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…
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.
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!
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)?
Hallo all, just a quick update on my health matters.
I had an update with my neurologist yesterday to go over the findings of my diagnosis in the Krankenhaus last week. He reiterated the diagnosis of remitting/relapsing MS which we were all prepared for. Upon my return from holiday, he will be putting me on a clinical trial of a boswellia based treatment. This will involve monthly MRI scans and assessments on my health. It all sounds positive and certainly seems like the best option for me at the moment. The early indications from the majority of participants are good and, for me personally, it keeps me away from regular injections. . .
Best of health!
So, I got out of the Krankenhaus here in Berlin last Friday.
I was in the Charité for 3 nights; three very long days and very boring nights. Pretty tiring, as all hospital stays can be. Tiring and washed-out dull but not unduly distressing. There was quite a bit of staring out the window (see above). The food was pretty reasonable as hospitals go – although my last meal was a small fruit pudding preceded by a large fruit pudding. The vege menu had clearly been exhausted…
I won’t bore you with all the details of all the tests I went under. I’ll just say that they were extremely thorough. I have had MRI scans before of course, and there were another two carried out here. There was also the not-as-bad-as-I-feared lumbar puncture (or in American, spinal tap) – 30 seconds of sharp pain and then no bruising, so fair enough. It was also a good test of my (very poor) German…
Anyway, on Tuesday we went back to the hospital and saw the neurology team assigned to me. They confirmed what we all suspected they would, which was a diagnosis of remitting MS. I was prepared for this, as my last scan in England left the neurologist in no doubt.
What remains now is to figure out with my neurologist here the best course of treatment. I’m seeing the neuro on Montag for an appointment, so I’ll write again after that. My only thoughts on this have been wanting oral treatment such as a daily pill, as opposed to injections. keine Nadeln! keine Nadeln!
Time warp in a wire trap
Double image and stilted second tongues
Ich habe vergessen the number of times
I have tried to decide
Just how to prioritise
Fundamental methods of life
In das Krankenhaus
I try to recall without success
The meaning of health
And then a breath of pfeffer
And it is back in sight
The sun shines outside
And I want to play
As it is MS Awareness Week, I am continuing my related posts into the condition that I have recently been diagnosed with. Here is my attempt to put the main ‘facts’ into the most straightforward of terms…
Multiple Sclerosis, or MS as it is often abbreviated to, is an inflammatory disease of the brain and spinal cord that affects around 2.5million people worldwide, or approximately 1 in 2800. With an extensive range of reported symptoms and types of people affected, it is not always a straightforward matter for medical professionals to diagnose the condition.
However, some probabilities and likelihoods have been established about the disease since its first diagnosis in 1849. Firstly, it is usually known as a condition of young adults, with the first appearance of clinical symptoms being in a patient’s early 30s, with diagnosis following after a suitable period of observation. Secondly, it is an affliction more likely to affect people in the temperate areas of the northern hemisphere, with five times more diagnoses in these climates as opposed to tropical climates. Thirdly, there is some evidence of genetic factors playing a part in passing down the condition, with the risk of contracting the disease incrementally increasing if a parent or direct relative is a sufferer.
With these statistical likelihoods, professionals can begin to make a diagnosis based upon a patient’s symptoms and observations. These can include loss of feeling in the nerve endings, memory problems, spatial awareness limitation, vision and speech problems, hand-eye coordination faults and problems with balance. At this stage, the professional will usually order an MRI scan of the brain and or spinal column to check for evidence of lesions or scarring. If found, a diagnosis of MS can be made.
Present recommendations for treatment usually revolve around the management of the symptoms. In a first occurrence of MS, steroids are usually employed to calm the inflammation and stabilise the patient. Following this, the present thinking is to contain the symptoms and do everything possible to avoid a relapse or the repetition of the symptoms. This is usually done with a regular drug treatment of interferons either injected daily or weekly. There are also currently plans to introduce a new oral drug treatment onto the market later this year, which would remove the need for injections.
The most common type of MS is the relapsing-remitting form where a sufferer can go months and years between one attack and another. At present there is no known cure. However, in most cases an MS sufferer should be able to live a fulfilled and healthy life without too much unnecessary disruption.
The modern thinking is that where the symptoms and attacks can be so wildly unpredictable, the best course is through containment and healthy living. While drugs and modern medication play a necessary part, so too does diet and fitness.
There is some evidence that lack of sufficient vitamin D levels play a part in MS symptoms and many sufferers take supplementary quotas. Healthcare professionals recommend a balanced diet, and in some cases advise becoming a pescatarian or vegetarian – the reason being that saturated fats commonly found in meat products can be harmful to general health and the control of MS symptoms. Heavy smoking is also strongly discouraged. With this in mind, and with a sensible fitness regime established and a positive approach to lifestyle, it is completely possible to ward off the symptoms of MS and lead a healthy and active life.
So…a bit of a different blog post from my usual film or poetry related posts. I’m getting a bit personal. (Well, that’s what blogging is all about isn’t it? eg I’ve made a rather nice pie or I’ve been all around the world or I’ve been to a rather good party or I’ve created sound loops of animals surprising people and then making weird noises…)
As it is MS Awareness Week, I’ve decided to take the step of making the first mention of MS on here. Also, I couldn’t really be bothered in setting up another blog. So it’s here, and that’s it.
So how did it start with me and what does it do?
Well… Following a year of being in a kind of limbo as regards to my recent health problems, I was diagnosed with Multiple Sclerosis back in October 2012.
In order for it to be confirmed, most MS neurologists usually need to see evidence of more than one ‘attack’. This happened last Summer with a case of optic neuritis. My left eye was semi-blind for around 48 hours and then came back gradually.
The year prior to that I had been kept in hospital to receive steroid treatment for inflammation of the brain. Linked to this was lack of balance, poor vision, coordination and lack of sensation in feet and fingers.
Since then I’ve moved to Berlin with my (very supportive) partner and have had no further attacks. However, slight changes have been noticeable, mostly in regards to my short-term memory (never good) becoming even worse. Thankfully physically I have been holding up so far. Even in the fairly full-on Berlin winter!
I am hopefully about to begin ongoing treatment from the neurologist here in Berlin. I will be reporting on here about how this is going. In the mean-time, I will just say that I am feeling extremely positive in general and that I feel able to cope with any demands that my condition (and life) puts onto me.
(ok, back to the weird noises)