Wednesday, May 27, 2009


I have written about my eye issues in several blogs but unfortunately I’m no closer to solving the problem. The condition of my eyes fluctuates between alright and not very good, depending on the day. I had mentioned that I was seeing a new ophthalmologist hoping that he could bring a new perspective to the situation. The ironic part about seeing a new doctor is that although we have never met it seems as though he’s been reading my blog. I finally found a doctor that is able to keep his ego in check and speak honestly. Just as I had thought, an honest doctor would own up to the fact that he doesn’t know what’s wrong and this doctor boldly admitted this! How refreshing!

He could see some redness in my eyes and eyelids but could not attribute it to anything specific and stopped well short of calling it an infection. He said that there is no point in loading me up with more prescription drops if they don’t seem to be doing anything except cost money, what a revelation! I asked if he thought my MS or possible problems with my optic nerve could be causing my difficulties, he said it’s possible but he really doubted it. Hopefully my new MRI will show something but yet again, this is a big uncertainty. His overall point was that without knowing what’s wrong, it’s very difficult to treat me. His suggestion was to continue using Refresh Tears and when they felt really bad to use a warm compress. Another option he gave was to try flaxseed oil, I haven’t looked into this yet but at least it’s an option. If my vision becomes very bad then I should go back to see him but perhaps the best course of action I’ve heard is his suggestion to keep a journal about when I experience pain or vision difficulty, what the situation is that may have caused it and what if anything provided relief. Maybe this approach will provide some meaningful information on how to proceed but the bottom line is that I’m sill no closer to solving the problem.

Unfortunately my vision is a serious issue that has become worse. It hasn’t affected me to the point of preventing me from doing certain things like driving so I’m praying it doesn’t deteriorate any further. Like I’ve said, it is part of the up and down nature of MS that is characterized by good days and bad so there are plenty of times when this is not a concern at all. On the other hand, there are times when I’m reminded of just how poor my vision can be. I recently went golfing with some friends, I didn’t golf but I did have a great time getting out on the course, driving the cart and enjoying a few beers. Being exposed to the bright sun and open wind isn’t the most favourable conditions to be in for my eyes but until this day I hadn’t realized how poor my eyesight had become. Even though on certain days my vision will still be classified as 20/20, this is in a controlled state looking at a chart where my eye has time to focus and disregard the outer edge blurriness which is a deficit that I’ve been left with for several years now. Very seldom could my eyes track the ball from the initial impact of the club through its flight but when I could see the ball I would lose it as soon as my view point hit the open sky. Looking down the fairway I could see it bounce after it had landed but I had no concept of where it was heading from the tee.

Even if I am able to do some scooter-golf this year I don’t think this will be a problem. To have the ability to hit the ball hard enough, high enough or long enough to lose it is something I doubt I’ll have to worry about. I guess you’d have to go way back in my blogs to find out what scooter-golf is but it’s a new innovation to the game that I developed in 2007. Basically I golf from my scooter by positioning it in front of my ball, spinning my seat around to lean against it and rest my lower legs against the shroud for stability then try to hit the ball. The first time I tried this it worked pretty well because even though I couldn’t hit the ball far I was able to par three holes. This was on a very small par 3 course but still something I considered a great achievement! Since I put my back out in June last year I didn’t have the opportunity to practice at all but I’m hoping to this year. I’ll need to take some lessons and possibly make some modifications to my scooter but hopefully I’ll be able to get out. If there happens to be a pro out there reading my blog with any experience working with disabled golfers I’d love to hear from you!

