NEW HOPE FOR A NEW YEAR

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 30^th 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 14^th but recently had it changed to February 18^th 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 18^th, 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,

PRAISE GOD!

LC

TIME FLIES

Wow four months goes by fast, that’s how long it’s been since I posted a blog! I actually meant to get one in before the end of 2011 but now that year is in the history books so…2012 here I come! I wish that had some kind of connotation that I was going to bolt out of the gate running at top speed but unfortunately that is not going to happen. On the contrary, I have slowed even further which is a disappointing way to start the New Year but none the less I do have many positive feelings for the coming year. For starters, I will be getting married in June which is a very encouraging and joyful experience. I must maintain my focus on the positives in my life otherwise I’m left to dwell on the negatives of which there are many. If I were to let myself become consumed with the pessimistic consequences of some of my health problems, I could easily fall into a discouraging downward spiral of depression. This outcome would suck even more than the actual health issues that I’m forced to deal with.

I left off my last blog describing the painful experience related to having a bladder stone and the associated discomfort that accompanies this problem. It was at the end of August that I was awaiting my urologist appointment to find out when and how I was going to get some relief. Well the relief I was anticipating would not come until I could get in for surgery to remove the bladder stone and the earliest opening for surgery wasn’t until September 9^th, another two weeks of misery! I told my urologist that there was no way I could handle the pain and distress of leaving the catheter in for that much longer and insisted that it must be removed. The outcome of removing the catheter was unknown but there was no other alternative in my mind. If I was still unable to urinate then I could find myself back to square one so if it was coming out I would have to be prepared to self catheterize. A very eerie and unpleasant thought but nothing compared to the crap I had gone through the previous couple of weeks. The day after my urologist appointment I was booked to be taught the self catheterization procedure and as uncomfortable as this was, I found great relief in knowing that I now had the ability to alleviate my pain on my own when necessary. After the catheter was finally gone my bladder function had returned somewhat and I could urinate on my own but problems remained and I did have to self catheterize at least once a day. I finally had surgery to remove the stone on September 9^th and things returned to a somewhat normal, albeit dysfunctional state. I didn’t feel the need to catheterize on a regular basis so I stopped but not for long. Within two months I began to see a type of sediment and strands of some form of mucus in my urine…problem not solved!!! On November 21^st I was back to my urologist and was booked for another procedure on November 29^th. This time only required a local anesthetic so the doctor could use a scope to look inside my bladder to see what was happening and sure enough there were plenty of mucus membranes floating around. The doctor sucked everything out but I still didn’t have any answers as to why this was happening. The best explanation was that if I wasn’t completely able to empty my bladder then particulate matter would form similar to letting a glass of sea water evaporate allowing salt to crystallize and form solid particles. My doctors solution to prevent this was to self catheterize on a regular basis so unfortunately this has become a regular routine. It really sucks but like most things, after a while it becomes second nature and not a huge deal. The discouraging part is that now well over a month later the sediment and particles are still there so I’m not sure that catheterizing is all that effective. I’m going to my family doctor next week to get further tests done; perhaps there is still a bladder infection that just won’t go away. I don’t know what is going on but I need to look for answers!

In addition to my bladder issues, I have experienced a worsening of some symptoms. My mobility issues continue to get worse; the spasticity in my legs has increased causing more difficulty with walking. Same old issues but I’m just having more problems moving my legs, picking up my feet and the speed at which I move is slower and more pronounced than ever. My balance never did recover to the point that I feel confidant and secure in certain situations or movements. I decided not to register for skiing this year because I know I don’t have the balance to maneuver a mono ski and I wasn’t very interested in any of the other options. This fact really does hurt because skiing was something that I enjoyed immensely however I’ll never give up and perhaps by next year things will change. You just never know so I won’t give up hope no matter how unlikely the prospect of significant improvement seems to be. The results of my last MRI showed no new lesions or obvious MS activity which is a positive yet I still feel progression in terms of my physical abilities. This hasn’t stopped me from continuing an active lifestyle. I still go to the gym and have recently been working with a trainer. It’s been really good because he pushes me to have a really good workout, same old mantra: use it or lose it! It’s nice to be able to freely work my upper body again, after 4 physical therapy sessions my sore shoulder and arm were finally on the road to recovery. I still try to accomplish certain tasks that I was once so proficient at but now seem hopelessly useless. For example I’ve been building some walls to create two new bedrooms in our basement. A seemingly simple job but not for me, not anymore that is. It’s so frustrating to not be able to accomplish things without help or to take ten times longer than what I would normally expect. On occasion I allow this to get under my skin creating a very negative impact on my emotional state. I’m only human and sometimes get overpowered by the frustration and disappointment of my lost ability to do certain things. I have caught myself in the “walking envy” state lately. This is where I’m watching someone do something as simple as strolling down the sidewalk, even if they use a cane, I can’t help but feel envious wishing I could move that well. I hit that wall one day after working in the basement and reflecting upon all that I have lost. It caused a temporary emotional breakdown of sorts, it happens very seldom but a good cry can be therapeutic. I don’t stay down long but it is a little refreshing to not play superman all the time. When I come back to reality it is encouraging to look at what I can still accomplish. I love tools and building or fixing things and I can still do a lot. The knowledge is still with me and even though I might need physical help I can still accomplish lots, in some cases more than many able bodied people. I got a garburator for Christmas and did the installation myself. Not a huge feat but one that a lot of people would never attempt let alone complete successfully.

2011 had some very positive aspects, as I’ve mentioned I now own a home again and have my children living with me 50% of the time. It’s wonderful to play a more active role in their lives although it does come with additional challenges. It is far more tiring than I thought, getting up early to get the kids out of bed and ready for school, making breakfast and lunches and sometimes just the nonstop action of two young ones constantly running around is extremely trying. I’m thrilled to have my children back but it’s a lot for a disabled parent to handle at times. I just have to remember my limitations, take a nap when I get some down time in the afternoon and not feel like I have to be able to do it all on my own. I just have to continue to take things one day at a time.

I’m not sure what 2012 will have in store for me health wise but having described the gradual progression that I have experienced, my self advocacy is kicking in again. Apparently there is a study taking place for a secondary progressive treatment but like always that’s not on a time horizon that is likely to benefit me. There is still much controversy over CCSVI and pros and cons for both sides. Research is moving forward at a good pace but the benefits of treatment are still all over the map. Premier Wall of Saskatchewan has recently announced that his government has allocated $2.2 million for 86 multiple sclerosis patients to participate in Phase II clinical trials into CCSVI, currently underway in Albany, NY. I believe that we are still a long way from coming to any definitive conclusions on CCSVI but it still holds great promise. In the meantime, I still can’t sit back waiting for something or someone to knock at my door with the promise of any significant help. I’ve decided to begin research into stem cell therapy again. There has been much advancement since 2008 when I went to China for treatment but no concrete successes. Stem cell treatment is now all over the internet and offered in many places around the world but caution is a must. Many programs have proven to be fraudulent so diligent research is required. Until I can fully immerse my head into the research again, I won’t make any claims or plans but it is time for me to search for my own help again. I’m not sure where this will lead me but as I said, I can’t just sit back and wait while my body and mobility continue to decline. My hope still rests in the saving grace of God but that doesn’t mean that I can just sit idle waiting for a miracle. I do plan on getting back to writing more so you should see my blog posts more frequent than during the last year.

Until next time…

LC