“Well, it’s only to be expected when you have Multiple Sclerosis!” The locum doctor’s words came as a real shock to both my wife and myself, as neither of us had any idea that the variety of strange symptoms that my wife, Marg, had been experiencing were MS. We knew something was wrong, but Multiple Sclerosis, surely it couldn’t be! Wasn’t this some awful condition that meant years as a cabbage consigned to a wheelchair?
We had gone to see the doctor one Saturday morning in 1988 following another of Marg’s sudden falls. These had become more frequent over the preceding months. One moment she would be walking along and the next her leg would give way, she would lose her balance and would be lying on the ground. At first, I found it comical, especially the day when we were walking along the canal tow path and she suddenly caved over and fell in up to her neck in the dirty water. I laughed, she cried and it ended with one hell of a row. I had to wade in to get her out. We were a good couple of miles away from the house and the trudge home in our wet, smelly clothes was not at all pleasant. That particular episode happened on Sunday, 30th August 1987 – how can I be so exact? Well it was the day after our son’s wedding.
The falls were the most noticeable symptom, but there had been some others as well. Her eyes started playing tricks – on one occasion she could see three TVs on the lounge wall. Her sleep patterns became irregular – some nights she would hardly sleep at all, some nights she would go to bed at 10.00pm or so and not surface until the following afternoon. There had to be something wrong, but what was it?
We visited her GP – many times. He asked all sorts of questions and eventually sent Marg to see a consultant neurologist at the local hospital. He was not at all forthcoming as to what her condition might be, but suggested a whole series of tests including a brain scan and a lumbar puncture, all of which Marg dutifully suffered – she was determined to find out what was what. Unbeknown to us, the results of these tests and a letter from the consultant neurologist had arrived at the GP’s surgery just before our visit on that fateful Saturday morning. Unbeknown to the poor locum GP, we had not been told about the results and the letter’s conclusions.
Buckets of tears followed the initial shock. The GP was so apologetic (she thought that we already had been told of the MS diagnosis) that I was almost expected her to burst into tears as well. Not the best way to find out that your partner has MS – but is there a good way to hear such news?
Coming to Terms with MS
Before the age of the Internet, finding out about such things as MS was a real slog. The GP managed to find us a booklet (I think, from the MS Society) which we both found this very depressing. All it did was to reconfirm our existing prejudices that life with MS meant life in a wheelchair. With hindsight, I guess that we were still in shock and read what we expected to read rather than what it actually said.
We contacted the local MS Society and they invited us along to one of their weekly meetings – a horrendous experience since all the attendees were much younger than Marg (she was in her early fifties at the time) and seemed to be much worse off than her. I found the whole experience that evening very distressing – firstly because many of the attendees were in their teens or early twenties and appeared not to be able to walk of even stand; and secondly because I imagined Marg would become like this in a matter of months. Most of the talk – at least that I can remember – was about incontinence! I’m not good at coping with illness (either others’ or my own) and I simply couldn’t hack it. I came away that evening more depressed that at any other time in my whole life (either before or since).
So, back to see the GP and then back to see the consultant neurologist (I seem to recall his name was Dr Ponsford, or something like that) at the Walsgrave Hospital in Coventry. He spent a long time explaining Marg’s condition and its implications to both her and myself. We now know that Marg has Primary Progressive MS – I don’t recall Dr Ponsford using the term, but what he described to us back in 1988 fits well with what we have subsequently learnt about MS and what has happened to Marg in the subsequent 15 years or so. The one thing that I took away from the session with Dr Ponsford was that, although Marg’s condition would get worse over time, there was no certainty that she would end-up wheelchair bound and even if she did this could be many years, or even decades, away. Phew! Following the initial harrowing experiences with the MS Society, that was one hell of a relief.
By the way, I am not knocking the MS Society. My wife is a member and they do a sterling job. Perhaps, 15 years ago MS was much less understood than it is today and the members at our tiny local branch in the Midlands could not relate to her variation of the illness. I guess that it was also fitting that they should concentrate their efforts on those much more dependent on others than Marg was, or is even today.
Life gradually got back to normal, well almost. We bought a wheelchair for use on longer trips out since Marg’s legs became unsteady after standing for a while and she found that walking long distances became very tiring. But that was our only concession to MS at that time. Marg continued to ride her bike around the village (she had never learnt to drive) and she could get around the local shops OK.
Let’s See the World
The main outcome of Marg’s diagnosis is that we both became determined to see more of the world before her condition deteriorated. We had holidayed in Europe (Spain, Malta, France, etc), but wanted to go further afield. We had the wheelchair and we were bloody well going to use it!