Thursday, May 21, 2009


Ups and downs are one of the main characteristics of my MS. I’ve been feeling good the last while, no particular reason other than I guess I’m on an up rather than the down that I found myself on a few weeks ago. Some of my balance issues have gotten much better again and I’ve been feeling stronger. Just as it’s always been, I have good days and I have bad days, fortunately I’ve had more good days recently.
I’ve stopped acting so lazy with my exercises so there’s some renewed energy there. I’m not going to my athletic therapy anymore so for my last session I had my therapist do an in home consult. What I wanted to do is incorporate my rehab exercises together with my workout so I’d get a lot more done and not be able to avoid the rehab side. By coming to my home she could see what equipment I have to understand what kind of routines she can develop. Now I have things simplified to three different workouts that take care of my strength building and rehabilitation exercises together in less than an hour with many variations so I don’t get bored. This will force me to work out at least three times a week but I can do more if I’m feeling up to it. I used to work out four times per week but didn’t always get the fourth day in and often missed or avoided my rehab exercises so I think this new system will work well.
The largest problem that I’m currently dealing with is my eyes. They are very sore and my left has improved in the last 10 days but prior to that my vision was completely blurred. I have an appointment with a new ophthalmologist tomorrow so hopefully he’ll be able to bring something new to the table. Since this problem seems to fluctuate between good and bad days, I’m more prone to attribute my eye difficulties to multiple sclerosis. I never had an issue with my eyes until I lost the vision in my left due to optic neuritis resulting from an attack I had in 2006. My left eye has never fully recovered but has become increasingly troublesome since January and my frustration with my ophthalmologist has been his unwillingness to consider alternative causes such as inflammation around my optic nerve. I have no idea what might be wrong but different reasons for the problem need to be considered. If it is resulting from MS then there is probably nothing that can be done but it’s always worth while examining different options.
I had an appointment with my neurologist today for the first time since coming back from China. Of course his first question was whether I thought it was successful to which I answered the same as I have in my last few blogs which is that I feel better today than before I went to China. He was not surprised that I continue to experience many MS difficulties but he was very happy with my condition and agreed that I was much better than the last time I saw him. The spasticity in my legs was less severe and I was much stronger, he was pleased that I’ve been working out. He took notes on everything I could recall from my treatments in China but wasn’t too sure where to go from here. I knew that the outcome of this appointment would be the same as always; there are no known treatments that he can recommend so the question comes back to me, what do I want to do? I could go back to any of the disease modifying drugs probably Tysabri or simply do nothing. No one really knows if I will be subject to another attack, whether the disease will remain stable or if further progression is inevitable. I decided that it’s best to continue on my current path of self help and monitor what happens from here.
One of the questions I had for him was whether a new MRI would show anything happening with my optic nerve so we could possibly find a reason behind my eye problems. This is a possibility and he agreed that I should have a new MRI to at least compare the status of my brain now to before the stem cell transplants. A new scan would also establish a new baseline for future assessments so I’m very glad that he’s taking a keen interest in the results of stem cell therapy. I also gave him the requested tests that Beike would like to run for their follow up, he wasn’t sure if we could get everything they were asking for but he’ll send a requisition to the lab. Hopefully the Chinese will be able to learn something from this follow up effort.
It’s comforting to realize that my status hasn’t really changed and that I am stable. The up and down nature of this disease is very familiar to me by now and I shouldn’t have been surprised by my recent down experience. What I had reinforced in my mind today is that nobody knows what will happen with my disease or what could possibly happen with stem cell transplants. At this stage everything is an unknown so I just take it as it comes, stay positive and keep praying.

