i feel (too?) good

Later today I go for a short appointment with the MS Nurses. Not a full MOT as far as I know, just a catch-up. 

Obviously this is the first face-to-face meeting with them since I was ill earlier this year. So it'll be interesting at least.

Weirdly, last night I finished the book I started reading towards the end of my stay at my parents house. It's a book about Kraftwerk that Mrs D got me for Christmas. It isn't particularly long - I just couldn't focus on reading for the first month, and there are always newspapers and magazines vying for my limited attention.

Kraftwerk by Uwe Schütte

Since I last wrote anything here I've been getting on okay. But I have been guilty of maybe feeling too good. For example, I'll often walk the length of our house without thinking. And then I'll realise that I don't have my walker or my sticks, and I'm now stranded at the wrong end of the house and I have no idea how I'm going to get back.

I've been out with friends and family a few times, and I've been playing guitar and working. On that, the fact that all of my podcasting clients were totally understanding is undoubtedly one of the best things from this whole situation. I'm so glad I've found a new and better way for me to work. 

I'm increasingly aware of how much my illness affected everyone around me. I can understand that they tried to keep their own struggles from me while I was recovering. But just in conversations with Mrs D, our friends, my parents, they'll say something that makes me stop. 

For example, Mrs and Little Ms D frequently shared a bed because neither could sleep. The way our friends rallied around them both and made sure they weren't alone. It's important to remember that I'm not going through this by myself. And I know that. 

But perhaps more importantly, I'm not the only one who was diagnosed with MS all those years ago. My friends and family were too, because it affects them everyday. Not to make me feel any more guilt than I feel already! Believe me there's enough of that. 

But I'm maybe more aware than ever before about the love that surrounds me, sometimes from unexpected places. I'm very grateful and blessed. 

--

The emotional nature of this post might have something to do with the music I'm currently listening to. While I was recovering, the only music I had with me was what was on my phone. Which consisted of our Christmas playlist and the one belonging to my daughter (which has a lot of very cool music on it, I have to say.) 

At one point I downloaded the Bandcamp app so I was able to listen to the albums I'd bought through the site. And I bought a new album. 

"Carvings" by Juni Habel is a collection of spectral folk (new genre alert!) from a Norwegian songwriter (two ticks for Steve's tick list) that was recorded in various rooms in her grandmother's house (recording backstory - BIG tick!)

It's utterly lovely - listen to it below.

another reason to love ocrevus

One thing I forgot to mention from when I spoke to the MS Nurse recently. She effectively said that Ocrevus was the reason why I'd got all of these infections. 

I've written in the past about how effective it is as an immunosuppressant, stamping down on my immune response for up to six months following each infusion. Previously this has caused me to delay having Covid vaccines and my annual flu jab, simply because Ocrevus is so good at its job. There's no point in having a vaccine when your body is unable to provide an immune response. 

But does this also mean that in the future I'm going to be leaving myself open to every single virus that's going around? At a time when years of social distancing means that nobody has built up any immunity? 

I can't help feeling - yet again - that I wish I'd not had to move to Ocrevus. It's almost like the drug exists to keep me weak and isolated. Previously when I was on Tysabri I was actually pretty healthy. I never really caught anything that was doing the rounds. Plus it was easier to fit vaccines around my infusions. 

Now every time I have an infusion I need to socially distance for a month, according to a note I was given in October (at the end of my first full infusion!).

But really, what are my options? I can't go back to Tysabri because of my rising JC Virus count. And as far as I can tell, Ocrevus is my last option as far as medication is concerned. 

I've heard that changing to a medication with lower efficacy has been shown to increase disability. So is Ocrevus really the last horse in town?

the crap gap - real or fake?

Hold your horses! I know that for many people with MS who take disease modifying therapies, we can all feel like crap in the period immediately before our next dose. A reminder:

The Crap Gap: the period immediately in the lead up to another round of MS medications, particularly infusions, when the patient begins to feel particularly fatigued and "ready for it." Psychosomatic according to some neurologists, it nonetheless feels particularly real to the patient. 

