22 May 2013

One of these days...POW! Right in the target point.

Ever tried eating cereal like this?
Mixing Jackie Gleason and science. Do people still know who Gleason is?

Trigger points? 

From what I can figure, it's a pain in one point that causes a pain somewhere else, and that's the pain in my hip that I have often wrote about.

When you get told over and over that it's just neuropathic pain (a pain that comes from the damage to the central nervous system), you start to give up on trying to find the reason.

How did I figure this out? Well, one day I went to rehab with a pain in my back and ribs that was terrible. This pain had always been there from the day after my third operation, but was never as bad as my hip pain so I put it lower on the priority list. This hip pain was also interesting because everytime I raised my hand to my mouth, the hip pain was crazy.

Have you ever seen American movies where the prisoner's handcuffed wrists are shackled to his leg irons? The only way he can smoke is by moving his mouth to his half raised hands. This was me!

I guess you could say that it's another good reason to quit smoking, but eating cereal was also a challenge.

Anyhow, back to my physical therapist at rehab. He started massaging the pain in my back and found a massive knot of muscle which led to more tight muscles all around it. When he was done, the pain in my hip also felt a whole lot better.

My conclusion, I guess since the pain started immediately after my operation, is that having to reach my spinal cord and having to push the muscles around, some damage must have taken place. I don't blame the surgeon for this. It wasn't like he walked in drunk with a cigarette dangling from his lips laughing a crazy laugh, but I do wish he would have listened more and drawn a conclusion about what happened rather having me live a year and a half in hell.

Now I'm going for massage regularly and even hope that the burning and spasticity in my legs will also improve from the massage as this also got worse the day after the operation and could be a reaction to pain in the absence of any feeling.

I am feeling much better.

So what does this have to do with a cure for paralysis? Loads!

Cure activists are constantly labelled as ANTI care. You know, "if you can't cure us, kill us" Jack Kevorkian types. Well, I'll tell you that it's a false accusation and the only reason it's used is to try to drive a false wedge between people. The goal is often to make cure activists sound like they're not interested in anything if it's not cure.

Well, as a paraplegic, the only reason I'm alive now is because care has improved. Better standards in care also have made sure that something like a urinary tract infection hasn't killed me either, and the massage on my trigger point has already improved my quality of life a hundred fold.

We're in favour of cure for two reasons. One is that no amount of care can deal with all the secondary issues that we live with and two, because science is proving it possible. Therefore we do demand that cure money at least matches care money in the hear and now. Not supporting cure would be like supporting a constant bandaid as opposed to fixing what is causing the need for the bandaid in the first place if it were possible.

So the next person who accuses me of being anti-care will get it...POW! Right in the trigger point.

11 May 2013

Still time to register your support for the California Cure


Over 300 people have emailed and faxed their support for Roman's Law (AB714) for $2 million annually in spending on a cure for spinal cord injury and other forms of paralysis.

The bill has been already passed in one committee and is now in front of the powerful Assembly Appropriations Committee. We thought that they would vote on 1 May, but it's been put off till 24 May.

This gives you a chance to send your fax (free and online) or email to this committee and stand up for cure so someday everyone can.

This campaign is now closed. Thanks for all the support.

06 May 2013

Email to support the Regenerative Medicine Promotion Act of 2013

Members of the Alliance for Regenerative Medicine (ARM) will be on Capitol Hill on 8 May advocating for the Regenerative Medicine Promotion Act of 2013.  We will be running this campaign to back them up for a few days only!

Unite 2 Fight Paralysis along with more than 120 other members support the work of ARM and ask you to join them in supporting their efforts on Capitol Hill. An overview of their mission to promote research and commercial development of regenerative medicine (RM) products is provided on their website.   


1. Add your name to our petition using the form below to Senators Mark Kirk (IL), Rob Portman (OH), and Orrin hatch (UT). And to the following members of the House of Representatives: Erik Paulsen (MN), Pat Meehan (PA), Ed Whitfield (KY), Michael Burgess (TX), Joe Pitts (PA) and ask them to support this important bill. Your name, country, state, and city will then be added on our list to be present.

2. After you send the email, you will be redirected to a site to find and write to your own legislator and also ask them to support this bill. You don't have to do this part, but we sure hope you do.

We can't all be there to help in their efforts but we can work together to inspire some legislators to support this bill. Share with them that people around the world look to them for leadership in this very important matter. Supporting this bill promotes therapies for diseases and conditions which will lower health care costs and provide a better quality of life to people suffering from devastating illnesses and injuries. 

This campaign is now closed. Thank you for all your support.

05 May 2013

A cure for my paralysed teeth

I've wanted to write this post for sometime, but didn't know how to write it. I was a little concerned that maybe folks would treat it like a nice little story and then forget about it.

Anyhow what I'm going to do is write and then you can decide if it's just another thing that I'm complaining about OR if helps you see how paralysis affects everything in my life, including my teeth.

I'm sure you know that my teeth themselves are not actually paralyzed. I can bite and chew just like a normal person. About two months ago I realised that the molar way at the back of my mouth, maybe a wisdom tooth, was lose.

I am terrified of the dentist (OK, call me a chicken) and the first thing that came to mind was not my tooth, but how I felt that I should at least catch a break on small things (the scary dentist) since I already have to live with paralysis. It's a crazy idea that if we have a big problem we should be let off the hook for life's other health concerns, but it's exactly what I thought.

Well, this is not the connection between my lose molar and paralysis and I bet that if I don't tell you the connection you'll never get it.

OK, first you think of the connection for a second and then read on and be honest about whether you got it by yourself.

The good news is that the tooth is not rotten as it doesn't actually hurt so much and isn't affected by cold drinks. I realised just the other day why it's lose.

What's the first thing you do when you get a sudden sharp pain somewhere in your body? That's right, you clench your teeth. So in this case me and and an able bodied person are the same.

The difference is this; while an able bodied person may have to clench their teeth due to harsh pain a couple of time a year, I have at least 50 incidents of shooting pain every day. I guess you can see the different impact on our teeth.

Most able bodied folks don't see pain as a part of paralysis, they only see lack of movement and lack of feeling. The lack of feeling part often leads people to think there is no pain. You can understand this. No feeling equals no pain. Makes sense, but neuropathic pain, doesn't make sense.

I don't know how I can describe the sudden pains that I get in my hips which cause me to clench my teeth (the burning in my legs doesn't cause teeth clenching because it's not sudden, but constant). I guess the only way that I can explain it to you is to imagine a spinning drill boring into your hips, removed, and then reinserted a few times. I think you can maybe imagine the pain. Or, keeping on our teeth conversation, it's like when the dentist is drilling (with no freezing) and he hits a nerve. Think about that pain fifty times a day.
I hope this helps you understand about another reason we fight for cure. If it was just about lack of movement I could see how many able bodied people wouldn't understand as they see that we have chairs which give us some degree of freedom (if you can actually move the chair yourself).

So, when we ask you to write and email and fax and talk to your friends about cure and you think that you're too busy, remember that drill hitting your hips or that nerve and you'll see why sometime being pushy about cure is important!

01 May 2013

May Day

My May Day messages have always been filled with hope and this year is no different.

The international effort to cure paralysis is going ahead, but after three operations I hope you'll let me digress a little and talk about what spinal cord injury (SCI) has stolen from me.

One is May Day.

For many many years I was the one who got our troops together and took them over to the parade ground. I loved it.

That's not the case three surgeries later. Now I'm left with pain and fatigue and I don't know which is worse.

So this year I will let my colleague deal with May Day, but I know that I will lead my union's contingent at May Day in the future.

This is my hope for international solidarity.