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The start of my MS adventure

Let me begin …

For a number of years I was working in America, in a senior role and life was good. I had visited over 30 states, had a good circle of friends and a love life that was perfect. In fact, life couldn’t really have been better and to a degree I was feeling good.

All this was about to change gradually as there were a few little incidents and feelings, that took place that were not the norm for someone who was reasonably fit and strong and had the ability to tackle most things with ease. I would often drive for long periods of time effortlessly; walk or run miles without a care and exercise daily (in the vain hope of looking good!)

The first thing I noticed was a strange tingling running through my body when looking to aim correctly when peeing - my chin was resting on my chest confirming the aim was good, away I went and a good aim was achieved but accompanied by this tingling sensation, not painful – in fact I’d go as far as to say it was almost pleasant! However this tingling did become increasingly frequent which I put down to getting older!!!

Another not so pleasant sensation which was actually quite painful and annoying came at the top of my right arm and shoulder. This was diagnosed as shingles, (a very expensive conclusion by a very impatient emergency clinic in the States) which I accepted and treated as best I could while being a little sceptical as to whether this was indeed shingles - but then again what did I know?

Also during this period I was stumbling and tripping up but what was even more worrying was an incident on my motorbike which happened after leaving a friends’ restaurant. My right leg had some sort of spasm and the involuntary movement onto the rear brake caused the bike to skid and fall onto me. I was battered and bruised (luckily the bike escaped un-damaged!)

By now there were a number of things that were causing me to worry - although the fact I was losing weight didn’t! I thought wearing tighter jeans was quite cool but the other body issues were of concern and I suppose the worry of work also took its toll.

That was when I made the decision to move in with my girlfriend. I say I made the decision when in fact I think it was actually her suggestion as she could see I was not well. Moving in with her was a blessing as we were a good match and she had a calming effect that I now know I really needed. Whilst there I slept a lot and started to eat all that is considered healthy and normally green in colour!!! I decided to visit the UK and see exactly what was wrong with me. I had thought it could be a disc problem as years ago I had had one removed. How wrong was I??!

The constant stumbling whilst walking were becoming more noticeable and my general weakness was also a worry. I returned to the States and celebrated Christmas but at that time I had no idea it would be my last trip as a permanent resident.

In January I was back in the UK and tests were planned but on that particular day I had noticed my body seemed weak and I had difficulty standing. In fact I was pathetically weak and needed help which was bloody ridiculous; me needing help. I am sure that all this had been building up over a long time and I know that perhaps denial had played a part but I am a proud, stubborn male and whatever was going on I would beat. But there I was, weak and broken and on my way to hospital and I suppose this is now where I begin the diary (or blog as I believe is the recognised term) and I will attempt to tell the story of being diagnosed with MS, the impact on my life, my family, those I loved far away, my work and how I personally dealt, and am continuing to deal, with life.

So now I begin to talk about what happened nearly four years ago.

When you’re about to slide into an MRI machine which is able to obtain images of your whole body, there is an element of concern as you find yourself in a very confined space with your nose almost rubbing on the scanner wall and the noise is actually quite overpowering! I’m fortunate in as much as I can totally switch off and occasionally even fall asleep – I’m sure there will be people reading this thinking there is no way he could sleep -but I genuinely did; the only fear I had was breaking wind as it was so enclosed I was worried the smell might overpower not only me but the poor staff as well!!!

It seemed like I was encased forever but then a voice through a speaker informed that the scan was done and I began to slide into daylight (with my dignity intact). Over a period of time I was to visit the MRI scanning team several times as they needed more images to check if there were any changes. I also had to have a CT scan to take images of the brain. This was not as traumatic as previous scans but having recently lost my younger brother from a brain tumour, I obviously had worries. I did my best to dismiss them and not show my concerns as it was also deeply upsetting for my Mother. The results were sent to the Consultant who by then had hopefully got enough evidence to diagnose me and offer medication.

When I had what I now realise was my first relapse, and was admitted to hospital, I was surprised when a drip was introduced and I was informed that steroids would be pumped into me. This was both surprising and a little strange as I naively associated steroids with muscle-bound gym goers or track athletes to enhance their performance - so was I going to bulk up or start running?! After an hour or so a Consultant came and explained exactly what the steroids were doing. To this day I confess to still being a little confused about steroids but I understand MS is a nerve problem where the protective nerve covering (myelin sheath) is affected so steroids apparently help as a quick aid to get the body working again; Amazing!! While in hospital the next procedure it was suggested I have was a Lumber Puncture. For those who may be a little squeamish jump the next few lines!!