When I was injecting myself with Rebif three times a week, I'd always felt like crap on my in-between days. I was taking Tecfidera so often that I didn't have time to feel bad but going to Tysabri infusions every four weeks I always felt I was ready for my next dose. 

The fact that this didn't alter when I changed to infusions every six weeks didn't really change my thinking. Neither did the fact that when I mentioned this to my neurologist and he told me categorically that it was all in my head. 

However… 

As I write this I'm currently having my first full dose of Ocrevus. I had my initial two half-doses in November of 2021. 

So in total, it has been an eleven months wait.

If the crap gap was real, I'm pretty sure I would've felt dreadful yesterday. 

Now the last year has been so uncertain. I've had no idea when or if I'd be getting my next dose of Ocrevus. So I could well have unwittingly programmed my body to power on through because of the uncertainty. If I didn't know when it would happen, how could I feel crap in advance? 

The only problem is, I've had this date in the calendar for the past five weeks. 

Please know that I fully understand that this is only my own personal experience. And when I've felt the crap gap in the past, I've known that it was real. 

But looking at my various DMT timetables over the years that doesn't make sense. 

I'm a firm believer in the placebo affect. And just because something isn't physically real, if it feels psychologically real then to all intents and purposes, it is real. 

I just think it might be a little less terrifying for anyone newly diagnosed or just starting a DMT to hear something like, "Some people start to feel like they're a little run down immediately before they go in for treatment. But it's nothing to worry about." 

As opposed to, "Oh god, I feel absolutely awful before I have my infusion." 

Similarly, the second part of that statement is, "But I feel amazing as soon as I've had it." 

What if before my first/second infusion I felt like crap, and then I didn't feel any better afterwards? What would that do for how I feel about my DMT and / or my future with MS? 

I suppose if the idea of the pre-infusion slump followed by the post-infusion boost makes you feel better, then by all means continue to do you, boo. 

But based on twelve years of research, for me personally, it doesn't exist. And I'm cool with that.

Ocrelizumab: The Mighty Immunosuppressor

picture borrowed from https://www.gene.com/media/product-information/ocrevus - not entirely sure what it means but it looks cool

You may remember, way back before the dawn of history, when I had my initial two half-doses of Ocrevus. That would have been November 2021. 

Ocrevus (ocrelizumab) is thought to be one of the most effective DMTs. And it's quite appealing because, rather than being a daily / thrice-weekly injection, or a twice-a-day pill, or a monthly infusion, it's delivered through an infusion every six months. 

Well, as I write this, in September 2022, I'm potentially on the cusp of maybe having my first full dose. Ten months later. 

Here's the science bit. 

Ocrevus is an immunosuppressant. The good science behind this is MS is a disease where the immune system gets a bit confused and starts to attack itself, primarily the protective sheath (myelin) that covers the nerves in the body, as well as breaching the blood-brain barrier (which leads to scarring on the brain).

So it makes total sense to basically get the immune system to sit down, take a stress pill, and calm the fcuk down. 

Well, it turns out that Ocrevus is really good at its job. So good in fact that I've basically not had a fully-functioning immune system all year. Here's a quote from a recent letter from my MS Nurse.

Ocrelizumab reduces the number of particular cells of the immune system responsible for producing antibodies. Individuals receiving ocrelizumab do not seem to produce enough antibodies in response to COVID-19 vaccination which increases their risk of infection.

Because COVID hasn't gone away (despite what some people say), my medical team and I wanted to make sure I get my fourth dose (plus my flu jab) before I let loose the Mighty Immunosuppressor. 

After three blood tests at the hospital, my immune cell count has gone from 0.4 to 4.12. So I'm now able to get my next dose of COVID vaccine, followed by my winter flu jab, and then potentially my first full infusion. 

Maybe. 

Why any doubt? Well before I have my COVID vaccine, I need to do an antibody test. Then on the day of my infusion, I'll do another at the hospital. And I guess that my infusion will only go ahead if my numbers are correct. 

I am very glad that I have a medical team that is looking out for me.

But it's times like these that I really bloody miss my regular Tysabri infusions.

i was looking for a jab and then i found a jab...

... and heaven knows I feel CRAP today.

So yesterday I finally got my third COVID vaccine. It has been a LONG ASS time coming.