I had always wanted to see Red Square and the Kremlin so our first post-MS adventure was to the USSR. No, not just Moscow, but a tour taking in Moscow, Leningrad, Kiev and Odessa. This was still in the days of communism (just – Gorbachev was in power) and the only way to travel was with Intourist, the state-owned travel company.
I sent off for the brochures….. but, alas, there was no mention of catering for disabled travellers. I phoned Intourist. Could they cope with a disabled passenger? Yes, flights and hotels would be fine, but the Russian pavements might be a little bumpy! Any extra change for the wheelchair? No, please bring it with you. Any restrictions? No, none that London were aware of.
So we booked up, set off and had a wonderful time. The Russian and Ukrainian people were very friendly and made us feel very welcome in their country. Nothing was too much trouble. When one of our party suffered a bad nose bleed in Kiev, a local resident came to the rescue and even went back to her apartment to fetch some smelling salts which seemed to cure the nose-bleed instantly. Everyone wanted to know about England and life in the west.
We enjoyed (if that is the right word – some of the planes were a bit on the old side) three internal flights with Aeroflot, in addition to the flights there and back – five flights in all. Each time we duly checked the wheelchair in with our luggage and half expected it never to reappear at the other end – but each time there it was, and quite often it was the first item on the luggage belt.
Marg was very self-conscious about being seen in her wheelchair. It certainly did not appear in any of the photographs that we took on that first trip. Indeed, to this day, I don’t believe that we have a single picture of the wheelchair anywhere. However, she need not have worried – there were no strange looks or long stares from the people we came into contact with. Everybody seemed to accept the wheelchair as a normal part of her belongings.
So, our first trek with the wheelchair was a great success and we had fallen in love with the USSR.
The next year we ventured even further afield and took what was definitely our best holiday – a three week tour of the Far East, which took in Hong Kong, Macau, southern China, Singapore, Bangkok and Phuket. We set off in August 1990 and, again, the wheelchair went with us.
We really enjoyed the big, cosmopolitan cities of the orient. The hotels were superb and getting around was no problem – flat pavements, lifts in the hotels, ramps into the shops – everything just seemed to be built for the wheelchair traveller. The only problem was that it was the start of the typhoon season and that rather ruined the beach stay in Phuket. We did all the “touristy” things – the elephant show, the “Big Buddha”, the Bridge over the River Kwai and had a thoroughly good time. The MS was all but forgotten for three whole weeks!
The highlight of the holiday, however, was the trip into southern China. We crossed over the border from Hong Kong in a rickety old bus and journeyed to Shiqi, a small town with just the one hotel - our little group of 20 took just about every available room. There were bicycles everywhere and crossing the road during the evening “rush hour” was an absolute nightmare. You simply walked straight out into the road and let the cyclists swerve around you - they seemed pretty used to it. I would not advise trying this in central London!
The people were ever so friendly and we were shown and told about local life in China. No pretence, just how it was. We visited a local farm and a fish market that smelled like nothing I have smelt before or since (and I certainly have no desire to repeat the experience) and spent a couple of very enjoyable hours at a primary school. It was a real education - if you think that having to endure a wheelchair is a tough, try life in rural China!
As with the USSR, we fell in love with China and vowed to go back for more. Fortunately (for us) the events in Tiananmen Square in 1991 rather put many tourists off the country and we were able to get a great deal that spring that took us to Beijing and Xian.
But unfortunately, (as with many things the second time around!), the second trip did not quite live up to our expectations. Yes, it was enjoyable but somehow not quite as much as the first time. The weather did not help - it snowed in Beijing on the second day that we were there. The locals told us this it was the first snow that the city had experienced all winter - to this day, I still do not know whether to believe them. There we were trundling around the Summer Palace in the snow with the wheelchair leaving ruts in the lawn - “Not my fault, Gov, I can’t tell what’s path and what’s grass – it’s all covered in snow!”
The next day, it was off to see the Great Wall of China. This was definitely too much for the wheelchair – I had enough problems climbing up the wall since it was still covered with ice and snow from the day before. Marg, sensibly, decided to give going up on to the wall a miss and stayed in the warm. Of all our treks, it’s about the only place that the trusty old wheelchair did not get to.
Back in Beijing, we did more “touristy” things – a tricycle taxi ride around Tiananmen Square, a trip around the Forbidden City, a ride out into the country on a steam train, numerous visits to tourist shops. Then it was off down to Xian to see the terracotta warriors – a sight that we will never forget.
Living with MS
During the nineties, the effects of Marg’s MS gradually started to have a greater impact on her mobility. I guess in MS parlance it was “primarily progressing” and she became more dependent on the wheelchair to get around. She had to give up riding her beloved bike and the stairs in the house were becoming more and more of a challenge. The wheelchair was used not just for holidays and days out, but also for trips to the shops.
