‘Gordon was diagnosed with GBS in 2015 at the age of 68. This is his personal reflection on the life changes he has undergone and the challenges he still faces. He is trying to be honest!’
“Don’t slurp, Granddad!”
The hospital ward was in semi-darkness, only the blueish hue of the night lights enabled
me to make out the shapes of the other beds and medical paraphernalia. My field of vision
was small. I could just move my head but the rest of my body was immobile as though
weighed down by blankets of lead. I tried to send a signal to my legs to move just a little but
they would not respond. It was as though they did not belong to me anymore. I wanted to
raise my arms above the sheets because I was so hot but they would not move either. I
could hear the sounds of nurses doing whatever they do at night when patients are
supposed to be asleep – footsteps, rustlings, hushed voices. What was I doing here? How
did I get here?
How it started
The fish were not biting. They seemed very sleepy that morning, a little bit like me. I was
quite pleased in a way because it was pleasant to relax beside the lake after recovering
from my recent bout of food poisoning following a weekend in Dublin. It was obvious to me
that the Guinness had not done its job in combating the infection as on returning to
England I had to spend some days in the Queens Medical Centre because of severe
dehydration. The sun was now starting to warm my face and it was good to be out in the
fresh air on this lovely Friday morning at the end of May. The reflections of the trees in the
lake seemed to create another upside-down world. I remembered that one time at this very
spot it had been so peaceful that a robin had landed on the end of my fishing rod, as if
just to say ’Hello’. A buzz. The bite detector. A twitch of the rod. I strike and it is clear that I
am into a significant fish. I let it run a little under tension then slowly and gently play it in,
the rod bending and jerking as though it had a life of its own. The flash of large scales in the
murky brown water reveals a decent mirror carp. As I bend with the landing net I feel
slightly dizzy but think nothing of it. The fish is not huge but nevertheless a very good
specimen weighing in at just over nine pounds. I pause a moment to admire the shiny
bronze skin interspersed with large silver scales and reflect that all being well this fish will
outlive me. I unhook it and gently return it to the water where it swims off with a swish of
its tail leaving small whirlpools and eddies in its wake.
The activity has shaken me from my reverie and I go through the process of baiting up and
casting to my chosen spot. As I cast, standing close to the edge of the water (I am not one
of these fishermen who seem to be able to do everything sitting down) I feel that slight
dizziness come over me again so I stand back, not wishing to fall in! I had not even had
one nip from my hip flask. Again, I take no notice of the feeling as I assume that it is
residual weakness following the food poisoning so I open my flask, pour myself a coffee,
add a drop from the hip flask, dunk a shortbread biscuit and hope that the sugar will do its
job. It seems to. As the day goes on the fish, like me, wake up a little bit and I end the day
with a catch of eighteen fish, but none as big as the first.
I went home very happy with my day in time to catch a doctor’s appointment for a check up
following the food poisoning and in advance of a holiday to Menorca scheduled for
Monday. I mentioned the dizziness to the doctor, but he felt that it was a residual effect of
the food poisoning. So, to plagiarise Private Eye, er… nothing to worry about there then.
I awoke on Saturday morning with the main task of the day being to sort out my holiday
clothes (trying to resist the significant pressure that shorts and T-shirts must match or have
some vague affinity with one another!) and various gadgetry ready for our trip to Menorca.
On descending the stairs I was aware of a strange sensation in my legs and feet. My feet,
as though operating independently from my body, did not want to place themselves
effectively on each of the stair treads. It was almost as though I was slightly drunk
(although that is a condition I would have to imagine!) and was losing a little control of my
legs. I was on antibiotics so I dug out the documentation from the packaging and ploughed
my way through the plethora of potential problems and side-effects. About two thirds of the
way through the list I pounced on one which said ‘muscle weakness’ and I assumed that
my experience coming down the stairs was the result of a side-effect of the antibiotics. I
decided I would not take any more. By the end of the day I was ready for my holiday with
batteries charged, camera at the ready, Kindle loaded with books, snorkel dug out of the
garage and with my case virtually packed.
That evening we were due to go to some friends for meal. They had a series of steps
leading up to the front door and as I started to climb them I felt very unsteady and needed
to take the arm of my wife, Linda, in order to ensure that I reached the door safely. This
was somewhat unnerving as I had expected the effects of the antibiotics to have started
working out of my system by this time. We talked about our visit to Dublin and the food
poisoning, but as the meal went on I started to experience slight difficulty with handling my
knife and fork, not enough to make it obvious to anyone else, but enough to start causing
me slight concern. At the end of the meal, as we were descending the steps to the car, I
again felt the need for some support as my legs were decidedly wobbly. I knew this was
not the effect of the wine as I had only had one glass because I was driving.
On Sunday morning I knew that there was something seriously wrong. I managed to
shower and get dressed, how I am not sure, but the only way I could negotiate the stairs
was on my bottom, sliding down like a two-year-old. I could just about walk around the
house, lurching from bannister to doorway to wall to chair like a slow-motion pinball. Two
years previously I had experienced a minor accident on my motorbike in Copenhagen so
in the garage I had, courtesy of the Danish health service, a pair of crutches. Linda dug
these out, dusted them down and I was mobile again.
