The Magical Brain

Blimey, this feels a bit like a newsletter, but I think there’s a few updates and loose ends on recent posts to tie up, so here goes:


I have my first official batch of fampridine to help with my mobility. As mentioned before, I hadn’t really noticed how much it was helping me walk until I finished my initial trial, after which my legs felt like they were wading through treacle. I’m on doctor’s orders to go out for a walk every day to build bone strength and I’m doing that daily at dawn. I’ll just be waiting to see if I can increase my current walk distance from one and a half miles, up to the Fampridine trial record distance of four and a half miles per walk.

Also, my previous post on this matter mentioned that I hadn’t noticed any increase in walking speeds when I was on the drug, well that’s obviously not the case to me now as I’ve certainly noticed a very marked decrease since coming off it.

Update: It’s 24 hours after my first official dose of F, and while my step count didn’t increase by very much on the walk this morning, I did feel a bit more mobile today, like I’d had oil squirted in my hinges.

Ocrevus and MRI scans

I’m still on Ocrevus as my main disease modifier and I’ve now had dose number 3. My MRI scan showed no new disease activity in the 12 months leading up to it, so it’s doing its job and keeping my internal terror cell in check. So, good news there.

Back fractures and painkillers

It turns out that it could be the fampridine giving me back pain and not what I had naturally assumed were my fractured vertebrae. Now I’m back on F I’m wondering if the pain will return, and whether I’ll need the use of the prescribed painkillers I had before.

Osteoporopolis and Mr T

I still need to have a chat with my GP to discuss potential reasons for having osteoporosis of the spine, but one thing it isn’t down to appears to be anything hormonal. According to a blood test, Mr T was here hiding in the corner of my Osteoporopolis flat all along, so I do have some company here, although he’s currently beetling his eyebrows at me and calling me a fool.

I’m taking the calcium, the vitamin D, and dropping a tab of acid (alendronic) in the nightclubs of Osteoporopolis every week, so I’m still doing my best to build that skeleton back up again.

Voluntary work

I’ve volunteered to be a test patient in my local teaching hospital.

This means sharing my experience to medical staff at all levels, answering questions, and acting as a test patient to student nurses and doctors. I’ve had an initial phone interview and I’m expecting to hear back soon about when I’ll be deployed and what I’ll be expected to do.

I see it as a chance to give something back to the NHS after all the years of care I’ve received, plus it’ll get me out of the house and keep me out of trouble etc.


After too long a break, I’m sharing a house with cats again. Two rescue cats, discovered with the rest of their litter living on a wasteland in Mansfield. A brother and sister that follow me everywhere, and despite coming from Mansfield, are super-affectionate and are bringing a lot of joy into my life


On the evening of the day I had my Ocrevus infusion, before it got dark, I witnessed a meteorite break up in the atmosphere. It lasted about 2 seconds, flashed white like a magnesium burn and broke in two as it descended. If I was superstitious, I’d say that it was an omen of some sort; if I was the ultimate cynic, I’d say it was the infusion messing with my head. It’s not either of course.

Thinking about it now, it doesn’t seem real, but I reported it straight away to the UK meteorite and fireball network, or whatever they’re called, and as someone who’s analysed meteorite fragments under the microscope at university back in the day, I’m just happy to have witnessed what is likely to be a once in a lifetime event.

And, finally…

Healthcare professionals I need to big up

There are two key figures in my healthcare that have gone out of their way to reassure and rehabilitate me recently:

The first shout-out goes to my neuro-physio. I can’t say how much she’s done for me, but I feel more balanced, literally, since our first session pre-covid. I’m finally off her books now but she’s seen me through some dark times and has been the most holistic healthcare professional I’ve ever had, even asking about my kids and what they’re up to.

The second shout-out goes to my local pharmacist who rang me to find out how I was getting on with the bisphosphonates (I’m getting on fine with them and I’ve managed to incorporate them into my week with no hassle). He set my mind at rest though and when I asked if I’d be able to build bone back up and reverse those declining T scores, he answered “absolutely you can!” which is exactly what I needed to hear. He also told me about a former colleague of his (another male, but younger than me) who did exactly that. He also said I could give him a ring and talk medication anytime I wanted to.

So, two individuals, one in MS-ville and one in Osteoporopolis who stepped up to the mark when they were most needed. It doesn’t always happen, and there are one or two faces I can think of who need to up their game, but until that happens, I can thank my lucky meteorites these two individuals have blazed across my path.

Fampridine trial thoughts

I’ve just come off my trial period of Fampridine and I’ve decided to carry on with it.

Fampridine is a potassium channel blocker which ultimately means that messages can travel along nerves more efficiently. It’s prescribed for MS patients like me, with a walking disability.

It’s something I would take alongside the other medications I’m ready on and it’s not currently available in England on the NHS. So because I’m English and not Welsh, Scottish or Northern Irish and at the mercy of not-so-Nice and their judgements, I needed to perform a cost-benefit analysis before I made the final decision. I was quoted a price for the medication before I took up the offer and, while it’s a price that won’t ruin me financially, it’s still money isn’t it? And with the cost of living currently rising I do have to watch the pennies.

I think if I’d carried on driving 20 miles a day to work and back, I would have considered cutting my already part-time hours back even further. Post-covid I’ll be working from home so it’s a cost I can absorb.

The success of Fampridine is evaluated by how much walking speed increases when you’re on it, but if, like me, you’re not particularly slow in your first 50 metres, how well it works won’t show up if it’s assessed that way. For me, it’s how quickly that speed drops away; how quickly I fatigue. Also, the more subtle changes that you don’t notice until you stop taking the meds. About 30% of English MSers who trial the drug extend their prescription beyond the trial period

I took Fampridine to see if it could increase the distance I could walk, or at least give me the confidence to walk a bit further. I’ve always been a big walker and I’ve blogged multiple times before about this. So, over the 4 weeks of the trial, I’ve been out almost every day just before dawn – the best time of day – and I’ve plotted and measured the length of the route on Google Maps afterwards, making any additional notes in a journal I keep on my phone.

I’ve noticed that I really shouldn’t walk much further than half a mile at a time or I can get severely neuro-fatigued, particularly deeper into my route; my legs stop working, and my back refuses to hold me up (thank crikey for walking sticks!). This really isn’t a pleasant state to be in, particularly if you’re not close to home, so walks with benches are an absolute must.  I’ve planned various circuits that allow me to join the dots of benches and convenient places to recharge. Walking at dawn also helps – there aren’t many people around taking up space where I want to crash-land.