In 1993, my then employers offered me a job in London and after much agonising we decided to up sticks and move from the Warwickshire village where Marg had been born and had lived all her life, down to the suburbs of London. It meant leaving her mum and the grandchildren behind, but to be honest both were demanding too much of my wife and getting away from them was, in many ways, a blessing in disguise.
We bought a bungalow in the south-eastern suburbs of London – Petts Wood for those of you who know the area. We joined the local MS Society and, although we have never been along to any of their meetings, they do provide some good local information. It was through the local branch of the MS Society that we bought our first three-wheel electric scooter – second hand but in good condition.
The scooter gave Marg a new found lease of life. She could use it to get down to the shops in Petts Wood (we have a Woolies, a Boots, a couple of supermarkets and a good variety of smaller shops), which are about 10 minutes away of foot (or “on scooter”). Once “down town”, she could get around the smaller shops unaided or by holding onto the shelves to steady herself and she used the trolley for balance in the supermarkets. Balance is actually her worse problem.
There were occasional bad spells – I guess that they were relapses. Some times our GP would put Marg on a course of steroids and they seemed to help, but of course they only treat the symptoms not the root cause. My employers were understanding and allowed me time off work to look after Marg when necessary – but she is very independent and hates being “nursed”.
Throughout the nineties we continued to take our holidays. We toured Egypt and the Nile one year, Italy another and Southern Spain / Portugal and Morocco another. We also took some cruises, including one to Iceland, northern Norway and the Arctic, and another around the Baltic Sea, enabling us once again to visit countries of the former USSR. And, yes, everywhere we went our old friend the wheelchair went too.
At the end of the decade we decided to venture a little further and went to Cuba. We toured the island for a week and then spent Christmas 1999 in Havana. Not an obvious choice for a Christmas break, I agree, but at least it was different. Definitely no chestnuts roasting on an open fire that year! And, best of all, no family stuff to worry about! It was to be the last big adventure abroad together for the three of us – my wife, myself and the wheelchair, that is!
The Situation Today
During the last couple of years, Marg’s balance and general mobility have definitely got much worse. Whilst she can still make it down to the local shops, she needs a stick to help her get around and is no longer able to walk around her beloved garden unaided. She has suffered a number of falls, one quite serious one whilst I was at work, and this has really knocked her confidence for six. She is also now much more self-conscious about going out and has become very much a “home bird”.
Following her bad fall last year, we arranged for her to have a CareLink panic button, which she wears around her neck. This is a great little device – if Marg has a fall or other problem while I’m not around she can press the button and help will be on its way.
Fortunately, my job allows me to spend some time working from home so Marg is not on her own every day. We also have some good neighbours who pop in from time to time.
We find it difficult to go and stay with the family in the Midlands. Both our son and our daughter have traditional houses and the thought of having to negotiate the stairs is too much for Marg. They come down to see us quite regularly, so we seem to see plenty of them and the grandchildren.
Marg has also become a real worrier. Little events that, to me, seem trivial will play on her mind and often prevent her from sleeping. Quite often she will sit up all night. And earlier this year there was one big worry. Our daughter, Sandra, is a nurse and is also in the Territorial Army and in February she was whisked off to Iraq to spend five months over there building and manning a field hospital. Our only contact was via forces air-mail letters - “blueys” - and these usually took a couple of weeks to arrive. Marg wrote letter after letter to Sandra, sometimes sitting up all night producing a whole string of letters – I guess that it was her way of coping with the stress.
I’ve had one holiday without Marg – I took our granddaughter to South America for a couple of week’s last year (2002) as an 18th birthday present (it was really a present for me as I needed a break and did not want to go away on my own). I did not really enjoy the trip – I was too worried about how Marg was coping on her own back home. I phoned daily and she put on a brave face, but I could tell that she was missing me and I was definitely missing her. I think that adventurous holidays are now off the radar, but recently Marg has been talking about some Mediterranean sunshine so perhaps next year..... we’ll see.
Marg is now 67; I’m a little younger. By that age, both my parents had died….. and Marg is still (relatively speaking) going strong!
Has MS changed our lives? Yes, of course is has, but not always in a negative way. I doubt that we would have seen as much of our world without the stimulus to get on with it before MS prevented us from doing so.
Am I happy with my lot? Yes. Obviously, I would not have wished for Marg to contract MS, but she did and that’s that. I was not going to stop loving her because of it and, if anything, it has brought us closer together.
What will the future bring? God only knows (literally), but whatever it is I’m sure that we will work our way through it. Marg is certainly a battler and she gives me strength to carry on.
I stumbled across Paul’s web-site almost be accident and found the personal stories most informative. For those of you reading this, my message is clear – MS is not the end of the world, either for the sufferer or for their partner.
You can email Ken by clicking this link.
© Ken Short, 2003