Monday, February 27, 2006

First Day.

Monday 27th February 2006: Started the day well, by having three cups of coffee and several cigarettes before starting up my e-mac. From the moment I turned it on I knew it was going to be one of those busy-yet-not days. I answered all e-mails that I could and registered some new contributors to this blog and to spinxpress, the software we will you to get the data from everyone no matter where they live into one central place for final editing and splicing together before publication.

Then I actually rang Lawrance Wood, CEO of the MSRC, who instantly knew me, when I started going on about video as John Habkirk(Squiffy) had told him so much about us from the first brainstorming session. He gave me his full backing for the project and insisted that we didn't worry about the minor percentage of people that we might offend, this is a small minority and they shouldn't spoil the fun we can have making money for this worthwhile charity. He also wants to host the video when it is finished were he can offer a 3gp version for say £1.50 a time, which helps even more.

I would like to welcome our new recruits, Randy Mann, Erick Bernard and hopefully Peter Zottolo. Thank you all so very much and hope to see you or hear from you in the very near future.

I have started up this blog for one if you want to show your video before you send the DV or 720 x 576 mov file via spinxpress, upload it to Dailymoton and then post it to the msyesgroup already set up with appeal video from Friday and then I will blog the video to this site. Also don't be afraid to write blogging your ideas or know how to this blog, just like this, it is in our best interests if we keep a journal of the work that we are doing, it also keeps not only us closer but it will generate interest from passing traffic or from the various links I have left on various message boards.

I have also set up a Flashmeeting for this weekend Sunday at 8 PM (GMT), times will vary across the US and Canada, but it didn't stop too many people from not turning up last time. If you click on the link there is a count down associated with the start of the meeting so you have a rough idea of when it starts if you don't live in the UK.

Why I am using spinxpress? It is a simple and fast way to get your data from your computer to our central data store loaned to the project by Phil Campbell, here you will be able to upload your data quickly and securely. At the end of the day I want your video in it's purest form for final editing to broadcast quality and final splicing, so the video must either be in .dv or 720x576 .mov format. You can then upload this, let's face it HUGE file through spinxpress to the server so that when it comes to the final cut polish up the editor (Conrad Slater) can just download the file and start doing that thing he loves to do. All this and more will be explained in the next brainstorming session this Sunday. Hope to see you all then. Love and Thanks Paul XXX

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.

MS YES Promo

MS YES Promo
Video sent by pjkproductions
Click Here To Download
We need your help! 30 second video of symptoms. Charity gig.


The format is quite simple, yet effective.

What I need from you is an upto 30 second video in comedic style one symptom of MS. I need as footage as I can get hold of. There must be two people in the video, one inflicting the, in some cases agony, or in other cases just curiously. In that upto 30 seconds there must be hardly any dialogue other than one person asking "MS?" and the person (Hopefully the Vlogger) answering "Yes!"

For example: Rachel is tying a rope around my waist tighter and tighter(This symptom is called Girdling(see above for details), she then leans forward and asks, "MS?" and I would answer in agony, "Yes!"

Remember this is only an example let your creativity run riot in this one, just have the dialogue be just ms yes.

In the flashmeeting that I set up a few weeks back Conrad Slater from spainful films offered to edit the whole project for us as he has the equipment to edit to broadcast quality, he is also a student and runs a vlog so if anybody else would like to offer editing skills you are quite welcome to apply.

As for the footage, ideally I need the footage to be in DV format for easy transfer into Premier or Final Cut Pro, the net version will be smaller for the obvious reason, but there is a chance I can get the whole show on Satelite TV, there is a small public access channel called Propeller TV which is on Sky channel 188 (I think).

So Clarity is key folks, remember this vlog may be seen by others outside the group or vlogsphere for that matter. Ultimately as well, the good people from the charity might want to host it on their website also.

Also watch the video above which we made to coincide with the making of the project.

I have built this blog to document the building of the project and I will give access to posting on it to those who have said yes. Please contribute as much information as you can.

For a full list of Symptoms, please click here for more information