MS

January 23, 2017

MS diagnosis: Great Dane or Chihuahua?


My arrival at an MS diagnosis was an unconventional one, to say the least.

Having been a long time slave to chronic back pain, when I woke up one day in 2006 numb from the waist down, I automatically assumed it was another complication. I had recently had an epidural injection which had successfully reduced the pain, but this was a whole new phenomenon and so I got straight on to my orthopaedic surgeon who agreed to see me straight away.

I hobbled in to his office like Bambi on ice, lurching from one piece of furniture to the next as no way was I going to use a wheelchair or a poxy walking stick; they’re for old gits and paraplegics! He came to the immediate conclusion that after twenty years of struggling with intermittent bouts of crippling pain, this was the thing that tipped the balance and now was the time for surgery. But, before he wielded his scalpel, he wanted me to have yet another MRI scan and come back to see him the following week to go through all the options and schedule the operation.

Over the next few days the numbness and tingling spread all down my left side from my scalp, down my face, tongue and left arm, down to my fingertips. The skin on my legs felt too tight, like sausages in a pan that needed to be pricked, but they also felt heavy, like I was wearing concrete boots. The muscles around my stomach were in spasm and it felt like I was wearing a really tight belt.

This was bizarre and the thought of spinal surgery filled me with dread. I’ve had a life long phobia of hospitals and the medical profession, avoiding them both at all costs, so the prospect of a major operation was not something I relished. However, as the surgeon himself said, I couldn’t live like this and so if an operation could cure it I would need to get a grip and stop being so pathetic.

So, when I wobbled back to his consulting room a week later I was reconciled to the fact that surgery was the solution and was ready to schedule a date. But I was totally blindsided by the following statement:

“You can’t have surgery, you’ve got MS. I can’t tell you if you’re dealing with a Chihuahua or a Great Dane, I will refer you to a neurologist. There’s nothing I can do for you.”

That was it. My MS diagnosis was as brutal as that. Just wham, bam, thank you and good night.

I was in and out of his office within three minutes. And this was private healthcare too! I was fortunate to have BUPA cover from my employer at the time, but I can only assume the surgeon hadn’t read the memo about bedside manner and how to break bad news with a degree of compassion!

I went out to reception, told my mum the bombshell and we drove home in silence. The only thing I remember her saying to me was that I would have to start smoking cannabis, as that’s what people with MS do. When we got back to my parent’s house I broke the news to my dad with a wisecrack about being eligible for a Blue Badge……every cloud and all that crap!
I knew nothing about MS. It had never been mentioned as even a remote possibility and so I was in total shock. This was a body blow. I spent the next couple of weeks feverishly researching everything I could about it whilst I was waiting for my referral to the neurologist.
And the more I Googled, the more things fell in to place.

Several years earlier, following a car accident where I had sustained whiplash, I had lost the sight in one eye and my left arm had gone numb for a period of time. Both had completely resolved after a few months, but had been put down to the bang to my head.

The year before, I had been on holiday to Thailand with my buddy The Pipster. We were walking in to a restaurant one evening and suddenly, without any warning, my legs collapsed beneath me and I went down like a sack of spuds and couldn’t get up. This was largely because I was was in a fit of hysterical laughter, but also due to my legs being transformed to useless lumps of jelly. The laughter was exacerbated when the poor Thai lady welcoming us to the eatery was mortified at my calamity and desperate to assist me to my feet, but she was told by The Pipster to “ignore her, she does this all the time”.

Don’t judge her too harshly. We’ve known each other for over forty years; banter and mutual mickey taking is the way we roll.

Just  months earlier The Pipster and I had been to New York; she was on a business trip and kindly used her air miles to pay for a ticket for me to accompany her and turn it into a holiday. Rather inconveniently, she did actually have to do some work while we were there, so on the day she had to go in to the office I chose to hit the sales.

I spent the day trawling through the multitude of bargains on offer in Macy’s and, quite literally, shopped until I dropped. I couldn’t understand why my legs kept filling up with lead and I had to keep having coffee breaks every hour to revive my very weary limbs.