As a reminder, I had my second dose in May 2011. Then a few months later I caught COVID, just about the time my Neurologist recommended that I change from Tysabri to Ocrevus. After having my first two half-doses in November, I then had to sit tight before I could get another vaccine.

Until yesterday - oh, happy day.

The vaccine centre was a lot quieter than the last time I went. Because it's all over now, right? Or at the very least, we're in a place where we're all okay with over 100 people dying unnecessarily every single day, just because some people found that wearing a mask made their face a bit hurty.

The thing that remaned was the pride that the people who were working and volunteering there still clearly felt. Plus how pissed off they are that the UK government has basically washed its hands of them.

It took a while for us all to unpick what my MS Nurse was recommending for me - the letter I had was pretty confusing about whether it was a third dose or a booster. But eventually we went for a third full dose.

It was all good but today I feel like I've been run over. Bleeurgh.

Beats the hell out of getting COVID, obviously.

Please donate to the Disasters Emergency Committee.

between a rock and a shit place

And speaking of crap gaps… This has been so long coming that I've actually had my first two half doses of Ocrevus by now. NEWS FLASH: I'm not dead.

In fact, each time I've had an infusion, I've tried to write a post. But for one reason or another, they've remained unpublished. So what scintillating titbits have ended up on the cutting room floor?

1. The support acts for the headliner Ocrevus (also known as the pre-meds) are a regular case of the old push-me-pull-you. Intravenous antihistamines knock you out, and then a dose of Steroids picks you up. And obviously, mean that sleep is hard to find that evening. Doesn't really explain how I managed to forget the main side-effect of steroids up until the night of my second half-dose, however…
2. People can be really annoying. Yes, even people with MS. We aren't all saints, y'know.
3. Related to this, noise-cancelling headphones are the greatest invention ever.
4. MS nurses are still great. At the end of the second infusion, one of them came up to me and asked me how I was feeling. Then she inquired about how I was going to be getting home. Then she said, "Before you go, I have one more serious question for you…" She nodded towards the remnants of the food I'd been snacking on.
   "I love those Nature Valley granola bars but I've never had one of the Peanut Butter ones. What are they like?"
   I answered with the seriousness this question required. "Game-changer. Total game-changer."
   

I'm not being paid for including this endorsement - but I'm open to offers

However…

You might remember that when I was diagnosed with COVID in October, I was getting ready to have my booster jab. And actually catching the damn thing put an end to that.

All throughout the period of my two Ocrevus doses, based on conversations I'd had with my Neuro and the MS Nurses, I'd been led to believe that I would have to wait until at least the end of December before I had my booster jab. 

I asked for clarification after my second dose and the nurse said that she would speak to my neuro and get back to me.

But I was totally unprepared when she called and told me that the earliest I could have my next vaccine shot was the end of March.

This is due to the way that Ocrevus works - it's one of yer classic Immuno-suppressors. And it's so good at it that, if I had a Covid vaccine, I wouldn't have much of an immune response to fight the infection and build up antibodies. 

Unsurprisingly, when the MS Nurse told me this, I said I wished that I'd stayed on Tysabri (an Immuno-modulator, if you remember). 

And all of this drama was before the Omnicron variant and BoJo's rapid vaccination roll-out. I've so far had three emails and at least two text messages from the NHS Covid response team inviting me to book my booster jab. It's pretty wearying, especially because we're trying to prepare for a normal Christmas, which - let's face it - it doesn't look like any of us are going to get.

So after basically shielding for all of 2020, and actually getting Covid, I'm in the same boat until the end of March 2022 at the earliest. 

And if by some miracle, Christmas 2021 isn't a total write-off, I'll need to be the ghost at the feast and - to the best of my ability - avoid seeing most of my family.

Weirdly, there's a Facebook group for people on Ocrevus. And EVERYONE has been told different things about when they can get their third vaccine / booster dose.

The most immediate repercussion of this is that I'm going to have to miss my grandmother's funeral next week - it's upsetting but I just can't take the risk.

