Letter to the Editor -
My name is Perry Goodyear of Grand Bank, NL and I have been diagnosed with multiple sclerosis (MS) since 2003 at the age of 30. Since that time I have lost my job as a mechanic that I thoroughly enjoyed and I miss my friends and owner in the workplace. The disease has been, and continues to be, very difficult on my young family, especially as it progresses to the point where I have very little mobility and strength. MS has forced me from a well-paying position to a disability pension from CPP, nowhere near my former income, and has caused our family considerable financial stress. MS has become an extra member of our family, and the disease is not welcome in our household anymore because it dictates your life and decisions and that is now unacceptable.
Since Dr. Zambonni discovered Chronic Cerebrospinal Venous Insufficiency (CCSVI), it has given all MS sufferers hope of a healthier lifestyle and future.
The procedure to identify CCSVI is a simple Doppler ultrasound which can be done in Newfoundland and Labrador, and there are qualified surgeons in this province who can deliver this service.
I cannot understand why our government and doctors refuse to recommend MS patients for this simple procedure when so many people may benefit from this ultrasound. Their position is that surgery to correct CCSVI is not yet proven. However, this appears to be a major breakthrough; so why not give it a chance, what are the alternatives? I have heard that health officials are reluctant to have ultrasounds done because it will block waiting rooms and clinics. Government and health officials did not care about blocking waiting rooms, schools, or any other buildings when citizens were vaccinated for the swine flu, and rightly so. However, the same urgency should be applied to those of us suffering from MS as well, and give us an opportunity and hope for a better tomorrow.
CCSVI is a narrowing of the veins and/or blockages in the neck which impedes the removal of iron deposits, which are not taken away from the brain and circulated throughout the body, which is the normal process. This causes damage to the brain, and if not treated, can lead to deterioration of motor skills and even death. There may be other reasons why doctors are not referring their MS patients for this ultrasound, however, crowded waiting rooms and a new procedure should not be two of those reasons.
The procedure in question has been done on those not afflicted with MS, but for other medical reasons. Are those of us diagnosed with MS being discriminated against just because we have this disease? In other parts of Canada the ultrasound is available to those with MS. In a 'have' province like Newfoundland and Labrador, why can't government and the Department of Health offer the same service? Every day is a challenge for those of us with MS and we need some hope and understanding. Even if surgery to correct CCSVI is not 100 per cent effective, it can probably stabilize the disease and prevent it from getting worse. Where I have primary progressive MS, my body is declining very rapidly, I have problems swallowing my food, shortness of breath, unable to cough, and experience too much pain to sleep. Wouldn't everyone want an opportunity for a better quality of life if there was some hope?
I'm not sure how much longer I can wait for this medical procedure. I'm fighting everyday to stay out of the Long Care Home in my community. I now have home care, and trying my best to buy as much time as I can in hopes that the medical community will give this new procedure and me a chance. There are approximately 1,100 people in NL with MS who suffer greatly along with their families and friends, and we are hoping those in authority understand our fight, and do their best to ease our pain and suffering, we deserve nothing less.
Grand Bank, NL