My latest Avonex discoveries

July 4, 2006

My latest Avonex discoveries

 

I have had some trouble with hesitation in starting my Avonex injections in the 3+ years I’ve been doing them.  I have tried different rituals and practices to see what helps me, and different things have worked for various numbers of weeks.  Three recent enhancements are proving very useful to me!

 

The first one is that I set up a mirror so that I can watch the injection “remotely” rather than directly.  This creates just enough detachment that my hesitation is a lot less now.  It’s a mirror like you might put on a table, and I prop it at leg height by holding the support leg down flat against the table top with a tape dispenser or stapler, and then adjust the angle so that I have a good view.

 

The second enhancement is even simpler: I cross my non-target leg ankle across the target leg, just above the knee, and let the weight of it hold my leg still.  This firm contact creates a very supportive feeling for the target leg.  I got the idea in part from how comforting it was to me when I had a spinal tap many years ago, when the nurse held me while the procedure took place.  At the time I didn’t know that it was required as part of the procedure; I though she was just comforting me!  Well, I never have forgotten how powerful that was as an experience, and it is amazing to me that simply the weight of my other leg crossed over can create a similar feeling of support.

 

The third fairly recent enhancement is that I do some squats (with almost no weight on a barbell) to get the muscles working a bit to accept the drug, and then I do a legs-up-the-wall yoga resting pose (Viparita Karani) for ten minutes.  Between these three enhancements, I have greatly reduced the hesitation and the side effects I have after the shot as well.  If any of this helps someone else, I will be very happy to have shared it!

 -Howard

 

Who I am!

July 4, 2006

I am Howard Olivier, a 48 year old father of two great (almost grown) kids, who was diagnosed with MS in 1984. I had my first onset of symptoms in 1982, while very active in the Grizzly Peak Cyclists (bicycle club in Northern California).

I have lived in Boise, Idaho since 1984, and am married to the same woman for 24 years now.

I can be reached by email at howard@flyingpie.com

The least negotiable thing in my walking

June 20, 2006

When I started being able to walk 3-4 miles again, the next thing for me was to get a little faster at the walk.  One day I was walking to work and increasingly struggling along my way.  I noticed that I was throwing my left leg from behind me, and regaining control of it around where it was hitting the ground, with very little control of the middle part of the step.  All of the sudden I saw a picture in my head of a woman I have watched struggle with her walking for years, and how I was doing this reminded me of her walking gait.  It stopped me cold!  What I resolved that day was that the quality of the walking steps I take is less negotiable then the speed I am walking.

 

The next time I walked, every time I started having trouble, I stopped and tried something different to regain high quality steps.  I tried skipping, I tried extra stretching.  At some points I was stopping every 100 yards, because I was unable to take pretty steps.  Then I tried a particular stretch – squatting down, with y back against a bench.  It is a way I sit before yoga classes often, and I have done for the last few years about 10 minutes a day of it.  Well, when I stretched like that for 5 minutes, I was able to walk well for the next 1 ½ miles!

 

From there, I understood that doing this stretch (which I mostly feel in my hips) is the reason that I even had the idea to try walking farther than a mile in the first place.  Now when I get tight on my walks, I do this stretch, and most of the time I am fully refreshed and able to walk well for a bit farther.

 

I no longer try to go fast, I just focus on taking pretty steps, and how long it takes is irrelevant.  Sometimes I still go pretty fast (over 3 MPH), other times I dip below 2 MPH, but I do NOT throw my leg through the middle of the range of motion.

 

It’s been about 4 years now that I have been walking 4-5 miles once a week, and while there are new struggles this year that I have not yet solved (some additional stretches need to be discovered), I am still finding ways to make it easy for me to take good steps, and I enjoy this practice each week very much.

When big muscles cramp

June 17, 2006

As I said before, my preference is to have my muscles be large muscles, if I am only going to have partial control of them.  There is one time when it is a disadvantage to have big muscles:  when they cramp up!  I woke up with my left calf in afully locked knot on Thursday of this week, and it was so intense that all I could do was to breathe through it and wait for the chance to get up and release it.

 This rattled me a lot, and I wasn't sure about going to work that day.  I did go, but things there were tough for me to cope with, and i decided to walk home, to see how that was on my legs.  I usually walk about 2 1/2 MPH, but this was a slower one.  I took 2 hours to cover the 4 miles, all the while wondering if this would be a good plan, or one I would regret.  I made it home okkay, and did 20 minutes of stretching and went to bed hoping that I would not have another lock-up of my calf while I slept.  When I woke up Friday, my legs felt okay, and I did not have a repeat episode.

The least negotiable thing for me, in my walking is that I take good quality steps, more on that, in my next post! 

two inches of invisible sand

June 14, 2006

Two inches of invisible sand


Multiple Sclerosis has been eroding my brain and CNS functions for 24 years now. An MRI reveals that my brain currently has a “Moderate” plaque load. Over time (barring sudden miracles or disasters) this will increase and be re-labeled a “Heavy” plaque load and it will keep that moniker for whatever time I have left.

 

I take Avonex, a weekly intramuscular injected drug, to slow the development of plaque in my brain, and to extend the amount of time my plaque load keeps the label “Moderate”. For someone with a moderate plaque load, I am remarkably active. I walk 4-5 miles, once a week; I ride my bicycle 50-100 miles a week & I still climb hills on my bike, although quite a bit slower than I used to.

 

I feel very fortunate that I began my MS odyssey with a body that was strong from 3-4 years of endurance cycling. Right away I understood that if I was only going to have partial control of a muscle, I preferred that it be a big muscle & I have deployed a lot of creativity toward keeping my muscles as strong, limber & useful as I can.

 

My best estimate is that I control somewhere between 65-70% of the muscle fibers in my legs. Unfortunately, the ones I don’t control don’t just sit there –they involuntarily contract at inopportune times & cause me to do extra work. To explain to an able-bodied person what the increased effort of riding a bicycle with my level of MS malfunction is, the analogy I offer is: It’s like riding in two inches of sand most of the time.

 

When I look at my Heart Rate Monitor, I can immediately see how hard I am working. When I compare it to the power output I am generating &/or the speed I am moving, it shows me how deep the sand is, at that time. Once it gets to the equivalent of 3” of sand, I stop and stretch, rest and re-group. After a little break, the sand is shallower, perhaps only an inch or so for awhile. But when I am climbing hills (the biggest challenge I have on a bicycle), the sand is usually at least two inches deep.

 

I often think of this invisible sand, when I am riding and getting passed by other cyclists. This way, they can feel great and get to “pass someone”, and I don’t have to feel lousy about it or begrudge them their relative ease. Those who know of my challenges respect the creative accommodations I use to adapt to my changing struggles. Those who don’t know can simply pass me and have that small burst of satisfaction. Perhaps it brightens their day a little bit, and it costs me nothing.