Thursday, July 7, 2016

The 3 year view

On July 1, I became a member of Kaiser Permanente again, after being gone for three years.  For those who are not in the Colorado area (or another area where Kaiser is), Kaiser is a different system...  Basically there is regular insurance where you have a set of providers, pharmacies, radiology, hospitals, etc. you use.  Then if you have Kaiser it is a completely different set, but it is all linked together really well, so your medical record is all under one roof that can be seen by your primary care physician, any specialists, any pharmacists (because the pharmacies are Kaiser pharmacies).  And you can order all medications from one spot, the same spot where you can email any of your providers...  it is an integrated delivery system and after spending three years away from it, I am grateful to be back.  Note: it takes a lot of technology to link all this together.

I will miss my neurologist who is outside of Kaiser - he was one of only two neurologists I have ever liked.

So that is the background!

Today I went to see my rehab physician who I had seen for many years before I took my "explore the world" break from Kaiser (I don't know that I would encourage others to explore the world after I did so - it was confusing!).

Three years - he could look up where I had been in terms of my health from three years ago (another cool part of Kaiser!).  And then he could do the usual tests and compare.  He could put my prescriptions into the system and I can set them all up through mail order, through the same interface where I can email my physician, etc.  Cool stuff.

The tests: One test is to, while sitting, simply left up onto your heels.  I had lost this ability.  But my feet popped up!  And he pushed on my toes (to see if I could hold them up) and they didn't just go down.  It took a bit of pushing.  My grip strength is normal - I knew this because I can write with a pencil now which for those of you who have never had grip strength affected - it takes more grip strength to use a pencil.  And when seated, I could lift my legs up, which means muscles called hip flexors are working a bit.  I couldn't do this until pretty recently.  And....  and...  and... (the excitement of my new tricks!), I was sitting on an exam table and could hold my arms up and out for him to test their strength.  The exam table is a key term because I could lean back on something.  It takes core muscles to "let go" and hold your arms up.

I pointed out to him the things I couldn't do previously and though he said he thought I was correct, there wasn't the excitement generated as when I am writing this blog and smiling.

I also got to ask him which muscles, specifically, aren't working correctly and make me walk, well, in a goofy way.  And since he is a rehab doc, that is his specialty and he explained it so I understood!  I have the weak hip flexors which are basically on the top of your legs (above your quads).  But then there are muscles on the side of your legs, also by the hip flexors.  To stop my leg from swinging a bit around, those have to be stronger.  They also have to be stronger to walk straight.  And then my leaning which was one of the first things that was wrong before I was diagnosed...  those are my lower back muscles.  And that give me more understanding and direction.

Then he asked, "so why do you do all of this?"  If a random person asked me that I would tell them it is none of their business!  And I hadn't thought of it.  _Why_ do I do all of this.  And my answer just came out: "because I love it!"  I do - I really do love this stuff.  Part of it is I never thought I would improve - I thought I would continue to gradually decline.  But a larger part of it is the mindset I have been given - a stubborn runner mindset.  Once an athlete, always an athlete.  Once a runner, always a runner.

And you just never know what your body can learn to do again - like a baby learning to walk.  Never say never seems to be my theme.


Saturday, June 11, 2016

Using our gifts

This past week I was sitting in my van in front of my daughter's dance studio, knowing I had to get out and go to a meeting there.  The problem was I was in the middle of a huge storm - rain pouring, lightening everywhere.  Minutes earlier the thunder had been so strong that my van shook.  And I hate lightening.  How was I going to do this quickly?  How could I possibly move quickly enough to escape the lightening?  I opened the van door where my walker is.  Normally I would get out of the van to retrieve the walker, who I named "Bart" years ago.  But this time, with the lightening seemingly on top of me, I decided to try to pull Bart out while still seated in my van.  I reached back, grabbed Bart, and slung Bart to the ground.  Bart was still collapsed like a baby stroller so while still seated, I opened Bart.  Then I determined not to turn on my Bioness robotic devices, which send signals to my legs, until I made it past the open area of the parking lot, convincing myself the Bioness signals would attract the lightening. With all set to go, I "launched" myself out of the van, and walked a bit to the covered sidewalk where I then turned on my Bioness devices and went into the meeting.  Yes!  I made it!!

