Moving Swiftly on…

My late mum was the fount of all knowledge when it came to family history.

She knew the names of all the distant cousins; who was born out of wedlock; who had died before their time and why; who had problems with alcohol; who was concealing their extra-marital affairs; who was LGBT in an era when this wasn’t mentioned, and things like that. She must now be a bit of a gossip among the ancestral ghosts, I think.

And she’d know all this on my dad’s side of the family, too.

Family history has always been a bit of a jumble in my head. Growing up, any innocent question about family on my part would be met with a reply that would instantly send my brain into an emergency shutdown, subconsciously maintaining a polite, listening face, while my mum – in her element – would start reeling off the facts: “my mother’s second cousin’s husband’s uncle was once married to the daughter of…” and so on.

Both my parents are no longer here. Mum died seventeen years ago, and my dad’s clogs popped relatively recently. Since I cleared their (my) old house I’ve been storing a few carrier bags in my loft, all stuffed with old photographs spanning the last 150 years or so.

Looking through them, has been informative, particularly because mum has helpfully scribbled a note on the backs of them explaining the situation and circumstance each was taken in. She’s also scribbled a note listing names and saying how those depicted are related to each other.

So, I thought it would be a good opportunity to build my family tree online; see how it all fits together, and store a few of those photos that I’ve scanned. I used Ancestry to do this, and frankly found it a breeze. I uncovered quite a lot of interesting information too. I’m also exploring the roots of the tree as much as I can, following them into areas where the gene pool generally stayed in a single spot over several generations.

Dad’s side of the family are quite a varied bunch, hailing from Scotland, Sussex, Devon, West London, Ireland and County Durham as well as a long line of Serjeants based in Ipswich (which is where my dad was born and grew up).

Mum’s family are very heavily East Midlands, and by that, I mean I have one strand in my direct bloodline from Nottinghamshire, one from the other side of the Pennines in the Staffordshire potteries, and the rest, the vast majority, are all north Derbyshire.

They came from Newark, Uttoxeter, Ashover, Heage, Chesterfield, Tupton and Wingerworth and they all converged on the new industrial town of Clay Cross to work in the collieries. A new railway tunnel had exposed viable coal seams as it drilled through the north Derbyshire landscape.

It was as if George Stephenson himself had pulled a plug from a plughole as he chuffed through, and in the subsequent vortex all eligible men for miles had been sucked underground to mine coal.

So, I’ve found the tree building illuminating, particularly with the little stories it throws up. For instance, my great grandad on my mum’s side (my grandad’s dad) is an interesting one. He was born out of wedlock to a 19-year-old mother, taking her name, Davies, instead of Swift like his dad and siblings. He had children with two sisters (one of the sisters had died young). Much later in life, he also discovered his parents dead in their brand-new retirement bungalow, asphyxiated in their sleep by a faulty gas fire.

On my dad’s side, I have a great grandad who worked as a butler in a large country house, who was himself the son of a Royal Artillery gunner, which probably explains why I can lose myself when polishing shoes using a pair of heavy-duty antique shoe brushes (family heirlooms, which I now figure must be 19^th century military issue).

Also on his side,I was interested to explore Dad’s Irish ancestry. I was always told I had O’Dowd family hailing from Sligo which is a part of the country Mrs Dave has strong connections with, and so is already quite familiar to me.

I’ve discovered, according to UK census returns, that my great great grandmother, Mary O’Dowd, was born in Roscommon in 1851 and not Sligo as originally thought. She died at the age of 51, an age recently arrived at by myself, and judging from photos and portraits, she had a relatively comfortable life in Pimlico, west London. She’s still a big grey area though, as I know nothing about her first thirty years, and I’ve only seen her married name written down. Even that changes from Sanderson (the official name) to Saunderson, and to Saunderson-Burage depending on where you look.

I can imagine it might be needle and haystack time when looking for a Mary O’Dowd, born in 1851 Roscommon. Particularly when you only have your family’s, admittedly reliable, word that she’s an O’Dowd.

I just wish I had more info on her family and her migration, which must be famine related, but who were her family members and how did she end up marrying into the English middle-classes? Did she make the journey alone? Who were her parents and family and what became of them?

I have three photographs and one watercolour of her, and she’s the spit of my eldest daughter. The earliest photo is of a little girl sitting on a stool in a photographer’s studio in London according to the info on the back, which suggests she migrated at a very early age.

Speaking of the spit of my eldest daughter, I bought her an Ancestry DNA kit for her to send off her saliva. I figured she’s a history student, so she’ll be into that.

She is.

Ancestry breaks your DNA down by parent and her reports that she had no Irish on my side but 6% Norwegian and a whole lot of Scottish spurred me into action.

So, what makes me me? How did I get the Norwegian? Which elements of my parents influence my genetic breakdown? Did I get any Irish from Mary O’Dowd? What geography shapes my English blood? Do I come from farming stock or mining stock?

So, I waited for the DNA kits to come down in price, bought one, did nothing with it for about a year, and then sent it off and waited a couple of months while the boffins in lab coats did their thing.

The breakdown goes something like this:

I’m 6% Irish which ties in mathematically to having an Irish great-great-grandparent. Thank you, Mary O’Dowd.

I’m 9% ‘Scandiwegian’ (a fantastic word I picked up the other day) – mostly Denmark and Sweden and mostly on my mum’s side which explains her love of IKEA, ABBA, Bjorn Borg, and Carlsberg Export (kidding, sorry Mum).

I’m 35% Scottish, explaining why there’s pictures of my great grandad Kay fully sporraned and kilted out in McKay tartan. Mostly dad’s side for that.

And I’m 50% English of which practically all of it is Mum’s, so East Midlands, a little bit of potteries, and some South Yorkshire. This ties in with where I live right now. There is nothing of note from the south of the country.

So, I’m not genetically a Serjeant it seems. My DNA shows no Ipswich, no Suffolk, no East Anglia at all!

It’s funny because I have a love/hate relationship with my family name. I’ve spent the last half century spelling it out for people. It’s even a legitimate alternative spelling of Sergeant (with a g), so actually appears in most trustworthy dictionaries as a more archaic version of the word. It lives on particularly at the opening of parliament and the serjeant-at-arms who accompanies Black Rod. But it is an absolute pain in the backside.

