Thursday, January 30, 2014

Status: New Normal

It's been six weeks since I last posted, mostly because we were in Australia and New Zealand to spend Christmas and New Years with the kids, not because there was nothing to report. I wonder if I still have any readers?  In any case, assuming there are still one or two of you checking in once in a while:
Kids collaborating to push me up a big hill in 
South Australia... amazing how a small incline 
can make pushing SO much harder.

  • In two weeks it will be exactly 10 years since I was diagnosed: February, Friday the 13th, 2004. A lot has changed in that time.
  • Strength and control of my left arm and leg continue to deteriorate, and the numbness and loss in dexterity in my right hand is getting a little worse. I walk with poles or a cane outside of the apartment. In Oz and NZ I was wheeled around in a rented wheelchair, mostly by our kids. Winter, for me, is hell: the icy parking lots are a fall and broken leg waiting to happen.  The idea of spending winter in a climate that has no snow or ice looks better all the time.
  • My left leg swells in warm weather (and on flights), and turns to ice in cold weather. I would say that this has gotten worse over the last year.
  • I had a shortness of breath while in Australia and NZ, and it has continued since I returned. Its like the feeling you get when you've had too much turkey at Thanksgiving: like your lungs can't expand enough to take a full breath.  It reminded me of the time on a trans-Pacific flight in the 1990s when I got short of breath, either because of an allergy or because the pilots had lowered oxygen levels (to save fuel). Some (most) of the times I've felt this, it was accompanied by that old "MS hug" feeling that I haven't noticed often since I returned from my treatment in Poland (almost 4 years ago!). My GP says my lungs and heart sound good, though he'll have more tests done.
  • On the other hand, and speaking about the results of CCSVI treatment in Poland, I continue to have good balance and my autonomic functions remain greatly improved.  Now sometimes my balance seems worse because I trip over my semi-useless left leg, but that is simply because it's hard to walk with such an appendage.  My energy is also still much better than before I went to Poland, though this winter I seem to want to take naps after lunch, and some afternoons that turns into hours-long hibernation.  However, it isn't (usually) accompanied by that heavy, lethargic, stunned feeling I used to get before my "Zamboni" treatment.
  • I continue to do physio with a therapist who is really interested in trying to help me get the most out of my diminished capabilities, and Pilates with an instructor who is equally engaged in my situation. I've not gone to yoga since coming back from vacation, but that's because the icy hillside parking lot at the yoga place is just too daunting. I didn't do any of those while on vacation, but am now (slowly) working my way back into my daily routine of physio and/or Pilates and/or yoga.
  • The scooter I'm considering is the Pride Pursuit XL, pictured here.
  • We've decided to get me a scooter in the spring: I'm bowing to the reality that, except for biking, there is now way for me to get around any distance without a car. This way, I'll be able to go out for "walks" with Mary and even on longer bike rides (I can only bike for about a half hour). I should have done this last spring, and not had a summer of reduced activity. 
  • As far as drugs go, I'm still on arthritis, spasm and nerve pain drugs that seem to be working (at least making things better than they otherwise would be). After discussing it with my GP, I've decided to stop taking Lipitor (for my cholesterol), at least for a few months. I've been taking it for over ten years, and my doc agrees that, given my other problems, chancing higher cholesterol while testing to see if any of my "MS" symptoms get better after dropping Lipitor is a worthwhile risk.
  • There has been a lot of news on the MS research front: results both supporting and denying the existence and/or treatment of CCSVI, stem cell research that looks interesting, and even our old "friend" Dr. Freedman is publishing results of his multi-year study into his technique of killing the immune system, then building it up again using bone-marrow cells. A lot to digest, but If I have any thoughts on it, I'll put them into a future post.
  • Finally, I should note that I am now on a disability pension from CPP and could have been since I retired. Still, once I was on it, they also gave me 15 months of "back-pay".  Besides giving me a little more than my "reduced at age 60" CPP, it also means that when I get back on regular CPP (at 65), it won't be reduced.  Since getting it I've realized that a) I only found about it by accident and b) there are a lot of other people out there who don't know about it, who should. Spread the word!

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