I know that this sort of thing has been going on throughout the pandemic, but it doesn't make it any less of a shit business.

excellent service, would recommend

image borrowed from spine-health.com

So my first ever lumbar puncture was... fine, actually. 

I'd been really worried about it - like two-sleepless-nights worried. And I don't think that's entirely unreasonable. There's just something undeniably weird about the idea of someone putting a needle into your spine. 

What really took me by surprise when I got to the hospital was that I didn't lie down for the procedure. I just sat on the edge of a bed and leant forward onto one of those wheeled bed-tables. 

After a bit of feeling around and the SHARP SCRATCH of the local anaesthetic, the actual needle which went in between L4 and L5 felt more like someone was digging a knuckle into my lower back. There was one odd moment where there was a burning sensation in (apologies, there's no other way of saying this) my balls. Unsurprising when they're rooting around in a cluster of nerves, I guess. 

The most disturbing bit was the noise the student nurse who was observing made when she saw the fluid coming out. A bit worrying, but then I did make a point of not seeing the size of needle they were using. I assume it looked worse than it felt. 

After coming out of the gates at a tremendous pace, things then slowed down to a dribble when filling the second and third vials. But after about 20/30 minutes it was over. 

This was when the headache kicked in. Man, that was something else. The doctor explained why it had started and the reason was one of those blindingly obvious things that you feel stupid for not thinking of yourself (if you're an idiot like me). 

As in: Spinal fluid goes around the brain. If you remove fluid and the subject stands (or in my case sits) up, the fluid will flow down, leaving the brain exposed. Fixed by a big old glass of water and two paracetamol, followed by an hour lying down with observations every 15 minutes. 

Which also included the collection of a freakish amount of blood. Obviously they needed to take some blood as part of my LP procedure. But the MS nurse thought that, while I was there and cannulated, it would be worth doing all of the tests required for each of the three DMTs I'm looking at. Pretty smart. And it saves me having to go back to the hospital for more tests further down the line.

So after filling TWELVE VIALS of blood, and being observed while walking, I was allowed to go home.

My final thoughts? It really wasn't anywhere near as bad I thought it would be. But, y'know: needle; spine; puncture. 

One thing. While I know that's the way a lot of people come to their initial diagnosis, I'm SO GLAD that mine didn't come through this procedure. At that point, everything was so unnerving and unknown.

My first MRI was bad enough. But I would've totally freaked out if the doctor had said, "Just to make sure we know what we're dealing with, I think we should drain off some of your spinal fluid." 

Having said all that, if you're in the position of needing to have a lumbar puncture procedure, in my experience it really isn't that scary. Talk to the doctors and nurses, explain your perfectly rational fears, and take comfort from the fact that you're not alone.

For example, one of my MS Nurses said that the one time that she nearly fainted while training to be nurse was when she witnessed a lumbar puncture.

As I said: needle; spine; puncture. It's not natural, is it?

my life on (MS) drugs

 

Looks like I'll be changing medication again. Ho hum. 

This will be my fourth change. Weirdly, I had a reminder of my first MS DMT recently. I stopped taking Rebif when the post injection flu-like symptoms just got too much. With injecting three times a week it was like I felt normal for one day a week. 

And if I forgot to take a painkiller beforehand, then I'd be shivering, sweating and "shaking like a shitting dog". Obviously the side effects from my first COVID vaccine brought all those wonderful, flu-like feelings back. 

So then I went to Tecfidera. Which was fine. Two capsules a day was ok and it led me to getting a taste for peanut butter (chunky) at least. 

But this coincided with me trying the OMS lifestyle and diet. Now, either of these things - or both, or neither - might have led to me having the worst couple of relapses I've ever had. As mentioned previously, Your Mileage May Vary. 

So since 2017 I've been having Tysabri infusions. And it has been great.

I never forget to take my meds (something which was true for both Rebif and Tecfidera) because I have to go to the hospital. 

And that has always been the main positive - going to the hospital every 4 or 6 weeks means I get some regular time to chat with an MS Nurse.

Plus the infusions have always been a time where I just need to sit and do nothing but listen to music or make notes or read.

I've always been low positive for the JC virus so my neuro has been watchful. I've had regular MRI scans and so far, there hasn't been anything of concern on them. 