6 years ago that would not have been possible - getting Bart out of the van like that without throwing myself out at the same time... and walkng a bit without the Bioness devices or some braces on my legs.  6 years ago was the last time I went on steroids for an MS attack.  Those happened to me every few months - all of a sudden my MS symptoms would get worse.  50 feet was all I could walk and each attack made things worse because I didn't fully recover. In late July, 6 years ago, I started taking the drug called Ampyra, designed to help with walking, and since then have only made forward progress, no MS attacks, still using Bart to walk and wishing I didn't need Bart, and still dreaming of running without Bart.  In the 6 years I have regained a lot of balance which means I can pull Bart from the back seat while still sitting in the front seat. It means I can walk around a track, I can stand straight, I can go to physical therapy twice a week and walk up to 2.0mph for 16 minutes on the special treadmill there...  I am more independent.  I can also write again, having almost lost that ability, and I can ski without having my hands basically taped to the outriggers that I use to ski.  Independence.  I can wiggle my toes and when I think I am losing my balance, I can push my toes into the ground and regain that balance.  This is relatively new - using my toes for balance.  The things I didn't realize I had lost - I have so much of them back and there are probably more things.  I am stronger overall and though progress at times seems slow and I want more now, I am still making progress and that, after about 20 years of decline from attack after attack after attack, is, in my mind, when I sit back and think about it, a miracle.

Yesterday I watched some of the speeches given at Mohammad Ali's memorial service, after his recent passing.  I was struck by those and felt I related.  Billy Crystal said Ali built bridges instead of walls and that is important.  As we face things in life, it is important that we build bridges, and in my small way, I hope I do that by reaching others to tell my story.  I was talking to a friend recently about my blog, and how although in a sense it has been my diary, it has also been a mechanism to reach others to tell possibilities, along with frustrations, and to consider how I move forward, how I live life to its fullest and as Ali did, how I can build bridges by telling my own story.

I listened to what Bill Clinton said about Ali:

“He decided that he would not be ever disempowered.”  

“He decided that not his race nor his place nor the expectations of others — positive, negative, or otherwise — would strip from him the power to write his own story.”
“May not be able to run across the ring anymore. May not be able to dodge everybody and exhaust everybody. And he’s bigger than ever because he’s a free man of faith sharing the gifts we all have.  We should honor him by letting our gifts go among the world.”

When I shook Bill Clinton's hand in meeting him once, and couldn't think of anything to say, perhaps saying nothing was fine.  Perhaps he sees people with their own gifts, just as he saw Ali continuing to give throughout his life.  We all do have gifts to share, and we all can build bridges.

And so in this time, these 6 years, I think I have been sharing my gift - the gift to tell my story of the seemingly impossible - how I started from nothing and have come so far.  This blog shares my story.  And I hope that moving forward, I have more to tell, and more bridges to build.


Tuesday, April 12, 2016

MS Walk 2016

The letter I sent to everyone who donated last year.  Progress update and request for donations!  Thanks!

Dear Family and Friends,

Feel free to forward this email!  It’s time for the 2016 MS Walk!!! You donated last year and thank you so much for that!

The MS Walk this year is Saturday, April 30, in Denver’s City Park, and this year our team will start walking at 8am sharp, before the heat!  (They are adding a running race and our team is going right with that race because I am once a runner, always a runner, even if walking!) 

