Saturday, February 25, 2006

Foreword for MS Yes Project

This is Alternative Kitten speaking (typing) (Rachel). Paul has asked me to do a foreword for the MSYes Project giving you the details of what MS is, how it works (yes, you will need a strong cup of tea or coffee for this), some useful links for information, and a short synopsis of my life with MS story. So here goes ...

MS stands for Multiple Sclerosis. MS is an autoimmune disease of the central nervous system, that is, the immune system attacks the nerves in the spine and brain, for reasons best known to itself. The cause is not known, although current theory suggests that part of it is genetic, part of it is coming down with the 'right' virus during your life (no one is sure what the right virus is), and some kind of environmental factor, such as not enough sunlight, or consuming too much fat. It's all a little vague. And the real fun part is, the disease is not curable (they will get round to a cure once they figure out the cause), and it is progressive, i.e. it gets worse over time. But, hallelujah, except for a very few extreme cases, it is not fatal!! Oh goody, I have to live with this damn thing for a long time. Oh joy, oh happiness!

The symptoms of MS are many, and varied. Talk to 20 people with MS, you will get 20 different lists of symptoms, some similar, some different. Doctors really hate us, we can't even get the story about our symptoms straight. Common symptoms are:
(taken/quoted from the following URL -

Symptoms range from mild to severe, from brief to persistent. Some symptoms, such as walking difficulties, are obvious to other people; others, like pain or fatigue, are not. These are often referred to as hidden, invisible or silent symptoms, and can be more difficult for people unfamiliar with MS to understand.

The more common symptoms of MS include:

Fatigue: an overwhelming sense of tiredness making physical or mental activity hard and, for some, impossible.
Problems with walking, balance and coordination.
Visual problems, including blurred or double vision, temporary loss of sight in one eye, or both.
Numbness or tingling in the hands or feet.
Pain: sometimes mild, sometimes severe.
Loss of muscle strength and movement.
Stiffness and spasms: a tightening or involuntary movement in particular muscle groups - especially in the legs.
Anxiety, depression or mood swings.
Cognitive problems, such as difficulty with memory and concentration.
Speech problems, including slurring.
Continence issues: a lack of control over bladder or bowel functions; an increased risk of urinary infection.
Sexual problems, such as lack of libido or erectile difficulties. (Though it should be noted that MS does not affect fertility.)

Further information and details can be obtained from the MSRC wesite:
Multiple Sclerosis Resource Centre, the object of our charitable effort.
The benefit of the MSRC site is that it provides a wide range of information on the disease, updates on all the latest research, what treatments are available. They provide events and hellp with issues such as insurance, which gets interesting if you have to confess to having MS. It's not fatal, but insurers use it as an excuse to load the premiums anyway. The MSRC provide a helpline for people with MS and their carers to call to get help and advice on issues affecting them, or just someone to chat to and have a bit of a moan with. It is a little known fact that tea, sympathy and good moan are two of the best treatments for MS, but unfortunately are only effective for short periods of time.

Other useful and informative sites are:
Multiple Sclerosis Society, UK
National Multiple Sclerosis Society, USA
Canadian Multiple Sclerosis Society
Multiple Sclerosis Society Australia - someone has beaten us to the comedy, be inspired by this very funny site, but don't steal, the material is copyrighted - a list of famous people who have/had MS, yes I know, I share a disease with Alan Osmond, how untrendy is that?

You get the idea. Type multiple sclerosis into Google, and you get the whole lot, good sites, useful sites, sites trying to sell you stuff, sites wanting you cash, but unusually, not an advert from eBay offering to sell you MS. Good thing, really.

My Life and MS

Do not let the below scare you, all illnesses are frightening things. It is not kind of request for pity or sympathy, just a factual description so that you have an idea of what the disease does. It may even inspire you with some vlogging ideas.

I had my first symptom of MS when I was 17 (classical textbook age). I had optic neuritis. But at the time we did not know it was MS, and it was put down to being caused by the stress of being in the last year at school and having Big Exams. It was diagnosed as Neuritis, a thing brought on by stress, not serious, and treated with vitamin B tablets. Nothing to worry about.
Over the next few years, I odd bits of numbness in my face (weird), the odd stiff leg, but all associated with stress, and nothing to worry about.
Then one day when I was 22, I went to my doctor to ask if there was anything new to treat Neuritis with, besides vitamin B, and she decided to send me to the Neurologist. I assumed this was to double check that I did not have some obscure unpleasant disease. I saw the Registrar, he was nice, got sent for an MRI scan (very techy stuff, look it up). Then the GP told me why she had sent me to see the Neurologist - she thought I might have Multiple Sclerosis. This scared me to death. The UK MS charity were at that time running a money raising campaign in which they showed an ad stating that if you got MS at 20, you might be paralysed for life or go blind. This made me feel hopeful. Not! So I saw the Consultant Neurologist, and he confirmed that yes, I have MS, but as he had no kind of bedside manner, left me feeling that he could not help me, and I should be considerate to him and crawl away and die. Don't you love doctors.
So, over the next few years I continued to have very mild symptoms, but be very afraid of what the MS might do to me, and go through the grieving process for the loss of my health and immortality that I had heretofore had. Eventually I got used to the idea, became more complacent, and proceeded to ignore the condition as it didn't really do anything to me. The odd bit of numbness or stiffness, nothing you can't live with.
Then, 2000 onwards, yes Y2K - ok so it's an operating system glitch that I didn't get fixed and my body has reset to 1969, it started getting a little worse, and doing more to remind me that it was there. I got numbness in the left side of my face more often, I lost the feeling of detail in the tips of my fingers, I got stiff legs more often, I started getting mild girdling. Small things, but scary to me at the time.
Then, last year, the MS realised that I had had the illness for 17 years, and it hadn't done anything really unpleasant. According to the textbook, it should do something nasty after about 15 years, and some idiot gave it the textbook to read. So it went evil on my ass. My legs went south for the winter, and I had to walk with a stick. Driving was an interesting passtime I could no longer partake in. At worst, I had two days I could not get out of bed, and needed the stick to get around the house. I had leg spasms, severe fatigue, numbness from the waist down (don't even ask about the effects on my sex life), intermittent girdling, and severe lack of concentration. I find the best way to describe it is this: usually I read 500 page novels, and popular science books about quantum physics. Last year, I could not keep up with a plot more complicated that Mills & Boon or Dick Francis. If I had had any Nancy Drew, even that might have been a little heavy for me. I didn't work for 4 months.
Since then it has gotten a bit better, but I don't think I will ever return to where I was before.
I can work again, but more than 2 months at full time kills me, and I have to off sick again. Currently looking to a good part time job.
My on going symptoms (there all the time) now are: 50% ish numbness in my legs, tips of fingers have about 25% feeling, leg spasms, numbness in left side of face, fatigue, lack of co-ordination, muscle stiffness. This varies with how tired I am, so in a good moment, I am pretty fine, but if I have been active, then just don't trust me with your mother's best china plates, you may not see them alive again.

So - let's raise some money to help people with MS. I have read through what I have written and it scares me. And I know people who are worse off than this. Why MS and not cancer or AIDS? Because this was Paul's idea and his wife (me) suffers from MS. If this ever really takes off, we can look at raising a lot of money for a lot of charities, but we need to start small.

So get out there and do MS vlogs. Short, 30 seconds odd, with visual comedy, limited dialogue, Paul is posting instructions for what he wants.


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