When I perhaps don’t feel as good, I have a basic circuit close to home, that allows for quick escape routes, a bit like sliding down a snake in snakes and ladders. When I feel stronger, the more adventurous walks will often have a goal in mind such as exploring a new neighbourhood, taking pictures of something cool, or staying a while in an area I particularly like.

The longest distance I’ve managed on Fampridine is 4.6 miles. When you consider that I couldn’t really manage more than 2 miles before the trial, you can see the improvement in my confidence if nothing else. At the moment, I don’t even want to attempt a distance of more than the 2 miles I did the other day which I felt very much was my limit. Now, I need to rest and collapse into my sofa after 2 miles; on Fampridine I can stand for a while and do things like get breakfast ready, make a pot of tea, and empty the dishwasher straight after a 4 mile walk.

So, here are the pros and cons so far:


  • Fampridine seemed to increase the distance I can walk. I managed a maximum of 2 miles without Fampridine, and a maximum of 4.6 miles with.
  • Fampridine gave me the confidence to try and walk a bit further than I could before, and the confidence to make life more interesting by trying new routes. If you consider shopping trips and forthcoming holidays, you appreciate how the extra distance will become a necessity.
  • Fampridine gave me a more assured gait and tripping and stumbling, while not entirely absent, were much less frequent while trialling the drug.
  • My early morning clonus stopped while on Fampridine. This is something I didn’t even notice had happened until after the trial when it returned with a bang
  • Fasting for 2 hours before and after each tablet means I can manage my diet better. I generally took my tablets at 10am and 10pm, so I was practically nil by mouth between 8 and 12. Normally I’m often tempted to graze or give in to a snack in this time.
  • After the trial period, I’ve noticed I have difficulty standing for extended periods. My knees can give way one-at-a-time like Bambi on ice, with no warning.


  • There’s no real increase in walking speed while on Fampridine. While I’m not walking-impaired enough to be snail’s pace over the first half mile, I’m not like Speedy Gonzales either. I would have liked to feel like I was getting a little extra out of the exercise in terms of speed but I’m probably burning more calories just by walking further.
  • The cost. I’m no longer considering cutting my work hours post-covid, and I have a rainy-day fund for this sort of thing, but my hard earned cash should be spent wisely so is this drug worth it?
  • Back pain. I had naturally assumed this was due to my broken back, but it’s listed as a side effect and has all but disappeared since the trial ended. It’s not just the odd twinge either – I needed some strong GP prescribed painkillers for it, so if I go back on the fampridine, while I might have to take the pain pills again, I will, at least recognise the pain for what it is …and what it isn’t.
  • Fasting for 2 hours before and after each tablet can get in the way of life and needs to be carefully managed when it comes to social events. I don’t feel able to have a cup of tea in the 4-hour fast, for instance. Seeing as this, in the evening at least, can coincide with settling back to watch something on TV, you will appreciate how it can impact a tiny bit on my quality time.

Considering the pros and cons, I think the pros outweigh the cons, but it is tricky because some of the differences between being on the drug or not being on it are very subtle and I didn’t notice them at all until I stopped taking it. Also I’m wary of feeling a bias towards taking it: am I unwittingly talking myself into it? The only real con I can see is the back pain, which can get pretty severe, but that’s what painkillers are for and if I know what’s causing the pain, I wonder if I might take them less often.

There are other side-effects listed in the leaflet inside the medicine box, and I think my worry is that these might kick-in at some point in the future. Apart from the back pain, I did have a very upset stomach one day on the med and I put that down to something I’d eaten, but it was one day, and it doesn’t mean that other side effects will pay a visit at any point.

Another quite important point is that some people notice the benefits of the drug in a matter of days and some take a bit longer. I reckon most people in the 30% of MSers who notice a difference are like me and notice an improvement over a 4 week trial period rather than relatively quickly, but I’ve also heard it can take 6 weeks before a benefit is noticed. Whether that’s due to drug efficacy, the neurologies and symptom sensitivity of individual patients, or, a gradual dawning that a subtle improvement is underway, I don’t know. Maybe all 3. Maybe more than the 30% notice a benefit but decide the cost involved isn’t worth it. Maybe I have benefits still to be unlocked. Who knows?

So in summary, it was a toss up between feeling confident on both feet against something that gives me back pain, costs money, and forces me to timetable my food and drink. It was a no-brainer for me, and it fell on the right side of the quality-of-life scale and, knowing me I’ll try and turn the cons into pros.

Postcard from Osteoporopolis

Warning: Tired travel analogies may continue to be employed in this post.

“I know the C word and the F word. The C word is cor blimey, and the F word is flippin’ ‘eck” – Rat, lead singer of Chesterfield based punk band The Bland on stage at the Take Two club, Attercliffe c.1988

It’s been a funny old year, and when I say ‘funny’, of course I mean ‘funny-peculiar’, and not ‘funny-ha-ha’.

I have to say that medically, the last 12 months have been the hardest of my life. Even harder than the MS diagnosis year, as that became something positive in the end, and the overriding emotion for me at the time was one of relief that I had something that wasn’t going to kill me.

2021 saw a routine MRI scan picking up evidence of an MS relapse which then necessitated a change to my main brain medication, from the relatively low efficacy glatiramer acetate, (Brabio/Copaxone) to the full-on big guns of ocrelizumab (Ocrevus). So, while I no longer need to inject every day, I do have to attend hospital for an infusion-fuelled B cell murdering spree every six months, which is a little bit daunting when there’s a global pandemic raging outside your door.

Then, last September, I tripped and fell, fracturing two vertebrae. It’s six months later now, and I still can’t walk past the place where it happened without a degree of trepidation. It’s as if the psychological pain is as great as the physical pain in terms of what still exists in my system. It took three months before an x-ray confirmed the fractures, so it was three months of worry about what the actual flippety flip might have really happened in my spine. That’s three months of reduced mobility, and three months of feeling like I’d been snapped in half. I now have ongoing pain in my lumbar spine to deal with, and I’m currently controlling it with what is apparently an addictive medicine that some in my team of medics seem keen to wean me off.

Let’s also not forget that the fall triggered a 48 hour coma-like sitting sleep, a loss of 16 pounds in weight, and an inactivity in my bowels so severe the GP suspected cancer.

