Sunday, August 28, 2011


Michael J. Fox wrote a book called "Looking Up." I'm writing his Prologue from the "Beth's MS perspective," since there are so many similarities, but he has Parkinson's. People should get his book. He's more of an optimist than me, so rather than "Looking Up," I'll stick with just "Looking."

In part, it's because I've received some detailed complaining lately, and I know I do my share of complaining, but I don't complain about the daily realities of life. It's just how things are.


20 years ago, I might have written about how I woke up one morning and my legs had a "pins and needles" sensation in them, from the waist down. 2 weeks later, it went away. The doctor thought it might be some strange virus that went away. But it was MS. I was 18.

In the intervening years, my life has seen many changes. Most mornings, for example, I wake up with full feeling in my legs - it's just that one of them is jumping and having a bit of a painful spasm that won't go away until I get up.

Technically, my body is only truly at peace when my mind is completely at rest - that is, asleep. As I awaken, my body has already gotten the news. Any chance of slipping back into sleep is lost.

Most mornings, I'm the first up. I sit up and see if my legs will swing themselves out of bed, or if I've wound them up in sheets while sleeping. I sit and consider if I am balanced. Since I've been on Ampyra, I've mostly been balanced (physically). I sit there and contemplate if I can feel my leg muscles. Over the past 2 months (except a few days last week), I can. I push up, wondering if my legs will work. They do (Ampyra), and I hold my dresser while I ask my legs to push up. Then I push up onto my toes 30 times before side-stepping to "the white chair." There I sit and lift up my foot (heel on ground) 10 times. Then I push up again to standing, to the first stop - the bathroom.

I work around things, turn the shower on, and eventually side-step into the shower. Sometimes my legs decide to spasm on and off on the way to the shower, so there is a staggered side-stepping at these times, stepping between spasms, grimacing during spasms. We have a bench so I sit there for my shower. Sometimes, my legs keep spasming so they almost throw me off the bench during the shower.

Getting dressed is interesting. I avoid clothing with too many buttons. There are too many details here, but eventually I get dressed. Then I pull on a bar to get up. Some days this is easier than others... it's done on a count... 1,2,3,4,5.

Next steps - brushing teeth and makeup. I sidestep down the long sink for this step. And then I sit, turn, and see how well I can lift each leg, 5 times each side. Therapy is a continuous thing all day for me. There are still 3 things I need to do for morning therapy: balancing exercises while sitting, bending down while sitting and then sitting up, and repeated standing at the deck railing if there is time. But I digress. It's time to leave the bathroom and get to work!

My husband is just getting up and I say goodbye to my daughter who is still in bed. I go to get in my van, lining up my feet just so and then launching myself onto the seat. I don't make it quite right, so I have to grab part of the seat and pull myself back, but I have to think to use core muscles during this or it simply won't work. When I am "in position," I grab one leg and then the other, move the seat forward, and adjust my legs so they are ok - don't want leg spasms while driving.

And then, finally, I'm off. I consider the situation as I back out. Some days I'm smiling because everything went smoothly; other days I'm not smiling. Some days I'm looking forward to what lies ahead; other days, I dread the day and what people may say or do that can cause stress and lead my body to rebel. On the good days, I can take things. On the bad days, I wonder why people seem to want to make things more difficult, as if I'm not putting 100% into almost everything I do. If they can't see the effort, perhaps they should see the process described here.

So I'm looking always looking. It's an emotional, psychological, intellectual, and spiritual outlook that has followed me throughout my life with MS. I don't feel the aching pain of loss. Physical strength, balance, manual dexterity, the freedom to do what I want when I want to do it, the confidence that I can always be there for my family and others when they need me - all of these have been, if not completely lost to MS, at least dramatically compromised.

The last almost 10 years of my life actually began with the decision to have a baby. I found myself struggling with new dynamics - could I be a parent? How could I be a good parent with MS?

The answer had to do with perspective. The only unavailable choice was whether or not to have MS. Everything else was somewhat up to me - I could concentrate on MS and the negative - rushing in with stop messages some doctors were happy to give me. Or I could just go on with my life and see how things worked out. Over the last 10 years, things have, for the most part, worked out.