So, I’m wondering what would be a good replacement surname? What would I like to be called instead? What would fit in with my DNA? What would be cool?

I’m looking to my mum’s family tree, as ultimately, while I can claim the heritage from Dad, I’m not Scottish and I’m certainly not Irish. It would be cool if I was, I think, but I don’t want to be pretentious and I now feel more rooted, snuggled in the bosom of my Derbyshire ancestry more than ever. I think a Derbyshire name would be more relevant.

My first thought was my gran’s maiden name Wain. Wain is very much a Derbyshire name but it does have negative connotations among local secondary teachers I know, as a family of ne’er-do-wells and ruffians. Plus, I’m not sure about how it rhymes: Dave Wain, Shane Wain, Jane Wain, Dwayne Wain, Wayne Wain etc

So, perhaps my mum’s maiden name, Davies? Too Welsh, I think, and a bit like a Welsh version of Smith. I have no Welsh. Also, considering the family tree, it represents the potteries. I remember going to Leek once for a wedding and that’s the last time I set foot in Staffordshire, so I have no connections apart from a thin bloodline.

But there is a top contender. It sounds cool. It has a good meaning and derivation, it comes from a long line in a village local to me, and it died in my lineage when my great grandad was born out of wedlock. It would make a good tattoo of one of my favourite birds swooping past my ears or spiralling down my arm.

It should have been my mum’s family name:

Swift.

If I were to go through the hassle of changing my name. This is the one I’d choose for definite. Maybe it could be my nom-de-plume – David Swift. In my mind there’s nothing I feel uncertain about in this name, so I told my youngest about it.

“Cool!” she said, “Like Taylor Swift!”

Hmm… Maybe I’ll get the swift tattoo and leave it at that.

Oi! Pedro! …No!

I’ve admired your films and enjoy them for their melodrama, irreverent humour, bold colour, glossy décor, quotations from popular culture, and complex narratives.

I appreciate that desire, passion, family, and identity are among your most prevalent subjects in your films and I recognise that your work represents a cultural renaissance that followed the end of Francoist Spain.

But using multiple sclerosis as a lazy plot device to kill off a character in your film Julieta is unacceptable to me, and I’ve just got to say one thing:

No!.. Pedro. No!..

Your films have gained worldwide interest and developed a cult following. The last thing your audience needs to see is a person newly diagnosed with MS sitting in hospital being feeble in one scene, and lowered into the ground in a coffin in the next.

I’m disappointed in your insensitivity and your apparent lack of research or consultation with people affected by multiple sclerosis.

I will still enjoy your films, but you need to sort yourself out before you tread on the toes of any other people living with chronic illness.

Life limiting does not mean life ending.

***

Apologies to Paul Whitehouse, Harry Enfield and Wikipedia for the blatant plagiarism.

Under the radar

When I reached the age of thirty, I was helping my father-in-law do some gardening when I bent over to pick up a leaf and I felt a twang somewhere in my lumbar region.

This twang put me completely out-of-action for a week or so afterwards.

My GP had simply smiled and said, “welcome to your thirties!” with the jokey implication that I could start to expect things to fall apart from that point onwards.

Little did either of us know, that five years previously I had already had a precursor of what was to come, with an attack of doublevision that had lasted no more than an afternoon and has been documented only in the occupational health records of the London Borough of Hackney – my employer at the time. This was an episode that has been retrospectively diagnosed as Clinically Isolated Syndrome.

I was already being scoped out by the MonSter.

The next couple of years were medically insignificant, and then these were followed by a period where I was relentlessly battered by undiagnosed or misdiagnosed symptoms. These eventually led to my unwanted squatter moving in permanently. The MS diagnosis was confirmed and delivered to me at the age of 36.

Now I’m officially in my early fifties I’ve found that my body is starting to fall apart all over again.

Last year saw me fracture my spine while falling awkwardly, and thanks mainly to a recent YouTube video by neuro-guru Aaron Boster and a subsequent checking of the MS Trust website, I’ve learnt that osteoporosis is relatively common in people with MS.

Currently, after everyone else in the family has gone to bed, I’ve been watching a few ‘Dave programmes’ on catch-up. These are the sort of programmes that I love, and the rest of the family inexplicably have absolutely no interest in. One of these is Mortimer and Whitehouse Gone Fishing, where close friends, Bob Mortimer and Paul Whitehouse catch fish in various spots round the UK and, among other things, talk about a shared diagnosis of heart disease while they’re at it.

Both Mortimer and Whitehouse have featured heavily in my TV watching since my teenage years. Particularly through Vic and Bob, and the Fast Show. Also, I feel a sort of kinship with Paul Whitehouse because we share that same East End ex-employer. So, when their conversation turns towards their ill health, it’s very real for me and the more I listened to them, the more their description of symptoms started to hit close to home.

I think having a big diagnosis, such as MS, can mean that other illnesses and symptoms can often fly under the radar. I get an MRI scan every year, and my neuro always makes me smile in his write-up for my GP, by saying I have “a very healthy brain and spinal cord… apart from multiple sclerosis.” It lulls you somewhat into having a false sense of security. You rightly feel you’re being watched over and looked after, but it’s easy to forget that there could be conditions and illness lurking beyond the realms of your neurology specialist that won’t necessarily be picked up on.

I’ve had an allotment for quite a while which I’ve recently given up as it was getting ‘too much’, and a few years ago I noticed that I was getting a debilitatingly bad back like a dull ache beneath my shoulder blades while digging, or even when I was just strimming the grass paths or hoeing round my fruit bushes. Sometimes when wheeling my wheelbarrow around I’d have to stop, straighten my back for a few seconds, and then sit down until the ache subsided. It felt like someone, probably the MonSter, was jumping on me for a piggyback, giving me a squeeze round the ribcage as he did so. I’d get the same if I had set about vacuuming the house, very often finishing for the day after only doing one floor, promising to tackle the other floor and staircase another day.

I’d also get this ache while walking if I’d not rested adequately en-route. I’ve been going out for dawn walks for quite a while now, and I’ve always made a point of stopping for a rest every half a mile or so, to the point where I only walk along paths and pavements dotted with benches and perching points.

