Letter to Senators and New Brunswick MPs

This is the message I just sent to our politicians:

My name is Ted Robak.  I live in New Brunswick where I was diagnosed with multiple sclerosis in 2004.  My physical condition had started to deteriorate rapidly to the point where, in the summer of 2009, most of my thoughts were about how the things I was still (barely) doing were probably the last time I would be doing them.  I was also resigned to the likelihood that I would soon have to stop working.  Then, upon returning from what we thought would be our last overseas trip together, my wife and found that we had been inundated with messages from people suggesting we watch the W5 program on CCSVI and its treatment.  After researching the theory, I decided to apply to be tested and treated for CCSVI in Poland, since there were no opportunities to even be tested in Canada at the time.  I was tested and treated at the end of April 2010, where they used angioplasty on my right jugular and placed a stent over a faulty valve in my left jugular vein.  I experienced the following improvements to my health as a result of that treatment:

• Fatigue: Before treatment, I would have to nap as often as four times a day.  I got tired just thinking about going to work or doing any kind of activity.  Now all that has disappeared.  I can work all day and rarely take a nap.
• Balance: My deteriorating mobility was due to my left side weakness, foot-drop, and my lack of balance.  While the other symptoms remain generally unchanged, my balance has improved dramatically, giving me significantly more mobility.
• Bladder function: This has improved greatly to the point that I no longer have to take medication for it.
• Strength: Though my left-side weakness (leg and hand) remains generally unchanged, that can be considered a good thing considering how quickly things were deteriorating before treatment.  That I did not see dramatic improvement in this regard is hardly surprising, since CCSVI treatment is not likely to undo existing neurological damage.

Since my treatment 15 months ago, I have had two follow-up tests, in Barrie, Ontario (September, 2010) and then Bangor, Maine (June, 2011).  In my last follow-up, it was seen that some of my blood-flow problems have returned, which is worrying since there is, as of yet, no treatment for CCSVI in Canada.  I hope I don’t start losing my new-found stamina and other improvements that have hugely changed my ability to be productive and enjoy life.  Since I was treated, my wife and I have stopped talking about all the things we’ll be doing for the last time, and I hope that we won’t be going back to a situation of relentlessly diminishing possibilities again.

All Canadians should have the opportunity to have their veins unobstructed, and their blood flowing freely.  We shouldn’t have to go overseas for this. 

Please support Senate Bill S-204. Clinical trials may not help me, but they should provide the information for future CCSVI sufferers.  What will help me and tens of thousands of Canadians right now is to allow MS sufferers to have recognized blood-flow problems to be treated in Canada, not turned away simply because they are MS patients.