Monday, 10 April 2017

and the results are in

Today I went for a second walking test as part of my Fampyra / Fampridine trial. As I mentioned before, I'd already noticed enough of an improvement to have decided that I was going to stick with it for a little longer. Coupled with physio and exercise it certainly couldn't do me any harm, even if the results hadn't been quite as miraculous as I might have hoped (cards on the table: I really hoped it would be miraculous, even if I'd [unconvincingly] told myself that it wouldn't be a big deal either way).

So earlier on I went to the same clinic I visited exactly four weeks ago and did the same two-part test. The nurse hadn't shown me my times and she hadn't looked before I started walking today.

Now I admit I was really pushing myself to walk as quickly as I possibly could. But when I saw the results they were pretty mind blowing. The nurse was fairly gob-smacked too.
the scores on the doors
Trial One (aka "There") had changed from 13.6 seconds to 5.9 seconds.
Trial Two (aka "... and Back") had changed from 15.5 seconds to 6.4 seconds.

That's an increase in speed (using my dim and distant GCSE Maths) of 57% in both cases. And that's after only taking the tablets for two and a half weeks.

I'd been trying to play down my expectations but seeing it written it down in black and white, when my walking has been a long-standing issue for me, was really emotional.

The Nurse will now fill out a prescription for 6 months and we'll see how it goes.

The only downside of these pills is an obvious increase in over-confidence.

For example: I needed to speak to a different MS team to get some more forms for my Tecfidera blood tests. When I went down the corridor without using either of my walking sticks the Fampyra nurse was HORRIFIED.

It would've served me right if I'd planted my face right there in the corridor.

Thursday, 6 April 2017

my (first?) 14 days with fampyra

Not Fampyra / Fampridine. This is Vampyra in one of my favourite films, Plan 9 From Outer Space
Day 1
Maybe I’m concentrating more on sensations and the quality of my walking, maybe it's the wonder of the placebo affect, or just the feel-good sensation of doing something, but I feel more stable already. More control over my feet, toes more responsive after my usual vigorous after-shower massage.

Day 2
A little thing but I'm able to move the toes on my left foot without feeling as if I'm mentally and physically doing some heavy lifting.
Balance still shot but lugging myself around is definitely improved. Increased sensation in my fingers. Downsides? Feel a bit constipated and bloated.

Day 4
We had a late night yesterday, which coincides with the clocks going forward an hour later on tonight. As the doses of Fampyra need to be taken at 12 hour intervals, this is troubling me. I’ve decided to do a "hard reset" in the morning - this is when my stomach is at its emptiest. Who knows?
Have been wobbling like a newborn foal - it's like I'm learning to walk again AGAIN (again?). 
Went swimming today with my Dad who noticed improvements already.

Day 5
The slump. I've been trying to keep my perceived improvements under my hat but it turns out everyone has noticed already. I feel like a watched pot or a tiny animal in the garden which no-one wants to scare off. 
Last night we mad a meal from the OMS Cookbook, which was a complete and utter faff and was REVOLTING. Had a bad night's sleep plus we lost an extra hour. So I felt as bad as normal. Patience at all time low. Plus still feel sick after gross meal. 
The day was saved when we ordered pizza - mine was Vegan and delicious. Plus I shared our cooking failure with an OMS Facebook group and they all related their own disastrous meals with me.
Tomorrow is another day.

Day 6
Had a great night's sleep - still getting supportive messages on Facebook (it's good to know that most people feel the same about Flaxseed oil!). 
Not so much positive action with regards to my walking at this point. Is it stabilising?

Day 7
Went swimming - the absolute highpoint of my day was when I drove out of my parking space and a woman driver pulled up really close behind me. When the lights in front of me changed and I had to stop, I saw her completely lose her shit in the rear-view mirror. This is usually what I do. She looked totally ridiculous. Then, because she was on her phone (!), she didn't realise that the lights had changed. While I was waiting at the next set of lights I could see that she hadn't moved and had missed her chance to drive on.