I remember a couple of years before the Covid lockdown in my pre-stick days, an allotment friend had stopped his van and asked me if I’d like a lift the final few hundred yards to my house as it looked like I was struggling to walk. I was walking back from the station after an MS related appointment in Sheffield and I’d had that ache, and was starting to bend over with the strain of remaining upright. I’d waved him off, with an “I’ll be fine, thanks” before lowering myself gingerly onto a low wall to rest for a few minutes.

I had just assumed it was all the MS. Even my neuro-physio had said I’d perhaps been overdoing it and was probably experiencing neuro-fatigue.

To a certain extent she was probably right, but Paul and Bob had set me thinking…

I like to moan about my MS a bit internally: I do have fatigue and balance problems; I do have leg spasms, and I do have doublevision which has itself improved somewhat over the years. I’m dependent on some serious medications, a walking stick, and a catheter prescription, but if I view everything objectively like my neurologist or nurses do, I must admit that I’ve been fairly stable since my diagnosis with only the occasional minor bump in the road.

Compared to some higher up on my neurology team’s list of priority patients, I’ve been lucky.

Very lucky.

So, what about this debilitating ache?

Is it the MonSter?

Is it related to the squished discs in my lumbar region caught by my recent x-rays?

Is it pain caused by the compression fractures in my vertebrae reverberating round my abdominal region like my GP said it would?

Or is it something else entirely?

From my vantage point on my watchtower, keeping my eye on the known inmates, did I miss that ninja-like shadow flitting around the perimeter fence?

My blood pressure has always been a little bit on the high side. Nothing too serious, but once, when I turned up for an Ocrevus infusion, the nurse on duty later told me they’d been on alert, keeping an eye on me as it had initially been ‘through the roof’. Also, my dad had taken early retirement back in the early ‘90s, due to a diagnosis of angina and heart ill health. He had been signed off as medically unfit to work.

So, with the Gone Fishing thoughts swimming around my head, I thought I’d better see the GP.

It’s noticeable how GPs seem to me to be on firmer ground when talking about heart disease than they are about MS and neurological symptoms. I guess it makes up a larger proportion of their caseload and it’s something they can get hands-on with. He agreed that my blood pressure could do with coming down a bit, so he put me on pills for that and he arranged for a blood test.

I agreed to come back in a month to see how things were.

I had a blood pressure monitor already that I’d bought online, so I made a daily reading and happily watched my bp sink to safe levels over the space of only a day or two. I also made a few small changes to my diet that I’d been planning for a while anyway. I cut out coffee, reduced my bread intake, ditching my breakfast toast for porridge with nuts and seeds, and I upped my oily fish and daily fruit.

My follow-up appointment delivered yet another big diagnosis.

It turned out that my blood tests came back fine apart from the monoglycerides which were a tiny bit high.

“It’s nothing to worry about” said my doc, “they’re borderline, but because of your angina I’ll put some statins on a repeat prescription for you.”

“Erm… excuse me? …did you say angina? Are you sure it’s not just muscular? Some sort of muscle fatigue?”

Apparently not. My dad had angina, he pointed out, so there was family history, and my pain had always subsided when I rested, ruling out anything muscular. He also pointed out that I’d said I’d had a recent episode where I’d struggled to catch my breath after watching something that had made me emotional.

Because I’d been experiencing it for at least three years, he was happy to call it ‘stable angina’, but in his eyes it’s angina, nonetheless.

So that’s where I am. My blood pressure seems to be under control (105 over 69 when I measured it this morning with a resting pulse of 61 bpm) and I’m not experiencing the aches under my shoulder blades on exertion currently. I also have an as-yet-unused spray for under my tongue if I get an angina attack, and it’s a call for an ambulance if that doesn’t work.

My pre-dawn walks are taking on a less slippery, less leaf-sludged winter route currently and I managed a full two and a half miles without stopping this morning which is something I haven’t been able to do for a very long time. I’m pleased that I can walk with confidence and at a clip. If anything cut my walk short today, it was spasms in my leg muscles and a little bit of footdrop rather than chest pains. In other words, just the MonSter waking up.

So, I guess this is a welcome to my 50s. It’s a warning shot in many ways, but perhaps most notably it tells me that just because I have one big diagnosis, it doesn’t mean I’m otherwise invincible.

I can also take away the positive thought that had I not been used to talking with medical professionals on a regular basis, and if I hadn’t had things go so dramatically wrong in the past, it may not even have occurred to me to approach my GP in the first place.

Hi! How are you?

“I’m pretty shit to be honest. I’m in the crap gap.

“Sorry, I should explain. It’s that time between my medication wearing off and my next dose or infusion. I get an infusion every six months…

“In hospital, yeah. I have to go to Sheffield for it. I get a day off from work for it.

“Yeah, I know, lucky me. It’s something called Ocrelizumab.

“…Ocrelizumab.

“It’s a bit of a mouthful, isn’t it? There’s someone on YouTube who calls it Ocreloozimab, I’m not sure if he’s doing that deliberately or not. You can also call it Ocrevus. Anyway, it wipes out all the B cells in my immune system and it starts to wear off about a month before the next infusion and I start to feel crap again, like more fatigued, and a bit…

“Sorry, not a bit….

“I can get very depressed and less able to walk, keep my balance, and stand upright, hence the stick – which I need constantly now anyway. My leg spasms really kick in at night as well, ‘scuse the pun.

“Yeah, they spasm every 20 seconds or so, my calf muscles, and they stop me sleeping. I get them every night anyway, they just seem to be a bit worse right now.

“Yeah, it is painful, though it’s not what you might think of as pain. It’s more like an electrical jolt that makes my knee fly up and my foot curl upwards. I take Gabapentin for the spasms, but it doesn’t always work, and also sometimes I take it too late in the evening because I’ve forgotten, so it’s probably my fault as well.

“The crap gap is a pretty miserable time and I’m slap bang in the middle of it.

“Yeah, it is my birthday next week.

“Thank you! Ha! Sod’s Law, eh?

“No, I don’t think the doctors came up with the term ‘crap gap’, I think it’s just MSers like me on social media.

“Yeah MSers – people like me with MS, they’re a pretty cool bunch by and large.

“I don’t think my doctors even think the crap gap really exists to be honest – the ones that have heard of it – but then, they don’t have MS and they don’t take the meds do they?

“Anyway, how are you?”

What I really say

“Yeah, I’m OK, soldiering on, you know? How about you, are you OK?”

