Category Archives: Living With MS

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…

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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…

Statins possible effect on the advanced stages of MS

Statins possible effect on the advanced stages of MS

Health Update… out with the Bos…

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Above – the peaceful Urnenfriedhof Gerichtstrasse in Wedding, Berlin

 

Due to horrendous levels of acne on my face that appeared during Xmas and beyond I’ve decided to stop taking the Boswellia Serrata clinical trial medicine. This is a shame as it did seem to be having quite a few positive results. My short term memory and concentration levels have improved, as have my energy levels. However, my face was a mess. . .

Apparently, this pretty major side effect has been seen in other trial patients and the NeuroCure doctors agree with me that a different form of treatment should be looked at. The positive benefits are pretty pointless if I’m uncomfortable showing my pizzary visage around!

Anyway, after being off it for nearly 2 weeks it has cleared up considerably. So there’s little doubt that it was the treatment that was having this detrimental effect on the skin.

One drug that has just received EU-wide acceptance is known as Tecfidera. (Although not on the UK NHS as yet…) This is an oral treatment again (so no needles!) and has shown a pretty successful rate of minimising relapses and lesion growth. The drug has been used for nearly a hundred years in Germany for psoriasis treatment so perhaps it can also help my skin out! The general plan at the moment is to wait for another 4 weeks to be sure that the Bos is out of the system and then hopefully try the Tecfidera…

Whatever happens I’m very positive and – teenage face aside –  have had no symptoms of anything else worthy of note.

MS Update – Keeping on track

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Talking to myself in the 3D spectre
No time to pass the buck to the blistered Mister
There’s a slight on the sight of the stock machine
Copied… pasted… remains unseen.

A beneficial lesson learned by way of scripture
Take away the ethics and paint me a picture
What does it say about you?
When you’re on the run and awaiting different views.
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I had my first MRI scan of the new year this morning. The technicians pointed out a new lesion right after we were finished. Only one, and as they tell me, it may take another month before the Boswellia pills start taking a shrinking effect on the lesion activity. One thing is for sure – the early mornings don’t really get any easier! As I write this I feel pretty tired but positive about how it’s all going. One month at a time…

We’ve also taken the (pretty extreme!) step of having a dry (no alcohol) January. This might well have something to do with energy levels and concentration levels improving…but, who knows!

Apart from that I’m staying busy with writing (both for cash and er, not for cash) and drawing. I’m also very excited by a musical project that will soon see the light of day. Based around the soundscapes of my musical genius collaborator and my words and vocals, the first EP will be around in the ether pretty soon!

Peace out/Ciao/Tschüssie!