Sunday, 30 July 2017

what is not but could be if

As far I'm concerned, every relapse seems to have its own soundtrack. My 2012 relapse coincided with Little Ms D's first birthday which was emotionally hard for me to take. Because of this, I probably should have avoided coming across the music of Sharon Van Etten, whose first three albums are devastatingly raw and emotional.

Her voice - simultaneously tremulous and defiant, powerful and wounded - got me through the worst of my 2012 relapse, even if at times listening to her albums was the kind of bad idea which you can't help carrying through.

The sharp-eyed amongst you will have noticed that the title of this post comes from yet another Silver Jews song, and they are the band that I've been reaching for most often this time 'round.

Their music is a kind-of shambling, lo-fi type of country - but the skewed romanticism in the lyrics, delivered by the ruined voice of David Berman, are what does it for me, described on their Genius page as offering "an alternative, sometimes inebriated take on the traditional country themes of lost women, whiskey, Nashville, and disillusionment".
Silver Jews
One of my most oft-quoted lyrics (just ask Mrs D) is:
When I go downtown
I always wear a corduroy suit
'Cause it's made of a hundred gutters
That the rain can run right through.
But a lonely man can't make a move
If he can't even bring himself to choose
Between a pair of black and a pair of brown shoes
- Black And Brown Blues
Last week I went back to the QMC for a blood test to see if I have the JC Virus (mentioned last time because of the effect it can have if you take Tysabri).

Is it weird that I'm impressed by the fact that my blood had to be sent off to Denmark to be tested? Super-fancy!

This visit gave me an opportunity to ask the lovely Kate (MS Nurse) a few more questions because it had all got a bit noisy in my head and after reading that MS Trust leaflet I didn't really fancy taking any of the suggested new drugs.

She pointed out that the risk of developing progressive multifocal leukoencephalopathy (PML - or as Mrs D likes to point out, "piss myself laughing") is only 1 in 100,000 if the test comes back negative. If it comes back positive it "only" goes up to 100 in 100,000. And regardless, the MS team monitor people closely and continuously if they go down that route.

She said that Tysabri woud be her recommendation as Alemtuzumab can lead to a higher risk of developing another autoimmune disease - I know that this can be a common issue with any autoimmune disease like MS but why add to the risk?

So even though I can usually find myself unable to choose between my options*, if my bloods come back OK I'll likely be going down the Tysabri route.

* just like like the narrator in the song quoted above - it's weird how things turn out, right?!

I have another MRI next week. Which will be the third week on the trot that I will have visited the QMC (and the fifth time in seven weeks!).

Wednesday, 19 July 2017

another round of DMT pick n mix

genuinely helpful diagram that the brilliant MS Nurse drew for us yesterday
Yesterday I went to see the team at the QMC for a follow-up from the recent MOAR (Mother Of All Relapses) and things have certainly changed in the realm of Disease Modifying Therapies.

Most noticeably there seems to be a "failure will not be tolerated" attitude to treatments. Which is why after my first relapse in 5 years (and first in the almost 2 years since I started taking Tecfidera), the Neurologist and MS Nurses are keen to discuss changing medication, and a step-up from First Line treatments to more aggressively effective Second Line options.

So we're now back in the realm of weighing up drugs (or, more likely, sticking a wet finger in the air to see which way the wind blows) - the key contenders are:

Finngolimod (aka Gilenya) - one pill a day but the promised reduction in relapse rate means there's not a huge amount to choose between this and Tecfidera - it's still classed as First Line, and - like I've said - the various teams would like to see a move to something a bit more effective.

Tysabri (aka Natalizumab) - an intravenous infusion once every four weeks. The MS Nurse described this as acting like velcro on the immune cells in the blood stream, preventing them from passing through blood vessel walls and into the central nervous system where nerve damage occurs.

As it says in the MS Trust publication on Disease Modifying Drugs (links opens as a PDF):
Tysabri is a highly effective (category 2.0) DMD; it reduces the number of relapses by about two thirds (70%).
Sounds great, yeah? But hang on...
Treatment with Tysabri may increase the risk of progressive multifocal leukoencephalopathy (PML), an uncommon brain infection that can lead to severe disability or even death. PML is caused by a mutation of the JC virus, a common infection completely unrelated to MS. 
So there's that...

And finally Alemtuzumab (aka Lemtrada aka Campath) - taken as two five-day intravenous infusions, 12 months apart. Again, this is a highly effective category 2 DMD, reducing the number of relapses by around 70%.