A youngish doctor came to my bed and explained that a needle (of not insignificant size) would be put into my spine to extract fluid which would give a definite diagnosis. Oh boy, this was going to be painful and it took two attempts to get the needle as I was asked to sit on the edge of the bed and lean forward. I endured this whole nightmarish procedure and they did indeed achieve insertion and fluid was finally taken. I asked the young doctor whilst the needle was going in how he had trained to do this. He smiled, nodded and remarked that I was one of only a few he had done! Bloody marvellous.

Sadly, the results confirmed what we already knew. I had MS and MS was now going to be the thing that every medical person and family and friends around me would talk about.

I gradually started to accept there was something very wrong with me while still being very unsure about my new diagnosis. And then the second relapse was about to hit me - I was at home and completely useless so a doctor was called out who prescribed steroids in tablet form and quickly I began to improve. I had two relapses and my MS level was beginning to be noted (apparently there are three main ones)

For me all this was crazy and I soon began to realise how much my life was about to change.

My life was about to change - My Bournemouth soul searching ...

With all this going on my life was changing and there was one major issue that had to be addressed - America. Plus my relationship over there, finances, life in general. What was I going to do? To be honest what could I do as I suppose I was kidding myself at the time that I could beat this even though deep down I knew I couldn’t. So I planned a trip to the States which was very risky I know, but sod it, life had to go on and I had things to sort out. Before I flew out I booked a visit to one of my favourite places in the UK - Bournemouth, where I booked a hotel and a beach hut for a couple of days. I knew I could be alone and really think about everything.

On the first day there I got my keys to the beach hut and boy was I struggling, walking like Quasi Modo dragging my right leg but I managed it and found my hut. It was lovely with the sound of the sea and just generally being in a relaxing place. “Tomorrow” I thought, everything would be sorted so off I set to find the hotel. That too was quite nice, very close to the beach and really convenient. I parked in central Bournemouth and headed for where I knew I would find a restaurant but I had set myself a task that normally would need no thought - a brisk walk and I would be there, but hey I have MS, bloody nuisance but I was determined I would not let it beat me so again, dragging the right leg and finding it hard to move I stopped at a bar (which in all honesty was not a choice I would normally have made) but I could go no further. The waitress took pity on me, she actually looked sorry for me, so my usual flirty manner took a back seat as I really did feel awful and ordered a basic pie and chips with beer - food I now know probably wasn’t the best choice! Once I had finished and rested, I struggled back to the car and then to the hotel room. This MS was becoming a real inconvenience! The following day I made my way to the beach hut and the thinking began.

The day started quite calmly and I had in mind all the issues that needed addressing but there was something very strange going on with me; an uncontrollable emotional breakdown. I was simple sobbing at the thought of the people dearest to me – firstly my Son. How was he feeling? Was he understanding everything that was happening and about to happen to me? Then my mother. She had lost one son and I was sure, like me, thought that perhaps my time had come - because at the time I had no real idea what was happening. Then I started thinking about my partner in America and my ex-wife (who, regardless of where we were) has, and always will be a huge part of my life. How were they feeling and what could I now offer them and any other member of my family? It was supposed to be a day of sitting and mentally sorting things out which was completely wasted as I sat, feeling sorry for myself and thinking why me? Why has it all gone pear shaped? I suppose in retrospect it was a natural thought pattern and to be emotional was indeed all part of my illness, coupled with the effects of the medication but none the less a day wasted in my opinion. But I brushed myself down and convinced myself that tomorrow I would sort my head out and I did. No more self-pity and a plan of action was firmly embedded. When I’d done with the soul-searching and was reasonably happy that I’d found decent conclusions, it was time to return home and put things into action.

Back to the illness - I had noticed a severe shooting pain in the right side of my face. The pain was unbearable and the slightest touch was enough to make me swear, (something I do anyway but this pain really made me want to scream!!) Over a period of time eating started to be too painful so a trip to my local GP was booked. I have to be careful here as my GPs have been very good but every time I visited in the past (and, as I was to discover, the future) regardless of what I went for, ‘MS’ was always the answer and it bloody infuriated me. “Severe pain in the face? That, Mr Southall, is common with MS sufferers”. Never once did something positive come from having MS. But this pain in the face, known as Trigeminal Neuralgia is, without question, the most painful thing I have ever experienced and I’ve always had a high threshold to pain. I was prescribed various different pain killers, all of which had side effects. I was a wreck, I had no balance, I was constantly sleeping and weak with loss of memory and at times my speech was slurred but regardless of all this, I was determined to get across the pond to the States as I needed to talk to the Someone who was to become my ex-partner; the woman I now realise kept me going for such a long time with her soups and green goodness and all the healthy vitamins she bought me. In fact she really showed how much she loved me by doing all this and it was up to me now to thank her and let her go. This was part of my ‘beach hut time’ and perhaps the biggest and most painful thing I have ever done.

