1/30/12 My leg looks like a leg again

My son Jake has been posting up some videos of us out on the dirt bikes lately.  We got a GoPro helmet camera and this has become one of the ways we can document how things are going.  Unfortunately, we haven't done such a good job at editing them so what you have it a rambling on of us riding through the trails here in Nevada, so we will try to get that edited asap.

We went for a ride again over the weekend.  Sunday the 29th was up to a spot we call the garden of eden for some skinny trails, both single and slightly wider than single track.  I ended up doing literally thousands of whoops (bumpity bumps or moguls for the skiers) until my legs felt like they were going to fall off.  I've developed a new way to go over the whoops, kind of a hybrid method between how I was doing it (i.e. slogging through them sitting on my butt while holding on for dear life) and how they are supposed to be done (standing on the pegs in the athletic position letting the bike do the work underneath).  It's made the ride a lot quicker and more fun, and my legs seem to tolerate it well. 

Ah yes, the legs.  Those appendages below the butt that are supposed to give us the ability to ambulate perpendicular to the ground at a speed commensurate with the needs at the moment.  I remember when mine did that.  I've forgotten what it feels like to run or even jog, and I don't remember walking without having to put a great deal of effort into it.  No question my walking is better, but I'm not out of the woods yet. 

The big thing to report today is what my left leg looks like, namely a human leg that matches up with the right one.  The bumps on my ankles are the same, and I can see my veins and other features on the top of my foot.  Just before my first CCSVI, my left leg was swollen.  No features were visible on the top of the foot, and it looked a bit like my foot was inside a balloon.  I got the CCSVI and immediately noticed the features the next morning, but as I clotted up each time over the fillowing year, I had various degrees of swelling show up.  Then in August after I had my vein reconstruction, my leg looked like I got iinto a knife fight for awhile, then it was swollen up for a bit, the wounds wouldn't heal for awhile, and then I managed to get contact dermatitis from the neosporin.  The thing has even looked like a memory foam mattress from the edema.  Today, it looks like a leg.  Still have the scars from the sutures, but it looks like a leg. 

Hopefully soon it will work like a leg. 

ps. Since increasing my magnesium intake I have averaged two unassisted bowel movements a day.  What an immense relief this part of the puzzle is. 

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.