Whilst eating my breakfast I became further aware that my hands were starting to lose some of their dexterity and I was becoming even clumsier than usual. I struggled to spread the butter on my toast and digging out the marmalade from the jar required more dexterity than I could muster. By
lunchtime we decided that we needed some professional advice on my developing
condition so we turned up at the NHS walk-in, or should I say hobble-in, centre in
Nottingham. I was duly prodded, poked and scraped and the doctor came to the
conclusion that my weakness was probably due to the antibiotics but that it could be
caused by a condition called Guillain-Barre Syndrome (GBS), but as that was so rare it
was highly unlikely. He recommended that if the condition had not improved by Monday
morning we should go to our own GP.
That night we were due to go to another set of friends for yet another meal. No steps this
time. The crutches got me into the house but I realised during the meal that my physical
faculties were declining rapidly as I had to ask Linda to cut up the food on my plate
because I could not handle my knife and fork with any dexterity. I was seriously wondering
what was going wrong with my body.
On Monday morning I was virtually helpless. Menorca was obviously off the agenda so we
had to make all the necessary arrangements to cancel the holiday. We were very fortunate
with our doctor’s surgery in that we were able to make an appointment first thing. I
somehow managed to get to the car with the aid of the crutches and my long-suffering
wife, but once at the surgery it was a case of getting a wheelchair and pushing me in. I did
not know what was happening as I seemed to have lost control of all of my limbs. I could
empathise with a jellyfish tossed around at the whim of the ocean currents having little
control of its destiny.
The loss of control was devastating. I was examined by a young doctor (who I was to discover was the daughter-in-law of an unrequited love half the country and over half a century away in space and time, but that is another story) who had a look of concern on her face. My anxiety was compounded by her need to consult a senior. They both concurred that it was possible that I had contracted something called Guillain-Barre Syndrome (GBS) and that it would be necessary for me to be hospitalised immediately. I cannot thank the doctors enough for this early tentative diagnosis as it
probably saved my life! On reflection later I felt that my body had aged 25 years over a 48
hour period. My brain was struggling to comprehend what that might mean.
So the whole hospitalisation thing started and was to go on for three months! The first ten
days were spent in the high dependency unit at the Queens Medical Centre. This was a
very busy time with a constant round of tests and monitoring procedures. The lumbar
puncture, through which a definitive diagnosis could be achieved took place two days into
my incarceration.
I was asked if I would be willing for a student nurse to undertake the procedure. Being aware of the need for trainees to practise their skills I, of course, concurred with this request. The student tried very hard to insert the probe into my spinal column, but after three attempts with no success it was left to the qualified nurse to get it right. This is a painful procedure at the best of times but it seemed insignificant compared to what was happening to the extremities of my body. The analysis of spinal fluid confirmed that indeed I did have the condition known as Guillain-Barre Syndrome (named after two the French scientists who identified it whilst treating soldiers returning from the First World
War).
This is a condition, triggered by an infection, virus or some other attack on the body which sets the immune system into motion, or rather, overdrive. In a very small number of cases (1 in 100,000) the immune system goes out of control and starts attacking the peripheral nervous system with the consequence that no messages get to the muscles in the arms and legs. Hence paralysis ensues. In a small number of patients this paralysis extends to the lungs and breathing ceases. In such situations the patient needs to be intubated in order to facilitate breathing. Fortunately, because I was diagnosed early and an antidote administered, my condition did not deteriorate that far. The antidote was a nightly infusion of immunoglobin for five nights. This effectively stopped the process getting any worse but did not have any curative effect on the damage already done. Because the
condition is so rare I found myself to be a target for student groups to try to diagnose my
illness. This happened several times at the Queens Medical Centre and while I was in the
neuro-rehabilitation unit. It sometimes seemed as if I was holding medical seminars in
order to raise students’ awareness of GBS. I must admit that this was aspect of hospitalisation that I actually enjoyed. The enthusiasm of the trainee doctors helped to lift my spirits.
My 10 days in the Queens Medical Centre was a totally new experience for me despite
having been in hospital for operations in the past. The experience I had to handle was one
of total helplessness. I could not walk. I could not wash or shower myself. I could not go to
toilet unaided. I could not even feed myself. I would be taken to the toilet on a contraption
which reminded me of a chariot! I would be standing, supported on a platform, holding on
to a bar in front and being pulled by a care assistant. All I needed was a whip and a spear
and I could have been in the Colosseum of ancient Rome! Being fed was interesting as I
was totally dependent upon nurses or care assistants to feed me like a baby. When my four year old granddaughter took over the role, trying to push tinned peaches into my mouth with a plastic spoon she kept saying, “Don’t slurp, Granddad!” The irony of the role reversal was not lost on me.
The night time was the worst. One of the effects of the condition was an almost
unbearable tingling in the legs and feet and my legs having a life of their own whereby they
would leap and kick uncontrollably (two and a half years on this is still a symptom I
experience significantly). In order to combat this, besides the drugs to address the nerve
pain I started on a course of morphine and sleeping tablets! This nightly dosage was to be
my elixir for three months, although as the time for my release from hospital became close
I made a conscious effort to wean myself off this delightful cocktail as I did not want
addiction to add to my problems.
Illness and disability come in many forms, but all have one common characteristic and that
is the loss of independence. The pain, the discomfort and the immobility can be borne with
some degree of stoicism, however, the dependency upon others for everything which one
needs to do is the hardest cross to bear. This was to become the central factor of my life
for the foreseeable future and was the hardest lesson to learn, if indeed I have learnt it yet
or ever will.
