The Great NetXperiment!

I think we can all learn a lesson from the rabbit (and not the voice on the video!). This is my NetXperiment inspriational video of the day.

The Good News -
Squidoo has accepted Foundation 5 Million as one of its approved charities!
The Complication -
The Foundation will need to set up its own PayPal account so that the funds can go directly into it rather than going through the one I set up.
The Bad News -
Things aren’t going smoothly for me healthwise and I am off to have an MRI on Tuesday. Which is a pain in the bum when I am trying to get things together and moving on the publicity for NetXperiment *growls*

Description: Here is the official info for our first show of the year. It is Saturday January 20th 2007, at Logan Square Auditorium, All Ages, and 21+ to drink.

We will have some fun surprises up our sleeves, a little piglet will come out to play, special guest guitarist Jason Knotek (PIG - In Winter) will be performing with us. This is a Multiple Sclerosis Benefit Show; all proceeds go to local music supporter and friend Jennifer Guest.

The tickets are $10.00 at the door, $8.00 online advance. Doors open at 6:00 P.M. Digital Mindy will be headlining again and other bands include; Shades of Fiction (www.myspace.com/shadesoffiction.com) On The Front (www.myspace.com/onthefront.com) Beneathme (www.benathme.com) Inn Cinema (www.myspace.com/inncinema.com) Janus (www.janusmusic.com) Make sure you come out, support a good cause, have a good time, and see where the New Year is going to take us all! For more info on Multiple Sclerosis, go to www.NationalMSsociety.org www.logansquareauditorium.com (online ticket sales)

Probably not. It certainly wasn’t something that had crossed my mind before I was diagnosed…and I don’t think about having various illnesses now….but for the curious here is a site that can mimic a couple of the many symptoms of MS.

MS Simulator

Have Fun!

If I had been diagnosed when I first became symptomatic? Yes it would have, and a negative one at that.

It is only recently that somwhat effective treatments have become available. It is only recently that the extent of the disease and the growing number of young people being diagnosed has led to specialist and specific centres for treatment for them. Thank goodness there is this growing recognition and the ability to do something about it too.

If I had been diagnosed 25 years ago, I would have been given the diagnosis, told there was nothing much that could be done, and left to my own (or my parent’s devices). I think that would have been more destructive than the baffled Doctors thinking I was some kind of hypochondriac.

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I remember when the first weird things started to happen I was an athlete and at one of the track meetings Betty Cuthbert came to present some of the medals. I remember people commenting on how sad it was that this woman who had won 4 Olympic Gold medals (and did what no one else has done by winning the 100, 200 and 400m) was now confined to a wheelchair because of her MS.

From the outside looking in I agreed.

But now on the inside looking at that same scene, I will quote Betty’s words back

“I’d love to be able to walk and run and all that. But I don’t think about it. I don’t concentrate on things I can’t do. I do what I can do. “

For a present for a friend when I popped in Multiple Sclerosis to the search for all products ( I usually only look in the books part). I was very suprised to see all sorts of things come up…some have NOTHING to do with MS at all from what I can see. but I thought I would display a few here to help NetXperiment get some funds from outside of the website.

Item 1

Here in Australia this would be very welcome! At the moment it is the middle of summer here and we have had some very hot days. I think I will be ordering one of these to put on when I get in the car.

item 2

Same but for the head…

Item 3

OK with my weird sense of humour this made me laugh. I am sure it is a great read but it tickled me that this had been written!

Item 4

Got to throw in the big names! If they can do it then so can we.

What’s it like being a medical student with multiple sclerosis?

Jenna Louise Duffy shares her experiences.

Why is it that when sometimes your life seems to be running smoothly, and you have so many plans of how you would like your life to be, something bad happens?”Jenna, you’re not a child anymore now: you’re 16 going on 17, and I think you are at the age where you can deal with certain things…” “Blah, blah, blah,” I thought as my consultant droned on with the same dreary comments, and I stared out of the hospital window.

These appointments were becoming a bit tedious. It was like having déjà vu. I stared out of the window. I kept thinking how excited I was about my plans for the weekend. My exams were approaching, and I just wanted to relax and have fun with my friends. My parents and I had come in for my routine appointment at the University of Wales College of Medicine. I had been called in for my appointment 10 minutes early, so my father was still outside parking the car. I had been unwell with “unusual symptoms” at 14 years old.

Magnetic resonance imaging and lumbar puncture had confirmed lesions on my brain. The doctors suspected a virus or just a one-off illness that could not be explained. I therefore had to attend appointments every six months “to keep an eye on” me. I was never given a diagnosis.Since then I had been free of symptoms. The initial symptoms of vertigo and optic neuritis I had had at that age had disappeared about four months after they started.

That is, until two months before my routine check-up at 16 years old. I had been worried about my AS levels, and trying to complete my application form for university so that it was perfect. My dream from 14 years old was to be a doctor. I knew I would have to make a good impression.

One weekend while I was revising I began to feel tremendous throbbing pains in the soles of my feet. I put it down to wearing ill fitting shoes. Two days later, the pain had been replaced with numbness and tingling that had now risen to my knees. My parents were concerned. Each day the numbness rose up my limbs, until one morning I awoke in a panic and pool of sweat because I thought my legs had disappeared.