At the end of the day, laden with bags full of “must haves”, I was stumbling around outside the mall, wondering how the hell I was going to make it back to the hotel and why my legs were doing this, when a kind security guard took pity on me. He found a chair and insisted I take a seat while he called a cab to take me home. With hindsight, I suspect he probably thought I was drunk. But I was very grateful for his help and after I had sat for a few minutes my legs had recovered sufficient strength to get me back to the hotel and show The Pipster my many purchases.

As I had suffered several bouts of sciatica over the years, which were all caused by my deteriorating spine and bulging discs, I had just assumed that all of these episodes of weak and wobbly legs were attributable to the same thing; so had the orthopaedic surgeon. But as soon as I began reading up about MS and the many and various gifts it brings with it, it all made perfect sense. I can’t actually believe now that it took so long for him to consider it as an option.

By the time the neurologist’s appointment came around I’d had time to get used to the idea and was anxious to hear what form of MS I had and if I would be eligible for treatment. My research had revealed that there were several different types of MS; if I had either Primary or Secondary Progressive MS then the treatment options were very limited.

At this stage my symptoms had improved, the numbness and tingling was easing and my legs were gradually increasing in strength. But it was with a degree of trepidation that I hobbled in to that appointment, and this time I dragged my mum in with me for moral support and to ensure she heard everything straight from the horse’s mouth, rather than me having to relay it all after the event.

He gave me a full examination, took my medical history, talked me through my scans by pointing out the numerous lesions on my brain and spinal cord, and told me my diagnosis was unequivocal; I had Relapsing Remitting MS. This meant I was eligible for disease modifying drugs which I would need to self inject, and he would refer me to one of his colleagues who would prescribe them for me under the NHS. I’m glad to say he was very charming and answered all of our questions very patiently, the total antithesis to his surgeon colleague which made a pleasant change.

And so that is how my rocky journey with MS commenced. Within a couple of months, a nurse had visited my home and I was injecting myself with Beta Interferon three times a week, which slowed the relapses down and I was well enough to go back to work.

Going back to the surgeon’s delightful and sensitive analogy, I wouldn’t say that my particular flavour of MS falls within either the Chihuahua or Great Dane breed. Everyone with MS experiences something different and unique; no two people’s symptoms are exactly the same.

I  regard my MS, not as a thoroughbred, but as a pesky, ill-trained mongrel. After almost eleven years of living together, I’ve learned how to co-habit with it and roll with the punches. But, every now and then, it bites me on the bum or nips my heels to remind me who really is the boss of this relationship.

If you have any comments or similar experiences I would love to hear from you.

October 1, 2016

MS Sufferer – dirty word or badge of honour?

For those of us with multiple sclerosis, the term MS sufferer crops up time and time again. Usually it’s in a news article reporting an incidence of discrimination or a breakthrough in research, but whatever the context, what never ceases to amaze me is people’s reaction to the word “sufferer”.

So many people I know who have MS throw their hands up in horror at the very mention of the word, as if it is in some way shameful.

Don’t get me wrong, I do not wish to be defined by this condition and there are many more facets and qualities to me than simply having MS. I also consider myself fortunate that my scale of disability is relatively mild compared to many I know, and yet I am fully aware that I could wake up tomorrow a paraplegic. It is such a varied condition that no two people are affected in the same way, and each individual may experience a multitude of different symptoms on a daily basis.

However, anyone who has MS, however mild or aggressive their particular flavour of it is, it has an impact on their life. They will undoubtedly have suffered at some point and probably do so almost all the time, but they don’t even think about it because adjusting to accommodate becomes an unconscious reflex.

If it takes you an hour and a half to get up and dressed in the morning, you are suffering.

If you experience chronic pain, numbness and weakness, or have no sense of balance which means you cannot walk unaided, you are suffering.

If fatigue means you have to reduce your working hours which results in your chances of promotion being diminished, or you lose your job altogether because brain fog means you simply cannot function at an acceptable pace, you are suffering.

If you cannot pop down to the shop to pick up a pint of milk on a whim because you cannot be sure there will be a parking space within hobbling distance, you are suffering.

If you cannot have a hot bath or shower because it causes your legs to go numb or collapse, you are suffering.

If you are reliant upon others to help you with your personal care because you don’t have the dexterity to hold your own toothbrush, you are suffering.

