29 November 2013

Ho! Ho! Ho! And a Merry SCI

Ho! Ho! Ho! And a Merry SCI

Well my friends, I want to let you know that paralysis has not failed me this year either.

I'm back in the hospital with a new gift from spinal cord injury, an infected pressure sore. Never though I'd get such a bad pressure sore as I try to take care of such things, but I guess spinal cord injury wanted to make sure that I tasted as many secondary issues as possible.

There are some, who after a disability injury or illness, talk about how it has made them a better person. Well, there's nothing I can do except believe what they have to say and keep waiting for it to make me a better person, too.

While I'm waiting for that better person to explode from my loins, I'd like to list up what SCI has brought me for Christmas.

Christmas 2009: at the rehab hospital after I was left crippled from a bleed in my spinal cord.

Christmas 2010: luckily I made it out before Christmas that year even though I had a second operation for an arachnoid cyst.

Christmas 2011: at the rehab hospital after an operation for syringomyelia.

Christmas 2012: my kids got to enjoy having their father around for the second Christmas since paralysis.

Christmas 2013: the kids thought I'd definitely be home for the holidays, but unlucky us. My new infected pressure sore will keep in the hospital over the holidays.

I know that there are those who've had it worse, but the point is to make sure this horror doesn't happen to others, and not compete about who's had it worse. It's a terrible thing regardless of how you slice or dice it.

So, let's stop talking about how SCI can make us better. Let's make others understand how SCI robs not only our lives but the lives of those around us. Let's hope for future Christmases without paralysis.

Dennis Tesolat
BlackBerry from DOCOMO

28 November 2013

The $5 "Cure Videos" Challenge

Many of you know the group Unite2FightParalysis (www.U2FP.org) and the wonderful yearly conference they put on called Working2Walk (www.W2W.org).

There are many like myself who would love to attend and hear the exciting presentations made by scientists and activists in the fight to cure paralysis. Well, flying from Japan, booking a hotel, and all the costs associated with out country, or even out of city travel, doesn't fit into my budget.

But does U2FP leave me or you out just because we can't afford the time or money? No, they make sure that the presentation are available to ALL of us for free on the internet.

Click here to watch the videos. You'll be asked to log into your account and you'll get a password for the videos. If you don't have an account, you can log in through your facebook or twitter account, or create a new login. Whichever way you do it, you'll get a password which you can use. 

 Although they make it free to watch, it's not free for U2FP. I have learned that making the videos available to us for free costs them about $5000 for the videographer and then many many hours in volunteer time to get them ready for the final upload and editing. So I'd like to make all the video presentation viewers out there a simple, cheap challenge. From now on, every time I watch a 2013 video (the first time) I'm going to donate five bucks, and I want you to do the same. There is a donate link on all the videos which you can access after registering to view (registering doesn't oblige you to donate). You can support U2FP and their work to find a cure for spinal cord injury for as little as $5, and supporting cure is a lot better than any of the other things you can buy for a fiver. Of course, if you think that $5 at a time is a pain, please feel free just to make a larger, one off donation. 

Hope you take the challenge!

18 November 2013

Part II: The International Association for the Advancement of Creative Maladjustment"

This is the second posting of this below post and it's one of my favourites.
It came back to me tonight after I discovered a second high fever in as many months. This is just after having to be in bed three weeks due to a pressure sore. I have no cold symptoms so I know that it's an infection in my paralysed body.
Don't ever let anyonr tell you that we can adjust ourselves to paralysis. It's a lie. Regardless how much we try, paralysis was never meant to be adjusted to by the human body.
Enjoy the repost and I hope you'll join me!
As a trade unionist and socialist these words by Martin Luther King always rang true to me.
"I never intend to adjust myself to segregation and discrimination. I never intend to become adjusted to religious bigotry. I never intend to adjust myself to economic conditions that will take necessities from the many to give luxuries to the few. I never intend to adjust myself to the madness of militarism and the self defeating effects of physical violence."

And I guess now that I am a new paraplegic these words ring even truer.
After listening to this after a long time, two recent blog posts came to mind.
One was an imaginary conversation I had at my 'Spinal-Cord-Injury-group-therapy' with my counselor.
Counselor: "If you don't accept your lot in life, you will never adjust."
Dennis: "I'm not really interested in adjusting to this life. I'd rather fight for the cure. Not just because I want one, but because it's possible."
Counselor: "Then you my friend are maladjusted and you get an F in group."