I am asking you, again, to sponsor me in the walk so that one of these days I really can run, outside of my dreams.  Here is the link where you can make an online donation (and on it there is a video with me in it):

You can also donate by sending a check (made out to the MS Society) and mail it to me at
                Beth Newsom
                20860 Sussex Ct.
                Parker, CO  80138

You can also walk at 8am sharp with our team!  We are going to have fun walking at 8am before the heat hits!!!  Email me back if you want to join the team.  It will be fun and we will be done early.

What progress has been made this year for attacking MS?  On a personal level, I’m still not running…  but I am walking at 2.0mph on the treadmill 2 times a week, wearing a cooling towel and having a fan blowing directly on my face to keep me from getting hot, because heat destroys me.  I have been doing this for 2 years now and started at only .5mph.  And I stood straight (without bending) at my physical therapy evaluation last week for the first time!

Perhaps my biggest progress this year was made in my ability to write.  I was close to losing the ability to write almost 6 years ago when I started taking Ampyra (the medication for which the MS Society was integral in providing funding in early clinical trials)  Ampyra is supposed to help with walking.  But Ampyra helps other muscles, like hand muscles.  The feelings of getting something back that you didn’t ever think you would lose cannot be described in words.  There are times I look at my writing now and think, Wow!  That looks really good and was so easy!  To go along with that, I sit-ski and used to have my hands attached to parts called outriggers.  This year, my ski instructor all of a sudden asked me why I use the special gloves that attach my hands in place.  He tested my grip strength, rolled his eyes, and said, "You don't need these!"  I have grip strength again!

So many improvements are invisible, but I continue to improve.  Someone asked me how many times I had fallen recently and I gave them a strange look - fallen?  Oh yes, I used to fall.  I used to fall a lot.  I haven't fallen for a very long time.  Life is good.

Beyond my personal life, the MS Society uses funds from the walk to help advance research, but also to provide programs and support to those living with MS.  Recently the MS Society partnered with Excel Energy to provide energy assistance to those with conditions like MS who cannot afford to pay for air conditioning in the summer.  This is important because people with MS cannot tolerate heat and need air-conditioning during hot summer days. (We are also walking at 8am so it won’t be as hot!)

I am looking forward to Saturday, April 30, in Denver’s City Park.  You can donate or walk with team “May You Dance” – I have been the captain of this team for quite a few years now.  If you want to walk with us, please email me as we have arranged specially to start at 8am.  In addition, personally I want to start with the runners instead of watching them cross the finish line while I wait to walk.  Once a runner, always a runner!
Remember: no gift is too small!!!  Please donate:
Thank you!!!
Much love,
Beth Newsom

Thursday, February 11, 2016

I don't want to be here...

February 11, 1993.  Didn't want that.  Didn't want to be there.  Didn't want to hear "we think you have  MS."  Didn't want to feel like lying on the floor and curling into a ball.  Didn't want to go back and have to tell people.

Where to go?  This isn't where I intended to be.  I... had it all...  Certainties disappeared.  How could I be any use now at all?

But I went on.  I stopped playing the flute.  I sang.  I didn't run on the cross country and track teams.  I double-majored.  I did a marathon.  I kept going.  It still was horrible, to be honest.  Yes, there are many worse things.  But it still was horrible.

In moving on, I realize now that back then, when I did not feel like doing something, that is exactly when I needed to do that something.  I didn't feel like meeting with the minister on campus but something drew me there.  We prayed.  I didn't want to do that.  It sounded corny...  praying. But then, in the middle of prayer, that was where I needed to be.  That was where I found relief.

My mom, little brother, and I went on a hike.  It was misting that day.  It was a long hike.  I don't think any of us thought we would make it to the top.   Yet as 2 of us might want to quit (and not be there any longer), there was always 1 who wanted to continue.  And so we made it.  Through all of that doubt, we made it.  And it was beautiful.

Many times when I haven't felt like going to church, but have gone anyway, I find that is where I should be.  I find a message or something small that leaves me thinking, this is where I need to be.  Yesterday was actually one of those times.  It was Ash Wednesday and I was so busy that I did not want to add _going_to_church_ to my list of things to do.  But I went.  And I found my break from a day that felt too busy and chaotic.  I found peace in the midst of a day of chaos.

