Tag Archives: 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…

Advertisements

Tecfidera etc …New Meds. New direction.

Image

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…

 

Gravitational waves and Möbius strips

Image

Gravitational waves and Möbius strips
I just caught a drift of the drip of the Styx
A cracked Krakon talks on and on
And as I had presumed it might be for long…

With a Multi-verse theory and a cheque book and a pen
You can write to yourself the function to spend
An automatic pop-up cloud is just starting-up
Give it room to breath or it may just combust…
————————————————————————–

So… echoes of the big bang, eh? A certain amount of Synchronicity (or Synchronicity-lite, perhaps?)  has been echoing around the flat of my head-space this week.

While reading the introduction to Paul Davies’s The Goldilocks Enigma (a popular cosmology and physics book from 2006) mention is made of the author’s collaborator and fellow scientist Andrei Linde. Linde has appeared widely in news articles about the discovery of these ‘echoes’ in the last few days, possibly proving his inflation theory. Davies also outlines on the first page of his intro a very brief synopsis of a novel he had been reading where Nazi Germany defeats Britain during World War II. He doesn’t mention the novel in question, but it sounds as though it has definite similarities to The Man in the High Castle by Philip K.Dick, one of my favourite science-fiction novels of all time and one recently revisited a few weeks ago.  Anyway, it got me thinking…

It’s strange enough for me  to be reading about science anyway, being as I am technically a double E GCSE science student. But there’s always time to learn new things, right?

In other news of a more personal universe, my health is pretty good and I’ve experienced no major adverse effects from coming off the old Boswellia Serrata… nothing like hearing a loud explosion giving birth to a flawed universe anyway…

Health Update… out with the Bos…

Image

 

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

Image

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.
————————————————————————————————————————

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!

X-Mass and Health update

Image

X-Mass in the UK

X-Mass in the UK
Another time for you
And another time for me
A tumble-down side wheel
Of oblivious cast
This rusting on the bumper
Has been set to last

Another sense of alteration
Freezing inside
The jumbling up of memory
And mixing logic dry
A welcome look above the store
We all ask for the same
But refrain from doing something more…
———————————————-

X-Mass this year was a curious mix of the old and the new. The feeling that I am in something of a changeable state is not exactly a recent one for me, but nevertheless it was one that spoke loudly to me during this period.
I saw some very good friends and family and returned to Berlin on Boxing the Box day.
Health-wise all is good, and I feel positive about the future and my personal well-being going forward. Bring on 2014!

SABA and Boswellia first week…

ImageSo, I started my clinical trial of Boswellia Serrata (frankincence) last week. It was an extra long day at the Charité , which left me feeling exhausted but confident in the ongoing handling of my condition. After 2 (count em! Er, 1, 2…) MRI scans, a motion capture research scheme and the usual tonnage of questionnaire forms and tests, I was off, big box of Boswellia capsules in hand.

After a week on the gradually increasing dosage of the treatment I feel fine. No major ups or downs. My sleeping patterns are still a bit disturbed and I still have some pretty bad stress related acne, but apart from that I have no real symptoms of anything too much. A week is probably too early to say in terms of memory/mental effects, but I certainly feel quite positive.

I’ll continue to write weekly updates throughout this trial.

Self-management of fatigue

Self-management of fatigue

Interesting post from an MS specialist on coping with daily fatigue.

Impact of Boswellia on Inflammation

Impact of Boswellia on Inflammation

I start a clinical trial of Boswellia next week. It all sounds very promising!

Monday Mix

ImageJust a quick update on the old health situation…

I’m feeling very tired and somewhat frail today. Part of that is probably the old psychological effects of ‘Monday Sickness’, a day of the week which I still have an inbuilt nervousness of, despite the fact I work from home and more or less work when I want deadlines permitting that is…
Cheering me from my dazed-slumber was the news I received from the Charité this morning. Next week after my last pre-trial MRI scan I can begin the course of trial-treatment. All going well this should lesson any undue worries I might have about the condition and how likely any relapses may be.

In general though, I am feeling extremely healthy and positive. Just a case of the Monday aversion today. In one sense, it is all very interesting, both psychologically and philosophically. When our mood goes so far in effecting how we see the world – how much is objective (hint – not a lot) and how much is subjective (hint – most of it)?