For everything MS has taken, there are new directions, ways of doing things, and leaning on God that I would probably not have traveled. So, "it may be 2 steps back and 1 step forward, but after a time with (MS), I've learned that what is important is making that one step count; always looking up."

OK, Michael J. Fox, I'll look up. Now if anyone reads this, go read his book, and see what I did to his Prologue.


Sunday, August 21, 2011

Beginning the end

Tomorrow I officially start "the beginning of the end."

4 years ago I started a Masters program because I was told I needed it to get further in my career. It didn't matter what the Masters was, for the most part. I just needed something.

I explored a bunch of different options - I got to choose what I wanted! I completed about 1/3 of a masters previously before I decided that statistics wasn't what I wanted. So I got to explore. I settled on Public Administration. I'm told the best way to explain it is that it's like getting an MBA, but in the public (ie non-profit/gvmt) sector. I went the route of the "MPA" because it seemed to mix a bunch of things I liked. I wondered if I should do something specific to healthcare but that seemed like it could limit me. So, class by class, one class at a time, while I work full-time and have a family (and the MS beast), I've worked through this.

Rather than being this thing I had to have to go further in my career, the education I've had has taken a life of its own. I've looked at how organizations are structured and really got to think about what works best in different scenerios. I've had some classes in policy, how policy process works, and been fascinated. With each class, there's been a ton of writing. I do love to write but there were some burn out times. And I got to research things in different ways - and the research topics have been up to me. So I've been able to do disability things, but I also go to incorporate religion. I've been able to mix a bunch of things together. I think the 4 years has shown me more of who I am, and pointed me in terms of what I want. It's taught be to embrace thinking outside the box. It's not what I expected.

What I have found is that while I focus on people with disabilities a lot, we are part of a mix. I've learned about Medicaid. I've learned about poverty - I've never been there so I can't say I understand poverty, but the overlapping combination of disability, Medicaid, and poverty is where I've found some kind of passion. And then the 3 split out as well, so there are so many angles.

Through this whole process, I've also been very active in the community in terms of people with disabilities. I network with many people which led me to learn more about Medicaid and poverty. And so I start the final semester, where I get to combine things.

I'll work with the State, looking at a federally funded program called PACE. It's for people who are over age 55, on Medicaid, and meet criteria showing they have significant disabilities, enough to be in a nursing home. But while these people could live in a nursing home, they can also choose to live independently. PACE is one way they can live independently, but also the gives them the ability to participate in a day program up to 5 days a week. They get transportation there and have access to medical specialists, activities, etc. PACE's goal is to keep people out of nursing homes, with some evidence people stay healthier and are happier that way. So I'm going to be looking into this, looking at data which tells how people are doing, and considering policy implications.

So, what started as "you need this" has transformed itself into some awesome opportunities, the ability to think outside the box, and to love learning without feeling as if my life depended on it. I think doing this while having MS has been the biggest challenge - outweighing working and family. It has not been easy. I always wanted a Masters. I thought that having MS would make that impossible.

But step by step, after 4.5 years, I'll be done. I do want more time back. But I've learned so much. My hope is that this may somehow open itself to a beautiful new park of opportunity (see previous post). I think I'm ready to continue pursuing the passions I've found.

Thanks be to God.


Saturday, August 20, 2011

You're IT!

The numbers refer to people in this fun story. So think 1=Person #1, 2=Person #2, etc.

An interesting game of tag and the planning for it.

1 - "Someone has decided that you, 2, are IT."

2 - "So I assume we're playing dodgeball?"

1 - "No, this person, we'll never know who they are, said tag. And they said you are IT. They must think you can handle it. Will you be IT? We have a number of other games and different people will be asked if they will be IT for those."

2 - "Wow - I really thought this was about dodgeball which I think I like better. But I suppose I'll be IT in the game of tag, if that's what someone wanted."

1 - "Are you sure this tag game should occur? Are you sure the person really wanted a tag game? From your gut, do you think something happened causing people to have to play this tag game, where you are IT? Really, in your gut...?"

2 - "Yes, that's what they want. Tag is the game and I am IT. They are right. I just didn't want to play and be IT"

1 - "Well, what did you plan on doing about it?"