After the 10 days in the Queens Medical Centre I was moved to a neuro-rehabilitation unit
at Nottingham City Hospital. This proved to be yet another learning curve where my days
were centred on physio, pharmacy and frustration with the latter being most prevalent.
Initially I was confined to bed 24/7 with the odd respite when I would be moved to an
uncomfortable plastic covered chair. The last thing I wanted was a sweaty bum! I could do
little but read (thank goodness for the Kindle as holding a book and turning pages was
beyond my capability) or watch TV. Initially I even had problems managing the Kindle as I
could not hold it and flick through the pages at the same time. However, a close friend with
a creative and practical turn of mind produced a gadget which would hold the Kindle and
clip it on to the table in front of me.
I really enjoyed watching the Tour de France on ITV4 and even started to understand the almost mystical timing and tactics of the race. However, just as the race was coming to the final stages the hospital system lost ITV4! No amount of remonstrations with maintenance staff was able to recover the channel. Perhaps this was the first signal of the demise of Carillion! Frustration!
Having little manual dexterity and strength would often cause me to experience extreme
claustrophobia. On one occasion when wearing a cardigan I became too hot. I found it
impossible to remove the garment and went into a full-blown panic attack which was only
relieved when eventually someone responded to my panic button and helped me to take it
off. The nursing staff, last thing at night, would come and make sure that I was tucked in
firmly for the night. This would also produce feelings of claustrophobia. I would feel like
some insect larva struggling to get out of its chrysalis prison so that in the end I had to
train the nurses not to tuck me in too tightly! I think they thought that the tighter patients
were tucked in the less trouble they would be in the night. Fortunately, the stock room did
not have a supply of straitjackets!
As the early weeks went by I started to gain a tiny amount of dexterity in my hands
although my legs were still not responding. This meant that I could attempt to clean my
own teeth and have a stab (probably not the most fortunate choice words!) at having a
shave. I did this one morning and then was duly wheeled, naked but for a towel covering
my modesty, to the shower where I was allowed to wash myself sitting in the wheelchair.
That morning there was an agency nurse looking after my needs. I was showering myself
quite happily when, on leaning forward to wash my right foot I put my weight onto one of
the front wheels which, unfortunately, had not been securely braked.
The force of gravity (to become both my best friend and worst enemy – friend because I could rely on it, enemy, because it sometimes cast me down) then came into play. The chair started its
inexorable downwards journey, gathering momentum, towards the drain in the centre of
the shower where it abruptly stopped. I didn’t! I ended up, naked, in a heap in the corner of
the cubicle, undignified but unhurt. Fortunately I could reach the red emergency cord
which I duly pulled. Numerous nurses and assistants appeared around the shower curtain
and each had a singular look of horror etched on their faces. What I had not realised was
that the warm water of the shower had started blood flowing from a minor cut on my face
caused by my earlier attempts at shaving, so not only was I found in a heap on the floor
but also with blood running freely down my face and mingling with the water as it flowed
down the drain. Not quite Psycho but close! I still don’t know whether it was the blood, the
fall, or possibly the prospect of all the forms that had to be filled in which caused these
looks of horror.
Very gradually I started to regain strength and a little control of my legs. I had managed to
manoeuvre myself into a wheelchair with the aid of a slide-board but my arms were not
strong enough to push myself but I did manage to scoot using my feet, much to the
displeasure of the physiotherapists for whom this was not a recommended approach. But
for me it worked. I will never forget the day I made my first steps. I was due for a physio
session and some close friends had come to visit me. They were invited to watch my
feeble efforts at movement. That day I had a different therapist who, as I sat on the bed in
the therapy room turned his back on me, crouched down and said, “Put your hands on my
shoulders.” This I did and as he rose to his feet I rose with him. He moved forwards slowly
and as he moved, in order to maintain balance, I had to move also. This forced me into
making my first steps and my friends who were watching gave me a round of applause. This was a very emotional moment.
My stay in the unit was not without its difficulties beyond those of my limitations and
discomfort. All patients would have access to a call button to summon assistance whether
they were in their bed, in the bathroom or toilet. On one occasion early in my stay I was left
in the toilet for over twenty minutes before someone responded to my call. On another
occasion the patient in the room next to me had obviously pressed his button with no
response and was calling out for help. No one came and so I ended up scooting in my
wheelchair up the corridor in order to find someone to assist him. These issues were not
the fault of the individual carers or nurses but, in my opinion, of the management which
had failed to put into operation rigorous standard operating procedures and clear
expectations of the staff. Things improved somewhat when I had a meeting with the unit
manager along with my wife and stepdaughter (who we happened to mention was a
solicitor!) taking notes.
The neuro-rehabilitation unit catered for a wide range of patients and conditions. One guy
in the room next to me had had a spinal infection which left him paralysed and unable to
move at all. He was a big man, a former rugby player, and it was so sad to see him totally
dependent upon the care staff and the various pieces of lifting machinery which they used
to manhandle his body. Another young woman, a student, had had very serious car
accident and as a result was brain-damaged. Her mother came in every meal time to feed
her and her father would take her in his arms and carry her from room to room as required.
Incredible devotion! She seemed so slight and frail. It was a joy, however, to learn that
after a year out of hospital she had recovered sufficiently to resume her university studies.