But as I'm low positive and have been on it for over three years, he doesn't want me to push it unnecessarily. Fair enough. 

So he gave me a (horribly small) list of options. An injection, a tablet and an infusion. 

The sainted Ms. Jackie Z (two mentions in two blogs!) shared an article with me called "Switch From Tysabri to Moderate-efficacy DMTs Linked to Worse Disability", which says.... well, it does exactly what it says on the tin. The injection and the tablet are lower efficacy than Tysabri, the infusion is the same. 

So it isn't going to take much consideration, is it?!

Having said that, my most recent MRI showed no new activity and no signs of PML. So according to that there's no big rush on to change meds. I will need to change eventually but it's not as dramatic as it could be.

bill gates listening party today!

"I can't believe that I spent all this money inventing COVID and the vaccine so I could listen to this CRAP..."

(my working title for this blog was "lend us a pfizer" but even I thought that was too much)

So later today I'll be getting my first dose of the COVID vaccine. It's pretty bonkers that it has come around so quickly.

Only last week, I was talking to my MS Nurse about when I would be getting the vaccine. I'd noticed that some of my virtual MS friends had already had theirs. 

It turned out that this was to do with the different medication we were on - Tysabri is one of the few MS DMTs which modulates the immune system, rather than suppressing it. So it makes me Clinically Vulnerable, rather than Clinically Extremely Vulnerable. 

Good to know!

So I settled myself in for the long wait for Vaccination First Phase Priority Group 6 to roll around - Adults aged 16 to 65 years in an at-risk group.

(Vaccination First Phase Priority Group - great first John Peel session)

Well. Although the UK government is an absolute shit-show, they do seem to have grasped the value in rolling out a vaccine programme at high speed*. So I got a  text yesterday saying that an appointment had been made.

* - the need for speed may be due to a desire to reopen everything ASAP, obviously...

And in a short while I'll be heading to our local Velodrome - I'll let you know how it goes!

SPOILER ALERT: I know loads of people who've already been and it seems to run really well.

quite reassuring

I got a letter from my neurologist the other day (if you're as old skool as me, your next thought will be, "I opened and read it, it said they were suckers" but I digress). 

My letter said the following:

I am pleased to inform you that brain MRI compared to the previous scan did not reveal any new lesions.

And then:

This is quite reassuring. 

Quite reassuring?! If we're looking for a two-word summary, I'd probably go for, "Bloody marvellous" or something similar. But maybe that's just me. 

At the very least it means that Tysabri is doing its job (reducing relapses). And all without so much of the MRI-visible side effects (brain infection). If this the most I can hope for, let me have it, yeah?

Ah well, it did make me laugh, mostly because I can totally hear him saying it. Very low-key. 

I told the MS nurses the next time I saw them and they thought it was funny too. This then led on to a discussion about the florid eyebrows sported by all the neuros at the hospital. I think it's a sign that they're so engaged with their work that they don't have time for frivolities such as manscaping. 

I have plenty of time for taking care of my eyebrows. And yet they remain, resolutely, OFF. THE. HOOK.

four weeks good, six weeks... just as good?

At my recent MS MOT, my neurologist was pleased. No new disease activity, no new symptoms.

His big issue recently has been that I’ve been on Tysabri for over two years. And in all that time I’ve been JC Virus positive.

The JC virus is a common infection completely unrelated to MS. Between 40-90% of the general population have been exposed to JC virus. You are unlikely to know if you have been infected, as JC virus causes no symptoms, and is normally kept under control by the immune system.
However, if your immune system is weakened, the JC virus can reactivate. It can then cause serious and potentially fatal inflammation [my emphasis] and damage to the brain known as progressive multifocal leukoencephalopathy (PML).
- from the MS Trust website

And he told me that, being positive for the JC Virus,  if I was in the market for a new Disease Modifying Therapy now,  he would not be suggesting Tysabri at all.

But I’m tolerating it and doing well on it so we’re going to keep things as they are.

Apart from...

There is apparently a large amount of research which says that Tysabri is just as effective when it’s taken on a 6 or 8 week cycle. So after my next infusion I’m going to try going to 6 weeks.