Every time I set foot on American soil I felt at home; driving over the Sunshine Bridge just outside Tampa put a smile on my face, as did driving down the I75 and off at junction 205 for Sarasota, pulling up at my friends’ place for two weeks, saying hello to as many of my friends as possible. And then of course the meeting with my partner/lover which was painful. I also discovered my new problem with the heat, which also slowed me down, and yes, heat and MS really do not go together.

Since being diagnosed I’ve been back and forth to the States, staying with my mate and on one visit I actually went on a road trip with my mother to Elvis’s home in Memphis. I showed her exactly where I had been living for the past few years and generally gave her a good time which she loved.

It was later that I decided to close down the business I’d been working on as I knew I would never be able to return to America full time which was sad but another of the decisions made in the beach hut in sunny Bournemouth.

I will return to my trips to America and tell you more about my visits as I feel there is more to say later.

So a quick recap; Trigeminal Neuralgia, Progressive MS , closure on a relationship in the States and generally getting on with life in the UK - and an imminent move into a bungalow along with getting help with walking - the next part of my story.

The next part of my story - accomodation, new drugs, and leg brace

Looking at a bungalow - no tripping hazards, a single bedroom along with a wet room and kitchen with living room was not what I expected to be living in at my time of life but this illness was changing my life and I had to do what I had to do. My sister, who has been there from the start and pushed for everything to make my life easier, identified a bungalow that became my home; a nice little place that has been decorated and furnished to make me comfortable, in what is called a sheltered community. I have settled down well and made some nice friends which is something else I will come back to and discuss in detail about my life here and the people around me.

The new drugs for both my MS and the Neuralgia was making walking very difficult and I was offered a brace that slid into my shoe and raised my right foot. This condition is known as Drop Foot and is yet another bloody product of MS and the reason I had been struggling to walk and kept falling. It is also the reason I had to have an adapted car, driven using my hand as the Drop Foot was getting worse, stopping me from using an accelerator. Really, is there much else that can go wrong with me?!! The leg brace really did help but along with all my other issues - lack of balance, dizziness, painful face and general lack of confidence, I did start to shut myself away and apart from those really close to me I didn’t mix. I don’t think people could really understand the pain I was in with the Neuralgia and the frustration of tripping, potentially falling and general clumsiness I was suffering. In quiet times I sat on my own, often watching people walking their dogs past my window and I longed to do the same. In the mornings when just getting up was a problem I thought “for God’s sake give me a break” but then I’d think about my younger brother and thought, “there but for the grace of God go I” and I’m also aware of kids who suffer so really I have little reason to complain - but obviously there are the dark moments.

Anyway a leg brace was used in the early stages but now I am bionic! I am using EFS electronic pads that enable me to walk and I must say that whilst it may not be perfect, I can actually walk and it has given me a new lease of life. On decent MS days I can get around the house, even go shopping using a cane, and where possible a trolley or electric scooter, so I have really settled into my limitations!!! EFS Electronic Functional Stimulation is absolutely amazing and the staff are superb, caring, thoughtful and together they have given me a little independence.

My walking I suppose is as good as it’s going to be; I’ll never walk up hills, do a marathon or dance like Fred Astaire but I do the best I can and I feel that I’m improving. Whilst the EFS gave me the ability to move, I needed to sort out the pain in my face. The Trigeminal Neuralgia was preventing me from eating, talking and generally meeting people (don’t even mention the opposite sex as the drugs were killing any desire and neuralgia restricted my kissing anyway!) and if someone was to touch my cheek I could probably kill !! The QE Hospital had been able to get me in for an operation to coat the nerves that were giving me the pain, needles were slid into my face from the chin to the back of my right eye and by the right ear which sounds awful and looked awful but was needed. To be honest I was under general anaesthetic so I knew nothing anyway. I was told of the risks and indeed the likelihood that it may not work but trust me, I needed to do something. When I came round I am not sure exactly what to say about how I felt; ecstatic, emotional, happy, hungry or all of these? I gingerly touched the side of my face and it felt ok, a little frozen, but OK. I ordered Chicken Pie, something I dared not to eat as it would have been painful but I ate the lot. It appeared to have been successful and every morning since I still expect the pain to return but thank God it hasn’t and it is over a year now. A year pain free apart from a little numbness in the corner of the mouth and my eye and now all I needed to do was focus on the constant drowsiness, giddiness and infections that I was getting. The combination of all this and my general health issues had led to me being classed as disabled - I know, disabled, with a Blue Badge to assist in the days where walking was a big issue and the MS had kicked in. So an adapted car to enable me to drive, and an electric scooter as I could no longer manage distances (although vanity prevents me using one in my home town, Bromsgrove) as I am convinced people will jeer and throw rotten fruit and veg at me!! No, my world was definitely a different one and I didn’t appear to be getting any stronger and with the drug I was taking for my MS I was told I now had a brain virus known as the JC Virus. So, looking at this situation, I am taking a drug that is killing my white blood count, which should protect me from illness and infections and I am having blood taken along with regular scans revealing a brain virus on top of everything else, so I think it may be time for a serious chat with my Consultant!!