She was instrumental in setting up a petition to save the unit from closure during a round
of NHS cuts. Thankfully the petition was successful as ‘care in the community’ would not
have met my needs or the needs of most of the patients there.
Some of the patients, however, did not enhance the rehabilitation process! Close to my last day in the unit whilst at lunch I left my mobile phone on the dining room table when I had to rush off for a physio session. Coming out of the session I went to collect it only to discover that it had been
moved. I assumed it had been handed in as lost property and duly went to reception to claim it. It had not been handed in. When Linda arrived for visiting time I explained this to her so she suggested that with one of the nurses she should go around the unit calling my phone number with her mobile. This she did. When outside one of the small rooms she heard a buzzing coming from under the bedclothes. The nurse asked the occupant what the sound was and he replied that it was nothing. Linda and then took up the challenge and said that she thought there was a phone in the bedclothes and that it was probably mine as it was ringing when she called my number. After a rather sheepish look the gentleman concerned retrieved the phone from under the bed clothes and said that he had
picked it up off the table and “was keeping it safe for me!” Charitably, we put this down to brain damage rather than a more malevolent act. The nurse was somewhat awed by Linda’s people skills and said that now she had a new role model!
My three months in hospital would have been unbearable had it not been for the daily
visits my wife made and the regular visits of friends who brought contraband. Two friends
brought me a whole picnic which we spread out on the bed and pretended we were
outside. Another regularly brought me beer, Melton Mowbray pork pies and brown sauce.
Another (who has sadly since died from motor neurone disease) supplied me with cakes,
cheeses and brandy. The supply of wine gums from other visitors seemed endless!
The whole experience of being in rehabilitation was a mixture of highs and lows. Highs,
when I managed to make a movement which I could not do the day before – I was thrilled
when I could get onto all fours on my bed – lows when I realised what I had lost. One time
I looked forward to was towards the end of the nurses’ and assistants’ shifts. The shifts
were twelve hours long and it was clear that by the end of that time staff were very tired.
There was a half hour overlap between shifts so during that time when handovers had
taken place a number of staff would congregate in my room and we would talk about
everything apart from being ill and helpless. The state of the NHS and its political masters
featured heavily! I think the staff seemed to look forward to this as much as I did. A very
significant low was filling in the form in order to get the attendance allowance. This entailed
putting down in black-and-white everything which one could not do. I think it was only
when I did this that I realised the full scale and scope of my disability.
The hospital provided psychological support for patients who might be feeling somewhat
depressed. From time to time a psychologist would come to my room and encourage me
to talk about the way I was feeling and often get me to score my mood on a one to ten
scale or get me to look at inkblot shapes and see what I made of them. I was never quite
sure what she was expecting to determine from this activity. It so happened that on a day
before such a visit Linda had been in and, much to my chagrin, had informed me that one
of the peacocks from the farm at the back of our house had invaded my vegetable patch and sat on my young leaks. So on the arrival of the psychologist, I was asked the usual question, “How are you feeling today?” I responded that I was not feeling too good and possibly even mildly depressed. She leaned forward, hands clutched delicately across her knees and gaining full eye contact with me, asked me the cause of this depression. I said, “The peacock has sat on my leaks! I am very upset.” She unclasped her hands, leant back on her chair, put her head to one side and gave me a quizzical stare. I am sure that sectioning crossed her mind! Our sessions were never quite the same after that!
Up until this time I had been a very active person and my life revolved more around
physical activities than mental ones. When I reflected some months later on what I had lost I counted sixteen significant activities which made up my life which I could not do any more: walking, cycling, motorcycling, skiing, windsurfing, fishing, domestic jobs and repairs, gardening, sex, travel, charity work, cooking, making jams and preserves, photography, wine appreciation and collection, and playing with the grandchildren in the snow! When I became ill we had to cancel a walking holiday in the Italian Alps, I had to abandon a motorcycle trip through Holland, Germany, Denmark and into Sweden (and sell the motorbike!). I was looking forward to planning the skiing trip for next year when I hoped to qualify for a free pass having attained the age of 70. For the autumn with some friends we had planned a major trip to New England, Canada and the Arctic Circle followed by Florida for some sun.
I also did voluntary work for MacMillan Cancer Support which generally involved touring round pubs, garages, shops and other establishments retrieving collection tins and banking the money. Very often I would do this on the motorbike as it gave me a great excuse to get it out of the garage and ride for a purpose. This had all gone! A couple of years earlier I had realised a long-held dream of touring California on a Harley Davidson. With my brother-in-law we had started in San Francisco, rode the Pacific Highway, turned inland through Kings Canyon and Yosemite national parks before heading up to Napa Valley and then, to crown it all, riding back over the Golden Gate Bridge into San Francisco. That experience was hard to beat. I was having a great retirement until GBS! I had always wanted to play a musical instrument but now I was pleased I could not as it would have been something else to lose. I was becoming an observer of life rather than a participant in it. This all sounds very sombre and down beat, but without this reflection this would not be an honest account of how I felt and what I was experiencing.
I emerged from hospital in early September. I could probably have gone home earlier but I was determined not to leave the hospital until I could get around the house without a wheelchair and I could wipe my own bottom! Both of these targets were achieved but without refinement or elegance (it’s amazing what you can do with an old toothbrush!).