Because Alemtuzumab suppresses the immune system, people are more vulnerable to infections, and there's the usual headaches and nausea. But surely that's not all, right?
Three serious side effects have been reported from clinical trials:
  • overactive or underactive thyroid gland leading to thyroid disorders, affecting 360 in 1000 people
  • 
idiopathic thrombocytopenic purpura (ITP), a serious disorder which prevents blood from clotting, affecting 10 in 1000 people 
  • 
kidney problems, affecting 3 in 1000 people 
These side effects are potentially serious but they are treatable if caught early enough. People taking Lemtrada will be informed of the early signs and symptoms of these side effects. 

When I was talking to the MS Nurse, she implied that Alemtuzumab had more risks associated with it (certainly more than the MS Trust publication implies), mostly because of how intense it is, effectively wiping out lymphocytes - more reading will have to be done.

So this is where we are! Next week I'm going back to the QMC for a blood test to see if I have the JC Virus and am therefore more or less likely to develop PML.

On first glance, I was leaning more towards Tysabri but now I'm not so sure.

Thursday, 13 July 2017

suffering jukebox

I haven't had the energy to update since the recent flurry of activity. Even now, a week and a half after my last dose of steroids, I haven't been able to sleep through the night. It seems to be that I go straight to sleep, then an hour later I need to go to the bathroom. Then I sleep for another 3-4 hours before I need to get up again. It's very frustrating.

And this just in from our TMI desk - I'm worried that I might be in danger of developing a Urinary Tract Infection. As Fergie would have it, Glamorous.

Which is why I started writing this post this morning in the sun, drinking as much water as possible.

More positively, the adaptations we organised around the house were fitted a couple of days ago.
  • An extra banister on our stairs
  • Rails on a wall on the landing
  • Grab bars and a (non-permanent) seat in the shower, with a further grab bar by the toilet
  • Something under the mattress which gives me a metal bar to hold onto when I get in and out of the bed (it could also prevent me from falling out!)
  • A raised toilet seat
We also had an extra frame for the downstairs loo which we discovered too late doesn't allow us to close the door. So that's going to be swapped for another raised seat.

All of these things have made a tremendous difference - I was able to easily get around the whole house yesterday. Maybe that's why I'm so tired today? The old steroid side-effect of feeling too good and pushing yourself too far too soon?

The OT who came over last week is also arranging for me to have some physio at home, which will be good. She's also arranged with the Neurology Outpatients Therapy Services (where I normally go for physio) for an appointment with a Speech and Language Therapist - I've had a couple of instances where I've almost choked on food and drink, and this is apparently another potential problem with MS. It really is the gift that keeps on giving, isn't it?!

Mentally I feel I'm doing OK, despite being a bit snappy. But because my mobility is still a bit dodgy I've postponed my CBT until the week after next.

Next week I've got a neuro appointment when I'll give him some feedback about the two different steroid doses (5-days good, 3-days SO bad). And in a couple of weeks I have another MRI, and depending on the outcome we might be looking at trying different medication.

The worst-case scenario hanging over my head? A rebadging from Relapsing and Remitting MS to Secondary Progressive.

I know there's no point in worrying about the future, and this is how most people's MS progresses. But still.

-

Like another recent blog post, the title for this one came from a song by Silver Jews, a favourite band of mine. Enjoy.

Friday, 7 July 2017

what a week

On Tuesday of this week I finally returned home. The thought totally stressed me out in advance to be honest but since being home I've felt much better. I really missed being here, even though I was super comfy at my parents' house.

I'm slowly getting stronger by the day - I think stepping away from the incessant bloodletting of GoT is helping. But it has been pretty full-on since I've been back:
  • Wednesday we had a visit from a Community Occupational Therapist who asked us loads of questions, watched we move around the house and made loads of suggestions about adaptations. Our Landlord is a family friend so getting permission wasn't a massive issue but these will be fitted in the next week or so - mostly rails and grab bars in various places around the house.
  • Thursday we had a Disabled parking bay painted outside the house - we applied in October of last year and the actual job only took five minutes to do. This is huge for us (not that I'm driving anywhere at the moment).
  • Earlier today I had my PIP Assessment - it was so bizarre, going through that form again, talking about my medical history AGAIN. Truth be told, things have changed a lot since I submitted my application in January - my mobility is a lot worse than it was. Could I have done without the stress? Probably. Was this week the best of all times to display the issues I'm having? Very possibly. Now we wait between 4-6 weeks to hear back.
On PIP, I called CAPITA (the assessor) earlier this week to let them know that Mrs D was going to be in attendance and also to see making an audio about recording of the assessment (after reading this on the Citizens Advice Bureau website). They said it wouldn't be possible unless we were able to provide two identical CDs or Tapes on the day. I explained that I was hoping to be able to just record it on my phone for reference but was told that wouldn't be allowed because "people can have all kinds of sound editing software on their phones".