An assault on the senses

I’ve looked deep into the eyes of the MonSter. When I did, everything shimmered with radiating rainbow coloured clouds.

Whenever I glance to the left, he wiggles his outstretched claws and warps the atmosphere so that everything I see, I see twice.

When I stroke my hands across his shaggy hide, my fingertips often tingle, picking up a strange alien static, and my legs turn to jelly.

These legs, of course, are the legs that he clings to when I’m out and about, and the legs he gnaws when I’m trying to relax, kicking behind the knee every 23 seconds or so.

He also has a distinct smell when he gets hot and sweaty. If, like me, you’ve ever burnt out a clutch cable on a car struggling with a reverse park on a steep hill, he smells precisely like that. When I used to run, while I was still able, he would find it fun to chase after me slavering, grunting and panting as I tried to escape him. I’d overheat and, in the shower we shared afterwards, squeezing together too close for comfort in the cubicle, I’d smell the scent of his sweat, like burnt rubber wriggling up my nostrils.

Luckily I’m not sure what he tastes like yet, but if it’s anything like he smells, no thanks.

Strangely though, I’ve recently come to realise that I think I might also be able to hear him making a poor attempt to tiptoe around me at night.

For a number of years, if I’ve been especially tired, I’ve had a tiny bit of transient tinnitus that I’ve thought of as the MonSter’s pulse. It’s in my right ear. Try whispering the following as fast as you can: “pad-pad-pad-pad-pad-pad-pad-pad” like an extra superfast heartbeat. That’s what it sounds like.

Someone on Twitter told me what it was. I think it was to do with an oscillating bone in my inner ear or something like that. Like a twitching eyelid, I suppose. Eventually it goes superfast, rises in pitch and hums off into the void. I’ve no idea if it’s MS related or not.

But there’s something else.

I remember someone once telling me about when the composer John Cage was researching silence, leading to his piece, 4’33”. He realised we could never escape our ambient sound because our bodies themselves also generate it. The piece is actually a serious contemplation of our experience of sound. I suppose silence in music is like dark matter in the universe. It’s there, but what is its shape and mass?

As part of Cage’s research he spent a brief stint inside an anechoic chamber – a room that cuts out all background noise. He was probably excited at the prospect of experiencing absolute silence; silence in its purest form; the maddening slow-burning silence of solitary confinement perhaps. Of course, in terms of his immediate surroundings, he did. He must also have expected to hear his heartbeat, his digestion and breathing, his joints cracking and maybe the damp squit of his eyelids blinking. What he wasn’t expecting, though, was the deep rumble of the blood in his veins, and the high pitched hiss he was told was his nervous system.

I’ve been aware of this nervous system hiss since I was a kid as I thought that was what people were referring to when they talked about a ringing in the ears. I think it must be relatively loud for me, so the fact that Cage wasn’t expecting it surprised me (though there could also be over 30 years of gig-going tinnitus in the mix for me as well of course).

What I hear now is that uniform hiss for the most part, but, again when I’m tired, a brief “tschhh!” noise every second or two; a crash like someone tripping over a speaker, or hi-hat, or when you first switch on a garden hose and it spends a few minutes spitting out the air bubbles.

I guess my question is, if it’s the nervous system, am I hearing the MonSter stumbling around in the crashes or is it a sonic experience that everyone else has?

I imagine any demyelination of my auditory nerves could cause a tinnitus-like noise that a night watching Spacemen 3 at the Leadmill back in 1989 could do, or in the same way as demyelination on the optic nerve can cause expanding, shimmering rainbow clouds in my vision.

Whatever it is, sharing your life with a MonSter can be a full-on assault on the senses at times. When he eventually calms down and cuddles up to me in bed at night, wrapping me up in his big strong hairy arms and breathing his hot smelly breath into my neck, I wonder what he’s dreaming of. What plans to cause mischief does he have when he wakes up late, like the moody teenager he is?

It’s something you have to live with and get used to, no matter how unpleasant. He’s decided to attach himself to me for the rest of our lives and, while I can ignore him, or drug him into submission to a certain extent, he is getting bigger and he is getting in the way a lot more.

Also, it’s probably time to get my ears tested.

“C’mon get in the car. Let’s go for a ride somewhere…”

“So, where are you guys from?

“The UK? Do you guys know Totten-Ham?

“See, I follow your soccer and I support Totten-Ham Hotspur. I’m a Hotspur fan.

“Do you know why I support Hotspur?

“Well, I’m a fan of the Dave Clarke 5, and they’re from Totten-Ham, and they support Hotspur.

“Do you know the Dave Clarke 5?”

…

Guess where I’ve just been to, on my holidays?

Yep, you guessed it.

As a family, we’ve just completed a road trip from San Fransisco to Los Angeles, driving along California Highway 1 for the most part, aka, the ‘Pacific Coast Highway’, aka, my favourite song on my favourite album by my favourite band*. So, this is just a report based on my personal experience as a milk-skinned stick-using pescatarian English bloke with MS in sunny California.

Hopefully there’s a few useful hints and tips if you have MS or if you have a disability, or mobility issues like mine. I don’t use a wheelchair or rollator currently, but there may be things here you will find useful for a trip to the good old US of A if you do.

We stayed in San Fransisco, Monterey, Morro Bay, Santa Barbara, Hollywood, Huntington Beach, and Redondo Beach.

We stopped at various scenic spots en route including Santa Cruz, Carmel by the Sea, Solvang, Malibu, Santa Monica, Long Beach and other little pockets of the wider LA sprawl.

We flew from LHR to SFO with BA on an A380, and with American from LAX back to LHR on a 777.

Please note that this report is based on a trip in the summer of 2022. A lot of places in California were still expecting you to use face masks and have Covid passports. I have also made a number of trips to New York and Florida in previous years when I was a bit more mobile. Some of these tips may apply to the wider USA and some, like the cannabis one, may only be California-specific.

Cars and traffic

A few months before the trip I applied for a temporary disabled parking placard (like a blue badge) from my local government brothers and sisters in Sacramento. I strongly recommend you do this if you’re using a car on your trip. Allow the process to take 3 or 4 months as you’ll need the application to be signed off by your GP or consultant before you send it off, also it allows time for them to send it back to you if you don’t fill it out properly or if (like me) you forget to include stuff. Having said that, we were hiring a car so this is easily the best thing we did.