Wednesday, May 6, 2009


I just attended an information seminar on upcoming research in MS put on by the MS Society; I do not even know where to start. I’m very glad that the MS Society sponsors these types of seminars but this one was very disappointing. The speaker offered very little new information other than the research she is involved with which may be promising one day but it is just beginning with mice experiments and she admits that any resulting treatment will be at least fifteen years away. I have done and continue to do extensive research and consider myself extremely knowledgeable in many aspects of multiple sclerosis so if I found the information presented to be completely irrelevant and far too technical I can only imagine that it flew over the heads of the vast majority of the audience. Most of the crowd was made up of people with MS and family members all hoping to hear some inspiring news and information. It was clear to me that many were not that well informed about the disease or treatment alternatives so perhaps they did gain some knowledge but there was a lot of misinformation put forward. The speaker was a research scientist focused on her investigations but she was not very familiar with other research such as Doctor Friedman’s study in Ottawa. His work was brought up but the speaker mixed up his study with another study in Israel confusing many people. Stem cell treatments like those performed in China were mentioned but maligned in the same manner that Dr. Friedman describes this alternative.
In the end it wasn’t about the information I gained or didn’t gain, for me it was the general atmosphere that was of interest. I was very surprised that no one recognized me from W-Five; there were so many people there that would have had such a great interest in the show. I always find it motivating when I’m in a crowd of people close to MS and those suffering from the disease, some far better off than I and some far worse. Either way it puts my situation into perspective when I see others state of disability and their attitudes. There was such a sense of despair and a craving for some kind of hope. I often go on about hope and how important it is so when I see people without any it’s very disheartening. There were many questions brought forward about what could possibly be done for their suffering loved one or how long will it take for something new to come along. It was as if these people were not listening to the same information that I was. I spoke with and offered information to a few people afterwards that were asking questions and not getting answers. One woman in particular was attending on behalf of her sister who has experienced a rapid decline and basically been written off by her doctors. It had essentially been explained to her that there is nothing that can be done, no hope at all which effectively drained her will to live. Once this happened her condition declined even further, this is a very familiar story that happens far too often.
It brings me back to my own personal situation and the lack of hope that my own doctors offered. I’ve had many comments on my last blog expressing disappointment and sadness, well those people need to get over it, I have! Because I feel some disappointment doesn’t mean that I’ve changed my perspective. I stated that I’m not doing bad and that is a positive! I haven’t had any further progression and for this I am happy and thankful, the future is still an unknown and this is why I still have hope. When I’m around other MS sufferers and can see how much worse I could be I can actually feel a sense of joy as strange as that may sound. It’s the classic case of the glass being half-empty or half full; in my opinion the positive viewpoint is the only healthy option. It’s always helpful to realize that whatever the situation, things can always be worse.
It seems the most prominent concern and question people had was what can be done but unfortunately this speaker was not involved in the clinical aspect at all and was the wrong person to be addressing these questions. People were desperate to find new trials or treatments but this seminar offered them nothing. This desperation comes from those who are in the secondary progressive or primary progressive category and feel that time is definitely working against them. Unfortunately there really is very little promising news on the horizon and the fact that any new developments literally take years and years was reiterated several times which I felt was discouraging to everyone in the audience. After doing an online search for MS trials I found 587 trials worldwide with 105 being new but the disheartening part is that everyone is focused on the relapsing remitting form of MS. I only found three for secondary progressive with the most promising being conducted by BioMS out of the University of Alberta. This is the same trial I was enrolled in and had to drop out of because after suffering four relapses I found out I was on placebo. Results from the first phase of this trial should be published in the second half of this year but when the treatment might become available is still unknown. Knowing all of this I can understand why people suffering have little hope and this is why I’m thankful to have my hope grounded in my faith!
I was just contacted yesterday by a man from Winnipeg who saw the W-Five episode and wants to go to China. He has had MS for approximately the same amount of time as me but he’s now 53 years old. It sounds as though he is slightly worse off than I am and his goal is the same, which is to halt progression. I can’t give him any indication of what benefit if any he’ll receive other than relating my experience but this is of secondary importance to him. He is just glad that he can try something and find a little hope. I did encourage him to have the treatment but this is a personal decision that each individual has to make. This little piece of hope has turned his spirits around and regardless of what the final outcome may be, he’s in a positive frame of mind and is thinking why not try! I still believe that the answer to MS and many other diseases will be found through stem cell technology and I think the likelihood that this discovery will be made by researchers in China is very high. It will come and at the risk of sounding very repetitive, we can’t lose hope!