1/9/12 New Year, New Learning

Anyone with MS knows there are times that trying to deal with this disease is just overwhelming.  I have thought many times that if I just stayed where I am now and didn't get any worse I could make it to the end of my life feeling ok.  Then there are the times when I ask myself, "what's next?" when something goes wrong or I have a day that doesn't seem to be an improvement.  It sometimes feels like driving down a long, narrow, winding road at night with just the parking lights on.  With no idea what's around the next corner, a quick sense of relief is soon followed by the challenge and uncertainty of the next one.  It's exhausting, and no matter how many corners you make it around without being hit, you can never let the guard down.

As my legs continue to strengthen (I'll post a video of me coming down stairs soon) and my nights of waking up in a soaked bed seem to fade, it's hard to not feel like my 10-try CCSVI was worth it.  grueling, disappointing, frustrating and irritating as it was, Dr. Arata and Dr. Stone combined in ways they will likely never know to get me on a path where I feel I can not just avoid those dark corners, but to actually shine some bright lights down the road.  It's hard for people who have never known me as an athlete to think of me as an athlete, and wonder why it's so difficult for me to accept being hindered.  I don't often see people who knew me before the disease, so I'm out of sight and out of mind.  Doctors don't see me on a daily basis and only try to address their specific disciplines.  My son is only 13 (nearly 14) and he kind of understands but not really.  So it's up to my wife and I to figure things out.  And I say this again....my goal isn't to just "not get worse."  I want this disease out of my life.  Period.  And that is what I will achieve.

Between searching the internet, talking with friends who are doctors, and friends who are non-doctors, it's clearly a lengthy road to recovery.  CCSVI is still not well understood by the medical community, and many people who have had their veins opened up have not experienced much relief and/or had complications.  Because I had the initial relief from the hypertensive environment and 

I continue to see something measurable fairly regularly, I have the benefit of feeling what is happening.  My thought is the MS disease itself is gone and now I have to weather the passage of time for the nerve damage to heal.  Nerve cells take the longest to repair in our bodies, so this makes sense.  It also makes sense that, if true, I will regain function in the reverse order that I lost it.  So from the day my veins were finally opened back in August, my daily mission is to do anything I can to keep improving.  Easier said than done, but any progress is hope.

Lately the thing that seems to be improving is my bowel function.  Perpetually constipated for the past few years, my wife and I have come across magnesium in our research.  It seems I have had a magnesium deficiency for some time and didn't know it.  Both times when I was in hospital in 2011 my exit was delayed because I was low on magnesium.  I thought that was surgery related and didn't put much into it, but as we began to research the symptoms of magnesium deficiency, it became clear this was something we needed to research further. 

Many symptoms of magnesium deficiency are also symptoms of MS.  Only 1% of the magnesium in our bodies circulates through the blood, and therefore extrapolation of magnesium blood tests does not suffice as a true test of the levels of magnesium in our bones and cells.  Many articles state that magnesium helps in the enzymatic reactions of some 300 bodily functions.  Calcium contracts muscles while magnesium relaxes them.  Magnesium is absorbed into the lower intestine and colon and helps hydrate that area, easing constipation.  Too much magnesium leads to diarrhea, so it's not too difficult to experiment on the proper levels.

The main problem with Magnesium is it is not well absorbed in many forms.  I have tried numerous pills and supplements, and also injections, with no real success.  We recently tried a product called Natural Calm, which is Magnesium Sulfate in powder form that is mixed in water, and this seems to be doing the trick.  Between the CCSVI, i.e. improved blood circulation, and the introduction of more magnesium into my system, my bowels are working much better.  No more enemas and frustrating mornings trying to clear out before a meeting.  I'm much more regular too, another clear sign of improvement.  

As 2011 ended last week and 2012 rolled in, I closed my eyes for awhile and I wondered if this would be the year things turn around.  It's been a tough road for these past 5 or 6 years.  Between the economy and this disease with all of its complications, I have wondered many times what I did to deserve all this.  The answer never seems to show up, but perhaps if I can turn it around and keep improving this year, the experience will have been worth it.  

12/12/11 Conclusive Evidence



A quick break on some sandy terrain



Those who follow this blog know I spend a lot of time on the trails riding my KTM, and this weekend was no different.  Saturday I rode with Kathy and Jake on their quads, and Sunday I was out with my friend on his Yamaha.  I wasn't really too in tune with how much I've improved on the bike until Sunday when we rode some 65 miles on a wide range of terrain types.  At about 50 miles into the ride, my legs were just exhausted.  Gone.  Done.  For the last 15 miles, the ride was significanty more difficult and I became a spectator on my bike.  Let me explain.

When I first got the bike last year, my legs were weak but improving after my first CCSVI.  I was also brand new to riding, and obviously not very good at it.  Accordingly, I didn't have a very good gauge on my progress either as a rider, or more importantly, on my disease.  Then my left jugular began to clot and I went into the hospital in February, coming out after 10 days and on Coumadin (off that stuff now).  My legs were ridiculously weak by then, but I wanted to ride to get out and enjoy.  I fell off so often it was not funny, except it really actually was funny - at least to everyone else.  Most people think of falling off a motorcycle as quite an injury threat, but most of my falls were more like no-leg tipovers when I lost momentum and couldn't get a leg out to save myself.  All my riding buddies talk about how slow motion and animated my falls are as they laugh at me.

Over the past couple of months, my riding has really improved.  I'm not afraid of the sand anymore, my cornering has improved immensely, especially in the soft stuff, and I seem to just charge up most of the hills without too much trouble.  That is, until mile 50 yesterday.  After some amazing scenery and terrain of every imagine, we hit the whoop section (skiers would call these moguls).  I tried to work my way through them as I had the rest of the day, but that was it for standing up on the pegs.  As I said above, the legs were gone.  I had to sit down for most of the rest of the ride, and suddenly I was like a spectator on the back of a hay wagon.  I suddenyl started falling in the ruts more and slogging through the sand like I was back earlier in the year.  And suddenly it was clear to me.  I have improved as a rider, and more importantly, my legs are stronger.

One of the reasons I love the bike so much as a form of exercise is because for the most part my feet stay on the footpegs in one place.  The rubber on the bottom of the boots stick onto the serrated pegs, and all my adduction and abduction issues subside, leaving me with overall leg strength to manage.  Sunday became 100% clear that my legs are so much stronger and I'm a better rider to prove it because my legs are helping with turns, bumps, whoops, weight shift, and all of the other things legs do on a bike.  The first 50 miles I had strength, and the last 15 I didn't.  It was conclusive, obvious, powerful, and quite exhilarating. 

We got back to the truck and my riding buddy had to peel me off my bike and I had to sit down for a good half hour before I could even stand up.  We then loaded up and headed home, and I felt empowered that another little step in my recovery seemed at hand.