Somehow I would have to rebuild my life in a totally different way from what it had been before. Trying to achieve some level of fitness when the messages were still not getting to the muscles was going to be quite a challenge. So, I thought it would be good for me to go swimming. I have swum since I was about six and considered myself a fairly strong swimmer and not afraid of water. So
with the help of Linda (who has been a fantastic support throughout) we went to the local
pool. Fortunately there was a beach area so with the assistance of the lifeguards and a
wheelchair I managed to get into the water.
Clinging to the side and with the aid of the support and buoyancy provided by the water, I edged my way into enough depth to start swimming. I pushed myself forward intending to do a simple breast stroke width to get me going and to my horror, amazement and amusement, I sank straight to the bottom! I had no muscle memory of how to swim! I started again from the side practising some strokes and after a couple of weeks I managed a width underwater, my arms still not being strong
enough to raise my head above the surface, but after a couple of months I was doing
twenty lengths alternating breaststroke and backstroke.
During that first summer we went on holiday to Crete with some friends and I decided that swimming in the sea would be beneficial. Our accommodation was right on the edge of the sea with swimming pool type steps leading down into the water. I thought that if I can could use these I would be able to access to water quite happily. I still did not have the strength in my arms to lower myself down the steps backwards nor in the legs to push myself forwards away from the side. I
felt that if I went down forwards and just slipped in I could significantly grazed my back on
the steps. So having reached the steps asked my friend to launch me away from the side.
He took some persuading but eventually having reassured him that there would be be no
problem he gave me a hefty push, launching me into the waves. I swam around quite
happily for a while so when it was time to get out of the water I looked at the steps and
knew that there was no way I was going to be able to climb them. Fortunately, about fifty
metres along from my point of launch there was a small beach. I made for it and crawled
up the beach on hands and knees like some primaeval creature emerging from the depths,
until my friend came round to help me onto my two feet.
Muscle memory for simple tasks had vanished, doing up my seatbelt in the car, tying my
shoelaces, doing up the belt on my trousers, none of these easy tasks could be done
without actually looking in detail at what needed to be achieved – nothing could be done by
feel. For some reason all of the trousers which I owned had buttons rather than zips so
one of the first tasks when I got home was to take them to a local tailor and have them
changed. I also had to have a piece of string or ribbon tied to the zip so that I could pull it
up effectively, having very little grip in my fingers. Unless I concentrated hard, my hands
would curl into a claw shape and my first point of contact with anything would be my
knuckles developing callouses on them and making them look not unlike those of a
chimpanzee.
The loss of independence and control in one’s own life is as hard if not harder to bear than
the physical constraints and difficulties. After leaving hospital I could not drive, although
the DVLA had never rescinded my licence, and for a further seven months I was
dependent upon Linda to take me everywhere I wanted to go. At the end of March I
decided that I possibly had enough dexterity to start driving again. I felt it wise to have
some supervised driving in a car with dual controls. A sympathetic instructor took me out
for a couple of hours and felt that I was quite competent. Initially I found myself
concentrating more on gear changing and clutch control than on what was happening
around me. I thought that, perhaps, I would be better off with an automatic car. A friend of
mine who had an automatic and who was also on very good terms with a local farmer who
had a well surfaced track of about two miles within his land offered to let me have a test
drive. This was successful and I found that with no gear changing to concentrate on my
driving was better and safer. So I treated myself to an automatic car. This made driving
much easier and was becoming enjoyable again. Being able to get out and about on my
own was a significant change to my life, liberating yet challenging. What would the terrain
be like at my destination? What equipment would I need, walking stick, Delta frame,
mobility scooter? How would I manage any activities when I got there? So forward
planning became essential so that I could prepare myself for whatever I might be doing:
shopping, sightseeing, short walks, restaurants, pubs, other people’s houses.
When I reached the age of seventy the DVLA caught up with me and two sides of their computer
system obviously communicated with each other – the disabled data and the age data! They decided that I needed a drivability assessment. For this I had to go to a hospital in Derby and the assessment was split into four parts: cognitive tests, physical assessments, a driving assessment and feedback and debriefing. The whole process was extremely rigorous so I was thrilled when the assessors indicated that I was fit to drive, although as I had taken the test in an automatic car my licence would be restricted to such vehicles.
Being independent sometimes has its own problems. On one occasion I was leaving the house to drive somewhere and I closed the door behind me. Linda, being very security conscious, locked the door and went into the house to carry on with whatever she was doing. As I went to walk to the car I could not move and for one brief, but awful moment I thought that GBS had struck again! Fortunately this was not the case. In order to remain upright I need three points of contact, my two feet and something to lean against. When I was closing the door I was leaning against the doorjamb and my coat had become trapped against the hinges. The obvious answer was to open the door and release myself but as Linda had locked it and I had not got the key that was going to prove difficult.
My next option was to knock on the door and get Linda to unlock it, this was unsuccessful as she
had obviously gone into the depths of the house, put some music on and was unable to
hear me. The next option was to ring the doorbell, how difficult could that be? The doorbell
happened to be located right behind my neck so with my lack of dexterity and still poor
range of movement I performed multiple contortions until eventually I managed to hit the
button. Why didn’t I think of taking my coat off? I’m sure that anyone watching would have
thought I was practising for a contortionist act on Britain’s Got Talent! Linda came to the
door, surprised that I was still there, and released me.
