Saturday, March 28, 2009

SO THAT’S WHAT IT’S LIKE...

I recently took my children roller skating, when I say took them I mean drove them to the facility because of course I can’t roller skate. Anyone reading this blog who is from Calgary will likely remember Lloyd’s Roller Rink, what a blast from the past! I can recall spending many afternoons there when I was younger, maybe 13 or 14 years old and the place hasn’t changed. Some people now use inline skates or rollerblades instead of the larger heavier four wheel skates but other than new music, everything is the same. It was like entering a time warp, the strobe lights, flashing coloured lights and mirror disco ball brought me back twenty five years. We were attending a birthday party along with at least 5 other birthday celebrations; I was completely surprised at how busy the place was. As it turns out Lloyds has been there for over 40 years, kind of puts time into perspective.
So you may be wondering why I’m writing about roller skating, well I made some very interesting observations. Most of the people I saw were not very good whether they be young or old and it was almost comical watching people try to stay on their feet and off their butt. What I noticed was that many people experienced the same difficulties with balance and trying to move around that I go through just trying to walk. There was the stumble factor, it’s difficult to pick up your feet like you do when you’re walking so trying to manoeuvre around the very crowded concourse was very difficult for some and I witnessed many people trip over a shoe or coat lying on the floor. Then there’s the problem with balance, if there was no wall or railing for support it was very hard for some people to stay on their feet and skating around the rink wasn’t possible without holding on or having the reassurance of a wall next to them. For those experiencing these difficulties, moving around and attempting to get anywhere was a very slow process. The look of instability and desperation to grab onto something solid was very familiar to me. This is the closest comparison to my balance and walking challenges that I’ve ever seen outside of someone stumbling around in a state of complete drunkenness! Fortunately for these inexperienced skaters there is a simple cure to their problems, just unlace and remove the roller skates, oh how I wish my problems were that easy to solve!
My health update remains the same, no fantastic new improvements but I am holding steady and still feeling pretty good. My back feels much better although it’s still not healed, like I said in my last blog, I think this will be a recurring injury and I will always have to be careful not to aggravate it. There is good news from my eyes; I think the new drops have been working because I’m not experiencing as much pain generally speaking. If I have been on the computer too long or my eyes are just tired then the problems come right back. They typically do feel better throughout the day and I will see my ophthalmologist again this week so we’ll see what he has to say.
I belong to several MS and stem cell email groups so I receive many new articles and research updates but I have not seen any advancements or treatments that are imminent. I stated that I would write about new advancements that are being made but there is truly way too much information to sift through. When I sat down to do some follow up research I realized that a person can literally spend days on this task so suffice it to say that there is a lot of work underway. For instance it was recently reported that Canadian scientists have been able to manipulate skin cells to reprogram themselves to an embryonic like state and further progress has been made in creating mature human neurons from neural stem cells of the human brain and spinal cord. I think the most important research is in controlling cell differentiation meaning understanding how to create specific cell types from your basic stem cell and there are many examples of advancements in this area but of course much work remains to be done. There is also extensive MS research being undertaken outside of stem cell science. A new drug called Fampridine-SR is in phase III trials which has been shown to improve walking speed in MS and there are many other MS research programs being conducted. I don’t really care where the advancements come from as long as they become available in time to benefit me before the disease has a chance to progress any further. I remain optimistic and hopeful that the stem cell transplants I underwent will keep progression of my MS at bay for at least the next three to five years while further advancements develop.
I have always understood of the fact that stem cell transplants are not yet a cure but a hopeful treatment alternative. The point behind this treatment is that it creates and maintains hope which is extremely important when the medical community offers nothing. Hope is alive and strong!
LC

Monday, March 16, 2009

HERE IT GOES AGAIN...OUCH!