This cancer scare necessitated the downing of two litres of liquid salt, and a colonoscopy that redefined the word ‘uncomfortable’.

And then I turned 50…


…Happy birthday!

Weirdly, the colonoscopy was a high point (and the birthday was as well, of course). It was a very strange experience but it was nice to see myself from a new angle, so to speak, and it certainly woke those bowels up again. Nowadays, my level of colon traffic is more-or-less back to where it should be.

I guess when you consider a colonoscopy to be the high point of your year, you know you’ve been to some decidedly dark and difficult destinations.

My latest MRI took place the other week for which I’m still awaiting the results. After the hour of magnetic slicing, the radiologist, in a first for me, actually had to help me off the bed and into a wheelchair, pushing me back to the changing room. I’m just unable to lie flat on my back for the zap-time and then do the sit-up-stand-up afterwards.

I’m so exhausted by life at the moment that I still managed to nod off in the alien techno disco that is an MRI scanner.

And then there was the DEXA scan to assess my bone density and the ensuing wait for those results which is where you found me in my last post: languishing in the lounge of Limboland Airport.

Well, the results of the DEXA scan came in, and that’s how I found myself on a flight to Osteoporopolis.

A DEXA scan measures bone density in three places: the hip, the hip neck, and the lumbar spine. The results, after being fed into an equation, that I haven’t fully absorbed yet, are expressed as a ‘T-score’.

If it’s a T score of zero, you’ve hit the bullseye – your skeleton is as dense as it should be for someone of your age, and a T score between +1 and -1 is considered normal. My hip has a T-score of -0.1 so my hip is ‘normal’.

If the T-score is between -1 and -2.5 you have osteopenia. This is the stage before osteoporosis – a warning that your bones are in peril. My hip neck – the bit at the top of my femur that connects it to the ball of the hip joint – has a T score of -1.1. My hip-neck is therefore ‘osteopenic’.

If the T score falls below -2.5, then it’s osteoporosis. It’s an exponential scale and as osteoporosis progresses, the T score can get as low as -4. My lumbar spine has a T score of -2.6, and I now have the second biggest diagnosis of my life.

I have osteoporosis of the spine.

Like MS, it’s chronic and it will never go away as I age, but I can take steps to try and improve those T scores. After the age of 30, your body is still building your skeleton, it’s just destroying it a little bit faster, and it’s that imbalance that I need to work against.

So now I’m dividing my time between my comfortable house in the heart of MS-ville that I’ve made my own over the last 13 years, and my new pad on the outskirts of Osteoporopolis.

Let me tell you, on first impressions, Osteoporopolis is a pretty miserable and lonely place to find yourself, particularly as a fifty-year old bloke. I’m very much in the minority here.

Most of the people here are a lot older than me and it seems that until the population swings from majority-Boomers to majority-GenX, no-one will really use the internet or post anything encouraging to online forums and social media. Maybe I haven’t tried hard enough to look for it, but no-one seems to look after the younger generation like we do with the newly diagnosed in MS-ville. They all seem to keep their heads down and get on with it, and if they do post online, it seems to be for sharing the hardest of hard luck stories.

The pubs here only serve milk and the only celebrities you see in the media seem to be Miriam Margolyes and Gwyneth Paltrow, who I’m sure are both very nice… but… well…

…I suppose I’m still settling in.

I suppose the nature of the Osteo-beast is different to the MonSter. They’re both on downhill rides, only MS is more of a slalom with large jaggedy rocks that you can either avoid, or smash yourself against.

So, if I’m going to collide with stuff, I’d better improve those T-scores.

Well, my GP has booked me in for another hormone-based blood test to confirm if Mr T is going to catch the flight out here as well and cheer me up a bit. I’m wondering (hoping) that I’ll feel a bit more like the old (young) Dave when (if) he does. I’ll be looking forward to his company, but I still have a little bit of time to wait for that.

I’m still taking the calcium and vitamin D supplements. I’m also taking Alendronic Acid once a week (an apparently heart-burning bisphosphonate) to help build some bone strength.

I need to do a thorough re-assessment of my diet: more protein; more calcium; more vitamins D and K. I reckon that’s fish, dark green veggies, and dairy but I’ll see what I can do when I have a proper look.

I’ve applied (through the GP) to restart my ‘health-by-referral’ gym sessions as well, which came to a premature end when I fell flat on my face. I’ve been in touch with the guy at the local authority gym already and we’re going to do a programme based on weights when it’s all up and running again.

I’ve been seeing a musculo-skeletal physio. He’s made sure I’m doing stretches to increase flexibility and strength in my skeleton as it appears a bit stiff and a bit shorter than what it used to be, in no small part due to the last two years of working at home.

I’ve also seen my work’s occupational health department who are sending me supplies to improve my at-desk posture. They’ve also given me details of an in-house counsellor as they recognise my need for one. I enjoy talking to people, anyway, so I might find that beneficial.

Also, I’ve been advised that the best thing I can do is what is often referred to as ‘weight-bearing-exercise’, or, as I like to refer to it: ‘going for a walk’. I’ve re-started my pre-breakfast dawn walking to get some bone-building shockwaves through my skeleton, and build some bone and muscle strength. I never really realised the need to exercise your bones before and it’s great that I can do this by doing an exercise I love at my favourite time of day.

My main hindrances for walking are devising routes that take in rest stops on benches no-further apart than three-quarters of a mile; also, the fact that my calf muscles tend to spasm as I approach the three-mile mark. To combat this I might redeploy my gabapentin booster tablets (the extra dose I sometimes take on top of my night-time dose).

The good thing about walking, of course, particularly when everyone else is still asleep, is the boost you get to the old mental health. Waking up flipping hurts, and it hurts like a motherflipper as I pull myself upright, but after the painkillers, and about half a mile of walking with my headphones in, Osteoporopolis seems a slightly happier place. It’s parks and gardens are well cared for and after taking the fampridine I brought over from MS-ville, I’ve managed to beat my step targets, reaching a glorious 11,000 steps on one day this week. 8,000 of those before 8am.

Over the coming weeks and months Osteoporopolis Central Library is going to see quite a lot of me, as is the calcium counter at the local supermarket. I’m still picking my way through the neighbourhood and a few friends have said they’re going to pop over and see me soon

I’m also waiting for the right time to phone the specialist nurses on the Royal Osteoporosis Society’s helpline. In these early stages they’re going to become very familiar with my inquisitive baritone.

