In 2006, after running a (5 star) fully-accessible holiday centre for five years, we decided to move on. It had been incredibly rewarding helping others and to ‘put something back’, but we decided to sell in March 2006.
I was a fit 6’4” tall, strong man aged 51. In November 2006 at a function I fell. One minute I was standing there, the next I was on the floor. People around me helped me up (much to my embarrassment) a couple of minutes later, down I went again. I know that people thought I was drunk, but had drunk just two glasses of wine all evening.
I had been suffering violent electric shocks that would suddenly shoot down a leg, or down an arm, if I moved my head I could bring on these electric shocks. I was unable to lift my arms above my head and I had limited movement. I had also noticed that I would lose all feeling in a finger, or my thumb. These symptoms had been going on for about three months so I decided I should see my doctor. He asked many questions and said he thought it may be demylination, when I acted shocked he asked if I knew what it meant. I did of course as we used to have 1,000 people stay at our holiday centre every year, of which 70% had MS. He referred me to a neurologist. However, before I saw him I deteriorated rapidly and had to return to the doctors to request a walking stick. was so embarrassed, this 6’4” strong and fit man now dragging his feet and using a stick.
Owing to the fast decline, and despite not having private medical insurance, I decided to pay to see the neurologist privately, otherwise I would have had to wait for weeks and weeks. By the time I saw the consultant neurologist, I had already carried out extensive research of what could be causing these symptoms . . . Brain tumour? MND? MS?
The consultant was dreadful, and simply assured me that there was nothing wrong with me - somewhere I still have the letter. I insisted on further tests and eventually I had a lumbar puncture, it was inconclusive he said, but there is nothing wrong with you. I forget the exact medical phrase he used, but he implied it was psychosomatic or ‘all in my head’. I asked for a second opinion and saw another neurologist, a colleague of the first one. He carried out all the same tests: tickling the bottom of your feet, touch his finger then my nose, legs up, etc. He reported some motor function abnormalities but no diagnosis. I was referred back to my original neurologist for the results, again I was assured there was nothing wrong with me. Eventually, in exasperation, I asked what he was going to say when I returned in a wheelchair unable to walk. He simply asked if I wanted another opinion to which I answered definitely!
I was referred to another neurologist in Bristol who was the total opposite of my original neurologist. He had studied all my notes in detail which he had in front of him; but by this time I was needing two walking sticks. He was gentle, kind and patient and the first question he asked me was "What do YOU think may be causing this?" I replied that I had researched it and I thought it may be MS, he replied, "I think you may be right, but let’s carry out some further tests". He ordered another MRI, another lumbar puncture and then Sensory Evoked Potential tests. This all took several months, but when I returned to him for the results, he reported that the lumbar puncture did not show MS and the MRI also had not shown any significant damage or lesions. However, the Sensory Evoked Potential tests had shown every sign of it being MS. He said that he had ruled out MND or a brain tumour and that it wasn’t syphilis (I have only one partner, my wife, who I married at 22 and we are still together and very happy).
When we left this appointment we (my wife Sue and I) were still unsure what his diagnosis was. When I saw my doctor, as the symptoms became worse, I asked if he had received anything from the neurologist providing us with a diagnosis. He reported that he hadn’t. I phoned the nerologist's secretary and mentioned that we were unsure of what he thought. At the next appointment he asked me what I knew about MS and I informed him of our background and running an accesible oliday centre . He replied, "Then you know that there is no cure? We can use certain drugs to help with the symptoms, but it is incurable". I asked, "So you are saying that I have MS?". He replied "You have late onset progressive MS. I’m sorry". When I questioned him about the MRI and the lumbar puncture not showing MS, he informed me that it was very rare, very rare indeed, but 5% of people with MS are not picked-up on a lumbar puncture or MRI, but the Sensory Evoked Potential tests and my clinical condition provided the evidence he needed.
On 17th December 2011, a letter arrived from the neurologist confirming our conversation.
So a five year journey, of which the early years were spent wondering if I had MND or a brain tumour and just a couple of years to live. Sue and I read the letter together and we just cried. This wasn’t what we had planned for our autumn years, this was when we were going to travel, we loved walking and we had planned so much once the children had flown the nest. I had even bought a car to enter classic rallies.
So how did I feel when I read it in black and white?
- Firstly relief. It was what I had thought it was and I wasn’t going to die imminently.
- Great sadness. Throughout this prolonged process at the back of my mind I had always hoped that they would suddenly say "Oh it’s this. . . take these drugs and it will be cured".
- Frustration. As someone who was so fit and strong, who would cut his own hedges, climb ladders to clean out gutters or paint the outside of the house and windows, tinker with classic cars, install a bathroom or kitchen, help-out friends and neighbours with physical jobs – I had lost the ability to do any of these. I can manage to clean my car as I can lean on it as I walk around it and, if I get too tired, I have been known to finish leathering it off sitting on my mobility scooter!
- Acceptance - after all I had been living with it for five years. Five years with a deteriorating body, even with two walking sticks the length of time and distance I could walk had dropped dramatically. I can manage about 100 metres using two crutches (preferred) or two sticks on a good day, but I had already bought a mobility scooter to get around the village and a folding one for the boot of the car.
- Finally, readjustment – although that has taken a little longer. The human being is excellent at adapting to changing circumstances, so we look for the positives. . . the things that we can do and manage rather than dwelling on those that we can’t. I use the ‘We’ as Sue my wife is in this with me. The lawn mower is now a ride-on so I can still cut the lawn, but other physical jobs are beyond me. I have learned not to use all my energy in one go. Each morning I have a partially charged battery, if I do too much, I end up exhausted by midday. The odd lie down and nap in the afternoons is now quite common and I never send out an important paper without getting Sue to check it – foggy brain! Holidays have changed dramatically, I can still drive fine and was checked (at my request) by the IAM (Institute of Advanced Motorists), but these days the car has to be an automatic with power steering, cruise control and definitely air conditioning. We returned two weeks ago from a 2,400 mile tour in Europe that covered France, Germany, Switzerland and Italy. Yes we have to ensure they have adapted rooms, or at a minimum a walk-in shower, a car park close to the hotel, no steps if at all possible and air conditioning. I can get to the pool and in if it has gentle steps and Sue helps me although my swimming days are over as my arms are so weak. But walking up and down in the pool unaided is bliss. I get some very strange looks, but people will never know the thrill of being able to walk unaided with no fear of falling down. Many of those ‘friends’ that we made when running our holiday business have died. The rule* that you have on average 20 years to live from diagnosis seems quite accurate, so we are doing all that we want to, but pacing ourselves so we can enjoy my period of 20 years. If it’s from the onset of MS, I have 10 years left, but I prefer to base it on the receipt of ‘that’ letter in 2011, which means I have until 2031 to tick off all the things on my ‘Bucket List’. If I’m being selfish, I would love to see my grandchildren married and meet at least one great grandchild. . .
*There are a number of different views on life expectancy and MS, but not one definitive 'rule'. MS is not a terminal condition and long-term studies suggest that multiple sclerosis only has a small impact on life expectancy. A study in Canada examined this area in terms of level of disability and found that life expectancy for those people whose experience of MS ranged from no symptoms to full time use of a manual wheelchair (less than or equal to 7.0 on the Expanded Disability Status Scale (EDSS) was only slightly reduced. The research found that people with more complex disability (EDSS greater than or equal to 7.5) were more at risk of potentially life threatening complications - such as respiratory or cardiovascular problems - that can result from reduced mobility, and this affected the average overall life expectancy figures. With this group included, overall life expectancy for people with MS was about six to seven years less than that for the general population. For more information, see our A to Z of MS.