Monday, 18 June 2018

no more drama

Last week was pretty trying.

To start, an appointment with my Neurologist, my first since my relapses last year.

I like him but I can’t help thinking he seems quite keen to rediagnose me as Secondary Progressive Multiple Sclerosis. Yes, I know this is how it goes for the vast majority of cases - is it still 80%? But this figure always makes me think of the following panel from Daniel Clowes' Art School Confidential story:

Clowes D, p.19 Eightball #7, Fantagraphic Books Inc, November 1991
We all think that we're in the 20% because anything else is too scary.

And I don't mean to offend anyone reading this who is already SPMS (or even PPMS). Neither am I so dim to not be aware that MS is progressive in nature in all of its flavours.

But having it in the name of your condition for the first time is going to be hard to take. So forgive me if I want to stall it for as long as possible.

Anyway, the stress of this appointment meant that neither myself or Mrs D slept at all well the night before.

To cut a long story short he was actually really pleased with how I'm getting on. As I think I mentioned before my first test for the JC virus was negative but I am now slightly positive.

Interestingly, although the JC titre [a new word for me too!] can go up and down, because I've gone from negative to positive I will always be counted as positive from now on.

But on the whole it was all good.

After that I had my birthday and a fairly dramatic infusion.

One other person on the ward had to be revived - I've not seen so many panicky medical professionals go behind the curtain around a hospital bed since Little Ms D’s birth.

A nurse - who looked really shaken up - asked if we wanted to be moved to another ward. But as I was nearly finished we decided not to bother.

The person eventually came round and was ok, by the way. At least that's what the nurses said anyway.

However it was still pretty unnerving to see her named on the ward list as a fellow Tysabri patient.

What is this crap I’m having pumped into my veins every four weeks?

Ne’ermind. See you next month!

Wednesday, 13 June 2018

writing in other places

I've been doing a bit more writing on MultipleSclerosis.net recently. Here are links to some recent posts.

The Visible Man
Obviously this was prompted by the realisation that I no longer have an invisible disability, mostly due to an increasing acceptance of the role that the wheelchair has in my life.

Yeah, yeah, yeah, I know it's just another tool to help me live my life.

Still hate the thing, obviously.

The UK National Health Service
When we were in Philadelphia, I was amazed by the questions that people asked me about the NHS. I guess it's only to be expected when the moron in charge tweets such thick-headed things as this:


So I thought I'd put them straight. And writing that article made me immensely proud!

(It was also pretty eye-opening to talk to one single parent at HUconnexion18 who said that she frequently had to make a decision about whether to pay for her MS meds or feed her children)

---

One reason for this place-holder post (as opposed to the usual high-quality, well-informed guff I normally put out) is because I'm working on a big post about my experiences of the PIP application process.

Not in any way because I'm some sort of expert (two applications submitted, two applications turned down is quite the strike rate). But it could be helpful to anyone going through it now.

Thursday, 24 May 2018

PIP success!

And so ends the most stressful game of chicken I've ever played.

Yesterday I had a text message from the DWP which said they had received a written report of my PIP assessment. It took a good while to realise that this referred to a letter which my MS Nurse Kate had written – outlining all the ways in which my MS affects me.

This very morning I've just had a phone call from the DWP, saying that based on Kate's letter I am now entitled to PIP – Standard level award for the Daily Living component and Enhanced award for Mobility.

So completely overturning the outcomes of two seperate applications, two assessments and two Mandatory Reconsideration requests. And obviously halting the tribunal process.

This decision is based entirely on a one-page document written by somebody who has known the ins and outs of my health, almost since my diagnosis in 2005.

If the rationale for this ludicrous and invasive process is to save money (and not, y'know, to harass and victimise the vulnerable in society), here's a way it could be achieved.

Listen to the people who know the applicant.
The health professionals we are asked to include on our PIP forms.

It's not that complicated.

On my last application I included my Neurologist, MS Nurse, GP, Physiotherapist, Cognitive Behavioural Therapist and two further Community Physiotherapists. As far as I can tell, NOT ONE of them was contacted with regards to my application, despite including full contact details for all.

Seven medical professionals who could have filled in any gaps and confirmed (or denied) the details of my claim form, either verbally or in writing.

Following this a decision about whether a face-to-face assessment was required (or not) could've been made.

I'm not going to question the professionalism or otherwise of those carrying out the assessments. But the assessment should focus on checking the details of the application form and ensuring that nothing has been missed off – that is, if the point of the system is actually to give people the support to which they're entitled.

As far as I know the application process currently goes something like this:
  • Firstly, an application is made and submitted to the DWP.
  • Then an assessment is carried out (by a third party contractor) and the subsequent report is sent to the DWP.
  • Finally, a person at the DWP looks at both reports in isolation and comes to their decision.
It doesn't seem very joined up does it? At the very least, there's little consistency of contact.

As it is, applicants seem to be penalised for the Independence which is purportedly what the Personal Payment is for.

This is opposed to the previous Allowance doled out people Living with a Disability.

As rebranding goes it's a masterstroke of marketing, isn't it? A payment seems so much more positive (and less patronising) than an allowance.

If only people weren't being driven to despair and suicide by this damaging process. 

I know full well that I'm one of the lucky ones, with people supporting me and refusing to let me give up.

After the best part of a year it is such a relief. And proof that with persistence we should all get the settlements we're entitled to - IF we have the strength and can bear to go through with it.

If anyone is reading this and going through a PIP application at the moment, genuinely do get in touch if I can be of any support.

And don't let the bastards grind you down!

1. Bide your time... 2. Keep your nose clean... 3. Don't let the bastards grind you down.

Thursday, 17 May 2018

haunted foot

This week I had an appointment for FES (Functional Electrical Stimulation) at the local Gait and Movement Laboratory. It was the STRANGEST thing!