This scares me a little. I’ve mentioned before that I feel "ready for" my infusion by the time it rolls around every 4 weeks. I’ve mentioned this to my neurologist before and he effectively told me it was all in my head. (To which I almost said, “You’d better tell all the other people in the infusion ward, mate”)

But I do trust him. So let’s see.

He’s writing to my GP to let him know and also to recommend another round of Cognitive behavioural therapy (CBT) .

One thing which was interesting was when, during the conversation, I said that Intermittent Self Catheterisation changed my life.

He looked a little crestfallen, like "I feel bad for you but it's one of those things"

I immediately said, "Oh no, I mean it's changed it in a good way".

Because it really has. Once the logistics are taken care of I can actually leave the house on-or-thereabouts the time that I need to.

He was also a little put out when I said that he often gets the best-case version of my condition, whereas the MS Nurses tend to get the uncut no-holds-barred version (lucky them).

My logic for this is, the Nurses are there to support and empathise, and to make recommendations for my treatment. Whereas he has the power to upgrade my MS from the more benign (HA!) Relapsing and Remitting variety to the (80% of all PwMS) Secondary Progressive MS.

So forgive me if I sprinkle a little sugar on top for you!

I like to think I'm not alone in this. Or maybe I'm just being an idiot?

(not entirely beyond the realms of possibility)

scenes from the waiting room

Or "What is up with people?"

I wrote this a while ago but I'm publishing it here because I have a couple of hospital appointments coming up over the next week. I hope posting it will mean I can avoid the sort of person I talk about below!

At the hospital for a Tysabri infusion earlier this year there was a guy sitting next to me who was having a loud phone conversation about how shit his life is. About how progressive his MS is and how few options there were for managing his condition.

But he didn't do it in a self-pityingly morose way. It was like he was bragging about how hard he had it. Like the chronic illness version of Monty Python's Four Yorkshiremen sketch.

I get that this might have been some kind of coping mechanism. But surely that kind of chat should be reserved for home. Or the pub. Not in a room full of people, presumably with the same condition, who are battling those same persistent thoughts about progression and increasing disability and decreasing life options.

Maybe it's just me.

But there were a couple of young people on the ward that day. Maybe they were recently diagnosed? And they looked shit scared.

Bet that didn't help.

Shortly afterwards I saw an older guy giving himself an ulcer by stressing about how the busy nurses were ignoring him and seeing other patients before him. Which obviously didn't make them see him any quicker.

I mentioned this kind of thing to a nurse when I was getting a blood test recently. I said that surely this kind of thing never happened to her.

She said you'd be surprised how much mouth she gets from patients - about waiting times or the environment in the clinic - immediately before she sticks a needle into their arm. You would think they would check their attitude before confronting a nurse who has the power to make them very uncomfortable indeed.

I try to be a nice patient - especially when having a blood test - so the worst I get is a nurse who jokes that it's her first day on the job. This happens pretty regularly.

I always think it's pretty obvious that those who are disrespectful towards the people who are there to help them - nurses, hospitality staff, shop workers - have never worked in the service industry.

Talking about this with some box office staff at the Arts Centre where I was based earlier this year, one of them proposed a new type of National Service. One where people have to do 6 months to a year working in the service industry. Or what is sometimes called a McJob.

I think that overall levels of empathy would only be increased if this was brought in.

seems legit

shame of our nation

Speaking to an MS Nurse at my Tysabri infusion she surprised me when she said she'd had some good news that day. Because she had just found out that her application had been successful and she would be allowed to stay in the UK.

Call me naive but this totally blew my mind. That there was even a possibility that this qualified and endlessly experienced and empathetic nursing professional might be forced to leave the country she and her family call home.

Who's next? The MS Specialist Neurologists, who are all EU citizens? Who exactly is lining up to replace them? 

At the same time, a friend shared a video from the Home Office Facebook page publicising the EU Settlement Scheme. Over some jolly muzak, a series of diverse and smiling family and social groups, presumably talking about how much they're relishing the opportunity of applying to live in the communities they have enriched.

See how happy they are!

