet. I found I could walk the aisle on the airplane by holding on to the sets. The flight was OK, and I managed to save 5 of the pain tablets.

My son Mervyn took me to his place and his wife Marie had some strong pain tablets. They looked after me. Next day we to my doctor, Kathryn McDonald about 3.45 and I have seen her since and she told me she had a pretty fair idea what my problem was. She is, I didn’t know, 30 or 40, lovely, knowledgeable, and possesses a great big dose of common sense. She rang Auckland hospital and made an appointment to see a neuro-surgeon she knew, if we could make it before 5 p.m. This we did because all the traffic is coming out of Auckland. We found emerbency no mean feat, but didn’t see the person she rang.

After about 10 minutes a young woman saw me and she was clued up. Asked a lot of questions, lots of hands-on, even tested the strength of my sphincter which was a surprise but not embarrassing and after about 20 minutes she said she was organizing some pyjamas and a bed because I’m staying there in IC. OH!! I wish I could remember her name because she knew I had GBS, although she didn’t tell me, and anyway I wouldn’t have been any wiser.

Next day I am started on Immunoglobulin intravenously in my right arm. I have 3 Iv’s in Auckland hospital, one each day. The three days there are a bit of a blur. I have regular medication for the pain in my chest which can be severe. No other pain although this medication could be masking it. Also, more ex0-rays, MRI, ECG, lumbar puncture and EMG. They sure did a lot of tests. I’ve got all the results which don’t mean much to me except that, but for the GBS, I;m in fairly good shape for my 75 years.

After 3 days they can see I’m going to live, so I’m transferred to North Shore hospital and I guess they need the bed. Two more Ivig. One day someone left the packet the stuff came in within my reach so I looked in it, and there is a leaflet saying what the stuff is to be used for and I purloin it and give to to Marie. She gets on the Internet and finds I’ve got GBS and she gets a lot of information which she gives to me. They are concerned because they think I’m going to need months of full timecare. Although by now I can’t even stand I’m not unduly worried. I must have known deep down that I’m going to walk out of here.On the 3rd day Mr Roxburgh called and asked if he could bring some students, about 12 of them. Yes, - why not help to pass the time. As he was walking away I said I suppose I’d better not mention GBS. He swung around quickly and asked where di I hear that, and I said my family got it on the Internet. He said not to believe everything on the Internet. Next day the hospital gave me all the info they have on GBS. So……that’s what I have got. I finally find what the problem is.

I actually enjoyed my time in hospital. I guess I like being fussed over by younger woman. Strangely I always had strength in my hands although no dexterity and I’d get wheeled in to the toilet on a commode and could clutch the grab rail for long enough for someone to slip my pyjamas down and afterwards the same thing to pull them up again.

After about 5 days I was wheeled along to O.T. and started on the process of learning to stand and then walk. About then I asked if I could have my keyboard, and they staff said ‘yes’ so Noel brought it in and set it up beside the bed, and I could swing my legs around and sit on the bed and play it with earphones. I could play it quite well – strange because I can’t do up buttons or my watch strap, and find it difficult to put butter or marmalade on my toast, or to clean my dentures, and yet my fingers go up and down on the keys and I make very few mistakes. I play by ear, and can play 2 ½ hours of easy-listening from the 50’s, 60’s and 70’s. After about 2 days the other patients said they wanted to hear it too, so discarded the earphones and played for them ½ hour or so morning and afternoon. It was good fun. By about the middle of February I am getting around the wards quite good with the =various wheels. Have been cautioned a few times about doing too much, and I said ‘You people worry too much’ and they said ‘You couldn’t believe the amount of writing if someone breaks a limb’ and I’m in a geriatric ward after all – with stroke people and amputees from diabetes. I feel for those people.

The ward was to be refurbished at the end of the month and they are sending home everybody they think can cope, so Margaret and Emma from O.T. bring me home to see if they think I can climb the stairs and look after myself. I am quite confident but they have to go through the motions. The day is a success but they are not sure I can cope in the shower so Emma, a lovely young woman (she’s from Oamaru, here on a few weeks experience), is detailed to assess me. I;m sitting on the stool in a big shower space enjoying the hot water when Emma comes in dressed in gumboots, plastic leggings, plastic coat and gloves. The rest of the staff must have convinced her she had to get in the shower with the old geezer and she wasn’t about to do it in a bikini, so she kitted up for the job. She could see I was coping so she went away and when she came back in normal clothes I was dried and nearly dressed.

Monday 6th. When I first go into hospital my feet feel freezing and they are cold to touch, so I wear two pairs of socks – firstly flight socks, then heavy woolen gumboot socks in bed in the middle of Auckland summer, to try and get them warm. They are also extremely sensitive on the soles. Whey the lady doing the EMG touched the thingy on my feet I nearly leaped off the bed and yelled at her not to do that gain. It was the first time she smiled, perhaps she was having a ‘bad hair day’.

Also, when Mr Roxburgh demonstrated to his students that a key dragged lightly along the foot sole might get a result, I ouched and pulled my foot out of his hand. Also, after a couple of weeks I was outside on the path with some wheels, barefoot, everyone was – it’s the middle of summer, and we used to go to therapy bare foot, when I trod on a small brown leaf off a tree and it hurt like I had trodden on broken glass. They still are a bit sensitive, a bit numb and clumsy. I have a manual Land Rover and I have a job to drive it smoothly because I can’t feel the clutch and accelerator pedals properly. No trouble with the brake, or steering wheel, or gear change, and I drive safely if not smoothly.

