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,
PRAISE GOD!
LC
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