It feels like I have so much to do and so many questions to ask. I’ve almost forgotten what it’s like to be at the early stages of a diagnosis

Perhaps, the question I need to address first; the most ‘me’ question there is, and one that I’ll constantly be refining in my Osteoporosis journey are to do with the positives. Maybe it’s good that it was discovered as early as this. How huch harder would it be to start all the treatments and therapies if I was further down the line? If there’s one thing I’ve learnt from my years in MS-ville, it’s that a positive frame of mind is half the battle.

A postcard from Limboland

A month ago, if you asked me how tall I was, I’d say I was a six footer.

It seems I’m not. I’m a five-foot-ten-and-a-half short-arse apparently, so essentially I’ve lost an inch and a half (4cm) in height. Even if you consider I may have always rounded up by half an inch, and I may have always measured my height first thing in the morning when I’m at my stretchiest – that’s still quite a lot of height to lose.

Let’s say it’s an inch or slightly less. It’s quite a reduction, and I feel like I’ve lost some of my identity along with that inch. There’s an inch of Dave that’s gone forever.

I was measured just before I lay down for my DEXA scan, so it was something to ponder as the technician asked me to shuffle uncomfortably this way and that on the scan-table.

A DEXA scan is a type of x-ray to measure bone density and it’s used to determine if you have osteoporosis.

My GP has already pre-empted this as the diagnosis and the scan should either confirm it or show that I have osteopenia which is basically osteoporosis-lite.

So it seems I’m back in diagnosis limboland.

This is not a happy place to be in. I’ve been here before, of course, but back in 2008 I caught the flight out of Limboland Airport to a new life in MS-ville instead of Brain Tumour City, so when my emotional baggage rolled around on the carousel, I was able to deal with it all and load it up myself onto my trolley. My family, other MSers (some of whom follow this very blog), a few but not all of my friends, and some health professionals were also there in baggage reclaim to help me push it along until I was able to manage it all by myself.

Now I’m back in the departure lounge, sitting down with some egg-mayo sandwiches (the only ones left in the shop) and looking for somewhere to charge my phone, wondering why the screens aren’t showing my destination yet.

So why could it be osteoporosis?

Well, the type of fracture I have is only really seen with weaker bones. Spinal compression fractures, along with wrist and hip fractures are the commonest types of fracture in osteoporosis. If you see elderly people walking with a stoop, osteoporosis of the spine is a likely cause.

It’s most common in post-menopausal women, of course, and it’s a risk due to the reduced oestrogen resulting from ‘the change’. Hormone replacement therapy (HRT) is a commonplace treatment for women at that stage in life. Male sex-hormones tail-off on a shallower trajectory, so we fellas don’t show signs of osteoporosis until much later in life. It’s a silent condition; you don’t have any symptoms until you fall over and break something, which, as I documented in my last post, is exactly what I did last September.

So, you might be wondering why a fifty year old bloke with MS has osteoporosis.

Well, I’ve not been feeling right for some time and I’ve been honest with myself recently and I’ve come to the conclusion that I’m actually quite depressed. If you do an internet search for low testosterone, without going into too many gruesome details, I pretty much tick all the boxes. Hormones have a pretty nasty way of letting you know something’s wrong.

To put it bluntly, I feel pretty shit!

It’s definitely not a mid-life crisis. That’s something completely different. I made some pretty crap decisions in my younger life and I haven’t set the world on fire (yet), but I’m largely happy with who I’ve become. I think I’m pretty cool. I’m generally at peace with myself. I’d still like to have a challenge in life, but I have no urge to grow a ponytail (again) and buy a sports car.

I had already asked my GP for a blood test to check my testosterone levels at the same time as she booked the DEXA scan.

Being the consumate professional, she also booked about 5 other tests at the same time, ranging from liver function to diabetes tests.

Everything came back fine, apart from one tagged “ABNORMAL”.

And so it’s almost confirmed. It looks like Mr T isn’t pulling his weight, and it could be due to a lesion in my brain.

I still have to do a fasting blood test in a month to confirm it for some reason, and then I’ll be sent to an endocrinologist for treatment, which Dr Google advises could be anything from injections to pills and patches. Once they start to work I should start looking forward to becoming a sexy beast again complete with a slimmer waist a hairier head (maybe?), a gold medallion and hopefully a more positive outlook.

So, what now? I’ve been necking the chunky calcium pills to build my bones up like a pelican gulping down fish. I’ve started walking a couple of miles every day before breakfast just to keep my body moving and get some natural endorphins flowing. I have to swallow some painkillers first to get me going, but it’s a chance to have some me-time with my headphones in the fresh-air of the pre-dawn.

I’ve also seen a physio. A muscolo-skeletal (MSK) one this time.

They were happy with the stretches I’ve been doing and gave me a couple of new ones to try to counteract my sedentary job. They were pleased when I said I’d asked for an occupational health referral at work as it’s been a few years since my last one. They also seemed pleased that I was walking first thing, saying that’s exactly what I should be doing. They adjusted my walking stick so I don’t lean into it as much. They also said any thoracic fractures shouldn’t really affect how I move as that part of the spine doesn’t really move much anyway. The concern I should have is with my lumbar region.

They had my x-ray on their screen so I asked to have a look.

What I saw surprised me. I had expected to see that my spine had crumbled like the last biscuit in the tin. Instead, I was shown what looked, to my untrained eye, like relatively normal vertebrae. There were areas on a couple of bones that weren’t as sharp on the image as they should be, and I was told that these were likely to be the fracture zones, but I struggled to see from these where I’ve lost the inch. Other than these little grey fuzzy patches, it looked fairly normal to me. What I wasn’t prepared for though, was the loss in disc space. It looked like there should be plenty of healthy looking discs for sure, but there were at least two intervertebral spaces in my lumbar spine that looked like someone had let the air out. They looked more like they should be filled by pancakes than rubber rings.

It’s still sinking in a bit, and it’s funny how visualising something helps. I wasn’t aware of anything wrong in the lumbar region until I woke up on the morning after the appointment and felt the ball of pain at the base of my spine. This is pain I obliterate automatically with strong painkillers in my half-asleep state. I’d been focussing on the larger and sharper ache halfway up my back without even noticing anything else was going on.

And when I do my sideways stretches, it suddenly makes sense.

So here I am, like I said, in the departure lounge at Limboland Airport waiting for Mr T to show up, and wondering if I’ve got what I need in my mental suitcase to cope with whatever’s at the end of the flight.

