The Great NetXperiment!

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!

There has to be a million puns here about chickens, eggs and potential medicines to treat MS!

If the movie does not start (I have had some trouble with the player stalling) then click HERE to have it start in a stand alone player.

I know that I enjoy keeping this blog and supposedly it’s sole purpose is to make people aware of my fundraising effort at NetXperiment.com and to spread a little awareness about Multiple Sclerosis.

But why are YOU here? Did you follow a link? Were you interested in the subject matter? My sexy user picture? Followed a MyBlogLog link?

Please spend 1 minute adding a comment as to why you popped in and then I can return the favour.

You choose *laughs*

Actually I don’t think I could raise my arms up that high…so I say dancing (like no one is watching!)

This is my representation of me. Shame I couldn’t find where to change the hair colour…not that I think they have black with pink stripes like mine currently has.

A steady rise in autoimmune diseases such as multiple sclerosis (MS) has been noted in recent decades, and environmental factors could be the cause of this increase. One theory, similar to the “hygiene hypothesis” in which an excessively germ-free environment may contribute to an increase in allergies, holds that a decline in infectious diseases may play a role in increasing autoimmune disease incidence.

The first study examining the relationship between parasite infections and MS in humans suggests that such infections may affect the immune response in a way that alters the course of MS. The study was published in the January 2007 issue of Annals of Neurology, the official journal of the American Neurological Association.

Read the rest of the story here

This would solve 2 of my problems! If I could somehow get tapeworm (where do you “get” tapeworm) I could lose weight (and boy am I packing it on at the moment) and reduce potential flare ups.

I wonder what needle-phobic people would think

“it’s the needle or here swallow this worm!”

“um…umm, can I call a friend?”

If you would like to show your support for the NetXperiment cause and add one of these widgets to your site then please download your widget version here and away you go!
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See Allison’s brain
Think brain Think
Allison’s brain hurts
Why?

Yep that’s what my multiple sclerosis looks like. Kind of spotty and not very impressive compared to say MRIs of end stage Alzheimers, but hey it’s my brain and it is not often you get to see into a woman’s mind *wink*

If it is January 26th in your neck of the woods then it is Australia Day.

On Australia day Australians love to drink beer, get outside and watch strange sporting events like thong (flip flop) surfing or ferry racing. Then they will drink some more beer, have a BBQ, watch the Poms get thrashed in the cricket and drink some more beer. Wrestle a kangaroo or two*. Then they will watch some fireworks, drink beer and fall asleep in the hot hot evening.

*for non-Australian readers, this may, or may not, be true

I spent most of yesterday (that’s most of the bit I didn’t spend in bed) reading up on how to make changes to improve my cognitive powers. I have known with absolute certainty that it is possible to permanently change, through practice, attitude*, so why not other parts of your brain’s workings. A good thing too, because science in the last 10 years apparently has also come to this conclusion.

This week Time Magazine (US version) has a special on the brain. Very interesting it is too. I found this article quite informative about rewiring the brain.

The doctrine of the unchanging human brain has had profound ramifications. For one thing, it lowered expectations about the value of rehabilitation for adults who had suffered brain damage from a stroke or about the possibility of fixing the pathological wiring that underlies psychiatric diseases. And it implied that other brain-based fixities, such as the happiness set point that, according to a growing body of research, a person returns to after the deepest tragedy or the greatest joy, are nearly unalterable.

But research in the past few years has overthrown the dogma. In its place has come the realization that the adult brain retains impressive powers of “neuroplasticity”–the ability to change its structure and function in response to experience. These aren’t minor tweaks either. Something as basic as the function of the visual or auditory cortex can change as a result of a person’s experience of becoming deaf or blind at a young age. Even when the brain suffers a trauma late in life, it can rezone itself like a city in a frenzy of urban renewal. If a stroke knocks out, say, the neighborhood of motor cortex that moves the right arm, a new technique called constraint-induced movement therapy can coax next-door regions to take over the function of the damaged area. The brain can be rewired.

Yes i know that the articles themselves are popular science and that my neurologist would scoff at the simplistic nature of the discussions, but it did inspire me to work harder at getting back to where I was.

The video found here would also make my father very happy as he is an exercise enthusiast. If the implication of what is suggested in this video is true, then I better get myself more mobile and increase my brain volume. The more you have, the more you can rewire to.

And if I ever get all pity potting about the damage in my MRIs then remind me to watch this video again and see what shocking brain injury Sarah Scantlin has rewired.

So plan of attack on my brain. Get back to the gym and get into as much aquarobic type activity as I can. Keep reading learning and doing as much mental activity as I can (a bit tricky with the permanent headache I have,but not impossible) and maintain my fish intake, because I eat fish at least 5 times a week.

* I get very impatient with people saying “I can’t change, that’s just me”. Bullsh*t I say. I have done it! I would rather they be honest and say “I choose not to change”

eBay Australia: NBC TODAY Show 2006 8th Annual Signed Green Room Book (item 180077268759, end time 02-Feb-07 12:00:00 AEDST)

Throughout 2006, we at NBC News
“TODAY” have asked some of the notable guests visiting our studios in
New York and Washington, D.C. to sign an autograph book. The end result
is an interesting collection of signatures, notes, and doodles from
actors, singers, politicians and other newsmakers who have appeared on
“TODAY.” The eighth annual edition of this book contains over 400
signatures.

100% of the high bid for the “TODAY” 2006 Green Room Book Will Benefit The National Multiple Sclerosis Society.

Names of signatories http://media.kompolt.com/todayshow/grb07/grbsignature.html