A couple of weeks after I came home the sky opened up and all the spoutings overflowed. The rain eased a bit so I got out the step ladder, put on a parka and cleared the down-pipe strainer on the low side. Back in the garage with my parka off I realized my feet are dirty. No problems – I’ll wash them in the tub! I throw my right foot in and my left leg won’t hold me, and ‘A over head’ I go on to the garage floor. I’m OK, lucky my foot didn’t get caught under the taps. Also one day, I try to stand on a chair and my leg gives way. I’m learning the hard way, and I must have good bones.

When I retired from the Railway in 1990, at 60 years old, my wife decided we were going to live in the country so we bought these 16 acres at Kaukapakapa high up with extensive views over the Kaipara harbour and we built our not very big 1 ½ storey, 3 bedroom house with ‘view forever’ as they say. I built the house with help from family and friends. Because I was retired I could work on it full time and after 6 months we moved in – unfinished, but no problem. Val continued to work for a couple of years, traveling to Henderson every day, a distance of some 45 miles. She fenced off about half an acre for lawns, gardens and shrubs and I can look after it all with no problems. I’ve given up paid work so have plenty of time and I do things slowly. I can use the lawn mower if I can get it started because of the lack of strength in my arms. It is heavy and tiring but it something to hold on to and I do about ½ hour at a time when required. I can handle the weed eater , garden tools, secateurs and I can cook and clean. I am getting better at pegging clothes on the line. I am right handed, but my left fingers are stronger than my right. Its not easy to work with the spring clips on trouser hangers.

Please don’t think I am complaining because I am not. I’m just trying to tell it how it is.

My son Noel, estranged from his wife, (I don’t know why and I have learned that if I ask my questions, I’ll be told no lies) – lives with me. He really only comes home late to sleep and seems to eat out. Every second weekend he brings his two-year-old twins boys out. They were two on the 8th May and are a delight and no trouble to me because he looks after them very well.

I am a bit of a loner and not afraid of my own company. Probably comes from 40 years of shift work. Val died on Christmas Day 2003. I knew she was ailing but she admamantly and absolutely refused to go to the doctor, nor would she let me bring a doctor here. On the morning of the 24th I could see she was not good so called the emergency doctor who came within ½ hour and she immediately called the ambulance to take her to North Shore Hospital. She was unconscious, leaving here and never rallied. At 3.20 a.m. her breathing changed and I knew it was the end, and I put my arm around her and held her hand. For some reason I didn’t want her to be frightened and she stopped breathing and died peacefully at. 3.33. I miss her. I think it was 45 years.

I know lots of people. Have two very dear friends who want me to be best man at their wedding. I hope we all live long enough. On the last Saturday of the month I go to the Silverdale RSA with a group from the hospice for dinner and dance. I try to dance with someone my age if she asks. I’m not exactly ‘fleet of foot’ but neither are they, and if we get a bit tangled up we just have to get untangled, stop laughing and try again.

I’m treasurer of the Organ & Keyboard club and we meet twice a month, plus committee meeting. I play soft music for the stroke club for 2 hours Monday mornings while they play indoor bowls and other things. They are a delight to be with, happy and cheerful, live for the day; an inspiration.

Before I went away I joined a group of six men and women my age group, and once or twice a week we go singing at old peoples rest homes, and that can be a lot of fun. With 15 others all strangers, I’m trying to learn Bridge. Welve had 7 lessons so far.

So I have enough activities for the moment.

I’m doing OK, one day at a time. On the 13th it will be six months since the first pins and needles, but I do hope my hands and feet get a bit better.

Not long after I came home I thought I’d go fishing – surf casting. No good! I managed to tie the nylon, but as soon as I got into moving water I felt I was going to fall and had to come out. I was in the Kaipara and I couldn’t handle walking in the mud either. When you are young and fit your muscles, without you knowing it, are continuously working quickly to counteract any tendency to fall. But, after GBS and I suppose old age, gravity is much faster. I have a real struggle to get up off my knees.

I went to the Auckland Easter show on my own and couldn’t handle the people so close to me and had to go back to the car and get my hand crutch. I find one of them better than a stick, and if I know I’m going to be doing a lot of walking, like down the paddock after the cattle, or a shopping mall, I take it with me. I went to the V8’s at Pukekohe with Mervyn and his family and had a good day.

Not long after I came home I put the big weedeater (it is so big it has to be carried on a harness) in the Land Rover and went down to trim the long grass under the electric fences by the dam, because they were shorting out. I couldn’t handle the long grass, or my feet couldn’t, and I sat down a few times and then trying to handle the head and let the nylon out against the spring, I hurt my left thumb, had a wee cry out of frustration, and came home. MY thumb stayed sore for weeks and at the outpatients I asked the Dr if you could bruise a bone. He thought for a moment because I supposed he’d never had a silly question like that before, then he said he supposed you could. I don’t remember anything else unusual.

I went back to Dr McDonald last Friday. She remembered me coming in on crutches and was very interested in my well being. She said that on the day she thought I either had GBS or another dreadful illness – I forget the name - where the nerves unravel, split off like rope fraying. She had the latest data and advised me not to have a flu immunization. She said most of the people I associate with will be immunized and I should be OK. She advised to keep away from cinemas and crowded busses. I don’t go there anyway. I know if I get a bit crook I’ll be taking it easy. I had a cold about a month ago and spent two days in bed – kept incommunicado for a few days. I am in favour of immunization. I remember the polio epidemics. Three of Val’s relatives had polio and she herself had a mark on her throat from a tracheostomy when she had diptheria as a child.

I suppose we are all the same – dread getting GBS again because it might be worse next time. I do hope I get a bit better, but I don’t suppose I’ll ever run again. I’m not happy up the ladder because I am frightened my legs will buckle although actually they never have. The spouting in the high side can wait till next year."

Ron Clingin
New Zealand