And if you are deluded enough to think that you are not suffering personally, please ask your partners, friends and children (who by default become your carers) their opinion on this apparently dirty word.

There is no shame in admitting that we suffer. It is not a sign of weakness.

If we don’t suffer, why do we need disability benefits and disabled parking spaces, accessible loos or reasonable adjustments in the workplace?

If we ban the use of the word sufferer in the context of this cruel and pernicious condition, we lose the right to ask for the quest for a cure and improved treatments to continue. We cannot expect anyone to cough up their hard earned cash when we are rattling a tin under their nose or begging them to sponsor us for our wobbly walks. Why do we need an MS therapy centre and what is the point of having the MS Society to represent and support us if we don’t suffer?

MS sufferer is not a derogatory term and it’s time people stopped complaining about it. 

In the words of Forrest Gump, life with MS is like a box of chocolates; you never know what you’re gonna get. Because we suffer, by necessity we become brilliantly resourceful and find alternative methods of doing everyday tasks that non-MSers don’t even have to think about. 

Of course we are not simply sufferers, we are inventors, our lives are utterly unpredictable and yet we are meticulous planners. We are strategic masterminds, we are resilient, we are battlers and we are brave warriors.

There is no weakness in admitting to ourselves and others that life with MS is tough. On the contrary, it takes more strength of character to come out of denial and deal with the realities of the situation we find ourselves in.

I am an MS sufferer and I wear that title with pride, as a badge of honour.

 

September 2, 2016

A Grand Day Out – Highgrove Garden Tour

I have to be honest and say, whilst I’m not a Republican (I love the Queen and Prince Harry), I’m not a great fan of the Prince of Wales. At least, I wasn’t until I took the opportunity to take a tour of his private gardens at the Highgrove estate in Tetbury, Gloucestershire.

I happened upon the idea when I saw the housewives’ favourite, Alan Titchmarsh, waxing lyrical about the gardens on television one day in April. I’m not a great horticulturist myself but I’m inherently nosy and love to have a gander at other folks efforts, and so I suggested a day out with my mother who was delighted to accompany me, along with my great pal Pip and her mother. The gardens are open on selected dates between April and October each year, and after extensive consultation with the two grand dames, both of whom have jam packed social calendars (unlike their daughters), the first available date we could all make was 30 August. And so I duly booked us four tickets and we prayed for good weather.

The estate is situated in the heart of the Cotswolds which is a picture postcard perfect part of the world, especially on a glorious sunshine filled day which we were fortunate enough to be blessed with.

We were met at the gate by a friendly policeman who checked our names were on the list (if it’s not on the list you can’t come in, so don’t bother turning up on spec as you’ll be told to leave), and he directed us to the car park where our tickets and photo i.d. were inspected and we were soon parked up in a disabled space conveniently located right by the entrance. I consulted with a lady called Janet who was in charge of operations, for advice on whether my wheelchair or Luggie mobility scooter would be the most appropriate mode of transport for the tour and was delighted when she assured me the Luggie would be fine.

Our tour party assembled in the foyer where we were introduced to our guide Ginny and reminded of a few rules and regulations, mainly involving not using mobile phones or cameras on the premises, at which point my car alarm decided to burst forth in a successful bid to impart maximum embarrassment before we set off on our tour. There’s nothing like the blast of a few hundred decibels of an alarm in the serene surroundings of a Royal estate where people talk in hushed, reverential tones, which you have no idea how to switch off, to draw attention to oneself – as if buzzing around on a mobility scooter isn’t enough of an attention seeker. Welcome to the world of TeeJay!

Obviously I did the right thing and abdicated responsibility to Pip, who managed, after a bit of fumbling around, to silence the beast and our happy band set off.

The program starts with a short welcome video of HRH explaining a little about the history of the garden, what his vision was when he acquired Highgrove and his ethos of sustaining the environment, before you head off on a guided walk which lasts around two hours.

The estate covers an area of around 14 hectares and is made up of a series of individual gardens which are all interlinked, and all have their own distinct character. Ginny regaled us with various anecdotes in each one, for example how HRH had spotted a pair of ornate carved gates on the roadside in India and when he enquired whether they were for sale, the vendor, having ascertained who was asking, suddenly escalated the price. A deal was obviously struck and said gates now adorn the entrance to the Cottage Garden which is apparently inspired by the Prince’s travels around Tibet, and also contains a very charming oak summer house designed by the man himself and built from oak grown in the estate.