I said what if I record it as a sound file, press the stop button in front of the assessor and then email the file immediately without pressing anything else. Apparently this wouldn't be allowed either.

Isn't that nuts? Especially when most people's first thoughts will have been to record the audio on their phone.

PLUS they called an hour and a half before our scheduled appointment to say they'd had a "cancellation" and could they come round in 20 minutes. And I'm paranoid at the best of times.

Sunday, 2 July 2017

steroids days 4 & 5: lazy days

last steroid
I've been spending the last couple of days just relaxing - had a lovely day yesterday hanging out in the garden and watching films with Mrs and Little Ms D. We've continued the GoT binge-watch (up to Season 3 now!) - very watchable nonsense.

Bit of a crappy night's sleep last night so I've been zoning in and out for most of the day and actually had a nap this afternoon. Anyone who knows me will know that this never happens EVER.

Bit nervous about what tomorrow will bring without steroids. To be completely honest, of the two courses I've had to combat this relapse, the positive effects have been way more noticeable on the lower-dose, longer-course version.

I think the 1,000mg per day for three days is a bit of an 'experiment' the the Top Prof is keen on. I can see the sense - it delivers the same amount as you'd get through three days of IV bags but you don't have to keep coming into clinic. Personally, I think having to digest that many tablets did NOT agree with me. It's quite telling that the Prof admitted that every time he's sent a patient down to the pharmacy with his hardcore prescription, the chemist will always call him to double-check that it was actually correct. Hmmmm. We shall see.

I've been mostly keeping up with my physio exercises and reintroducing dairy into my diet with a vengeance. I'm still a member of the OMS Lifestyle Support Facebook group and earlier today one of the members posted the following video from NutritionFacts.org.

It's pretty interesting (much like GoT I let a lot of it wash it over me) but it points out that moving to a plant-based diet can drastically reduce your white blood cell count - which Tecfidera does anyway.

No more experiments!

Friday, 30 June 2017

steroids days 2 & 3: night-time stress, muted positivity and a PIP-related question

As previously stated, on Day 2 I woke up fine after a good chunk of sleep. Otherwise nothing much to report apart from I had a visit from Mrs and Little Ms D which was absolutely lovely. They were pleased with how well I was doing. Truth be told my legs didn't feel quite so switched on - nowhere near as bad as they were pre-steroids, but not quite as non-shuffling. Might just have been our perception? Or even just the flappy slippers I was wearing?

Sleep was hard to come by because STEROIDS but also because I had a few thoughts rattling my noggin (which I couldn't do a damn thing about at 4am):
  • My parents had to cancel a holiday to look after me this week - they only had to pay for flights but still. They rescheduled them to this coming Monday which is the day after I finish this round of steroids. When I finished last week's heavy-duty steroids that obviously led to a rapid two-day decline and immobility. So obviously I was freaking out about that. Until I spoke to them and they said that of course they weren't going (see 4am above)
  • My wife has had to take the last week off work due to stress (OBVIOUSLY) so I'm worried about her. Her mum and dad live really close (like, across the road) and I think it did her good to see me up and about yesterday. But still - I worry.
  • I have a PIP assessment (at home) next week today. Yes, this could be - ironically - the perfect time to have this visit and Mrs D will be in attendance too. But just how much stress can we take? Furthermore - and here's the question for YOU - how should we prepare?
I've already done a bit of light exercise today - just a walk around the garden as it's the first day that it hasn't been raining (I always hated Thomas Hardy's use of Pathetic Fallacy, so this has been particularly annoying). I'm keeping on with regular physio exercises as I arranged yesterday to have an open appointment until we have a better idea of what things will look like next week). The wider plan is to spend a bit less time being totally static (although my dad and I have come late to the party and are binge-watching Game of Thrones).