2 - "I was going to try to find a place where we don't have to play these games, because this tag game is different - it's hard and it's no fun."

1 - "OK, let me look into who else needs to play. #3 will let you know."

Game begins........

3 - "OK, we're all going to play now, but what do you really want? I don't think you wanted to play tag or to be IT, so did you really want to have a big treat at Baskin Robins, or did you really want someone to say you might win at tag, so let's not even play?"

2 - (confused) - "I don't want ice cream and this whole tag thing has me confused. I'll draw you a picture. See, here's this beautiful park. I wanted everyone to get along and go there together. That's it. It's about getting along and being together."

1 - "Oh, I get it. I really do. I get it. Unfortunately, we must finish tag. You have to be IT the whole time. The people you tag - well, you're still IT and until we decide otherwise, they're still fine. But keep trying to tag them. That way, we can say we all played tag, and whoever the person is who wanted it played, maybe they'll see."

2 - "This is exhausting. Can we just not play and go to the park, even if we need to be separate?"

1 - "No, unfortunately we have to play tag."

and this goes on and on and on.

2 wants the park. 1 has been told to avoid the park at all costs, play a lot of tag, and make 2 exhausted.

4 - "Hey 2, CALL ME."

2 - ?????????? Perhaps there's a different park somewhere, waiting to be explored.

Tuesday, August 16, 2011

Joining the Movement

"Join the Movement" is the trademark of the National MS Society. We all move in different ways, and by different means. We value any movement, and we hope that we keep being able to move, or that the ability to move, in whatever way, may somehow improve.

I've had this improvement in movement which I've never had since my MS started about 21 years ago. But yet, life goes on. MS is still MS - heat still really affects me, and stress really affects me as well. Ampyra has helped with so much, but it hasn't helped with heat tolerance. And though it has helped when faced with stress, everyone has their limits, and stress will still impact MS.

With stress, I've noticed I'm exhausted - not in the physical sense, so it's hard to explain, but it's a different type of exhaustion. I may drink more coffee to ward it off. Yesterday was spasm day - my legs jumped like they wanted to walk, which hurts and is annoying in a strange way. But today I actually took a nap! Yesterday, it seemed that within 15 minutes of sitting, my legs would spasm and I would have to get up. Today my legs ache - this dull ache - like when one has the flu, but just in my legs. I can still move. I'm still in this movement, still maintaining the same movement.

During these times, I've spent some time looking up, trying to ask God something, but I'm not sure what I'm asking. And so most of the time, I just look up. And there is a presence that will pull me through - I'm just not sure how. Times right now are hard for many people, in different ways, and we'll all be pulled through these times.

So I continue to move; I've joined the movement so I won't give up moving, even if it has to be through some spasms and pain. It's still the same movement - improving. There's just a "silent" component I'm battling. I think the "silent" components are most difficult in terms of people knowing, understanding, etc.

And when I spend the time to look up, I think God knows I should take some time in quiet, away from the chaos, to rest. I think, I hope, that taking the time out, allowing rest, will bring continued movement, but more importantly,


Wednesday, August 10, 2011


They really are gifts - each one has brought joyful tears (others don't see the tears - it would ruin my "image" :) )

The gift of music.
I went to visit a friend who gave me 2 CDs - one has 100 piano pieces. I am drawn back to my days as a pianist. I started in first grade, insisting that since my older brother took lessons, I should, too! Of the 3 kids, I continued through high school, practicing about 2 hours each night my senior year. On the CD, I found pieces I had played. Chopin's "Waltz for Piano No. 1 in E flat" - it's a dance, as if doing small leaps. Debussy's "Arabesque for Piano No. 1 in G" is like gentle waves. Mozart - always my favorite - I listen to the Sonatas and remember them. Strangely, the piece by Chopin brings me to tears. An unexpected CD from a friend brought music back. MS might have taken feeling away in my fingers, but I wouldn't be as good anymore anyway. The fact I played the pieces - that can't be taken away. Nor can the emotional feeling I get from listening to them.