Wherever it is I’m off to, I just hope that this time I have a soft landing.

The aftermath

Warning: this post contains experience of intense pain and some details of sensitive medical procedures.

Sometimes I think of my MS as a monster. A monster who is always there tugging at my neck, poking me in the back, tripping me up or holding my ankles like a deadweight. As a child of the ‘70s, the picture I have in my head is of Sweetums from the Muppet Show following me around. Except this monster (or MonSter, if you will) is invisible and his footprints can only be seen on an MRI scan.

Other times I think of it as a terror cell, biding its time and plotting quietly in the background. Conspiring to set something off when I least expect it; unbalancing and toppling the status quo.

Well, that unbalancing, and toppling happened some months ago, as I awoke, regular as clockwork, at 3am.

I was taught at school that the early hours of the morning is the time of day the Germans used to launch their blitzkrieg attacks. This is the time of day that our groggy body clocks are least able to mount a fightback or cope with a sudden situation. This is also the time of day that I tend to need a wee, and it’s partly the reason my bladder was Botoxed a few years ago.

Well, that September night, the MS terror cell detonated a bomb in my bladder, so I thought I’d better go to the loo.

I like to think I’m quite adept at creeping quietly to the bathroom in the dark without waking anyone up. I gingerly hold on to windowsills and furniture as I inch along, using my phone screen to dimly illuminate my surroundings.

My internal terrorists must have planned for this, of course, and had consequently set up some invisible tripwires to upset my balance at precisely the moment I would let go of the chest of drawers. As I let go, I swung helplessly to my left and followed the path my body took in much the same way you might steer into a skid in icy weather.

I think my aim was to collide gently with the bedroom wall opposite, keep my feet and find some purchase without knocking any picture frames off the wall. I would do this, I hoped vainly, without disturbing my other half who was still soundly sleeping a sleep Snow White would be proud of.

Unfortunately, my internal terrorists knew that the corner of the bed would be in the path of my trajectory, and I would pivot over the corner and slam to the floor like Goliath being hit on the head with a slingshot stone. This I duly did and face-planted on the floor with my feet in the air and my knees on the bed, snapping my spine back suddenly in an explosion of pain. I raised enough noise in the resulting howl to wake half the neighbourhood.

I remember a few things about the immediate aftermath. I remember being astounded that my wife wasn’t intensely annoyed with me for disturbing her slumber and was instead tenderly stroking my shoulder asking if I was alright. I remember one of my teenage daughters managing to haul themselves out of their bed to find out what was up with Dad. I also remember receiving a call from the British Geological Survey wondering about the recent seismic event that seemed to epicentre on my house. But I also remember lying there in agony, with stars in my vision, really needing that wee and somehow, by some Herculean effort, still managing to make it to the loo. I almost blacked out in intense pain as I fumbled firstly with pyjamas and then with a catheter, my body feeling as if it had been snapped in half.

I took the following days off sick from work as I struggled to come to terms with what had happened. The pain in my back felt dry and boney in a way I hadn’t experienced before, but then also achey like I’d been kicked in an extra testicle from another dimension. A testicle I didn’t know I had.

I had abdominal pain that seemed to suggest I’d been in an argument with a wrecking ball. Every muscle and tendon seemed to have been ripped apart and pushed through a shredder. I felt like a walking bruise.

I found I could lie down free of pain so long as I didn’t move. I could also sit down painlessly, but in the act of going to sit or lie down and, again, in the act of standing up, it would return in a flash and stay for a few minutes with an unimaginable intensity.

In the days that followed, my body took control and seemed to trigger an emergency narcolepsy like a hospital might induce a coma and I slept solidly for the best part of 48 hours while sitting upright in an armchair. I lost just over a stone in weight as well almost overnight.

Strangely, it seemed I still had a full range of movement – I could swivel and I could bend and I could reach. But if I did the stretches my neuro-physio had given me, I would start back at square one and the pain would crash in again afterwards.

As the week progressed, I realised my normally sluggish bowels were even more sluggish than normal, but to an increasingly alarming extent as the days rolled by and turned into weeks.

My GP, after sticking her finger you know where, prescribed me laxatives, painkillers and muscle relaxants. She asked me for a stool sample when the laxatives started working, and then booked me in for a colonoscopy just to check on things and “eliminate possibilities such as colon cancer, or more likely, polyps” she said.

Checking my NHS app, she’d put “suspected cancer” ignoring the more obvious diagnoses of a chronic neurological disease and a body in shock.

If you’ve never had a colonoscopy before, don’t worry about it. It’ll be fine.

In the waiting area’s ante-room I coldly ignored the man, at least ten years my senior, whimpering about “invasive procedures” like he was on Death Row, reminding myself I’d had far worse: ‘You’ve had bladder Botox, Dave, and in the company of medical students, what could be worse than that?’

In actual fact, the worst thing about a colonoscopy is drinking the two litres of what tastes like pure salt the night before. It’s a liquid so toxic, you can feel your stomach contract in shock the moment the solution hits it. If you can picture a stomach sobbing uncontrollably at the unfairness of it all, that’s what it feels like. Then only a matter of a couple of hours later – oh boy! – that two litres reappears like… well… like a dose of salts, I suppose.

At the hospital I was offered either gas-and-air or sedation. I was planning on going to work later that day, so sedation was a definite no-go. I was also advised by someone who had had it, that gas-and-air might make me feel ‘a little bit queasy’, so I passed on that as well. The part of my brain that still thinks like someone in their early 20s reminded me that gas-and-air has always seemed a potentially recreational pursuit as well, and frankly I wasn’t in the mood for it.

‘I’ll tough it out’ I thought ‘it can’t be worse than bladder Botox’.

It’s actually very different to bladder Botox and more akin to an operating theatre experience than the dentist-at-the-wrong-end procedure of anything bladdery. There’s more pushing and pulling involved, the attendant nurses also pump your belly in a similar way to a CPR but lower down, to force the camera round the next bend, and you have to shift position so the consultant can manoeuvre the bendy camera rod, which isn’t easy if you had the eye-wateringly intense back and abdominal pain that I had. On top of this, there’s an overwhelming and disorientating urge to pass a non-existent poo when the end of the camera is anywhere in proximity to the exit region, shall we say?