The numbness had risen to the umbilical level. The embarrassment and anxiety of not being able to feel my feet in my shoes and feeling that my trousers had fallen down was really getting me down. It would send me into panic, frantically checking they were still there, no matter where I was, and who was watching. I continued the week as if I was in perfect health, stubbornly ignoring this problem as though it would disappear.It took days to get even an emergency appointment, but after a while I visited my general practitioner.

He referred me immediately to the paediatric consultant I have visited since age 14. Because my routine appointment with him was close anyway, the consultant felt no need for an emergency appointment. Even though everyone around me was worried, I felt as I did aged 14. I was naive, not at all concerned about what was wrong with me. I was in a daze, on a cloud where no one could touch me. It is hard to explain how you can feel totally oblivious to what is happening to you, even when you know it is serious. It is almost as if your brain switches off to all the negativity of the world and then drugs you with a happy pill to enable you to cope.It was in this state of enlightenment that I received my shock.

Read the rest here

The last couple of nights have seen my partner and I out on a high spot near where we live checking out the latest, and brightest, wanderer into our view. Comet McNaught (yay for Coonanbarabran astronomers) has been very visible just after dark, but alas low cloud over the Blue Mountains has meant that seeing it actually “set” has not been possible.

But fear not, here is a movie we took tonight of the comet for those that have missed it.

The tools used were a pair of 12 x 80 binoculars on a tripod and a Sanyo Xacti CA6 digital video camera. ANd for all you visitors to this blog to see this, please head on over to my MS donation page, the Great NetXperiment to contribute to finding a cure, and cause for this baffling disease.

Things have been on the back burner a little for NetXperiment as some health issues cropped up that needed investigating. As per the title, it has been confirmed that I don’t have a brain tumour. *cheers*. I do hope the headaches etc go away as I am a grouchy grouch at the moment after the weeks of “discomfort”.

So on with the blogging and back to the fundraising!

You can tell from my blog, I like video-type information clips (saves having to have an attention span that can last 2-3 pages of text online…do you have problems reading large amounts of text on a computer screen? I know I do…maybe the newer generations won’t). So here is a clip that I found on a myspace page (caution: has some loud music embedded on his page) . I know I have seen it before somewhere, but as the clip is not attributed I can’t do much more than link to the source. If you know where this was from originally please add a comment! Good for explaining to kids or others what MS actually is.

Here is a post I put on a forum I frequent this morning. Rather than rewrite it, I thought I would just quote it here.

As you may have seen from one of my posts I have recently been quite sick. In fact I still am. But as I have come to accept, this is probably a new phase of my MS. A phase that may mean I have to rethink whether I can work again in a “normal” capacity. Or whether I can go shopping again in a “normal” capacity, or drive long distances again….which I love doing. Etc …normal for me might be gone.

This deterioration is not unusual for people with MS. One day you are fine and the next you can wake up and be blind, or in a wheelchair or, as is my case, a virtually housebound recluse because sensory input is scrambling your cognitive system causing you to become totally overwhelmed.

Now the blind and the wheelchair stuff, because it is caused by the demyelination of nerves to the extremities, can get “better”. You don’t come back to being 100% better, but you get used to the damage and you compensate and 90% better is Ok, then 85% etc etc. I have been in a wheelchair; I can walk now, so yeah, just a small demonstration of one we prepared earlier. But your brain, well bring on the stem cell therapies coming into practice ASAP so I can get my missing nerves and connections back please. In the meantime I am hoping that my brain is limber enough to make alternative routing and detours to get round whatever is busted currently.

Believe it or not, research has only started in the last 20 years into the effects of MS on the brain and cognitive function. What was thought to be environmental (well of course you are depressed you have MS, who wouldn’t be depressed!) has been shown to be physical (well of course you are overly emotional and appear depressed, your brain nerves and connections have been destroyed in that area).

My sister asked me last night if I had prepared myself for what may happen by writing down what I want to pass on. I laughed it off when she said it, but I am crying as I write this, because I may have to do just that. I might be going, going as you know me, going as I know myself. I think I know how early Alzheimer’s patients feel.

I don’t like talking about the tough stuff with MS. The tough stuff is the stuff that is personal to me. In creating NetXperiment I was hoping to separate my experience from the whole shebang by just mentioning that I have MS and leave it at that. But it seems that is not to be. I am not playing the sympathy card here. This is just passing on some awareness of what this is like, and is only a small amount of what I feel. In words it looks very clinical and easy to digest. Believe me when I say I would swap this for being in a wheelchair right now.

So now I turn to you guys, and again ask for help getting http://www.NetXperiment.com going. This is personal now, before I was doing it for all people with MS but that didn’t include ME because I was FINE, but now it is for all people with MS, including me .

This is where I ask you to do the hard yards and approach everyone you know who owns a business, or your employer, and ask them to contribute. We need to get the momentum going again, and I have been too sick (and I am probably still too sick) to continue to motivate on a minute to minute basis.

NetXperiment needs only one big break. Whether a company chooses to get their name out there by making a single contribution or they choose to tie a product or product launch with a percentage of sales to the cause, or whatever. We all know and have acknowledged that we know the idea is a goer; we just need to keep on pushing.

So please, if you have read this far, add a comment to the post. Add an idea, or tell everyone what you will be doing. Communication and excitement (and this is a bit of a downer post) is infectious!