Well it's been quite some time since my last blog but a busy summer will do that. Many people have been waiting for an update on my condition post angioplasty and I get asked the question so much that it’s become somewhat tiresome. I suppose that is to be expected and people are genuinely interested in my results but there really hasn’t been much to report. The initial improvements I had with my eye pain and the diminished buzzing sensations have maintained so I’m very happy about that. In addition to this, I am now able to sleep much better! Before my treatment I usually woke up by 6 a.m. no matter what I tried but I could rarely sleep in which was frustrating and not good for me! Even if I stayed up past midnight or one in the morning, my automatic wake up still kicked in and I could not usually fall back asleep. Since returning in July I can now sleep until 9 o’clock or later which is allowing me to get a much better rest which is likely the reason that I don’t feel so tired and wiped out by mid afternoon. I have been feeling more energy allowing me to accomplish much more in a typical day and muster up the motivation to get my butt moving. For example, I have recently joined Gold’s gym and begun a workout routine three days a week. In the previous 6 months or even the last year, there was absolutely no energy to consider working out and so I haven’t really done anything for over a year. As it is with almost anyone, finding the motivation to drag myself into the gym three times a week is still a challenge but for the most part I’m doing it! Even though I’ve got a long way to go to regain the strength I had a year ago, I can already see some improvement. I used to work out with my own equipment in my basement but since moving I don’t have the equipment set up and I do find it more beneficial going to an actual gym. First of all I now get more of a cardio workout because I ride the bike which I never had access to before. I also never worked my legs because I didn’t have any equipment for leg exercises but I now do leg press, extensions, hamstring curls etc. and now realize how beneficial strengthening my leg muscles will be. The couches at my house all have the lazy boy type of foot rests that kick out and I can’t remember when I could last close them up without pushing it back in with my arms. Lately I can actually bend my knees and close it up the way it was meant to work, like a normal able bodied person. This may not sound like a big deal but to me it is a noticeable improvement and a motivator to continue exercising!
Unfortunately I have not experienced remarkable improvements as some have reported but then again I didn’t really expect to. My mobility has not really gotten any better but it has definitely not gotten worse and this is key! Time will tell if disease progression has been halted but the angioplasty appears to have been successful, I am feeling better and can honestly say that my quality of life has improved. Any improvements that I’ve had will still be considered anecdotal but that’s fine with me. There is plenty of evidence that is not anecdotal and can not be attributed to the placebo effect. When someone who previously did not have the balance, strength, energy or coordination to walk unassisted can now throw the cane away and walk or even jog and appear completely normal, the placebo effect is no longer a reasonable explanation! I belong to CCSVICalgary.org which is a local organization formed to advocate for testing and treatment and is a great vehicle for building exposure and lobbying the government and health authorities. This last Saturday we held a 10 km run and fundraising barbeque. One of our members Liz Simenik has received national news coverage on her amazing improvements post angioplasty and completed the 10 km run which would not have been conceivable only a few months ago. I participated in the run but of course had to use my scooter; the event was covered by Global News and was a great success. There are many more examples of remarkable angioplasty results within the organization such as Ginger Macqueen who’s CCSVI story has been followed by CBC. She went to Poland for her treatment and CBC was at our last meeting doing a follow up to her story which should air on the National in the next week or so. They also interviewed me so I’ll have another television experience but who knows what they’ll include in the story but the point is that our cause is gaining traction and public awareness. There is still a long fight ahead of us but it’s something I’m happy to spend my time on!
My other passion that has consumed most of my summer is my children. I’ve been fortunate to have had them at my house most of the summer and I can’t believe school is about to start, time goes by so fast! It’s now been over two months since my angioplasty so my six month goal to be retested will come up on me fast. It will be interesting to see what kind of fight I’ll encounter to be retested and confirm that my blood is still flowing properly. Even though I had to leave the country for my procedure, I believe it is my right and Alberta Health’s responsibility to provide follow up for a medical procedure required to treat significant jugular vein stenosis. The procedure was documented as required to relieve symptoms related to venous congestion and had nothing to do with multiple sclerosis. I can feel the fight brewing already which is why the work we are doing through CCSVI Calgary as well as many similar organizations is so important.
On another note, I had another MRI in August which identified multiple white matter lesions again but the dominant enhancing lesion on my left thalamus has diminished. Although a small amount of residual enhancement remains present, no additional abnormal enhancing lesions were identified. Simply put, the progression has stabilized and this is very good news! Whether any of this can be attributed to proper blood flow from my brain over the last two months will remain unknown but as long as the disease is not progressing, I’m happy! Now time will tell whether the progression has been halted and if I can experience additional improvements. I will continue to exercise strengthening my muscles, especially focusing again on my core stabilizing muscles and hopefully I’ll continue to improve.
Now that school has started I should have more time to pursue writing so hopefully my blogs will become more frequent again. As things progress in the world of CCSVI, I’ll attempt to keep my blog up to date and informative about new developments.