Saturday, July 21, 2012


A while back, I had thought of writing a blog entry on the city of Aurora, Colorado, and why I love it.  When I moved back to Colorado from Minnesota, I moved to Aurora and have worked there ever since.  I lived in an apartment in Aurora, and bought my first house there.  We moved out because my husband had been there so long and wanted something different.

I suppose what I like about Aurora is the diversity it brings.  Of course, this isn't everywhere and there are pockets, but it is there.  We have a prayer group in the building where I work, in Aurora, and it brings people of diverse backgrounds and even religions together in prayer.  For some reason, in Aurora people seem more willing to naturally offer help than in some other places.

The shooting rampage during Batman - in this city that I love even though I no longer live there, my work is not near the location and neither is my church (which is also in Aurora).  I don't know any of the victims.  I've been to the theater a handful of times...  when we lived there.  A medical office building where I go is very close, but there's no relation, really, to the theater, the victims, etc.

So, I wonder, why did I feel impacted by the shooting more than with other such "things?"  I don't know.  I found myself checking the news or staring into space most of the day.  It will never make sense.

I think, once I broke through the staring phase today and looked again at the news, what I realized is this.  Aurora is a strong community, and Colorado as a state is a strong community.  We have firefighters, police officers, paramedics, physicians, nurses, counselors, and many other people who seem to pull together during times like this.  We have an amazing governor who is everywhere, doing all he can.  We have so many people who want to help.

It's Colorado.  It's Aurora.  It's many places.

Thoughts and prayers to everyone affected by the tragedy.  Thanks to all those who have helped, in any way they can.

In times like this, people will say faith can help people immensely.  I think that's true.  It's time to be in relationship with God, to allow oneself to pause, to be still, to take a step back.

"Be still and know I am God.
Be still and know I am.
Be still and know.
Be still.
Just Be.


Wednesday, July 18, 2012


One of the first symptoms I had with MS was bending over when I ran.  I would start to bend, then more and more, and I could fall.  This was videotaped for doctors who all (except one, and he wasn't a neurologist) said this couldn't indicate MS.  But it did.

Now, over 20 years later, so many things have improved with Ampyra and the Bioness.  But a struggle is the ability to stand straight, which translates into the ability to walk without bending, and walking without bending is made more difficult when pushing a walker forward, since that somewhat naturally makes a person bend.

I told my physical therapist about this bothering me (so if anyone with MS reads this, physical therapists can really help you!) and we spent a session analyzing what was occurring.  There are so many muscles involved in standing - it's not just your leg muscles that keep you vertical.  A big driver are the muscles in the lower stomach and gluteal.

Who knew?  If you are "normal" and just standing, you don't think to tighten these muscles so you don't bend.  When I stand, to get more vertical, I squeeze those muscles.  It's also quad muscles - my right side is weaker than my left, so to get to standing and to strengthen the right quad muscles, I start with my right leg behind my left, and then push up.  Then, to further strengthen quads, I shift from right to left a few times before walking.

It's incredible, I think - all this work to try to get more vertical.  It's work I can do in the summer when it's too hot to walk outside and there's not a lot of room to walk inside.  All this work when others just do this simple action without thinking.

I spend some time watching how other people walk - how they get up - which muscles they use.  It just doesn't seem to take that much to stand and walk.  But then, when something happens, there's the realization that it takes an incredible amount to stand and walk.  And I am lucky to have the opportunity to see how much it takes.

In a sense, having this opportunity is great.  In another sense, it's difficult, watching people and thinking how easy this stuff looks, when it really is not easy at all.  I will sit and think about how people don't realize how much is involved - they get up and go.  When I walk people may make comments like "are you ok?" So I realize there is a long road to go.

So if you don't have MS and read this, perhaps you know someone with MS (besides me) and you can think, when they stand, how much may be involved. 

It's a matter of gaining strength.  It's a matter of getting connections to possibly work again.  And to that end, I read a study this week of some protein (I think - I'm not a scientist) that is thought to trigger something going wrong at points where potassium helps transmit signals.  And that is where Ampyra helps - to connect those signals.