As my walking was improving slightly I started to accompany Linda to the supermarket for
our weekly shop. I managed to walk adequately pushing the supermarket trolley but only
very slowly. It was in the supermarket that I experienced the only hostile response to my
disability in that one “gentlemen” remonstrated vehemently with me because I was holding
him up. This upset Linda much more than it did me. In my first summer out of the hospital
we started going on holiday again and have done a number of trips to European
destinations. In contrast to the person in the supermarket, I have experienced only
helpfulness by all airport staff, flight attendants and the general public. I also have to give a
big thank you to friends and relatives who are prepared to travel with us and help in so
many ways. Their patience and tolerance is exceptional. It would be so much easier for
them to travel without me! On my first few trips I took my Delta frame as an aid to walking
but on subsequent trips I have had to take my mobility scooter as my walking capability
has deteriorated. Why is this?
Just over a year after coming out of hospital I was diagnosed with prostate cancer. I was immediately put on hormone therapy treatment followed by thirty-seven consecutive days of radiotherapy treatment. This whole process was a major challenge but, apart from the first radiotherapy session I managed to access all of the others independently. This was important for me personally but also for Linda so she could carry on with the rest of her life as normally as possible. Unfortunately for me
one side effect of the hormone treatment, which destroys the testosterone production, was
a significant weakening of the muscles, particularly in the lower body. This meant that my
walking capability, which had been slowly improving, gradually became worse as the
treatment began to work. I had managed to walk over 400 steps around the house with no
aid at all and not touching anything for support. I now find myself unable to walk at all
without a delta frame. Hence, my decision to purchase a mobility scooter. Also the radio
therapy had interesting effects on my nether regions. I have tablets to control my bowels
which are green and tablets to control my urine which are brown – has no one thought of
appropriate colour coding? It was clear to me that the medical specialists tend to work very
much within their own narrow field of expertise, so I don’t think that anybody had thought
of the implications of the hormone therapy in relation to GBS. Perhaps this is an area that
needs some research.
My approach all along has been to resist specific aids to mobility as much as possible. So
the decision to buy a scooter was a big one, so the particular model I chose had to be fit
for purpose. I did not need one to travel from home as living in a small village there was
nowhere in particular to go. What I did need was a machine that I could get into and out of
the car myself so that I could achieve greater independence. I also wanted one which I
could take abroad with me and therefore would be acceptable to airlines. After much
research I identified a model (a Luggie), had it demonstrated and duly bought it. It is
obviously a compromise because being fairly compact it has quite small wheels. This
determines the kind of terrain that it will handle and therefore the limitations as to where it
will go, but I can manhandle it in and out of the car myself. It has now been abroad with
me several times, but the process is always unpredictable.
Ideally I would like to be able to leave the scooter either at the aircraft door or at the bottom of the steps. The leaving of the scooter has never been a problem but the unpredictability of collection can be interesting. It may be at the door of the plane or at the bottom of steps or somewhere along
the corridor or most probably on the luggage carousel. If it is the latter, one is then at the
mercy of airport staff to get you from the plane to the carousel. This can take a significant
amount of time and defeats the object of trying to be independent, but at least once you
get to passport control you are fast tracked!
It is important to get to know the range of your scooter and how this is indicated. I discovered that as soon as the gauge on mine touches the red the power dropped off a cliff and you are stuck! I had been having a very pleasant day in Malaga with Linda and my sister-in-law and brother-in-law, visiting galleries and museums dropping into the odd bar, eating by the quayside. When visiting museums and galleries one is not really aware of the distances travelled dodging from one exhibit to the next and possibly back again. Hence on starting to return to our hotel the gauge on the
scooter went to red and shortly after it stopped! Linda and her sister had gone shopping
leaving Graham, my brother-in-law, to push me back to the hotel. This was not easy
through the narrow, busy, backstreets of Malaga, compounded by the fact that we also got
lost, making the distance significantly greater than necessary. Every day is a learning curve.
Also during that first summer, through the sailing club I belonged to for my windsurfing
activities, I started sailing their access boat. This is a sailing dinghy specifically adapted to
enable people with disabilities to sail it either with a helper or alone. After brief tuition I
managed to sail it independently although getting in and out did pose some problems.
At this time I felt that my improvement had stagnated which made me very despondent.
However, at a summer regatta for disabled people, whilst chatting to a competitor suffering
from muscular sclerosis I happened to mention that I felt that my improvements had
reached a plateau. His response was, “I wish I could reach a plateau!” Because, of course,
he was on a downward spiral whereas I was, in theory, on the way up. That encounter
gave me considerable pause for thought and some degree of thankfulness for my
condition. Although at the time of writing, my mobility is far worse than it was then.
On leaving hospital I received a range of physiotherapy support which during the first year
helped me get back on my feet and gain some manual dexterity. However, under current
NHS provision this did not last but I was exceptionally fortunate to have a friend who was a
recently retired neuro-physiotherapist. Our weekly sessions, mainly focusing on punishing
my hands, were invaluable and continue to be so. Not only do my hands get a workout but
my brain also through tackling the annual Christmas quiz, discussing books, films, the
news and current TV provision. I think the meaning of life will soon be on the agenda!