It was in this garden that an unfortunate slip of a gardener’s shears resulted in a topiary eagle’s head being re-fashioned into a tail and vice-versa. Apparently the gardener is still employed.

We headed on through the Sundial Garden which was full of colourful blooms, including cosmos and lobelia amongst many others. The boundaries were formed by high, neatly trimmed hedges in which were cut niches to house several busts of HRH. Ginny was anxious to make clear that this is not a shrine of narcissism, but a device designed to display some of the gifts he has been presented with on his travels.

I was surprised that the route took us right up to the front door of the house, from which there is a superb view across the rolling countryside to the spire of Tetbury church.

Next was the Wildflower Meadow which is awash with colour in the spring and early summer. We were too late in the season to see that but there are some magnificent old oak trees and I was very interested to see the traditional stooks of the recently cut hay. We were told about the trials of finding the correct breed of sheep to graze the meadow over the winter, which helps to tread the wildflower seed in to the soil. They first tried Hebridians which were simply too wild, they broke through the electric fence and disappeared into the countryside. Next were Welsh sheep who chose to climb the trees and eat the bark and so caused more harm to the environment than good. Finally they settled upon Shropshire sheep who have done a fine job and there is now a thriving population of several varieties of wild orchids amongst numerous other species of wildflower.

One of my favourite parts was the Kitchen Garden, not that I’m driven by my stomach of course! This is not your bog standard vegetable allotment. It is a walled courtyard with beds laid out in the shape of the Union flag, with a lily pond and fountain in the centre surrounded by herbs. The four corner beds have a huge variety of heritage fruit and vegetables growing not just in straight rows but in random triangles, strips and squares and over supports such as an archway avenue of runner beans. It’s all grown organically and what isn’t used by the household is donated to a local hospice. A charming feature was the willow bridge on the edge of the pond to allow amphibians safe passage.

The Stumpery is another enchanting section. Enclosed behind a Cotswold stone wall which incorporates numerous pieces of salvaged stone masonry (another one of the Prince’s interests), is a haven for all manner of wildlife and I suspect Hobbits dwell here too.

As the name suggests, this is a garden comprising of strategically placed tree stumps which have been smothered in ferns, hostas and other shade loving species, creating an ideal habitat for hedgehogs, insects, birds and a myriad of other fauna.

Our tour finished in the Carpet Garden which was HRH’s Chelsea Flower Show entry in 2001, it won a Silver Gilt medal. It is an Islamic garden based on the design of an Arab carpet and is in total contrast to the rest of the gardens, being full of brightly coloured ceramic tiles and is much more structured with hard landscaping, although equally beautiful.

What really struck me as we wandered around the grounds was, not only how beautifully it is maintained by a small team of (I think) twelve gardeners headed up by Debs Goodenough, but how informal it is. It’s extremely tastefully designed, and although it is evident that a great deal of money has been spent here, it is not at all ostentatious.

Highgrove is very much a private family home, not a Royal palace, and that is reflected in the gardens. This is a home which is used and enjoyed by the family, the Prince has planned and shaped it himself with this in mind and it was evident from various anecdotes Ginny told us that he regards it as somewhat of a personal sanctuary. He has masterminded this personal passion project since acquiring Highgrove in 1980 and it is clearly a labour of love.

In the introductory video he was keen to stress he wanted us to enjoy the experience and that any proceeds would go to his charitable foundation, which has unarguably done some fantastic work.

I was also super impressed with the overall accessibility, it is very wheelchair friendly. Everything is on a level. There are a variety of surfaces with some gravel (not sink up to your axles variety though, pretty firm, crushed stone), some Cotswold stone flag stones and some grass. Even the wildflower meadow has a type of mesh walkway sunk in to the grass to allow for easy walking and wheeling. There are a couple of steps in the Carpet Garden which means you can not access the water feature in the lower level in a wheelchair, but you can see it perfectly well from the upper terrace. Aside from that, everything was totally accessible.