For those of us who are on Ampyra and it's working, we're finding all these broken things and trying to reconnect and fix them.  It's really amazing - from the standpoint of being exciting, but also during those times when we realize how much is involved, how much needs to be fixed, and how much work it has, and continues, to take.  But for some of us, we are willing to attempt those fixes.  It's not easy and often, not fun.  The results may be fantastic.

And since this blog does involve the element of faith, it's taken faith as well.  There are times of happiness, times of frustration, times of being tired, and so on.  There are songs my daughter learned at camp and now I know them.  They are calming.  In the midst of what feels in a sense like chaos trying to be fixed, there is still chaos.  But I can find that time, find quiet moments, to sing those songs.  One is simple, starting with "Be still and know I am God," and then cutting out a piece each time it is sung, so in the end, the word "Be" is sung three times, leaving a person in silence and peace. 

Amidst all that chaos, work to get better, feelings of success, feelings of how much is left, uncertainty as to what is to come, and the emotions that go with this, there is


Tuesday, July 3, 2012

On Fire

June was quite the month!  It was the hottest ever in Colorado.  "We" tied the hottest temp ever here, and "we" did it twice.  "We also tied the highest consecutive number of days at or above 100.  There seem too many fires to count in this state right now.  One hit Colorado Springs, a city, and destroyed over 300 homes.  East of here, outside of Colorado, there were storms that knocked out electricity, and that is not a good thing for the middle of the summer.  Right before the heat, we had storms with hail, so in the current 100 degree heat, people are having roofs repaired.

Recently I heard a story on people with asthma and allergies and how much it affects them.  Selfishly I thought, but, but, but, MS............., what to do because it takes less than 2 minutes for heat to bring a person with MS to the ground.  Not everyone - I suppose I'm affected to the extreme.  My body seems to have no internal temperature control mechanism - if only they could invent a thermostat to be inserted into the bodies of people with MS.

I'm grateful.  I have my home.  A friend of mine who has MS was evacuated because of one of the fires.  Her home was fine in the end and she is back, but suddenly being displaced when you have MS can be very difficult.  She drove and stayed with a friend, then in 1 hotel, then another, and couldn't wait to get home.  I imagine everyone feels that need for home, but with mobility and MS, navigating everything is a challenge, and have to continually evaluate everything while moving from place to place, waiting to hear if your home is ok.....  I can't imagine.  MS causes havoc.

I'm grateful for my home although it now needs a new roof and all our flowers were hit by hail.  Miraculously, they are coming back. 

So although I am grateful for what I have, it has been a miserable month.  I get people to help me load equipment into my vehicle (ok, I admit it, I have a "mom van.").  I stay inside as much as I can.  But it's miserable.  Since for the most part I can't go outside, my walking is more limited.  And as people who know me know, I don't really like to be asking for all this help.

Many people ask what happens during heat?  I have now determined that for me, it depends.  A study recently showed that when people with MS are compared to people without MS and exposed to heat for a very short time, the results are clear.  The core body temperature for people with MS goes up much more than for people without.  This may be because many with MS don't sweat.  I never sweat - this is actually a problem.  Because of this, in the study, the people with MS couldn't walk and they had a hard time standing.  The results were dramatic.  For me, it's much the same.  By the time I get to my car if it's hot, I'm wondering how I'm going to get into the car.

The other thing that can happen is hands and feet get tingly, or go numb.  I was in a meeting and suddenly realized I couldn't feel my pinky fingers and this was quickly moving to my ring finger area.  When I got up - well read the previous paragraph.  It was hard to get up.  It was hard to walk.  And from not walking as much, the "reward" is legs that ache, that ask to walk, even when they can't.

The only good part is it doesn't last long.  In an hour, function somewhat returns.  In 24 hours, generally people are fine.  I'm going to bed feeling like spaghetti legs, and waking up fine.  I like waking up fine.  But the every day cycle is old.

We have 2 more months in summer.  I'm hoping for an early fall.  So are all the people impacted by fires, the people with asthma, the people with allergies, .............., and the smaller group of people with MS.

We (people with MS) will emerge from hiding, being able to feel fingers and toes, not having to worry about heat causing legs to fail, and ready to get on with life.  It's always one day, one hour, one minute at a time with MS.  But when the heat breaks, it's all more tolerable.

And since we are inside following the news, we (I assume) realize how much the firefighters, police, etc are doing, and we are thankful to them.