This rear-view-mirror mounted placard opened-up the world to us. There’s disabled parking everywhere, I’d say more so than in the UK, so this is an absolute must if you hire a car, or are being driven anywhere. The relief of having the priority in a country where the car is king is something that could turn what could be a mediocre and slightly stressful day into one of near bliss. A packed car park at Santa Monica, for instance, had only one space left and it was a disabled space right on the beach.

Also, we basked in the glory of the car park staff at Universal Studios waving us past all the queues of traffic to a spot right at the front gate.

Even on the busiest days, and after battling traffic on the freeways, you could be pretty confident a big beautiful space with your name on it would be waiting for you exactly where you needed it.

Bays and on-street parking are marked with blue paint and cross-hatching. Note that some (but not all) car parks are cheaper or even free if you’re disabled.

Airports and flights

My top airport tip is to get accessibility assistance. A wheelchair will be your chariot as a member of accessibility staff with a death wish will wheel you frighteningly fast through the sea of air-travellers, parting them like Moses on speed. There’s a little bit of self-awareness to overcome if you’re not a wheelchair user, but that disappears as soon as the first barrier is unclipped in front of your nose. It’s such a breeze! Basically, you’re wheeled from the bag check to the actual aircraft, by-passing all the queues at security, though you still have to get up and walk through the scanner, removing belts and dumping stuff in trays like everyone else. It’s just a lot faster and your family/carer can skip the queue too.

At LAX, we were the very first people on the plane being at the front of the queue at priority boarding. The guy at Heathrow even came on to the plane to stow things in the overhead locker for me. We were also the last off, but again, you by-pass the queues at security, so you arrive at the luggage carousel at the same time as everyone else. Simply contact the airports you’re using and in the USA be prepared to tip; in the UK ask your helper if you can give them a good report online (he handed me a feedback card from his shirt pocket after I asked).

Another useful airport tip is to get a sunflower lanyard to show you have a hidden disability. I don’t have one but a friend of mine with ME just used his while travelling in Eastern Europe and said there was even a lounge area for people with chronic fatigue at one of his airports.

On the plane, make sure you get up and stretch at regular intervals. I get violent clonus in both knees if I stand up after sitting for a long time, so I would get up over Greenland while everyone else was fast asleep and hope no-one was watching the guy in the aisle having a standing seizure. Have a walk to the end of the aircraft and back, turbulence, balance issues, and flight crew trolleys permitting, of course.

I have never been asked to explain medications or catheters at luggage drop or security, but as I take a lot of pills, I also take the little leaflets that come in the boxes to justify them if I need to.

Get a hotel near the airport for the last night so you’re not stressed out on the day you leave

Buses and taxis

“Hi, you guys. Are you from the UK? Did you just get the bus? Oh my God, I haven’t used the bus in like twenty years!” Avoid the public buses. They might drive through unsavoury areas unexpectedly. The drivers don’t seem to be checking the tickets in San Fransisco, so our family were treated to a man struggling vainly to keep his trousers covering his arse, and another man staring one of us out while doing a strange dance with an apple as if it was a mystic orb.

There were also people openly taking drugs in one of San Fransisco’s BART station entrances and lying on the floor in our way, so when out-and-about we tended to rely on…

Uber or LYFT: Download the apps if you don’t have them already. One can be pricier than the other, depending on where you are, and if you’re in an out-of-the-way spot (like when we were at Greenwich Observatory in LA) it could be worth using both apps simultaneously as some drivers cancelled our fare at the last minute.

Public Transport in the USA is nowhere near as good as the UK in my experience.

Walking

Pace yourself and rest whenever you can. There are benches, but just like home they’re not everywhere. Luckily Americans seem to have an in-built urge to ease your suffering, so kudos to the staff member at a Brandy Melville in San Fransisco who, seeing that I’d been dragged a number of blocks by a pair of enthusiastic teenagers, cleared part of a window display so I could sit down.

Crossing the road takes a bit of caution. Don’t forget to look left initially for oncoming traffic when crossing the road. Also, cars can turn right on red lights, so even though the lights say no, it’s legal to turn right on a stop sign in the USA and there may be someone turning right as you step off the kerb. Also, watch the kerbs. If you’re in a crowd and not aiming for the relatively narrow drop-kerb at the corner of a junction there can be a bit of a step to get onto the sidewalk that you may not be used to. I didn’t trip but can see how it might happen for someone experiencing heavy legs.

In the UK we have bad areas in towns and cities, but in American cities we found our overall sense of ease could change from block to block. We sat for a nice coffee in a cool hipster-ish coffee shop in San Fransisco’s Mission District with people sitting at street tables and old ladies walking their dogs past the window, but after crossing the road at the end of the block, we found ourselves in the seventh level of hell. If you have a mobility issue, you might be on high alert and worried that you can’t run away if you need to.

Medication and catheters etc

Make sure you order your repeat prescriptions, so you have all your medication for your travel and some you can leave at home ready for your return. See also my tips for airports and luggage earlier.

If you use them, take more catheters than you need, and split them across all your luggage in case some of it goes AWOL. I actually don’t use catheters as much when I’m abroad (I guess I eat and drink less and perspire more), but I take way more than I think I need, and as much as I can fit into my carry-on just in case any go missing. Just think that when you’re using them, you’re actually freeing up space in your case to bring gifts and souvenirs back.

Pack some meds for the flight. Heathrow to San Fransisco is eleven hours. If you use an anti-spasm med like gabapentin, you might need a low dose to counteract sitting still for long periods. Similarly, anti-histamines are a good way to ensure you get some shut-eye.

Cannabis is legal in California. I didn’t use any this time, but I imagine you could do some research and find a good shop with a licensed physician to help you try some for pain-relief if you need to. **Imagine a disclaimer here accepting no responsibility for anything that might happen as a result and that this post doesn’t condone the smoking of weed etc.** Just be aware it’s legal and above-board and no one will bat an eyelid if you enter or exit a cannabis retailer. They often look like chemist shops from the outside, you’ll see the stores everywhere, and you’ll smell it on the breeze wherever you go. Obviously don’t take it out of the country.

Attractions

As previously mentioned, a disability placard in your car will remove a significant chunk of stress from your day.

Most attractions have disabled access. Alcatraz, for instance, has a bus/tractor thing to take you at walking pace from the ferry to the prison for those that don’t need to make a 13 storey climb to the Traz entrance.