Day 8
Unexpected Daddy/daughter day. She says she's ill, I'm not convinced. I recognise the tactics from my 10th (?) birthday when I pretended to be ill so I could come back home and listen to my new Howard Jones LP.

Day 10
The effects of Fampyra are getting less impressive by the day - over analysis on my part? Should there be a cumulative effect? Feel bereft of something I never had. The disappointment on the faces of family members is precisely why I didn't want anyone to notice.

Day 11
We attended a music festival in Derby City Centre. Access to most of the venues was shocking and we ended up using the dreaded wheelchair for part of the day. But we had a good time.
Low point was my Vegan pub meal - it was the first time I've felt punished for my life-style choice, just a load of vegetables in some anonymous stock - even I know to use cornflour to thicken sauces, people!

Day 12
Felt tired and beaten after yesterday and full of self-pity. Pep talk from my Dad which made me realise that although Fampyra on its own might not be a miracle-worker, if I can take these improvements in control with me to any Physio which I will be doing (alongside continued swimming), it won't do me any harm.
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It was at this point that I decided to contact the MS Nurse to arrange a continuation of this treatment. So on Monday, I go to see her to find out if my walking speed really has improved as much as it seems.

Regardless, the change in my ability to control my feet has been really quite something. As I said, it's not (in my case) been a miracle cure - it has (to my mind) increased the speed of my walking, but not necessarily the quality of it - there's still work to do to prevent scuffing, dragging my feet, etc. So now I'm chasing a referral for another round of Physio and an appointment with Orthotics.

Friday, 31 March 2017

belly laugh chortle

This is the sender's address which was attached to my recent delivery of *ahem* toilet supplies.

Even though this is not how I feel about it at all (well, not all the time, anyway) I thought it was darkly amusing that this - the initials of the medical company which supplies them - translates to a particularly salty bit of internet shorthand.

At the time of writing I've had just over a week of Fampyra and to be honest, it has been a mixed bag. I'm keeping a diary (certainly for the all-important initial fortnight) which I'll likely publish here in some EDITED form or other.

Wednesday, 22 March 2017

another shot at the moon

I think if I have a seizure, I'll definitely consider stopping taking these pills...
So here we are, then.

I received my delivery of a 4-week trial of Fampyra / Fampridine yesterday and this morning I took my first dose. Tablets have to be taken 12 hours apart and on an empty stomach.

Think about it - how often in the Decadent West, as a privelleged (sort-of) middle-class white guy, am I ever likely to have a truly empty stomach? But OK - I'll play along.

There's quite a bit riding on this - long-time visitors to this blog will know that my issues with walking are very definitely A THING. So if this can help me get my legs working a bit better, then eventually I might be able to exercise more and maybe build up some strength in order to forego this particular medical intervention. Who knows?

All I know is, something has got to start working soon. In the last 6-7 months I've changed my diet, left my job, started swimming more regularly, embraced mindful meditation. I've even started doing intermittent self-catheterisation, for goodness' sake!

I feel mentally clearer and stronger, at least - particularly since leaving my old job. I've started some freelance consultancy work, as well as doing some more (PAID) writing at MS.net. And the old pipe up the pee-pee is really freeing me up socially (it's still a bit weird, however).

Including Fampyra, I will be taking varying doses of eight different medications and supplements every day. And my mobility isn't getting any better.

Don't get me wrong, I'm not saying anything whingy and dramatic about this being a last throw of the dice or anything. I know how lucky I am to even have access to the drugs I am taking. Plus I am surrounded by people who want the very best for me.

Doesn't stop me wishing things were better though, does it?

According to everything I've read, people who respond to Fampyra know if it's working for them within 2 weeks.

At the very least, since taking my first dose I've been paying more attention to my mobility and posture - I'm not daft enough to be looking for any signs of improvement yet (although 14 DAYS). I just know that paying attention to the way I move around is something I really need to do more of.