There were three screens in the dimly lit room, all showing the wonder of my insides as the camera wriggled and forced its way along my large intestine. I had originally thought I’d ignore these screens imagining all sorts of cancerous horrors, but none were to be found so I lay back to watch the show. It was quite pleasing to see how vibrantly pink everything is, with little red veins scampering around the intestinal walls. The bowel is also ridged a bit like the inside of a vacuum cleaner hose and it was between two of those ridges, and close to my appendix that a polyp was found to be hiding. This was removed with a little wire lasso and then patched up with what appeared to be miniature crocodile clips which I was assured were so tiny they’d be inconsequential and probably out of my system by the time my next MRI rolled around. Apart from that and some ulceration due to my recent heavy ibuprofen use I was given a clean bill of health and informed that my bowels will probably sort themselves out as if a reset button had been pressed.

So, after this, the rest of autumn hobbled slowly past. I found that my mobility had markedly deteriorated and walking had become more difficult. The 18,000 steps I’d only just about managed one summer’s day on a trip to London seemed like fantasy, and still does. I was still in pain and my neuro-physio suggested I request an x-ray of my back.

“Are you medical?” asked one of the other GPs at my practice.

“Hmm?” I replied.

“Are you medical? Do you have medical training?”

Oh dear, maybe he wants to give me the lowdown in a brutally honest fashion. The worst-case scenario.

“No… why?”

“You’ve just described your pain really clearly. I just wondered if you knew what you were talking about.”

Yeah, I wonder that too sometimes.

I suppose if you’re in a constant dialogue with medical staff, as you might be after 13 years with an MS diagnosis, you should be well used to describing your torment.

An x-ray of my thoracic and lumbar spine was duly organised as requested, and when the day came, I was in and out of hospital in a jiffy, like that dose of salts I’d consumed a couple of months before. The only thing impeding my progress was my usual fumbling about with the back-to-front hospital gown.

I could expect the results in about four to five weeks, I was told. They showed up in a matter of days via the NHS app on my phone:


I had fractured two vertebrae: T12 and L1. Exactly where I’d described to the doctor, at the border of my thoracic and lumbar spine. According to the GP, the abdominal pain is likely to be just an echo, a reverberation of the spinal injury. I also have some narrowing of disc space and some evidence of osteoarthritis, which is apparently nothing to worry about and quite normal for someone who’s been at the mercy of Earth’s gravity for half a century.

The upshot of this is I’m currently on strong painkillers and a pill the size of a horse tablet satisfyingly called, like a military command to my skeleton: ‘Accrete’ – a calcium and vitamin D supplement they give to osteoporosis patients. I’m also awaiting a bone density scan (a DEXA scan) to see if I am indeed suffering from brittle bones.

After a few days, and worried about the apparent side-effects I might experience from the painkillers while driving, I set off to see my neuro-physio.

Halfway there I realised I really was feeling weird. Not drowsy, but definitely a sensation I wasn’t used to or prepared for – and I’m an old hand at experiencing weird sensations. I couldn’t quite put my finger on it, but the realisation came washing over me as I pulled into a space in the hospital car park:

I was completely pain-free.


I suppose you don’t really compute how much you’re used to something until it disappears.

That would be a nice neat and tidy end to this post wouldn’t it? All sunsets and smiles. A bittersweet ending to make you feel glad and tear-up a little, but life is never that simple and neat is it? My painlessness is only temporary when it happens, and the pain always wheedles its way back somehow. It’s at its most acute when I get up out of bed, it aches for most of the day, even after popping both codeine and paracetamol together, and it starts to properly annoy me by the time I’m due my next dose of pain relief.

My GP (the one who ordered the colonoscopy) has prescribed more of the painkillers telling me that the pain might come and go “for a very long time”.

“Hmmm… how long is a very long time?” I wondered out loud.

“Well, not everyone, but some people report pain coming and going for a very long time after an incident of this nature.”

“Months? Years?”

“Yep! That could be the case.”

“OK…” I paused. “The rest of my life?”

“Possibly, yes.”

I love my GP.

So, it’s a slow process. It’s currently four months after the fall and I can just about manage rolling over, and getting into and out of bed, without wincing in agony.

I was due to see a musculo-skeletal physio soon but covid, and I’m assuming inadequate government funding, have knocked that on the head for a while – all the physios have been seconded to help on the wards.

I have my bone scan in the osteoporosis clinic still to look forward to and I have one more appointment with my neurophysio that hasn’t yet been cancelled.

Also, in among all of this, I saw a consultant in my neurology team to see if I might be eligible for Fampridine. Fampridine is a medication that helps some neurology patients with their walking – stamina, speed and distance. It hasn’t been approved by Nice in England though, so I’d have to fund the treatment myself if I’m one of the lucky 30% of MS patients it works for. I have a rainy-day fund for eventualities like this, so while it’s expensive and unfair that I don’t enjoy the access that other parts of the UK have, it won’t ruin me financially if I want give it a go and I definitely want to give it a go.

I want my mobility back.

To see whether Fampridine works, I first need a level playing field to assess its effectiveness. It’s useless trialling it while my back, and therefore my mobility, is getting better after a fall, because I won’t know what’s causing the improvement – drugs or time. I need to wait until I’m elevated to my normal levels of crappiness before I start, and this means being able to walk my usual daily circuit of a mile and three-quarters with no major issues apart from mild fatigue and a couple of rest-stops on the benches en route.

My legs have been complaining that they’ve been cooped-up for too long, so I trialled it the other day and I can do a mile and a half with some shuffling and wobbliness to start with, but once the paracetamol and codeine kicked in, it seemed OK and while I didn’t do the full distance my neuro-physio has advised baby steps to start, or I could easily overdo it.

I’m not quite at the level playing field yet. I haven’t done the full distance, and I haven’t gone out on consecutive days, but at long last I think there’s a sliver of light at the end of the tunnel. It could be a long slow process though and I need to learn not to be impatient and rush things as that could damage me more in the long term. I was also advised by my GP not to try and tough it out. If I need pain relief I should allow myself to have some pain relief.

Being in pain and stuck in the house, I’m well aware, is making me difficult and grumpy. As the mobility returns I should experience the endorphins I can generate from a daily walk round the neighbourhood again, and that’s best sort of pain relief there is.

Remembering Pam

Today I’m remembering, and shedding a tear, for my wonderful neighbour Pam who was laid to rest the other day after dying at the age of 89.