As I mentioned earlier one of the biggest challenges I faced, and still do, is that of trying to
maintain some independence and control in my own life. With my walking being
exceptionally limited and my balance preventing me from cycling I decided that it would be
a good idea to invest in a tricycle. After much research I came across a small
manufacturing firm in Stoke-on-Trent (Longstaff Cycles) who assessed my needs and
designed a tricycle to meet them, including motor assist. The staff at Longstaff were very
aware of the needs of disabled people and were very sympathetic to my condition. The
tricycle was a godsend enabling me not only to get exercise in the open air but also to
maintain contacts with a couple of cycling groups with which I was involved. I would strap
my walking stick to the back of the trike, providing with me some slight degree of
independence when I arrived at the stop or destination.
Unfortunately as my legs became weaker due to the cancer treatment, although I was still able to cycle I became more reliant on group members to support me when we came to a stop. Cycling during the summer worked well for me but as the weather became colder I found it increasingly
difficult to keep my hands warm and hence control the trike. Determination is not always a
good thing! On a December Monday morning I was due to lead the group, the Peddling
Pensioners, on their weekly ride. Anticipating the day to be cold, I had arranged for a friend
to lead the group on my behalf, but when the morning came I told myself not to be such a
wimp and get out there. That was possibly a mistake! The group was meeting at a pub
about two miles from home so, along with Linda, I set off to meet them. About halfway
there I managed to pick up a puncture in one of my back tyres. Being unable to walk, this
left me fairly helpless. Linda said that she would carry on to the pub and inform the group
of my problem whilst I attempted to cycle back home with one flat tyre.
One of the advantages of a trike is that if you have a puncture in a back wheel, by leaning towards the other wheel, you can still cycle along fairly slowly without causing too much further
damage to the tyre. I arrived home, put my trike in the garage, and looked forward to a
relaxing morning in the warmth of my home reading my current book. This was not to be! A
few minutes later a couple of friends from the group arrived to say that they were going to
mend the puncture so that I could join the ride. Obviously, I was very grateful! The job
done and the rest of the group having arrived at my house we set off on our twenty mile
ride. After about three miles we encountered horizontal sleet which made everybody cold
and my hands numb. Thereafter, the ride was fairly uneventful and had it not been so cold
would have been very pleasant, touring some little used lanes and local villages.
On arriving at the pub I was thrilled to see that there was a roaring fire and a stool very close
to it. I made the best beeline that I could to achieve this pole position. Big mistake! I
started to warm my hands whilst talking to one of my friends across the table when I felt a
dizziness coming over me and no sooner had I mentioned this than I found myself flat on
the floor and gazing up through the legs of an elderly gentleman who was eating his lunch.
I had obviously fainted and as I came round I heard comments like, “Shall we get an
ambulance?” “I think he’s got a pulse.” I came to, was helped back onto my seat and duly
ate my lunch after which I cycled the two miles back home. I subsequently learnt that
warming up too quickly can cause blood to rush from the head and other major organs to
the extremities of the body causing light-headedness and fainting. Another learning curve!
Something I find very frustrating, or rather annoying, is when people, particularly those
who may not have seen me for a while, say, “Gordon, you do look well!” and I usually
respond with something quite facetious like, “You can never tell by looks!” I usually feel
guilty after this response whether I have actually said it or even only thought it. They only
mean well. That is one of the problems. I don’t actually feel ill. I feel weak, helpless, in
discomfort and sometimes in pain but I don’t actually feel ill. While I am sitting down
nobody would know there was anything wrong and in fact from my looks they would think I
was in rude health.
Some years ago following an operation called an ablation to cure my condition of atrial fibrillation I went through a period of extreme weakness for a couple of months until my heart achieved its normal sinus rhythm. I remember thinking, particularly after walking up a reasonably steep hill during August in the south of France, that I would hate to live with this continuing condition as it was most debilitating. I even thought, having watched some para-Olympian athletes go through their paces that leg amputation would be a much less frustrating condition because at least the top part of the body could be fit and active and I could do all sorts of activities in a wheelchair. I seem now to be in a similar situation where my legs are weak and I am only able to walk short distances with a
frame, and my hands and arms are similarly week, both because of the failure of the
nerves to carry signals to the muscles and hence the decline of muscular strength
throughout my body. I am also resisting succumbing to the use of wheelchair because I
feel that once I use one I will never want to get out.
I must be working hard towards becoming a grumpy old man! Many would say I have
achieved that already and would probably win a gold medal were it to be an Olympic sport!
People around me are very kind, supportive and well-meaning but my insides churn when
somebody says, “You’re so brave, I don’t know how you manage.” Or, “You’re such a good
example of how to cope.” Because for me it’s not like that all. I struggle from day-to-day,
not wishing to get out of bed in the morning, knowing that I will have to drag my body
around for another sixteen hours or so before I can get horizontal again and rest for
awhile. I don’t think I cope. I don’t feel brave. I don’t want to be an example. I just want to
be me again!
One of my biggest problems and, I think, one of my biggest challenges in the weeks and
months to come is how I actually fill my time purposefully when practical activities are so
difficult rendering them either impossible or so frustrating that there is no pleasure in them.