If you don’t have your own wheelchair, Highgrove have several available to borrow for your tour, and they are equipped with chunky tyres suitable for traversing the garden terrain. I advise reserving one at the time of booking to ensure availability. You will have to provide your own “driver” though as that’s not part of the service and I think, due to the variety of different surfaces and I would estimate a couple of miles to cover, anyone other than the super fit would find self propelling pretty difficult. I was surprised that the Luggie handled it easily, although it might be a different story in wet weather.

I enjoyed the trip very much, it far exceeded my expectations and I feel privileged to have been allowed a glimpse of a very special place. At £25 per person (and a free companion ticket for disabled visitors), I thought it was good value for money. The tour itself was very slick and well managed, and Ginny was very knowledgable.

As I said, I wasn’t a particular fan of Prince Charles prior to my visit. Having visited his garden, however, I view him slightly differently. He is clearly a man of vision, determined to stay true to organic methodology and he will undoubtedly leave Highgrove an infinitely more beautiful place than when he arrived. If I had worked so hard to create it (yes, I know money is no obstacle and he’s got a battalion of staff to trim his bushes for him, but it’s still his home), I would be loath to share it with Joe Public. I have to admit, I have a growing admiration for him and I’m grateful to him for allowing me in to his world.

June 10, 2016

Mobility Roadshow 2016 – the clue is in the name!

I start this blog by saying this was an excellent exhibition, showcasing a selection of some of the best mobility aids and services currently available on the market to the disabled. Products ranging from accessible bathrooms, to magazines, to all terrain wheelchairs.
Where else can you test drive fully adapted cars? I use push/pull hand controls and have never been able to test drive a vehicle myself; I have to ride as a passenger and rely upon the opinion of either a friend or a car salesman (no prizes for guessing what his assessment will be) to decide on its’ suitability for my needs.

At the Roadshow there is a whole array of different makes and models, with a choice of adaptations ranging from the fairly basic requirements like my own to more complex needs for those who need to drive from their wheelchair, all available this year to test drive around Silverstone circuit. This is, without doubt, a fantastic innovation.

However (you just knew there was one of those coming didn’t you?), the access to this “fully accessible” event left something to be desired to say the least!

Opening time was 10am. By the time we arrived at 10.40am the car park adjacent to the venue was full and so we were directed to the overflow – some 4 miles away! We joined the queue to be bussed in and it was immediately apparent that we were in for a very long wait.

There were four mini-buses (2 in each direction) ferrying folk to and fro, but each one could take a maximum of 3 wheelchairs or scooters at a time, unless you could transfer to a seat in which case a couple more wheelchairs could be folded up on the bus.

When we arrived the queue was already 100 yards long and growing fast. Bearing in mind the demographic of the clientele for this event i.e. at least one member of each party was either a wheelchair or scooter user, this transport arrangement was very obviously woefully inadequate.

What is more, it was bitterly cold, threatening to rain and there was no shelter or seats for those who weren’t sat in their mobility aids.

Needless to say, there was plenty of harrumphing going on in the queue as when the bus did arrive it was painfully slow to load. This wasn’t the fault of the drivers, loading wheelchair users is obviously, by its’ very nature, a time consuming exercise and they needed to take great care. There were simply not enough vehicles provided.

I can walk and have a folding Luggie scooter so was lucky enough to be able to “ queue jump”, but astonishingly, the driver refused to take my folded up Luggie and insisted upon it going on the next bus! This meant that once we got off the bus outside the venue we had to wait another 25 minutes for the scooter to arrive.

Having arrived at 10.40 am, we eventually got in to the show at 12.10pm! And of course when we left at the end of the day we had exactly the same issue in reverse.

I’m sorry Mobility Roadshow, you know your client base! Whilst you organise a brilliant exhibition with some superb products on show, your organisation of transportation sucks!

I would love to go again next year but you really need to up your game.

C’mon guys – the clue is in the name! I really hope lessons have been learnt and it will be a more pleasant experience next year, because once you’re in it’s brilliant.

June 6, 2016

BOMA 7 – Beauty or Beast?

When I turned up for a charity walk in September, the last thing on my mind was taking an all-terrain wheelchair out for a spin.