Pam was easy company, constantly chuckling to herself as she spoke. Relentlessly good natured, and an eternal optimist, she was always of a sunny disposition and all our worries and troubles would vanish in her company.

We would enjoy many a time just sitting together in the garden in the sun, sharing each other’s company and a pot of tea.

Pam sometimes seemed like she belonged to a bygone era. An era of Scott of the Antarctic or Sir Edmund Hillary scaling Mount Everest. She was very well spoken and exuded an open minded Britishness of the sort that includes a natural inquisitiveness – an explorer mentality – rather than the insular, closed off little Englander. In fact, the only time I remember her getting angry was at David Cameron after the EU referendum. Pam was truly a woman of the world… A woman without borders.

And she would tell us stories of her globetrotting youth – her time living on Pacific islands or exploring the Australian outback. A lover of opera, she would often tell us of the time she cajoled and harangued her sister into joining her for a once-in-a-lifetime night at Sydney Opera House. Conversation and good humour, always flowed, along with a brimming teapot or the bottle of wine we were sharing.

A conversation with Pam often led to some interesting and mysterious places. It seemed that every other sentence was a question that made you think, and think deeply… but not too seriously.

If you ventured into the back garden while Pam was around, you could always rely on her to give you a much needed boost from over the fence:

“Don’t you look wonderful?”;

“I love your daffodils!”;

“Isn’t your garden beautiful?”

…often followed by a string of gardening questions I had no hope of being able to answer.

We were never quite sure of her profession. Not knowing whether it was as a care assistant or a nurse, but Pam was thrilled when our children were born as if they were her own flesh and blood. She was like a surrogate mother and grandmother to our family, and when the children were small, she could be relied on to offer gentle advice or to pop round and babysit, or lend a hand so we could have a rest.

When the children grew older, she would invite them round and they would keep her company and help her in her house or her well loved garden. She’d pay them in juice and biscuits, or she would give them a little money for sweets as a thank you, writing out a little payslip for “work undertaken”.

Living alone, she never seemed short of company, but she could also be fiercely independent. She also had a gently rebellious sense of humour and delighted in anything quirky, or anything that subverted what was expected of her as a woman ‘of a certain age’.

The people who sold us our house, nearly 20 years ago, told us that part of the reason they’d chosen us as buyers was how well they thought we’d get along with Pam…

We did…


I miss Pam. I’d often hear her through the wall late at night. We both seemed to be night-owls and I miss the sound of her listening to Wagner in the early hours, or the sound as she stoked her fire, or filled her kettle.

Every now and then I would hear her rattling the coat hangars in her fitted wardrobe in the dead of night and smile – a warm sound in the dark. Slightly alarmingly, I also heard her rattling them when she was visiting her family on the other side of the world.

I let her know on her return and after pausing wide-eyed she started chuckling again about the ghost she must be sharing her house with.

She was like an extra member of the family. She would bake us cakes. She would bring us presents. She would snooze on our sofa.

She would tell us that she loved us.

Pam is still part of the universe. The wind plays in the long grass of the field next to where she is buried. And while her physical remains are lying in the graveyard of the church she attended every Sunday, part of her will also live on in our memories and in our hearts.

We love you too, Pam. Rest in peace

Bringing me cake for my birthday.
Pam Smith, 1932 to 2021


I’ve been slowly putting together a Spotify playlist for this year and thought I’d share it. Every time I hear or think of something I like, I add it and then I play it back on busy days at work or when I’m out walking.

I get bored very easily so the aim is to make it as long as possible and only include things that pass my quality control. It’s nearly 30 hours long so far. Don’t let that put you off, though, just do what I do and dive in wherever.

Think of it as if I’ve made my regular readers a compilation, so here it is:

Download / listen and enjoy

Foot-ups, Fampridine and familiar faces

The other day was a good day for me and my MS.

Not because I felt any better or any different, but because I got a few things sorted, and I dealt with positive healthcare professionals as I did so.

Firstly, I had a hospital appointment with a cheery orthotics specialist to fit me with two foot-ups. Foot-ups are essentially big Velcro bands that fit round the ankle area with a strong elasticated cord, a bit like a bungee rope, that hooks onto the top of your shoe.

I’ve noticed my foot dragging on the floor a few times while out and about, and I’ve even ended up flat on my face once or twice when the stick has failed to save me. Also when I’m fatigued, my feet tend to slap the floor with all the grace of a fully flippered frogman or frogwoman emerging from a lake, so my wonderful physio deemed that I needed some intervention. Foot-ups are designed to bring back some of that heel-to-toe smoothness in your gait, minimising the risk of tripping, and taking some of the fatigue out of walking.

They are a little bit of a faff to put on and I worried that they’d be a lot stronger than they are, but I think the trick is for me to try and ignore them and just get used to my feet regaining some control. I also noticed that I was looking ahead more with them on while I was walking, rather than keeping an eye on the ground immediately in front of me, and that has got to be a good sign. They do take a little bit of getting used to, though, particularly when clutch control comes into the equation, but at least I didn’t stall my car on the way home.

My physio had alerted me that there might be a charge as the orthotics service is now outsourced, but when I asked about this, I was met with a big beaming smile: “No! It’s all on the NHS.”

Good old NHS.

While I’m talking about walking and NHS funding, I read an article at the weekend about Fampridine. It improves walking speed in about 30% of MS patients, but it’s a bit of a postcode-lottery for who can get it on the NHS.

Fampridine has been approved in Scotland and Wales, but it hasn’t yet in England as NICE (National Institute for Health and Care Excellence) have ruled that it isn’t a cost-effective treatment. This may change next year when NICE reassess their decision, but for now it’s only available in England on a private prescription.

It’s going to be an expensive decision for me or anyone else in England deciding to access this drug privately, and it’s particularly galling that it’s available for free in some other parts of the country. Disregarding the ethical and wider economic issues regarding the availability, I’m very lucky that I do have a rainy-day fund for things like this. I thought it worth leaving a message with the MS nurse.

When she rang me back – “Hiya! Guess who it is?” – it was my very first (and favourite) MS nurse. She had ‘retired’ a couple of years ago but has been drafted back in temporarily to answer phone messages and free up the full-timers.

I miss my old MS nurse, so I was comfortable explaining what was going on. She was familiar with my case so talking to her came easily. I mentioned how I’m now stick-dependent; that I’ve been seeing a neuro-physio and that I have just acquired foot-ups. I also explained how I recently spent a weekend in Brighton exhausting myself by achieving a step count of over 11,000 steps a day, but still a few thousand steps behind the rest of my family while they raced off (walked normally).