But by the time I get through this very blister-pack of tablets, I'll know if it's working for me or not. Knowing that much is a good thing at least.

Thursday, 9 March 2017

i can change?

lifted from Dead Rob & His Dead Dog
It has long been a bone of my wife's contention that I seem to be much more rational, level-headed and stoical in my writing on here - and even more so on MS.net - than I am in real life. It won't come as a surprise to anyone who knows me that I can be a grumpy so and so. 

However, the other day was my annual(ish) MS MOT at the QMC. Aside from a general chat, the only thing I really wanted was to finally start the ball rolling with regards to the walking drug Fampyra which I've mentioned previously. Before starting the initial month's trial you need to have your walking speed assessed so I spoke to the MS nurses a couple of weeks ago to arrange to do this at my annual meeting - a full-service and new set of tyres to go with my MOT, if you will.

My main issue currently is to do with my walking - even with two sticks it's shocking. Apparently if Fampyra is going to work for you (which it does in a third of cases) it is obvious within two weeks of your free month's trial. Which is good, because after that you have to start paying for it.

Anyway, long story short, it wasn't possible to do this on the day which was mildly annoying. Previously, I would've really lost my rag about this kind of thing - like I said, this is the main thing which I'm struggling with at present, so we were all counting on it at least starting.

But today I decided to focus on the positives. Tecfidera is only messing with my bloods in a way which is medically 'tolerated'. More than this, my MS is stable - no new symptoms or significant progression at all. The neurologist noticed weakness in my left leg, so he is referring me for some more physio.

I saw the nurse who had previously said that I could bundle the Fampyra trial with my appointment. She apologised but has now started the ball rolling so I should be able to hopefully have my initial meeting for fampyra in a week or so.

This particular nurse also happened to be in the room when I'd been given the news that I needed to start doing intermittent self-catheterisation at the end of last year so she asked how that was going. I said that although it was undoubtedly a weird thing to find yourself doing, it's amazing how quickly you can adapt. She asked if I would be willing to talk to any other patients who might be struggling with having to start doing this themselves - in my current situation I obviously asked if there was any money in it. But it struck me that I'd be really happy to talk to someone about it, if it might be of help. At least, I don't think a demo is required…

All of this is way more positive than I would be traditionally (cf. blog title). So I don't have to be a miserable sod all the time.

This reminded me of a conversation I'd had at the weekend which illustrated that sometimes change isn't possible. My brother and I were reminiscing about how our cynical, know-it-all, anti-social music-snob personas were hard-wired over several hot summers. We suffered (and god alone knows how we suffered in the way that only adolescents can) with hay fever. So we would hole ourselves up in the dining room, which as well as having only north facing windows, also housed the family stereo. We would camp out in there, listening to and dissecting records (whilst sneezing) all summer long. It was great, but probably not great for our social skills. I know that it's not great to judge someone you've just met purely on the basis of their taste in music but it's still to this day incredibly hard to shake off.

I'm pleased that I'm a relative rarity amongst my male friends in that the music collection in our house is fully integrated. It helps that Mrs. D has what I consider to be good taste - but I think it's healthy to have (for example) Take That nestling up to Talking Heads. I think one of my friends makes his wife keep her CDs on a whole separate floor of their house! I'm not that bad.

However, if I come round your house and your music collection consists of a small rack of compilation CDs then I don't think we'll have much in common - sorry. I know it's wrong and I am trying to change but… baby-steps, y'know?

* FULL DISCLOSURE:  
This is all well and good but last night I totally lost my shit about some gravy which I had spilt. The struggle continues...

Wednesday, 22 February 2017

music of my mind

This is a post which I've been planning for ages. So long, in fact, that I've already (sort of) shared it IRL with one of the few commenters on the site (hi there, Swisslet).

Anyway, the main reasons that I use my phone are to take photos and listen to music. At one point during the work shit last year I made a note of some of the albums on my phone that happened to fit my situation. Some were my own, others were copied from friends - notably the blues titles that fitted a little too well.