Here's some good news:
  • After nine months of applying, chasing, mis-communication and MORE chasing, earlier today Mrs D sent me pictures of markings for a disabled parking bay outside our house. The street we live on is busy (plus points: I learnt to be a Parallel Parking JEDI while I was wooing Mrs D) but is also the closest street to the City Centre which doesn't have a residents-only parking scheme. Leaving the house can be incredibly frustrating. People will do circuits in order to find a space and then park really, REALLY badly - one car (owned by someone who walks into town to work or shop) taking up a space which could easily house three is a regular thing. This is going to really help.
  • I've spent a bit of time on the phone to my GP about getting the Community Occupational Therapy team out to do an emergency assessment of our house and make some recommendations about possible adaptations - something which the MS Nurse spoke to us about on Tuesday. I've just got off the phone to them, they're coming out next week, which is great. Hopefully I'll be in a position to not need them soon but at least they'll be in place for the (wearyingly inevitable) next time.
  • As I mentioned in a comment to the last blog, I start therapy in a week or so which will be good for me.
As well as GOT (Grade-A NONSENSE but entertaining enough) I've been listening to the S-Town podcast - something I've had lined up for ages but still, late to the party again. It's bloody brilliant and incredibly moving - HIGHLY RECOMMENDED.

If you've read this far, don't forget to give any advice about preparing for our PIP assessment! Thanks.

Thursday, 29 June 2017

steroids day 1: the drugs do (appear to be) work(ing)

thank you, friend
After a fairly dispiriting night (business as usual - totally immobile, unable to get out of bed without assistance, plus a couple of 'accidents' - nice), I woke up at my parents' house to find that not only could I still not get out of bed, but i was also unable to hold a drink or feed myself. My dad had to feed me breakfast and count all the bits of medication I would be taking, including my first day of this second round of steroids.

As I took the first one, I remember focusing all my strength on thinking "This WILL work".

I just chilled out in my room for about an hour (I say chilled out, I watched an episode of 24). And then I stood up and walked across to the bathroom.

As I type this (and the very idea of that would have been laughable yesterday), it sounds ridiculous. But I swear it happened like that, it was that rapid.

For the rest of the day, things continued to improve, I was able to look after myself without assistance and also do some regular physio exercises. Perhaps most surprisingly, after settling in bed with a few podcasts to listen to as the steroids put the kibosh on any idea of sleep, I nodded off within five minutes. I woke up earlier than normal but it was a good chunk of kip. And my legs and hands were still working when I got out of bed.

I'm not naturally the most positive of people (see blog title and ask my wife), but one thing I got from reading George Jelinek's Overcoming Multiple Sclerosis book was a section about the importance of Hope. Unfortunately I don't have the book with me otherwise I'd quote a bit of it but y'know those people that we've all seen at MS events who play Competitive Disability Bingo? Or people who talk down the achievements of people with MS who run marathons (Hi Swisslet) or climb mountains because they've ONLY got Relapsing Remitting MS, and anyway I've had it longer and you don't know how bad I've got it? I think they've given up hope.

And I think it has to be a conscious decision to abandon hope. I'm not saying this is going to help full-time wheelchair users rise up and win Ninja Warrior (or whatever) and it has to start with a good dose of Stoicism and an acceptance of what you're dealing with. But if the only thing you can hope for is that this is as good as it gets then that might be start.

I'm hoping that these steroids will help me get back to how I was before this relapse. And after that I hope to carry on getting a bit more control of my body and improve my fitness (I'm neither a marathon runner nor a mountain climber).

I had no idea that this blog post was going to end up so sappy when I started writing it, and I hope it doesn't come across as patronising or insulting to people who are dealing with worse situations than mine.

FULL DISCLOSURE: things were so bad yesterday morning that I was genuinely thinking of the best method to end it all. Sorry but it's true. My Dad displayed our family brand of gallows humour by saying that I wouldn't be able to hold a knife steady, and anyway I'm taking so many tablets that it wouldn't make a difference.

But I do think there must be something in the idea that having some kind of hope in medication and treatment - something with a basis which is tangible, scientific, provable - then it will be more likely to have a positive outcome. It's like when I was doing CBT all those years ago - a psychologist friend said that if people go into CBT expecting it not work for them, then it more than likely won't. I went expecting it to help and it did.

All I did yesterday was take a dose of steroids believing they would work. And they are.

FOOTNOTE
When we spoke to the Neuro on Tuesday, we talked about the OMS diet and asked him his opinion. A vegetarian, he said that his advice would always be to eat a balanced diet. He would also like to view the evidence for any diet, as he had seen patients who had gone down this kind of route while also spurning drugs. "And they always end up back here eventually."

So although I'll take other parts of the lifestyle - meditation (270 days unbroken), Vitamin D and Flaxseed oil supplements, Hope - I'm going pescetarian from now on. Less of a mental strain for everyone involved. If we're out and the Vegan option looks good I'll probably choose that over anything else. And I genuinely love some of the things I've been eating while following the diet.

But at least I'm not a Reducetarian - for fcuk's sake, this is an actual thing and we're surely in the End Days.