The event in question was “Walk The MS Mile” in aid of Chilterns MS Centre, a charity very close to my heart. I can walk, but not very far and certainly not for a mile, and so I came fully prepared with my manual wheelchair and the trusty Team TeeJay who promised to give me a push around the course in Aylesbury.

Molten Rock had kindly sponsored the event and brought along their highly innovative vehicle, the BOMA 7, to test drive.

Being a shy and retiring type, Linda Oatley, Chair and fellow patient of the MS Centre, staked her claim to the BOMA at first sight. And why wouldn’t she?

Before we had even left the car park, the BOMA was eliciting envious glances from passers-by. This is one funky looking piece of kit and to call it a wheelchair is a misnomer. In no way does this resemble a mobility aid; it’s more like a very groovy go-cart which anyone with a sense of fun and adventure, regardless of whether they are disabled or not, would love to take for a ride.

This point was proven when we reached Vale Park. Up to this point, we had been taking a fairly leisurely wheel along the public footpath and, although she was comfortable and clearly enjoying the experience, it was very evident that Linda was champing at the bit and dying to test the BOMA on some more challenging terrain.

No sooner had we entered the park gates than she was off like a greyhound out of the trap! She shot across the grass like a torpedo and headed straight for the skate park. I can only describe the kids’ faces as awe struck. They all abandoned their skate boards and stared open-mouthed as she bounced the BOMA up and down the concrete steps with consummate ease. “Lady, that is well sick!” declared one of the youngsters, to Linda’s obvious delight. I have to admit I sat in my wheelchair with just a hint of the green-eyed monster about me myself, feeling very much like the poor relation and knowing that I was missing out on a whole load of fun.

To my great surprise, given the obvious pleasure she was having, Linda offered to let me have a go. Well I didn’t need asking twice I can tell you, and once I had negotiated a rather ungainly embarkation process and caused much hilarity amongst the assembled crowd as all four of my limbs went in diametrically opposed directions, there was no holding me!

The BOMA is a surprisingly intuitive machine to drive. Steering is via handlebars with an inbuilt twist accelerator akin to a motorbike, when you release it the brake automatically activates so there is no fear of doing an impromptu somersault which has been known to occur when yours truly takes to two wheels, but that is a story for another day!

There is a tortoise or hare setting with a maximum speed of 8mph and as we were now confined to the footpath again I chose the former. I trundled along merrily back to the car park at a suitably sedate pace, bumped up the kerbs and thoroughly enjoyed myself. It is a very comfortable ride which is extremely easy to use, and I can see there is enormous potential to restore one’s independence and open up areas which would otherwise be totally inaccessible to those with any kind of mobility impairment.

My very brief experience in no way tested the BOMA, it merely gave me a taster. Back in my dim and distant youth I used to enjoy orienteering, a pass time which is off limits for me now but with the BOMA’s off road capabilities it would be a real possibility.

Further enhancing the fun factor is the point that it levels the playing field between disabled and non-disabled. If you are a fan of outdoor pursuits, want to “run” through the muddy woods with your dog or go for a spin on a pebble beach with your buddies, you can now do so without relying upon them to push you.

Of course there are some practicalities to consider, such as how to transport and store it (although there is a bespoke trailer available and it can apparently fit in most MPVs), and the inevitable cost factor. The standard version with handlebars starts at £8,775(+VAT)* and there is a joystick version at £11,105(+VAT)*, plus there are numerous extras and customisation options available at extra cost, so this is most certainly not a cheap vehicle by anyone’s standards. There are however grant-giving organisations who may give funding, depending upon individual circumstances, and this is definitely an avenue worth exploring.

So, in summary, in my opinion the BOMA7 is a beast of a machine with the capacity to tackle pretty much any obstacle in its’ path. The very definite beauty of it in my eyes, is the rugged design which is just not what you expect from a mobility aid. It literally opens up all areas, is fabulous fun to use and restores one’s independence.

And on the scale of coolness, which runs from zero to ten, BOMA7 scores around a gazillion.

Do I want one? Hell yes! It is, quite simply, a beautiful beast.

For more information, see www.bomaallterrain.com

* May be exempt from VAT if you are qualifying disabled.

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