It’s January 2018, I have dealt with a lot over the past few years, life changing events, an illness that has prevented me from doing a job I was good at and recognised for, which has stopped me from being the outgoing person who could command a group and make people laugh; someone who was always the first to step in and help both physically and emotionally. And now I’m someone who people feel sorry for, (not all, but some) and someone who now lacks the confidence to walk across a room if there is a crowd, and someone that has not let anyone get too close, which is a complete change and perhaps things could get worse but not without a fight. So I’m about to see my Consultant and he informs me of exactly what I already knew deep down - the drug I was on had not worked and in fact had made me worse! I needed to stop immediately but continue with the pain killers and various other pills that protect my organs. Great! Months wasted but at least this offered a chance to reverse the effects and hopefully I would see an improvement. My consultant referred me to my MS nurse where a replacement drug was to be discussed; this appointment was a few weeks away so in my mind I had time to think and evaluate. I also had mountains of advice regarding the correct things to eat and the various options regarding treatment. Going back in time a little, I was given a book to read, and by the way, the last book I read was Moby Dick at school. I do not read as I cannot sit still, when driving through the States I had audio books, all autobiographies but this book, (yes on MS) was by Dr Wahl, the first and perhaps the last name I will actually mention. This lady, a GP in Massachusetts, had MS and stopped all medication and changed her diet. She had improved tremendously but I am afraid for me, there are some bits of food I really cannot consider! My partner used to feed me a lot of it and I am sure it really does help but it was the fact that Dr Wahl stopped a lot of her medication that made me think - perhaps I should see exactly what happens to me and look at the risks involved, what exactly can happen to me and what are the benefits to going back on a drug but importantly what are the negatives?

My first meeting with the MS nurse went well, she really is a lovely lady but I am not sure she quite expected things to turn out like they did as not only was I considerably stronger and more alert but I wanted to continue staying off any MS drug to give my body longer to recover and get some normality to my bloods and myself in general. I asked what risks were involved with travel as I had insurance, I now understood my body and my limitations and I’d booked to visit friends in the States again. The nurse was pleasantly surprised and agreed all should be fine and a meeting was arranged along with a complete list of potential drugs. I was determined to travel whilst it was cooler over there and had booked to go in the middle of February. On arrival back in the States all the old feelings came flooding back and arriving at my friends place he instantly noticed the difference in me and my general improvements in stability. I had a relaxing couple of weeks and met up with friends and my ex partner who was also pleasantly surprised and yes, I was pleased to see her.

My friend had purchase CBD oil for me and I started using it. Is it doing me any good? Well I am feeling good but is this due to the oil? I don’t know but reading the reviews and listening to people that care, I would say that I intend to carry on using it.

I really had a great trouble free time, no health scares and I even managed a drive to Miami for a meeting, like the good old days. I felt this had put my mind at complete rest, the business had to close and free my hopes and thoughts to focus on other new ventures. I knew I would be back as the States was my home and that will never change. I packed and headed back to the UK. British Airways is a superb airline when assisting people who struggle with walking and standing for any length of time and it is because of their help and support I am able to fly so a quick note of thanks there.

Back in the UK I am really understanding my illness - when I have done a little, I rest a little and when I have done a lot, like visiting mother and having lunch all in the same day I know the likelihood is that I’ll have a slow day ahead. I suppose my body is telling me to stop before it actually shuts down; a little dramatic but I genuinely believe that to be the case and I really do believe my understanding of MS has improved along with feeling better as I no longer have infections and apart from the odd dropping off to sleep I am doing a lot better. Falling asleep by the way, is a nuisance and I will explain further. One example is a programme I watch called Football Focus on a Saturday - I would sit and listen intently then the next thing I know another programme is on, I’ve missed my football results! Dropping off at the strangest of times happens frequently and I accept it, I don’t like it but there you are.

That really is me up to date as at February 2018. I will now write a monthly record the first of which will be March followed of course by April. I will take you back to memories I may have of earlier times and things that I believe are relevant but I will try not to use names as I really am new to all this and I just hope I can give an understanding of Multiple Sclerosis and how I am coping (or not) with this illness. I hope to bring people into this as family and friends are important and I will relay the constant miracle cures that I am emailed with and I hope that people’s attitudes and views will change, not only to me but sufferers in general and sufferers not only of MS but the string of illnesses we tend to hide away from.

I hope the start of this you find interesting and I will soon have the next instalment completed