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!