The same is true for physical therapy (PT) and exercising on the treadmill.  I have been at this for almost 2 years.  Whenever I feel great, the treadmill never goes  well.  But when I don't feel like going, when I don't feel like I'm going to do well?  Those are my best days.  I never see them coming and sometimes even warn the therapist that this might not go very well. 

So I continue to look.  Where don't I feel like being, but yet something is calling me?  I generally go.  In all these years, 23 since my "probable MS" diagnosis and 26 since it began...  All those places I didn't want to go and things I didn't want to do?  That's where I needed to be.  I pushed running until I couldn't take a running step.  And you never know so no, I still have not given up and never will, that one day I will run again.  I still run in my dreams and am counting that!  I continued to walk without using something to help until I was at my car one day and couldn't move.  I didn't want to do use things like walking sticks but I did.  I didn't feel like running so many days but I did because time was limited.  Can you run?  Run for me.  Tell me about it.  I love hearing running stories.  It brings me back to it.

Today. February 11.  So much has happened in 23 years.  I keep improving especially on the days I just don't want to start.  Church is my sanctuary. God is all around us.  Pay attention.  God has been holding me for 26 years of this body not working quite right.  And so, though I don't want to be at this day again, here I am.  And I am moving forward.


Thursday, December 31, 2015

Finish it.

So many people make New Year's resolutions that are gone within less than a month.  I used to do that, and always found the resolutions slipped away.  This year, instead of creating resolutions, I am going to relax and enjoy the year I just completed.

You see, MS really does change everything.  Even before MS entered my life, I was on the brink of things that became impossible due to MS.  As a junior in high school, we won the state championship in cross-country, and  I finished in the top 15 or so.  But at that meet, even with us winning and me placing well, I didn't feel 100% - I didn't feel like I gave it 100%.  That spring I placed second in the 2 mile, qualifying for state.  It was really unknown whether I could get in the top 2, given the field of runners.  I started in front and led the whole race before fading while my friend raced past me in the final 200.  I was ecstatic to get second!  Who knew I could do that?!  Another friend of mine got sick during the race so I am told that people were either attending to her or celebrating the victory of my other friend who passed me.  My coach at the time, Jean Ann, was probably the only one who came up to me after the race.  She said, "you know you could have won that race, right?"  And that continues to follow me through life.  My coach Jo Ann later got ALS and her baptismal journey was ended when she was only 44.  And then the following year I was set to run a race under 19 minutes, but after coming within 10 seconds, MS had crept just enough to end my "under 19" dream.  The next spring's track season was somewhat mediocre but I was headed to college which was an exciting time.  But college running was filled quickly with failure, as I didn't make it through the cross-country or track seasons.

So there has been this "not quite there" state of reaching goals in my life.  I have done some things.  I finished my masters program; I bicycled up Vail Pass; I swam a mile.  But these didn't feel the same.  I could finish so much but it wasn't the same athletically as the failed mishaps in running.

But then there was this year.  My goal was to do the best I could do in PT and get as good as I could.  And what makes this different than the other things is that my MS hasn't gotten worse.  In fact, I have grown stronger.  It has taken all year, but I have made advances.  I can stand straight, finally.  I am walking 1.9mph on a special treadmill at PT, which is faster than I have walked since the downward progression of my MS.  On the last session of PT this week, I did the 1.9mph and made it.  Through my head while walking are thoughts of "you have to fight through this," someone has got to win, and "you could have won that race."  These thoughts allow me to break the walking  into small pieces.  And I made it.

But there was one last thing.  We have a treadmill at home and I have been increasing the time I have spent on that.  I had walked for 15 minutes straight there twice, and I wanted to finish with a third time on New Year's Eve.  This made me nervous because it could become one of those things I just couldn't make.  So I broke it up, minute by minute.  Right at 15 minutes I stopped the treadmill.  Done.  I finished.  You never know how far your body will go.  But this cycles back to all the things that have haunted me and to which I think I did not finish.