These were all genuinely on my phone at the same point (mid September) and soundtracked many long days and nights when I was trying to salvage my career. 

Admittedly I've monkeyed around with the order a little to make it read in a more pleasing way and this is not a complete list of my phone's contents. But even so it's hard to escape the feeling that the universe was trying to tell me something at the time. And as an old friend used to tell me in a similarly momentous crunch point in my life, there are no coincidences:
In another spooky-ish coincidence, I came upon this article on The Guardian website. A lot of this chimes very much with my experience at work - especially the comments from people who said that they felt they had to work harder and longer than others to prove themselves.

The article contains a link to a Government consultation on work, health and disability but it closed last week - I hadn’t heard anything about this consultation, had anyone else?

Back in the (even more real) real world, as hinted previously I’ve stopped my claim for Job Seekers Allowance and started a claim for Employment Support Allowance. I’ve also got a short contract for some freelance consultation work, which is good.

Less good? Another dispiriting job interview experience (where I knew half the panel) which led to another rejection and - as yet, over a week later - no feedback. Guh.

Thursday, 2 February 2017

anger is an energy

Since I lost my job... actually, that's not quite right. Since I mislaid my job... no, still not correct.

Ok.

Since I was encouraged to put down my job (simultaneously being urged to forget where I'd put it), I've been able to coast quite nicely. Christmas / New Year broke things up but the other week I realised that I'm fast approaching my second month between jobs.

As there's very little to apply for out there - and also because I've been paying into the system for the last 20-odd years - I thought I'd see if the job centre might be able to help me out.

After starting a claim for Job Seekers Allowance, I'm currently attending a programme about looking for work at the Job Centre every day for 4 weeks.

Let's talk about accessibility!

This particular job centre is on the other side of the city. It has no parking, let alone any disabled parking spaces. It's also located on the inner ring road. And the closest parking is across the ring road - which is naturally busy and fast-flowing (with no convenient crossing nearby). This is all without mentioning the fact that the building doesn't have a public toilet.

Tuesday was wet and miserable, pathetic fallacy writ large. Our little group of jobseekers had a session about conditionality - basically all the things we have to do in order to get our money.

I get it. People can take the piss. But when the best they can offer - with a straight face! - is the sweetener that, if you work part time (up to 16 hours a week), you're allowed to keep the first £5 of your JSA if you keep claiming. So you're only £5 better off.

I understand that there're other benefits that come with working - social, intellectual, all of that. But looking round that room I could actually see the thought bubble appearing over everyone's head - "Fuck. Dat. Shit."

Call me cynical. But the reality seems to be that the system is rigged so that people get so demoralised that they give up, at which point they drop out of a system that doesn't have to pretend to care anymore. Add that to the (in)accessibility and it's hard not to feel that disabled people aren't expected to want to better themselves and contribute to society, and anyway they should stop clogging up the system to let the normals though.

(If I can draw your attention at this juncture to a semi-related story about a bus driver effectively turning his passengers against a wheelchair user for wanting to board his bus, if you think I'm being paranoid)

This opinion was also voiced by a member of our group who is a former Job Centre case worker. She even told me that I'd probably be better off having something called a Work Capability Assessment, instead of going down the JSA route. Otherwise I might be in danger of having my benefits stopped if I refused to go for jobs which I'm physically unable to do.

Yikes. I knew here was a reason I hadn't been to see I, Daniel Blake - coming hard on the heels of my application for PIP, these current adventures in benefits might have finished me off completely.

And I'm one of the lucky ones - I have a supportive network of family and friends, plus I'm relatively well educated so I can (if I squint) navigate through forms and the more labyrinthine aspects of the benefit system.

But there were some people in our group who through no fault of their own didn't have an idea about how to create a CV. How does a society or an education system fail people so completely that they can't create something like that for themselves?

The people working at the job centre have an immensely tough job, and they are doing what they can.

But as I said to one of them afterwards, "Five quid is a tough sell".