Universal Studios and presumably other parks have a queue pass, so if you want to go on a ride but there’s a 50-minute queue, the person overseeing that queue will give you a time to return so that you can just go straight in when you come back. You can spend that time sitting somewhere shady or checking out interesting things nearby.

The rides also have a notice to say whether the ride is suitable or not for someone like you. It’ll say things like ‘this ride is not suitable for people who get motion sickness, or for people with the following conditions…’ and then it’ll list things like heart problems, bouts of dizziness and so on. I found out, on the Harry Potter ride, that I don’t do travelators or moving walkways, with humiliating results.

If you have a disability you may also be able to skip the queue in some attractions. We were ushered into the planetarium at Griffith Observatory in LA, for instance, before everyone else and as I was apparently the only disabled person in to see the show, we had a whole row to ourselves.

A lot of Covid restrictions existed in LA at the time we visited so, before you travel, download your Covid passport to your phone or you could be turned away from some places. Don’t forget a mask as well.

Food

Dining out is very expensive, particularly while the pound is weak against the dollar. If you want to put together a light lunch while on the go, I’d recommend a regular supermarket. In a 7-Eleven the range isn’t as good, but it’s way cheaper and more geared up for breakfasts: coffee, muffins, pastries yoghurts etc

Vegetarian options are thin on the ground. I didn’t find a vegetarian section in the local supermarket. I asked someone behind the counter in a burger place if they did a veggie burger: “Sure!” and when it arrived, it was a bun with some lettuce, some onion, a slice of tomato and some mayo.

On one of our last days, I found a guy on a market selling vegan food, so we ordered 4 boxes for the four of us and he did a deal without us even asking, cutting the price and throwing in an extra box. It was delicious, but I suspected business had been slow for him.

Toilets

Most toilets have a disabled cubicle with a bin in case you need to throw away a used catheter, pad or ostomy bag etc. Be prepared for seemingly able-bodied people using the cubicle as well though. I can’t remember seeing a separate disabled toilet anywhere except at Santa Monica Pier where they were all just a row of cubicles anyway.

Most toilets have hands-free taps and hands-free paper towel dispensers.

Accommodation

You will be extremely unlucky if you don’t have air con but…

Does it have stairs or a lift?

Does it have a safe in the room?

Does it have an ice machine?

Does it have a coffee machine, and does that coffee come fully caffeinated?

Is your room overlooking a busy street with sirens going past in the middle of the night?

Just keep in mind what I said earlier about the overall vibe of a place changing suddenly from block to block in San Fransisco and LA. Ask at the front desk about dodgy areas. When I asked this question to the guy on the front desk at the Union Square Hilton in San Fransisco, he just said “When you go out the main door, don’t turn left.”

In LA, our block seemed OK, but over the road was a big encampment of rough sleepers, and the next block along was being paced by sex workers.

Americans

For the most part, I love ‘em.

If they look friendly and approachable, and most of the time, even if they look unfriendly and unapproachable, they’ll go out of their way for you. They’ll see you with your stick (your ‘cane’) and hold open doors and free up space on seats without being asked. A seemingly able bodied bloke exiting a disabled toilet held the door open for me and asked if I was OK.

They all automatically respond to your thanks with “You’re welcome!”

They’ll find you interesting and ask you questions about London, and driving on the left, and punk music, and Scotland, and Totten-Ham Hotspur.

I tended to attract American dads while waiting for the family to finish their rides in theme parks, including one smiley guy who stopped me from nodding off in the shade (“Hey man, are you still with us?”) before asking me where he should take his brother when they visit London in the fall.

They still say ‘handicapped’ instead of ‘disabled’ though, so you may need to look out for handicapped toilets, handicapped access, handicapped parking etc. In the USA they can be a little behind on the social model of disability in some ways but thankfully not in others and the overall provision of disabled access is generally excellent from my point of view, but you may have a different opinion depending on your needs.

Weather

The UK and western Europe were enduring a heatwave while we were in California. The temperature in San Fransisco was bearable and cool – I often wore jeans and a fleece when out and about. It was foggy all the time we were there and all down the coast to just beyond Morro Bay.

Research the weather. Just because it’s California doesn’t mean it’s guaranteed to be hot. We found that once we left the coastal fog zone, things heated up considerably. It’ll be a dry heat though, and I think it rains about 4 days a year in LA. You feel sweaty, but not grimy necessarily, and everywhere has air con.

In the sunnier spots, I found it nice to just lie on the beach and ease my painful calves by burying them in the sand. The sand is hot, and for me, it was soothing to be able to do that.

Returning home

Have someone meet you at the airport.

Don’t book anything for a week after you return. Your blog posts will be riddled with errors, and you’ll be jet-lagged for a few days after you get home. You might feel OK, but your rhythms are out of sync and your body needs to do a reset.

Try not to feel too sad that you’re back.

Pacing yourself

Before we left for the States I’d expressed worry to my MS nurse that I would be fatigued and unable to keep up with everyone. She said that was nonsense and I’d be on a holiday high and therefore immune to the darker sides of the disease. She was wrong of course, MS is MS at the end of the day, no matter what you’re doing or where you are, and it can severely impact on your ability and enjoyment of what you’re doing. There were days I had to push through, barely able to walk upright, and days where just ‘one more block’ seemed more arduous than an eleven hour flight.

There’s a method of explaining fatigue that virtually all MSers have heard of called spoon theory where you start the day with a handful of spoons and each time you do an activity you give away a number of spoons equivalent to how difficult the activity is for you. Getting out of bed and getting dressed can equal a spoon or two for some people, and a day at work can use up the day’s supply for others.

I like to think of it as like charging a phone. You start the day with 100% and this starts draining as soon as you open your eyes. Whatever you do then uses battery life. Some apps (activities) drain your battery more quickly than others, so you need to find a charger, preferably a fast one so you can take some photos and post them on Instagram later. The faster chargers for me were often found in shady quiet coffee shops and involved an iced latte or similar, and I’d just like to say a big thank you to Mrs Dave and my two teenagers for silently recognising when I was flagging and allowing me some pockets of time and space to recharge the battery from 1% to 20% before carrying on.