And the other was a blog post written by a friend and how he was labeled as: "An example of a person who has not reintegrated into society after a spinal cord injury." Basically he was called a maladjusted, too.
In the year 2011 is it right that we are still trying to adjust ourselves to paralysis when we have excellent results in animal studies and clinical trials in progress to cure paralysis? Actually, the thinking that we should adjust is what is stopping the cure.
I appreciate all the work done by those before us, who have struggled for better accessibility, chances at employment, etc, but as long as we continue to think in 2011 that paralysis is something that you adjust yourself to, the further we will be away from a cure.
The image of the 'happy roller' rolling through a successful life in the chair, is a myth.
For every successful businessman or career woman in a chair, there are countless more unemployed. According to a 2002 study, the unemployment rate in America for those with spinal cord injury was 63%. And to this I never intend to adjust myself.
For every happy person living a carefree life in the chair, there are countless suicides. The rate of suicide in the spinal cord injured community has been evaluated as high as five times greater than those without disability. And this I never intend to adjust myself to.
For every person living a long life in the chair, there are thousands who die prematurely due to complications stemming from their spinal cord injury. A 2009 study stated that life expectancies, "are still somewhat below life expectancies for those with no spinal cord injury." I never intend to adjust myself to a lower life expectancy than others.
For every person in a wheelchair enjoying greater accessibility in our communities, there are countless numbers of others who are confined to their homes due to poverty, pain, or vent dependence to whom ramps are meaningless. And to this too, I never intend to adjust myself.
If refusing to give up hope for a cure, when evidence supports it, is to be labeled maladjusted, then I too am a maladjusted and I'll throw my hat into the ring of "The International Association for the Advancement of Creative Maladjustment".
Dennis Tesolat
BlackBerry from DOCOMO

14 November 2013

A cure for SCI by the Christopher Reeve organisation?!?!

I wrote a blog post a year or so ago called 'A cure for spinal cord injury will not be announced on this site'.

Apparently, it should have been called 'A Cure for SCI will BE announced by the Christopher and Dana Reeve Foundation (CDRF) on my blackberry'.

Just a few minutes ago I received an email from CDRF telling me that they are now, "Succesfully getting people out of their wheelchairs right now. Today, it really is a reality."

Right after that the little red blackberry light lit up with emails from my blog followers. There were two groups. One that wrote to tell me how great this is, and the second group who were pissed off that CDRF could even state something like this.


Yesterday I was crippled and 'right now' I can get out of my wheelchair. What a load of crap aimed entirely at fundraising.

First they get Christopher Reeve's kids to state that CDRF's NeuroRecoveryNetwork (NRN) using epidural stimulation is the thing that Mr. Reeve would have been most proud of and then they link it to "getting people out of wheelchairs".

Most importantly, the NRN is not getting people out of their wheelchairs with all the implications this means; secondly, how do we know what a dead man thinks?

Of all the hype, false hope, and unabashed fundraising, this one takes the cake. Not only will people be fooled by this false announcement, they will feel let down when they realise that it's not true. This is the worst disservice of all.

I know what they'll say to spin it. They're going to say that it ONLY means people standing up, from time to time, on their own. And that it means people may be stepping, but this is NOT 'getting people out of their wheelchairs'. The vast majority will take this statement to mean CURE - permanently out of their wheelchairs. Why? Because the biggest SCI injury foundation on earth has declared it.

This false hope to raise donations, and using Christopher Reeve's kids to do it, is the worst display at a money grab that I've ever seen in the CURE communuity.

I won't argue with them about the benefit of NRN on the paralysed body, but it is NOT 'getting people out of wheelchairs'.

So before I comment any further, I will ask the CEO of CDRF to comment on this claim. If they are truly 'getting people out of wheelchairs', I'll eat my hat and kiss CDRF's CEO on the lips in Macy's window.

Dennis Tesolat
BlackBerry from DOCOMO

11 November 2013

A cure for chronic paralysis in Canada - we need YOU!

I think we've come a long way from writing questions to the Rick Hansen Foundation about chronic cure spending and getting no answers. I believe that we have finally put cure for CHRONICS on the agenda.

How many remember the first campaign back in 2011? One hundred names and no answer about cure spending. We took a lot of heat from some people about questioning RHF's commitment in dollars and science (not words) to a cure for chronic spinal cord injury, but in the end, a lot of these good people added their names to our last public campaign in mid 2012 to get us up to almost 800 names.

This blog isn't a trip down memory lane; it's to congratulate YOU for your perseverence because it finally looks like the times are a changing.

We have started talking to the Rick Hansen Institute (this body is the translational research arm) again and maybe their announcements have some good news for us, that may never have happened if YOU hadn't kept sending in your names and demanding a focus on paralysis cure, especially for those of in a chair right now.

1. RHI has set up an actual CURE committee. This will be comprised of researchers (still waiting on the names) and will be headed by Brian Kwon. I like Dr. Kwon because what I see in this video where the presenter tells us how Brian Kwon convinced her that chronic spinal cord models need to be used in research. Chronic, that's all of us who sit in our chairs right now. This is the first time we've seen a clear committee established inside of RHI to deal clearly with cure. 
The cure committee has already met once and we wait to see what they did in their meeting.
We've also asked for a chance to speak with Dr. Kwon and we hope that there will be good news to share with you in the future.

2. A Consumer Advisory Board will also be established. Consumer, that's us, people in chairs. The whole Board won't be cure focused, but we need to make sure that cure activists are involved. We need to make sure that when surveys get pulled out saying that we're not interested in cure, we can show them differently. 

We've now spoken with the people to be involved in the Consumer Advisory Board and we're waiting on some more information, especially on we can make sure that chronic cure activists are on this committee.

So, instead of just waiting around for RHI to cure us, we're going to remain, positive and proactive, following the pattern that has brought us success, and not waste our time debating those who think we haven't made any progress yet.

So, jump on in with both feet. Just like our past campaigns, only YOU can make this successful.
Fill in the form below to offer your suggestion for a name and if you're Canadian, to volunteer to help.