When I recently saw my MS nurse (in order to write a piece of evidence for my PIP tribunal), she carried out a few strength and mobility tests. On that basis, she felt that FES might be worth checking out to sort out my foot drop:

Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord. The electrical charge stimulates the muscle to make its usual movement. In MS it is mostly used as a treatment for foot drop, where disruptions in the nerve pathways between the legs and brain mean the front of your foot cannot be lifted to the correct angle when walking.
From the MS Trust website

So earlier this week I went along to my appointment. And it was completely bizarre.

After they'd watched me walk for a bit (AN ASIDE: why are these types of clinic so bloody far away from the car parks??), they attached two electrodes to my left leg (long time visitors will know that my left leg has traditionally been the main cause of my walking problems).

The electrodes are attached just below the knee where they can stimulate the nerve which goes to the muscle responsible for lifting the front of the foot. The electrodes are controlled by a switch which goes in your shoe - when your foot is lifted a charge is sent to the muscle which then lifts your foot, therefore preventing foot drop!

We had to spend a little time fine-tuning the charge and the position of the electrodes. When it was on my bone and directly on the nerve it was so intense and dramatic I was worried my foot might snap off! And it was undeniably weird to see my foot wildly lurching back and to the left of its own accord.

But eventually we seemed to hit the sweet spot - although I was a little disappointed that the nurse didn't get the reference when my foot had a particularly violent twitch and I asked if she'd turned it up to eleven.

I did a little more walking and the two people assessing me could see that it was helping - at first they'd thought I might need to have a set of electrodes on each leg. But almost immediately both legs were working better (although the muscles in my left leg were knackered - I don't think they've worked properly for years!).

We all agreed that it looked pretty positive for an initial test. So now I wait for them to get me back in for more tests, more fine-tuning and a fitting.

Monday, 14 May 2018

in between days

Tysabri infusions need to be administered four weeks (or more) apart. I've mentioned before that in the run up to my infusions I can start to feel a little bit wobblier. And this has been backed up by conversations I've had with MS nurses and other patients (mostly online).

Earlier this year we booked a much needed summer holiday. Because I'm that sort of loser (or just one who is organised), I realised that I would be due to have an infusion the day before our flight back.

As we'd booked so far in advance (a rarity for us), I spent a sleepless night in bed working out that if I had my infusions a day earlier each month I would be able to bring my dose forward a whole week by the time our holiday came round. Obviously I did not take the following facts into account:
  • The Tysabri clinics are only on Wednesday, Thursday and Friday
  • You must leave at least four weeks between infusions - you can't bring them any earlier
After letting me explain my drawn-out but impossible plan, the nurse explained that my only option was to add an extra week somewhere along the line.

I've been waiting for a month which offers the least disruption possible - avoiding the birthdays of both Mrs D and Little Ms D, in particular.

So the long-awaited month is now upon us!

I should have had my infusion last week. And now I’m trying not to chew my fingers off while I wait for my slot to come up in a bizarre, drug-free limbo.

I'm well aware that this has the potential (if you're an over-thinker - hi there!) to become a self-fulfilling prophecy of bad-vibes and relapsey symptoms.

But truth be told I'm feeling ok. I'm still swimming when I can and have started to use the Wii Fit again for the first time in ages. The balance games are particularly good and because I'm that kind of competitive wanker I was really pleased to achieve a new high score.

Oh yes, I'm all about Gamification - see also my unbroken 590 day run on the Calm meditation app.

But I am trying to take things a bit easier (and pushing myself a little less) in the run up to the infusion this week.

Plug me in, please!

the author awaiting his next infusion - honestly, he feels FINE...

Friday, 4 May 2018

life in the city can be so hard

Aside from griping about PIP (still waiting for my tribunal date), banging on about Philadelphia and HUconnexion18, I've recently been doing some really exciting work with an old friend.

He's a member of the Department of Social Services at Loughborough University and he got in touch to see if I would like to co-author an academic paper for an upcoming conference.

But wait a minute Steve, I hear you cry. What kind of Academic qualifications do you have, aside from an unwavering belief in the rightness of your opinions on music?

Well...

The conference is on DISCO and he wanted me to analyse some musical extracts as part of the paper. We've met up a few times to discuss our approach and he sent me some music.

does "independent scholar" just mean "opinionated git"?
And parts of my brain which have been dormant since I graduated with a borderline-useless degree in English and Music have woken up!

I've been analysing melodies and orchestration and putting forward my opinions about what they actually mean in conjunction with the lyrics.

It has been so cool to be working on this so I'm eternally grateful to John for getting in touch with me.

Even better, our paper has been accepted for the conference at the University of Sussex next month.

Sadly I won't be attending (these things are EXPENSIVE) but I think John will be much better at presenting our paper. I have been known to waffle, especially when nervous.

I'm hoping this will open an entirely new career for me - ideally involving lounging around and pontificating about music.

Maybe I'll eventually appear as a panel member on Front Row. Or (LIFE GOALS) as a talking head on a BBC Four music documentary!

We can but dream.

Friday, 20 April 2018

temporary skin art

I decided to treat myself to a bit of skin art for the summer months.

I've always known that I'm too indecisive to ever settle on a permanent design for a tattoo. So this kind of MS-specific temporary skin art is perfect for me. If I change my mind I know it'll be gone soon enough!

People ask if it's painful but the lucky thing about this kind of application is that you don't even know it's happening until it's done. So no need to worry about the discomfort in advance!

Rather than get it done at home I went to a new place for this one - I simply lost my footing and fell onto my Mother-in-law's kitchen cupboard.

The whole design is just over 3 inches wide. It's pretty abstract and the colour's already started to fade but I'm still really happy with it.


What d'you think?