I look around me and see all kinds of things that need doing, the towel rail in the bathroom
needs fixing, the radiator that needs bleeding, the plant that needs repotting, the log pile
that needs tidying. All of these needs and the list goes on. I look at the garden and think
that soon I would want to start planting vegetables, getting the greenhouse ready for
spring, scarifying the lawn, but knowing that I find it impossible even to carry a watering
can full of water or a bag of compost. In some ways I envy Stephen Hawking because he has the kind of brain and mind within which he seems to be able to live in a way which is useful, creative and satisfying. My brain is not like that! I read a lot which I enjoy, I watch too much TV, because I can drive I can go and see friends independently.
I have recently started meeting up with some old college friends and because of where we live we meet in a pub for lunch which is equidistant from our homes, about 60 miles for each of us. The last time we met I arrived at the pub and whilst locking my car I had forgotten to put the brakes on my Delta frame. Whilst manipulating the key fob I lost my balance, the Delta
frame rolled away from me and I fell to the ground some distance away from my car. I
could not reach the car and I could not reach my frame! I hoped that one of my friends
would be in the pub already so I took out my phone and rang him only to discover that he
was about 20 minutes away! I’m not sure what passers-by might have thought. There was
I lying in the pub car park like a beached whale with my phone to my ear and I had not
even had one drink yet! A passer-by gave me a strange look so I hastily put my phone in
my pocket and said to him, “Could you help me please?” He was of substantial stature. I
managed to sit up, he came round behind me, put his arms around my chest and lifted me
to my feet. He then led me to my walking frame, I thanked him and we both went our
separate ways. I wasn’t hurt fortunately, apart from some damage to my dignity which was
in pretty poor shape anyway after my sojourn in hospital so, to repeat the plagiarism of
Private Eye, er…no problem there then. Another learning opportunity – don’t forget the
brakes on the Delta frame!
Beyond such activities I am not sure how, on a day-to-day basis, I am going to spend my
time productively – writing may be one. However, I must be thankful in many ways because,
with help, I have managed to go to the theatre, go to the cinema and even to big stadiums
(stadia?) for concerts. We have an African safari holiday planned which I know will be
challenging and I hope that ‘the gain will be worth the pain’ as I have yet to do a long haul
flight and sleep in camping conditions. I know I will have to refocus my options and
expectations.
At the time of writing I have just finished reading a book called The Big Little Things by
young man called Henry Fraser, a promising a rugby player, who broke his neck through a
diving accident at the age of seventeen. It is an amazingly upbeat book tracking his
progress from total paralysis through to completing his A-levels, taking up painting by
mouth, becoming a successful artist and inspirational speaker. His positivity is off the scale
and he puts this down to his attitude of acceptance and adaptation. One of the chapters in
his book is headed ‘Every day is a good day’. I envy him this attitude. If I want to sum up
my days with a chapter heading it would probably go something like, ‘Every day is a bad
day and some days are worse’. That is not because of any particular pain or discomfort,
although those are always there, but the recognition of the severe limitations which have
been imposed upon my life.
Perhaps, because his accident happened when he was seventeen rather than close to seventy, and he had been living at home and looked after by his parents or at boarding school where his day-to-day needs were met, he had not experienced the levels of responsibility and independence of an older person and therefore the shock of dependency was perhaps not quite so great although the physical challenges must have been monstrous. His attitude was about looking forward to a very
changed but very positive life, whereas I seem to be looking back to salvage what I can
from the past rather than looking towards the future. Possibly there is yet another lesson
for me here.
Via a casual conversation that my wife was having with a participant in her Pilates class I
came across the possible curative effects of hyperbaric oxygen therapy. Her husband had
been using this for twenty years to relieve symptoms of his MS. This therapy is
administered through breathing pure oxygen in a pressurised tank, the principle being that
more oxygen in the red blood cells increases healing processes. So, I thought I would try
- So on a weekly basis I sit for an hour and a half in a pressurised tank with half a dozen
other people all looking as if we are jet fighter pilots with black oxygen masks on our faces.
The therapy, besides being used to alleviate MS symptoms, is also used to treat such
conditions as sports injuries, cancer, and the after effects of a stroke. I would have nothing
to lose. There is no immediate benefit to this as the impact is cumulative so after four
sessions I am crossing my fingers (for me that is only metaphorically!) hoping that I will
reap some positive benefits. It is interesting to talk to the other participants in this process,
that is when we haven’t got the oxygen mask on our faces. Their conditions range from
prostate cancer to a brain tumour to a hip replacement and sports injuries as well as MS.
They generally find it hard to pinpoint the benefits but all say they feel better for it. So
here’s hoping!
Whatever I try to do I have to weigh up whether the gain is worth the pain. This is
particularly so when going anywhere away from home as at home I am in my comfort zone
where I know that I can manage all of my basic needs. So this year I have some
challenges ahead of me. With some friends, our regular travelling buddies, we are, as
mentioned earlier, going on Safari in Tanzania, including a number of nights in tented
accommodation. This has taken considerable research in order to ensure that my physical
needs are met without going down the road of a specialist holiday for the disabled as,
mentally and psychologically, I still do not yet put myself in that class even if my body says
that’s where I should be. With family members we are planning a fly drive to New England,
obviously, in the fall. That will take even more research as we will be staying in numerous
places, each of which must be accessible. I can see many hours on the Internet in order to
get it right. Will the gain be worth the pain? I won’t really know until we come back but I
have to plan with a significant degree of hope, as, in fact, I have to do with every aspect of
my life.
Gordon Wallace
February 2018
