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!