I averaged about 11,000 steps a day according to the reasonably accurate pedometer on my phone, maxing it at 23,000 steps on the Brandy Melville day. Pretty good going which I put down to the fampridine.

And that’s it!

I hope it was useful and/or interesting, and… have a nice day!

...

* SY PCH

Accurately portrayed for once

A gift to medical science

One of my new year’s resolutions (made in April or thereabouts) was to keep in touch with people more; become a little bit less of a hermit, and generally be more sociable. Those of you who know me well, might think that a bit of a tall order, but I figured the COVID lockdown hadn’t really affected me much, and that was probably indicative that I should put myself about more.

Also, working from home and finding any excuse to contact colleagues or attend virtual meetings made me realise I was probably less of an introvert than I thought.

So, I decided to investigate volunteering, and not the sort of volunteering where you sit behind a till in a charity shop, but volunteering in ways that would be of unique value; somewhere I could bring something purely Dave to the table. If this could be in a way that fitted in with my ideals and values as well, then that would be perfect.

So, to me, apart from work-related skills, the obvious thing was to put the MonSter to good use. He’s generally well behaved after all; he’s mostly house-trained, but still sufficiently interesting in the right circles.

I can no longer give blood because of the MS, and hopefully it’ll be a good while until I can donate my organs to the NHS and my brain to a medical school brain bank, so I wondered if I could contribute to medical science while I was still alive. The ideal opportunity came-a-knocking when I saw an advert from my local hospital looking for volunteers to help in their brand-new education unit.

After a couple of telephone chats, and a quick medical exam, I was placed on their books, and a couple of weeks ago they called me up for my first mission.

I’ll mainly be working with undergraduate medical students, for a day here and there, but it could also be with hospital management, nurses, junior doctors, or consultants. Students need practical hands-on experience of dealing with real (living) people with real medical issues and because I have such lovely examples of nystagmus (shaky eyes) on extreme left and right gaze, fasciculation in the calf muscles (twitchy legs) and my legs sometimes spasm after I sit down too long, they thought I’d be a good test subject.

I also display another symptom that I’d demonstrated to the facilitator, Dr W, in our initial chat, something that I knew was pretty darn cool, and something she said she’d only ever seen a couple of times in her career, but more of that in a bit.

And so, it has come to pass. I’ve finished my first morning as an example patient, literally having my head examined by ten students from a university hospital in the midlands. After an hour listening to a rundown of head wiring, I took part in ten cranial nerve examinations split into two sessions. Each student took their turn with me one-on-one for about ten minutes while the others watched.

Because you have someone’s full attention and they have yours, it reminded me of the time when the artist Marina Abramović sat and stared at people individually, one after the other; giving them the full eye-to-eye across a table.

So, for the cranial nerves: I made a grin, I screwed my eyes up; I stuck my tongue out, saying “aaaah”; I had my uvula examined to see if hung normally; I had my pupils looked at while they swung a pen torch into each eye; I resisted having my eyelids pulled open; I turned my head left and right while they tried to stop my head turning left and right, and I shrugged my shoulders and resisted them being pushed down. I said whether I could feel my face being touched in six different places corresponding to trigeminal nerve endings; I had a ringing tuning fork placed behind each ear and then placed in front and asked which was louder; I recounted numbers whispered into each ear while a noise was made in the other; I had my field of vision tested and probably some other tests I haven’t remembered.

The students were all a little awkward and shy, and no-one easily volunteered to go first. They varied in ethnicity and background; they were eighty per cent female; some knew their stuff; some needed prompting, and some had to be shown the correct way to do something, particularly for the field of vision tests which are a little bit tricky to coordinate.

And it was following a finger left and right with only my eyes moving where I truly shone.

I still get a bit of doublevision looking left which can’t really be detected externally, but when I get the lateral nystagmus on extreme left and right gaze, it is a bit of a textbook example, so they were all glad to uncover this. I’m fairly normal with my other head functions, so this was such a good thing for a medical student to find and they were all rightly proud of themselves to unlock this particular trait. It is a low hanging fruit for someone on the hunt for visible symptoms, but it’s a good one to discover, and they each had their moment of “aha!”.

Eventually, each session ended.

“So… What do you think the patient has?” asked Dr W.

The room fell silent, everyone focused on a spot on the floor in front of them.

“Anybody…?”

There was one guy who’d answered all his questions correctly in the lecture room, and had been a little more confident than the others, volunteering first to do my exam. “Erm, when I watched his eyes move, I think, erm… one of them stopped where it was for a fraction of a second while the other carried on moving.”

“VERY good! You only ever really see that with one condition.” said the doc, and then, annunciating each syllable: “It’s called inter-nuclear opthalmoplegia. It’s a bit of a smoking gun. Do you care to hazard a guess at the condition?”

“Erm… is it… MS?”

And now for the big reveal, a ‘ta-da!’ moment like you get on the telly.

“Dave, what condition do you have?”

“I have… MS!” I replied smiling at the guesser.

I then answered a few questions about my diagnosis journey, and I recounted how important it was to piece together a medical history. What might, in isolation over a period of time, be diagnosed as a potential detached retina, an inner-ear infection, and a mystery virus causing a debilitating lack of energy, could actually be optic neuritis, vertigo and fatigue: three pillars of an MS symptom-portfolio.

And because everyone else had been too wrapped up in the nystagmus to notice the more subtle elements of my eye movements, Dr W gathered everyone round and made my eyes do the left-right one more time, illustrating the blip in movement with both her index fingers, so even I could understand what had happened.

Chatting with her afterwards, she told me they were all third-year medical students and none of them had really practiced on a real living person until now. “Every year, I tell them they really need to get over their fear of touching a stranger and being one-on-one with them. It’s an essential part of the jobs they want to graduate into after all. These barriers need breaking down, so having someone such as yourself volunteering is really valuable, thank you.”

I thought with a smile of the time an initially chatty student had fallen silent, unable to make eye contact after they’d watched a rod being inserted somewhere very private to inflict Botox into my bladder wall.

I enjoyed the morning too and I really felt like I had been of real use. One of the students had stayed to chat with me for fifteen minutes in the tea break. She had had a squint corrected as a little girl, so could relate to my doublevision and eye problems. Also, she had recently been diagnosed with ADHD, so I asked her questions about that and her career ambitions, and I learned something from her too. I said it must’ve been like jigsaw pieces falling into place on diagnosis like it had been for me, and I just provided a listening ear while she bounced from one thing to the next.