The gift of balance.
We went for a picnic, prepared by my 8 year old daughter. Imagine - PB&J, yogurt, salad, and juice boxes. "Let's play frisbee!" Really? Do we have to? I'll just sit there and if I'm lucky the frisbee will hit me in the stomach and bounce off. I won't catch it. But I have the gift of balance. I sit, I reach, and I don't collapse. And then... I catch the frisbee! It doesn't just bounce off me. Do we have to leave? I can catch now!

The gift of today.
14 months since steroids. We're almost through summer. I think I may make it through the heat. So today, I celebrate.

God is smiling.


Saturday, August 6, 2011

The Times of our Lives


Joy. Happiness. Laughter.
Pain. Sorrow. Tears.

We all experience these. Perhaps when we share, we learn how we may be experiencing them all simultaneously.

Time with a friend.

We share accomplishments we have made in becoming physically stronger. We start with that.

We move to other subjects. We discover that despite different lives, we're in the middle of some things we never expected. We're dealing with them. We see that there seems to be a ripple effect - one thing after another, trying to bring us down.

We return to our accomplishments. We find similarities. We are different, yet we find that we are each becoming stronger and we each work at it. We share different versions of exercises - what was once really hard that has become easier with time.

We find our way back to the pain. We didn't expect this. We thought we knew people better, and we thought we could trust a bit more.

Now we're back to exercise, but one person is doing a demo on the floor and I'm showing my little leg muscles and how I can kick.

Pain. Sorrow.
Tears. We find tears. Things hurt and we can't believe it.

Joy. Happiness. Laughter. This is the important stuff. It's important to not let the other stuff take over the best parts of life.

Two different people with different stories, each bringing with them pain, sorrow, tears, joy, happiness, and laughter.

We have been down different, yet similar roads. We struggle with the difficult. We cling to the good.

Most importantly we share.

We are not alone.

These are the times of our lives.


Monday, August 1, 2011


This past week I went back "home," to "Ft. Fun," aka Ft. Collins, to visit. I think Ft. Collins will always be home, but the longer I’ve had MS, the more difficult it has been to go back there, to navigate things that used to be so easy – things I took for granted until they became difficult.

The last time we were there was Christmas, after I had started Ampyra, but things were (and still are) difficult. When I'm where I live now, I have routines, ways I move about my house. It’s adapted for Beth. I can walk a lot in my house. It's "easy." But when I go anywhere else, things are never easy. In certain places, I develop my own way of getting where I need to go in a routine kind of way – say at church and at work. So in those places, I can be more "functional." Functional is just that – I can function walking, and the people there generally know me and how I "operate," or maneuver around the world.

This time in Ft. Collins certain things were still very hard. We went to lunch at a place where I had to walk a bit to get there, but I did make it. Then we went "home." That's always difficult – there are 2 big steps to get inside and the steps being so big seems to be the problem. Then it's summer, so there was the combo of already walking a lot, the steps, and the heat. Somehow I, or we (team approach!) made it. It was the next day when I realized that on other trips, I had used Nemo, the wheelchair. But Nemo stayed in the car, as I (or we) found new ways to navigate.

For those who have never lost any mobility, it's interesting and fascinating when it comes back. Mobility doesn't just "Pop!" come back. Muscles come back, but using those muscles is actually different. There's a transition to learning to use those muscles, to test them, to see if they are there. So over a few days, I was testing. When it was difficult to push or pull myself up, I might have failed once. But now, I instruct myself to push on specific muscles, generally my quad muscles, to pull up. After the quad muscle, I have to think of hip muscles contracting. Otherwise my legs straighten, but I am bent and can't move.
Many times I find myself doing this – reasoning through something. There are times now when I find myself "in trouble." But then I think wait, how can I get out of this? Is a leg crossed? Can I “uncross” the leg? How? Do I need to call for help? Before Ampyra, there wasn’t time to call for help. Now my legs can hold me in an awkward position and I have a bit of time to wait… for help, or to figure it out on my own. There are times when I do have to figure things out on my own, and usually I can. It’s not graceful, but I suppose it’s a new “functional.”

So as I went through the few days, I was thankful. Yes, nothing in life is ever easy. Everything I do requires thought - a big extra step when I think of how to move.

But then I realize I can do this. I can navigate.

Life is good. We are all held and loved.