 

To say we should be ashamed of what our nation has become is something of an understatement.

moodswing indigo

I started writing this while having Tysabri infusion number 16.

As part of each treatment the MS Nurses have to ask a series of standard questions. Are you allergic to anything. Have you had any infections, cold/flu symptoms, that kind of thing.

One question always provides an opportunity for hilarity: how has your mood been?  

Oh I'm as up and down / miserable as ever. Chortle.

This is because the delightful PML brain infection (Progressive multifocal leukoencephalopathy, sprung from the JC virus) can cause personality change as one of it's first symptoms.

And due to Tysabri's efficiency in stamping on any foreign agents in the Central Nervous System (including the body's own immune system), once it takes hold PML can lead to severe neurological disabilities and - TA-DAAAH! - death. Marvellous.

The Nurse recently told me a story about another MS patient. He was known to be miserable, antagonistic and aggressive to his family and his care team. A proper arsehole.

After a few months on Tysabri he became noticeably more cheerful. He started being more pleasant to live with, stopped picking fights, laughed easily.

The nurses noticed this, became concerned and sent him for an MRI scan which showed the early stages of PML.

Luckily they caught it in time. I wonder how he is now?

my PIP story pt.2

I hope these posts will be encouraging for anyone going through the PIP application process. I am NOT an expert.

Read Part One here 
--

5. Preparing for an assessment

This article is a pretty chilling depiction of the faceless bureaucracy of a PIP assessment: https://www.benefitadvice.org/pip-medical-assessment.html - particularly the Computer Says "No" section at the bottom of the page.

FULL DISCLOSURE
I honestly don't know what you can do to prepare for an assessment. I was lucky that both of mine were in my home. But for my second assessment - when I'd included details of adaptations that had been fitted around the house - they didn't even look around.

Although it couldn't have been used in a tribunal, I'm glad we made an audio recording of the assessment. At the very least I could play it back to ensure that I hadn't misremembered what we actually did say when we were able to go through the tribunal papers - which included their notes from the assessments.

But even so, the things that we said were twisted, misrepresented, or flat-out ignored.

Maybe I was unlucky. But all signs would imply that this is par for the course.

6. Take it to the bridge… I mean, the tribunal

my ACTUAL tribunal papers

After an application, an assessment, and an unsuccessful Mandatory Reconsideration, now was the time to request a tribunal.

At this point the case was passed onto HM Courts & Tribunal Service. Shortly afterwards I received a huge wodge of papers - forms, assessment reports, and decision notices for BOTH of my applications. 185 pages in total.

Although they were two separate things, I think they did this to show the tribunal service that, "This person has applied and been assessed twice. In our opinion they are clearly taking the piss."

At the front of the pack there is an official response to the appeal from the DWP:

I've considered all the available evidence and considered which descriptors apply for each activity, taking into account Mr. Woodward's functional ability. This includes the activities Mr. Woodward has disputed and those which he hasn't. I agree with all descriptors included.

I oppose this appeal and ask the Tribunal to dismiss the appeal and confirm the Secretary of State's decision.

Now. This scared the bejeezus out of me when I read it.

But think about it - they can't very well receive the tribunal request, look over the application notes, then turn around and say, "Blimey, we got it wrong here. Sorry!"

So this is a standard bit of verbiage. Stay strong.

Obviously I never got to a tribunal [SPOILER ALERT] but it really was like an intense game of chicken - who was going to blink first?

7. Evidence, evidence, evidence

This is what turned it around for me when we were waiting for a tribunal date.

I saw my MS Nurse, showed her the DWP's refusal letters and we went through them point by point. She also did some physical tests. This whole appointment took about an hour.

She then went away and wrote a letter in support which included irrefutable evidence based on her knowledge of my condition over the years.

The whole report was less than a single side of A4.

And in the phone call to let me know that their decision had been reversed, the person I spoke to said that this bit of evidence was what turned it round.

So save yourself a lot of bother - if you're applying now, include a notes from one of your listed medical professionals, as long as it backs up the things you have said elsewhere.

Another reason to include this kind of thing in your application is because NOT ONE of the medical professionals I listed - three for the first application, seven for the second - were contacted.