Finish it.  This time I did, with Jean Ann urging me ("you could have run that race") almost every time.

Finish it.

But those Christmas card left...  I have done some but have run out of stamps.  That project just may not get done tonight.

Finish it.  The walking part.  and move onward!
And  Happy New Year, all.


Thursday, December 24, 2015

In the silence

Every morning I wake up early, get a cup of coffee, and sit alone, in the silence, contemplating whatever is on my mind at the time.  When the weather is nice, I sit on our deck and listen to the birds.  During the winter I sit in the dark kitchen.  I enjoy this brief time I have to myself, with my thoughts (even though I generally don't like to be alone), purposefully leaving my electronic device somewhere else.  The only interruption, usually, is our cat who meows because he like to hear himself talk a lot (I think).  In the process of writing this blog entry, he has attempted to wake the entire house, despite my offers to call him, pet him, and hold him. But I digress.

Lately I have been remembering my godparents and in particular my godfather.  Though we never spent time with them in a religious sense (except my godmother Helen who would send me religious cards and constantly praise God, and when my brother and I were confirmed and our godparents all journeyed to Denver to celebrate the occasion), they had a huge impact on my life, always there, always.

One set of godparents lived about 10 minutes from us and had kids about the age of the kids in my family, and we spent what I remember as every Thanksgiving and every Christmas with them.  My mom's parents lived far away and I never knew my dad's parents (only that my granddad baptized me).  So this gathering really felt like family and we had great times.

My godfather, one of the gentlest and kindest people I will ever know, was known to our family as the best cook...  ever.  Every Thanksgiving and Christmas we anticipated what new appetizer he would make, enjoyed "his" special potatoes, his" sweet potatoes, and "his" fill-in-the-blank.  At their house (which we preferred because they had a basement where the kids could retreat), I remember him always choosing the (classical) music, deciding on wine for the adults, and pouring the wine. He always seemed so calm in putting everything together right before we ate, at a time that can create total chaos.  He was often the calm in the midst of chaos.

At the end of each meal, the kids had to plot to be "excused," so we could go to the basement to play a game, or watch a movie, or do whatever.  It had to be just the right moment - if someone asked too early, then we would have to sit for longer and listen to the adults talk about something boring.  So we would exchange eye-contact - who was going to ask, and when.  Then we would politely (so as not to have to sit again) get up...  and then Dart!  To the basement!!  These were the best of times.  At the end of the night, it was my godfather who would come determine if the movie we were watching was done and if we were ready to go home, or he would make us aware that it was getting late.  He was always calm, the voice of reason.

Outside of our twice-a-year traditional gatherings, he taught in my dad's department and my godmother taught in another department, while my mom taught at a different university.  We were the kids of the university professors, and so I suppose we had the same sorts of schedules, meaning our parents tended to have the same breaks as we did.  So we would see them at other times.

One year, when I was an adult just after graduating from college, their family found what seemed to be a kitten huddled in the back of their garage.  They rescued the malnourished kitten and brought her back to health, to discover she was old enough to be pregnant.  Right before I moved back to Colorado, her kittens were born and they gave one to me.  He was a very special cat who died too young, but we had special times.  They kept the kitten who was born with 3 legs, but who outlived all the other cats in that family.  Like me, they were "cat people."  We love our cats.

Etched in stone is the image of my godparents walking hand-in-hand down the bike path that was very near their house - the same bike path where I often rode my bike, ran, or walked.  My mom and I would walk on that path almost every night during the summer when I was in high school and college.  But that was the image of happiness - my godparents hand-in-hand, not in a hurry at all, walking along that path.  They never saw me watching this - I didn't want to disturb what seemed special.