I’ve spent most of my adult life losing contact with people and regretting it, and I think that’s where the new year’s resolution came from. Just days before my fiftieth birthday last year, I’d bumped into an old school friend, completely by chance, at a family wedding reception of all places, fifty miles from where we’d both grown up.

This was someone who I’d hung around with a lot as a teenager, and had been very good friends with for a couple of years. Seeing her again was like the intervening thirty-five years hadn’t happened and we both remarked on the other members of our little crowd and who we’d lost touch with since we’d seen each other last. I reflected afterwards that I need to value the people around me more. In another thirty-five years, chances are that I’ll be dead and buried, and becoming a gift to medical science all over again.

DVLA 2022

Like most MSers in the UK, I have to renew my driving license every three years. What should be a simple job – where I tell the licensing authority (the DVLA) that nothing has changed and I get my licence back – often turns into a year-long tug-of-war between me and the authorities.

Because you’re still legally entitled to drive while they spend a year doing their detective-work, it ends up being valid for just two years by the time it returns.

I know I don’t need the plastic license to drive, but try and hire a car on holiday, or try and provide some photo ID without taking your passport out and about with you, and you’ll see where it becomes difficult. I’m embarking on a road trip along the Californian coast this year. Without a physical licence, life on my hols could become very difficult indeed.

After they receive your forms, the DVLA medical group might write back to ask you to make appointments with medics and opticians to prove you’ve told them the truth. They might also send you new application forms frustratingly repeating the same questions as the ones you’ve already submitted.

Of course, when this happens the annoyance, and let’s be honest, the worry, starts to build up. Every letter postmarked Swansea dropping to the doormat is accompanied by an equivalent drop in mood.

So, it’s a bit of a battle. On one side there’s the DVLA Medical Group, and on the other, there’s me and my MonSter, my family and friends, my neurologist, my GP, my optician, my physio, my cats, the entire population of driving licence wielding MSers in the UK, and this year for the very first time, my Member of Parliament, Mr Toby Perkins MP. Toby was drafted in to send the DVLA a stiff email to ask them why they were taking so long.

So, within a week of Toby sending his email, I received a phone call from a friendly sounding woman with a Swansea accent, just double-checking everything on my form was correct. When I assured her it really was, I was informed that my application was now on its way to one of their doctors for approval, and it shouldn’t be long now.

“How long, roughly?”

“Within a couple of weeks.”

Hooray!

A couple of weeks later a brown envelope with a Swansea returns address arrived in the post.

Eagerly, I tore it open.

“Dear Mr Dave”, it read, “We’ve nearly finished processing your claim,”

Hooray!

“Before we issue you with a new licence, please can you provide an up-to-date picture of you with your MonSter for the card? Just fill this form in, and stick a passport photo on the sticky bit. Make sure you return it to us in the next 14 days or we may get nasty and revoke your licence”

What?!?… Booooo!

OK. Strike while the iron’s hot. “C’mon MonSter, let’s go to ‘big-Tesco’ to get a passport photo”

It being a weekend, I knew it was going to tire me out. I knew big-Tesco was going to be busy and I knew my MonSter was going to be super-excited to have his photo taken. Indeed, he was – bouncing around with that ugly grin of his. I locked the front door of my house and turned to walk towards my car when he accidentally bumped my walking stick just as I was about to lean on it. The bottom of the stick flew in front of my ankles, and I fell forward, tripping and entangling myself in the very device I use to keep myself upright.

I headbutted the cobbled path in front of my house.

Badly shaken, and with a throbbing nose and forehead, I eventually picked myself up, headed back indoors, and checked myself in the mirror. Yes, a nice bruise was forming on the bridge of my nose. Thanks MonSter! Even though I no longer feel physically up for it, I really am going to have to go and get this photo done today now; I can’t have a huge bruise in the middle of my face and on my driving licence photo for years to come.

So, after I’d recuperated with a sit down and a cup of tea, I ventured out again. Big-Tesco was every bit as bad as I expected it to be and the MonSter, although a bit tiring, largely behaved himself and actually sat still to have his picture taken.

I dutifully stuck the picture of us both on the relevant bit of the form and signed it, remembering to keep my signature within the box. Mrs Dave then kindly offered to take it to the Post Office as she was going there anyway on Monday morning and she’d send it as a next-day signed-for delivery. I agreed even though it was going to cost about £8 to do that. We weren’t going to have any margins of error on our side.

Literally three days after the form was sent, a Swansea number phoned my phone.

“Hello? Is that Mr Dave?” asked the woman in a rich, Welsh timbre.

“It is…”

“Hello. I’m calling from the DVLA. Just to let you know, there’s a letter in the post asking you for a new photograph. “

“Yes! I’ve received it! I sent it back with a photo… next day delivery… to be signed for… you should have it already…”

“Oh! …OK… Ermm… I was just ringing to let you know to ignore it. It was sent in error.”

I let out a long sigh. It’s never easy.

About a week later my new licence arrived. The whole process had taken nine months. Without Toby’s involvement, it could easily have taken over a year like it has in the past.

I understand why, with a progressive condition, you need to be investigated, and I understand the need for temporary licenses, I just think it could be a quicker process. I’m not sure of the resource levels at DVLA HQ in Swansea, but I wonder if some investment from the government is required here or are disabled drivers as low on the list of priorities as I suspect they are.

To put it into perspective, in preparation for the trip, I also applied for a temporary disabled persons placard (the American version of a blue badge) from California State in February 2022.

The form involved getting my GP (my “physician”) to fill out a section stating that I had MS, and after I’d included photocopies of a hospital letter with my diagnosis and a photocopy of my blue badge for good measure, I sent it to a post office box halfway round the world in Sacramento.

A couple of weeks later it was returned. I’d forgotten to include ID.

Damn! I need to get this sorted before my holiday. I photocopied my passport and sent it back.

Again, a couple of weeks later, an envelope from Sacramento landed on the doormat. It was the disabled parking placard. The whole process from beginning to end took just less than two months.

Remember, the DVLA took nine.

This isn’t the first time I’ve written about the DVLA. Sadly, I don’t think it’ll be the last.

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:

Fampridine

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.

Cats

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

Meteorites

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:

Pros

• 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.

Cons

• 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.