Perhaps I should have allowed enough time to gather this kind of evidence before I applied - but then, you're only given a month to return your application and there are enough things to stress about.

Conclusions

Like I said at the top of the first article, I am no expert in this sort of thing. But at the very least my experience shows that a decision can be reversed.

It takes a lot of stress and anxiety, and it might very well lead you to want to just give up.

But I can't help but feel that this might be exactly what the DWP is counting on. Call me cynical.

--

Just for reference, these are the scores I achieved through my application process, and how they changed.

Application 1: 
0 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Application 2:
6 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Final decision (after supporting evidence from my MS Nurse - remember, this was A SINGLE SIDE OF A4):
9 points for Daily Living
12 points for Mobility

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!

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.

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.

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...

top tips for a happy tysabri infusion

If you begin regular Tysabri infusions you'll get a load of bumf with handy tips to help you have a happy infusion. These include relaxing, drinking lots of fluids and eating snacks. Standard.

Here are a couple they missed, based on my experiences.  

1 - Alcohol gel, alcohol gel, alcohol gel
For some reason, it took until my fourth infusion in December for the nurses to tell me that the pain of removing the cannula, related surgical tape and arm hair can be completely avoided if the affected area is totally slathered in alcohol gel, of which they have fecking loads.

FYI: on a chart measuring levels-of-hirsutitude I would be somewhere between an ape and a regular adult human male. I'm not so hairy (or hairless) that people might remark on it. Although Little Miss D will sometimes sit and stroke my arm as if it's a pet dog.

Previous to discovering this modern wonder I had reacted to the discomfort with levels of leg-kicking and whispered obscenities which had been frankly embarrassing for all involved. Now, there are no problems.  

Alcohol gel. Ask for it by name. This blog is nothing if not a public service source of useful information. You're more than welcome.  

2 - Speed up your saline washout
The Tysabri infusion takes around an hour, followed by an intravenous saline washout which also takes around an hour.

(It should be noted that, when first starting this treatment, you can also be asked to hang about for around a further hour to be monitored for adverse reactions. So all in, three hours) 

After a couple of months I'd been able to shave a bit off this - having no adverse reactions to observe and by asking for the washout to be sped up. This has now got to the point where yesterday, when I asked the nurse if she could get it to go a bit quicker, she said, "Six minutes?" I could have kissed her.

I know the nurses wouldn't do this if there was any danger to patients and I'm lucky to be getting on with Tysabri so far. Also, the ward is packed every month and they do need to get people treated and out of chairs as soon as possible.

Maybe they just think I'm an annoying sod and just want rid of me? No worries. I'm out of there!  

3 - Make sure your headphones are plugged in
Self-explanatory really. When I was getting set up for my infusion, I put in my headphones and started up the music on my phone. Thought it sounded weird and tinny so I cranked it up. Then realised nothing was plugged in. Yes, I was THAT GUY who is confused by technology.

--

As part of the monitoring of Tysabri patients, alongside regular blood tests we need to bring urine samples to each infusion. I always take mine with me but two women in the clinic yesterday had been unable to get one in their own homes and were chugging back coffee and water to achieve the desired result. And they were still struggling to provide it.

The nurses aren't able to proceed with the treatment until they've been able to check patients' urine so it was getting a big fraught (although as you can tell we were all able to discuss this between us all quite merrily and shamelessly).

Both were able to eventually start their treatment but one of them - in a horribly predictable manner - then had to go to the toilet three times in quick succession after being plugged in for her infusion.

If it hadn't been incredibly inappropriate (and very much none of my business) I'd have been tempted to talk to her about my experiences of self-catheterisation. I've been doing it for over a year now and - although it's no-one's idea of a good time (if you disagree, please don't comment. No judgement, each to their own, I just don't need to know) - it is amazing how much more freedom I have in leaving the house. Maybe not at exactly the time that I need to, admittedly, but very much in the correct general ballpark and with considerably less disruption.

For goodness sake, as well making it through my appointment uninterrupted, I even watched the whole of The Last Jedi without going to the toilet once. And that film is LONG and *whispers* a bit dull...

This was the biggest hit from my last infusion (with apologies for the headphone mix up!)