Near this Thanksgiving I had a moment of panic.  I was making "his" sweet potatoes (we continue his" recipes! but where was the recipe?).  Crisis!  I called my brother who didn't have it but told me to give him a call.  So I did and he told me I was lucky because most recipes now are with his daughter.  Yes!  The tradition could continue.  We went to my brother's house with "his" sweet potatoes and my brother made "his" mashed potatoes.  Our daughters sat through dinner and at some point made the move - "can we be excused?"  And then they retreated... to my brother's basement.  And the rest of us continued our adult conversation (which I imagine thegirls considered boring). And so the cycle continues.

A few days later my godfather was hospitalized.  I went to see him. Although he never opened his eyes, I held his hand and sensed a connection.  He knew someone was there - he probably didn't know it was me but it was someone he knew.  As I was about to leave, not realizing there was a connection because he had taken his hand away from mine, he reached out and took my hand, in the gentle way that perhaps he could only do.  And some time after that, I left and told him his daughter would be there the next day. And she was.  Thanks be to God for that.

I often have regretted not seeing someone at a time when they needed to be seen, not sending a card when a card needed to be sent, and not being able to say "goodbye" to someone.  But with my godfather, I got to talk with him days before he was hospitalized.  I got to see him in the hospital, to hold his hand, knowing it was probably the last time, and to tell him that I loved him.  Moments like these are where we find God.  In the silence.

Merry Christmas.


Tuesday, December 1, 2015

... pause ...

Where I work there was some confusion about when time needed to be taken off by the end of the year.  Turns out the end of the year is December 12, and I had 2 days to use.  I took them last week, during Thanksgiving break.  My daughter was out of school so that seemed ok.  But what I did not expect was to realize, in the process of these days, that my body needed a break.  Funny how when forced to pause a bit, with no plans, you can realize that pause was what was needed.

What I had not realized was a bunch of stress I had was triggering migraines that did not want to leave.  Continuing to look at the computer screen was not helping.  Yet when leaving for a few days I wanted to take my laptop with me to get some work done at home.  I talked myself out of that.  Something told me to leave everything and take a break.

With that break, migraines decreased.  There was a feeling that a migraine was just sitting there, waiting to be triggered, but those feelings diminished.  I had to take a day off from the treadmill due to the "migraine about to happen" feeling.  It's a ticking feeling in my head that is hard to describe.  It's a reminder that the migraine can return with one bright light, one loud noise, or something else.

And so what did I do with the pause time?  I realized I am not used to it.  My daughter had no activities so there was nowhere we had to go.  There was no reason to wake up early.  Usually I get up early even when not working due to leg spasms, but those just didn't happen, so I found myself lying in bed at peace, paused, and finding it very strange.

We went to the mall.  We didn't have a big reason to go which was also strange.  We meandered, not really feeling comfortable without some kind of agenda or list of things we needed.  We discovered that Black Friday sales really start the whole week beforehand, when stores are pretty empty.  I walked on our treadmill at home and felt good.  I thought a bit less about work and that is a good thing.  Family time.  I realized the importance of being with family.

I watched perhaps too much of the news and got annoyed, bothered, frustrated and sad.  I got to send messages to Facebook friends more regularly and have missed that connection source.  I got caught up on some phone calls that always seem to accumulate.

I thought more about what is most important in life.  In the end, going full-speed at work is overrated. Spending time with family, meandering with no place to go, and doing general catch-up is a good way to find that pause.  I tried to explain that to someone today but they didn't see it.  Maybe some don't see it?  I have a few close friends who have very significant health concerns right now.  I want to be with them.  I pause to reflect time spent with them, one who knew me when I was born - our closest family friend - all those good times we had - the laughter, the smiles, knowing I could always count on them for support.  Pause.

This was right as we approached Advent - a time to watch, wait, listen - and I experienced it a bit early.  The work of God is everywhere if we just pay attention.  And now we are here - Advent - a time when pausing can continue, as we look around us for glimpses of God.  And those glimpses are everywhere.