The long-and-short of it is, I’m going to be referred to a consultant who specialises in movement disorders in neurology patients. If he thinks it’s worth a try, I’ll trial Fampridine for a month at the expense of the drug company. If I’m one of the lucky 30% that notice positive results, which apparently happens pretty quickly when it does, I could get a private prescription.

Watch this space!

It was a positive and productive day all round, I thought. I missed my gym session to go shopping with Mrs Dave, but I squared that away with the thought that I was test-driving my new orthotics so it was a worthwhile exercise and a valid excuse.

I’m just waiting for a day when I can drag myself out of bed at an early enough time to take them for a decent walk.

In the meantime, we can only hope that NICE revisit their decision and follow their Welsh and Scottish equivalents to make Fampridine available on the NHS to the whole nation.

So, it was a day of many words beginning with F: Fampridine, family, foot-ups, friendly faces and so on, but for once it was fantastic that there were plenty of F words missing.

Thanks where it’s due for a badge of blue

OK, so purely in terms of disease progression and mobility it hasn’t been an easy year for me (pandemic? …what pandemic?) so I’d just like to give a shout out to my Derbyshire County Council colleagues in the Blue Badge team for processing my application and delivering a shiny new badge to me in less than a fortnight. When you consider it took the DVLA a whole year to supply me with a new 3-year driving licence, it’s safe to say this is a fantastic turnaround.

As I know from personal experience, local government teams are very often in the social media firing line for things going wrong that are out of their control, so I’d just like to give some thanks and kudos where it’s due. This will be business-as-usual for our Blue Badge team but I’m a firm believer that the business-as-usual should be celebrated when it works well and gives people a sense of empowerment.

I didn’t know how I’d feel if I ever needed a blue badge, but far from making me feel disabled it’s opened up a whole new window of possibilities. Last night I took my eldest to the supermarket just so I could christen it by parking in a disabled space. We were the only car in the car park, but hey!

I’m now really looking forward to using it this weekend. We’re all off across the Pennines, where I’ll become Great Uncle Dave with our newest family members, the mental burden of parking and accessibility well and truly lifted.

Accepting the stick man

As I mentioned in my last post, I have recently started Ocrelizumab infusions. After a year of lockdown, this has involved a couple of trips to the city for long days in hospital hooked to a drip and, face-to-face interaction with other living and breathing human beings outside of the family bubble.

I have noticed on these trips that the more powerful disease modifying therapies, such as Ocrelizumab and Alemtuzumab, seem to be offered to MSers as a first line of defence instead of the relatively ineffective ones – the beta interferons and copaxones (the ones I’ve been ticking over on for all these years). I‘m a little bit rueful that it took a relapse to rob me of some mobility and balance, before the possibility of changing medication presented itself. It’s no-one’s fault though, it’s just the changing medication landscape and the fact that the old meds did a pretty good job at keeping relapses and disability at bay for over a decade. I’ve just swapped my hand grenades for napalm, that’s all.

The consequence of this is that when I arrived at the front door of the neuro- ward, those waiting for their infusions seemed to be newly diagnosed youngsters – a term that, in my fiftieth year, I now bestow on anyone in their thirties. One of those waiting 30-somethings had instantly clocked my stick and sprang forward in his chair to offer it to me.

I was taken aback by this as this is the first time anyone has ever done this for me, and I tend to forget about the stick and what it might represent after a while. As a walking tripod I’m an expert wall-leaner, so I was more than happy to do some leaning and I politely declined the offer, but a door had opened; the gesture was a friendly supportive one, and it broke the ice nicely to talk about why we were both there. We made a connection.

I see the stick as an overwhelmingly positive thing anyway – a force for good – and when it comes to other MSers it’s a great way of connecting and breaking down barriers. When I decided to take the plunge and buy it, just over a year ago, I had been initially reluctant to be seen out and about with it, but it soon becomes second nature – almost an extension of yourself – and I even use it for walking to the end of the garden and back without a second thought. It’s not as cute and full of personality and intelligence as an assistance dog, perhaps, but it’s still an invaluable tool in my arsenal. I am mobility-enabled now and a whole new landscape to trample across has opened up in front of me.

The stick represents so much. An able-bodied person might assume a negative viewpoint, whether they mean to or not, seeing me as a victim (and I’ve had one or two tactless comments from people I know), whereas a newly diagnosed MSer might visualise themselves crossing this particular bridge at some point in the future.

I used to share a house with a philosophy graduate who once postulated there was no such thing as altruism – everyone has an agenda behind their actions whether they realise it or not, so I’m just going to project a bit and hazard a guess at his subconscious motives. I wonder if this offer of a seat to a bloke with a stick was to appease the mobility gods or maybe he was cementing his perceptions (in his newly-diagnosed way) of being part of the ‘MS family’. He may also have been understandably nervous about attending hospital for what is essentially a big deal and needed the connection for reassurance. If I’d wanted the sit-down, I would have accepted his offer, but I think it was good that I refused.

It was good because it conveyed the message, ‘even though I have a stick, I’m still OK. I’ve had all kinds of crap to deal with and I can still manage. I’m still strong. I’m still a cool dude in my WFMU T-shirt. I rock the stick. I’m still me. Watch how well I can lean on this wall.’ But more importantly, it also says: ‘You could be me. You will also be OK. You will manage too’.

As well as completing my first infusion, being offered a seat is also a major milestone on my MS journey – wow, two milestones in one day! I hate accepting assistance from anyone, even if it’s for something I wouldn’t be able to do in a month of Sundays, like I did when a couple of guys I knew shifted a washing machine for me recently. To do so reminds me of what I should have been able to achieve had I not been dealt the blow of this disease. Maybe I also beat myself up a bit for not being paralympian in my efforts to look after myself. It has to be a concept that I’m going to have to make peace with if I’m to do myself any favours growing into my fifties and beyond.

My mum always brought me up to offer my seat on the bus to anyone who needed it more than me. I thought I’d feel like an old man myself if I were ever to be offered a seat, particularly with a landmark birthday looming. In the end I actually felt a lot of acceptance: that of being accepted by other MSers on a level playing field – always a good thing; of me accepting the stick as an extension of myself with its positive vibes and its marvellous powers, but also, most importantly, me coming to terms with being offered and accepting help from others.