Category Archives: Living With MS

New DMT (first infusion)

So I had my first infusion of Ocrevus (ocrelizumab) last week and I’m happy to report that all went well. The next one is next week (14 days between the two).

After that, it’s just one infusion every six months, which makes things very easy for me!

It was a lot of sitting down in the clinic, about 4 hours, which is longer than I had been used to, but I did get to read the whole of the beautiful story ‘Kitchen’ by Banana Yoshimoto, so it was time well spent in all sorts of ways.

I also resisted the urge to refer to any medical staff as ‘Doctor Ocrevus’…

New DMT

It’s been 8 years since my diagnosis with (Relapsing Remitting) MS.

I feel very lucky in the fact that most of the time I don’t think (or write) about it very much. I have strong support from my partner, family and friends, and most of the time I don’t experience much evidence of the condition in relapses. Subtle things like concentration and memory are the main things I need to watch out for.

This week I’m starting a new DMT. I feel positive that I can continue to live largely free of any ill effects of MS.

Stand up walk about

Live for the day

Sleep calm at night

Automatica

Cells recycle themselves over and over.

The elements of myself that were once then

Are not the same now.

Things have changed.

As the body changes,

So too does the mind.

Radio play – The Sod – Vashti MacLachlan

Listened to this powerful radio play this week dealing with a subject I know pretty well… MS.
Have a listen…

Badday…

toonvectors-11703-140

We all get ’em.
And it could be so much worse.
Mustn’t grumble, cry out loud,
Or begin to start a curse.
There’s a line to draw,
And I’ll do it here and there –
The main predicament
Is finding a peg
To fit the square.
It’s a shifting colour
And a tangential wave.
The miscommunication,
Is only for the brave.
Amidst a call
To block the colour out
There’s a plea
Requesting for the shout,
That might get heard…

That might get heard
Here and everywhere,
A universal bargaining chip
With a sauce,
Of non-negotiable credit .
Eyes on the prize
Of mushy if’s and when’s,
The battered content,
Is half-unique until the end…

(Inspired by a crap visit to the hospital. Er, plus the news that Clip Art is gone)

Outside In

I just created a profile on the arts charity Outside In…

It can be viewed here

Looks promising!

Possible MS breakthrough?

http://www.telegraph.co.uk/health/healthnews/11073397/Multiple-sclerosis-could-be-switched-off-by-retraining-immune-system.html

World MS Day… update and all that jazz…

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So, apparently today is World MS Day

Not sure why today was chosen but hey, any way to increase knowledge about the condition I happen to have been diagnosed with is something I suppose…

In my own personal terms, I’ve been on the old Tecfidera for over a month now and no real problems. Feeling positive about moving cross Europa (er, by plane) to Italia in a month or so. Also been busy on a musical project which will see the light of day very soon…so hold onto your headpiece…

 

Tecfidera etc …New Meds. New direction.

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So…this week I started on a new treatment for MS. Known as Tecfidera, the Biogen produced caplets of dimethyl fumarate have recently been approved in the US, EU, Australia and Canada. Anyway, it has shown good success rates in reducing relapses and inflammations. So, to cut a short story shorter, I’m pleased to be on it.

In other news…we’ve also recently given in our notice here in Berlin and we are off to Italia in July…

 

Realistic optimism in MS ‘breakthroughs’…

Realistic optimism…

Peter Thompson writing in The Guardian  on possible breakthroughs in the treatment of MS with statins and keeping a realistic approach to it all…