I can’t believe that it’s been almost a year since I’ve posted a blog! That time sure went by fast; you know what they say “time flies when you’re having fun”! Well I can’t say that this past year has been fun but it did fly by. There were definitely some fun high lights throughout the year namely my wedding! I got remarried on June 30th and could not be happier with my new wife and family! I feel so blessed to have Lorelei’s love and support and a whole new family to go along with it. My in-laws are great, it’s truly amazing how well our families have blended, especially my immediate family. What a difference going from having my children every second weekend to now having a family of six. Even though we don’t have six in our household all the time it’s vastly different than being on my own. I shouldn’t refer to my previous situation as being on my own because I was fortunate to have a roommate who turned into my best friend. We had a good run for almost five years and I look back on those years with very fond and loving memories but now it’s time to build new ones! I really can’t explain how fortunate we are that our families have melded together so well. Our children get along great even with the vast difference in ages. My oldest step son is now a young man of 18 while my youngest daughter is just about to turn 10! (Wow double digits…another case of where did those years go?) At any rate I could not be happier with my family, we are so very blessed!
Now the bigger question of what’s gone on with my health in the past year? As I alluded to in my last blog, my MS symptoms and other health problems had been getting worse. This is perhaps one of the reasons that I haven’t been writing, it’s difficult to get inspired when I feel my health on a slow decline. It’s kind of the same old story just a continuation of my mobility issues, things have just remained on a gradual decline. I’ve had two MRI’s in the last year and both were rather uneventful, no indication of new lesions and there has been very little change in terms of my MRI results. Sounds like good news but this does not give a clear indication of disease progression because there has definitely been progression. I had held steady for years at a 6 on the EDSS scale (expanded disability status scale is a method of quantifying disability in multiple sclerosis that goes from 1 which is no disability but minimal signs in one functional system to 10 which is death due to MS) but was informed by my neurologist during my last appointment that I am now a 6.5 to 7. Once someone hits 7.5 they can realistically expect to be confined to a wheelchair full time and unfortunately this is where I see my progression leading. I think most neurologists avoid expressing this kind of information unless you directly ask which I had to given how I’ve noticed the slow progression.
I’m not just dealing with mobility issues, my bladder and bowel problems continue to plague me and my eyes have never been as bad as they are now. At times it feels like I’m in the midst of an attack but I know that’s just how things are going. In addition to these problems, I am also having cognitive issues. I definitely have memory difficulties and find it difficult to get anything accomplished. I suppose there is a lack of focus and coupled with my lack of energy and fatigue it is hard at times to stay motivated. When it comes to writing there has been a lack of confidence to focus my thoughts and put them to paper in any kind of coherent manner. I am perhaps being too hard on myself in this area but the bottom line is that I haven’t had a lot of motivational factors to write about. It is almost the end of 2012 so I figured I’d better get my head out of the sand and carry on!
Realistically other than the continuation of disease progression, things in my life have been mostly positive so I shouldn’t get down on myself. I ended my last blog talking about starting to research stem cell therapy again. Well it took about nine months for something new to intrigue me but it was worth the wait. The evidence is still not conclusive one way or the other on CCSVI but I still maintain that it is definitely a very important piece of the MS puzzle. What I found in the blogosphere in late September was something new created out of the old. It is a CCSVI clinic using a combination autologous stem cell venoplasty. In plain English they are doing the “Liberation procedure” in conjunction with stem cell therapy and have achieved remarkable results. Of course this is not offered in North America so I’ll have to travel to India this time. I am even more excited about this procedure than when I first learned of CCSVI! Even though the procedure is new, as of December only 41 patients had been treated, they are showing phenomenal results. As reported to me by the company heading up the procedure, “every patient seems to have had their disease turned off by the expression of proteins by the new stem cells. This is what the research trials confirm should happen and it’s being seen therapeutically in our study as well”.
An example of the amazing results being achieved is Deb O’Connell a patient from Victoria who underwent the procedure in September. She was a 9.5 on the EDSS scale (remember 10 is death due to MS) when she was admitted. She could no longer speak, she couldn’t swallow properly and had feeding tubes inserted and was either bed ridden or in a wheel chair permanently. Within four days of beginning treatment she regained the ability to speak and her feeding tubes were removed. By the end of her two week program she actually walked out the front doors of the hospital! Amazing but true, there is video evidence of everything! She continues to progress, getting stronger and gaining weight and has effectively gone down on the EDSS scale from 9.5 on admission to the clinic to 6.5 as of last week.
Another patient from the U.S. named David Summers that I have personally spoken with was an 8 on the EDSS scale upon admission in March, essentially a paraplegic with no feeling below his waist. Not only did most of his MS difficulties clear up, many of which I share with him like bladder issues and heat intolerance, but he is able to walk! It is now ten months since his treatment and he hasn’t lost any of his improvements. I last spoke with him yesterday and he is doing great. He thought the stem cells had hit a plateau but just recently he has experienced new improvements in his hand, to the point that he can almost type normally.
When I talk about these examples of people regaining the ability to walk I’m not implying that their walking is back to normal but from where they were to where they are now is truly miraculous! One patient admitted at 4.0 and treated in June has had no symptoms since August or September, his neurological deficits are completely back to normal and he may be considered to be in remission. These are phenomenal results that carry so much hope! I was originally slated to enter the program on January 14th but recently had it changed to February 18th to give myself a little more breathing room to raise the money. This time the treatment will cost me around $30,000 which is nothing considering the results that have been documented, however it is an amount that I can’t just write a cheque for especially in my current financial situation so I’m back to fundraising. As I write this blog we are at $11,430 so I still have quite a ways to go. Most of this money was raised in my first fundraiser which brought in an amazing $8,400! What an exceptional event organized by an exceptional man named Travis Richardson. The support and love that I have experienced from my Airdrie community has been overwhelming and I am so grateful. It is only two months from today that Lorelei and I will be boarding a plane and heading for India so the pressure is on to come up with a lot more money. Actually $17,000 is supposed to be paid to the clinic by January 18th, 30 days before admission so the heat is on. As always I’m not going to worry myself sick about it, my faith is strong! If God opened this door for me then He will provide the means to make it happen. If you’re reading my blog then chances are you already know about my website hopeforlee.ca where you can learn more about the procedure, the clinic and medical staff and most importantly make a contribution to my cause.
I started my blog years ago to keep people informed about my health and to raise money for promising and hopeful treatments to help me fight this terrible disease. Now that I am starting out on another journey to health I will keep my posts more frequent so stay tuned for more. Excited would be a major understatement to describe the myriad of emotions and thoughts racing through my head. As I’ve always believed, never lose hope and at this time there really is HopeForLee! As with previous treatments, I embark on this journey without major expectations other than stopping this disease from progressing any further but that doesn’t mean that I won’t hope and pray for much more. What an awesome opportunity and for that I say,