It’s been a while since my last post but there hasn’t been much happening. My progress remains the same which is a good thing because I have not seen any real progression in the MS. My days are still very up and down because fatigue is still such a big factor but when I’m energized I do see improvements in balance and mobility. Just last Tuesday I was so impressed with myself because I was walking around my house without my cane and doing very well! This is an improvement that I can definitely notice but unfortunately it is not sustained but hopefully I’ll continue to progress. I think the physical therapy has been the most beneficial but this is difficult to say. It could still be the combination of stem cells, acupuncture and physical therapy all working together.
Back to last Tuesday, I was feeling good but while working out I managed to tweak my back again. I think this is the recurring injury that I suffered through all of last summer so I’m praying that there won’t be a repeat of that. After months of suffering I finally found relief when I started seeing my chiropractor so I was in to see him the very next day which was a beginning to feeling better. The following day I had acupuncture which I still try to do once a week. On top of her usual treatment she worked on my back as well and I think this was beneficial. Then on Friday I had a massage which was successful in loosening up my tense muscles so after all these treatments my back wasn’t so painful but still very bothersome. I’ll follow up with these same treatments this week and hope for further recovery because it totally sucks to have a bad back! When I had my severe back pain in China it felt like I had a cracked tailbone which is different from the back pain I’m experiencing now but I’m sure it is a result of that same herniated disc.
It’s only been in the last month that I’ve started working out again so it sucks to have reinjured my back because last year it prevented me from exercising from June until I went to China. Working out is important to me because life is so much easier when I’m stronger. Because I don’t have balance or the ability to coordinate different muscle groups to work together, I must rely on brute strength to perform many tasks such as lifting or even opening some doors. It also gets my heart rate pumping which is good since I don’t really get any cardio exercise. I’m also a prime candidate for osteoporosis because I’ve had so many high dose steroid treatments and weight bearing exercises are recommended to strengthen bones. Working out is not only beneficial for strength but it builds muscle making me appear strong and fit, when you look healthy it’s easier to feel healthy!
Unfortunately my back isn’t the only issue that I’m currently dealing with. I recently blogged about vision problems I was having and it’s gotten worse. My eyes get very sore and like that day in Costco, they can become very blurry. I’ve been back to my ophthalmologist who continues to believe the problem is caused by an infection however I know part of it is due to MS. Like anything else the problem becomes exacerbated with fatigue and if the cause is just due to infection why has it been ongoing for over two years. Why does the pain and blurred vision come and go day to day and why can’t the antibiotic eye gel ever fully correct the problem? In the end I think he is like most other doctors and can’t fully understand what I am going through, what the real cause or causes of the problem are or how to effectively treat the problem if indeed it is treatable. Perhaps he can prescribe medicine to alleviate the pain and ease the vision difficulties but I also believe that he operates from a box defined only by the parameters of his area of expertise. He is not very personable and never voluntarily explains the causes or treatments that he is prescribing. It seems his attitude is: I’m the expert now just do what I say. We’ll see what happens this time around, I now have 3 different drops, one to apply three times per day, one to apply four times per day and one just before going to sleep. It’s very confusing to schedule the times properly so I can actually “do what he says”! When I filled the prescription the pharmacist made a faux pas saying “Oh you’re going to have eye surgery” but quickly qualified her statement after seeing my reaction. She said it’s common to use these different eye medications in conjunction with one another when having eye surgery which I’m sure isn’t in my doctor’s plans but who knows because he never explains anything.
I remain very positive about my health and improvements that may still appear. I’m also positive and hopeful about further advancements that are being made with stem cell research. I think I might write about some of the promising discoveries that are being made in my next blog. For example progress in differentiating stem cells to create specific neural lineages and specific cell pathways that prompt stem cells to specialize and become blood cells. With Obama lifting the ban on embryonic research there should be a flood of new research projects starting up and our understanding of stem cell science is growing by the day. I only wish there was more collaboration between scientists and especially from different parts of the world. If someone could actually collect and coordinate all the different research findings from around the globe I’m sure we’d experience a leap forward in our collective knowledge and proximity to new treatments and cures. We’ll get there one day and the future does look bright, we just have to cope with the present in the meantime.
LC