Saturday, June 10, 2017


Today is such a big day.  It is my parents' 50th wedding anniversary.  It is also my daughter's dance recital and the first time she has a real dance solo (Scuttle from The Little Mermaid).  So it has been a very hectic week as she is also in a musical theater camp, so I have gone between camp and dance dress rehearsals, work and physical therapy, all as summer hits, the temperature rises, and I find myself in situations where the air conditioning doesn't seem to be working, and my whole body is numb.  And I go on.  But 7 years ago so much was different - this week would not have been possible.  My daughter is 14.  7 years is half of her life.

The big thing is that 7 years ago today I went on steroids for the last time - it was the last time I had an "attack" - when things get drastically worse all of a sudden - walking becomes impossible - energy is gone - standing may or may not happen - a lot of time is spent "connecting" with the floor.

But then I went on Ampyra which works for only about 30% of the people who try it.  And I felt my balance come back.  And my legs felt stronger.  And I began to be able to stand straighter, and walk further.  Then I got Bioness devices for my legs which help me to walk.  Then I could write again.  Other things work better as well.  I started physical therapy.  I went from only being able to walk 50 feet to walking once around the track in an hour.

Things continue to improve.  I now walk around the track in under 13 minutes.  I keep improving to this day.  I have the energy to make it through this week.  My daughter knew me for 7 years getting worse, and for 7 years improving.

I am grateful.  I am grateful someone asked me if I planned on trying Ampyra.  I am grateful for the physician who jumped through several hoops to get me on Ampyra.  I am grateful to my family and friends who have always supported me.  I am grateful to be here today, watching my daughter dance, doing what seemed impossible, and continuing to move forward, on my journey, with God there along the way, through the bad, the good, and the impossible.


Thursday, April 20, 2017


My stomach didn't feel quite right throughout the night as I tried to sleep in a hotel on a work trip this week.  When I awoke to get ready for the day, not feeling quite right, I went to the bathroom, in front of the sink, to stand.  But instead of standing, my feet slid under me and I landed on the floor.  This really was not how I planned to start the day.  And then I had the realization that I had a fever. Fevers with MS mimic having an MS attack, where all of a sudden, a person can't walk.

There I was, on the floor, in a strange state of wondering what exactly I should do next.  Gone was the strength to pull myself up onto my wheelchair (I use a wheelchair on things like trips, for longer distances, etc.).  When I removed the cushion from my wheelchair to make the seat a bit lower, I still wasn't strong enough to pull up onto it.  My cell phone, in case I wanted to call someone to help, was in the next room, seemingly a world away.  Eventually I dragged myself to a lower chair in the bedroom, rested, pulled onto that chair, rested, took Tylenol, and eventually re-started the day, a day which was slower as I struggled with a stomach bug and keeping my fever under control.

What this reminded me was the uncertainty that MS brings.  While a fever caused me to suddenly be unable to move, that is because I have probable MS and cannot tolerate the heat.  MS itself can cause someone to wake up one day and be unable to move, for no reason, out of the blue with no warning.  I have been very fortunate to not have had an MS attack in almost 7 years, to be getting stronger, to be able to stand up each day.  And now I am fine - the fever is gone.  But this was a stark reminder of the unpredictability of MS, and the need for more research toward either a cure or a vaccine.

The good news is that you can help!  I am raising money, as I have done for quite a few years, through the MS Walk which is held May 6.  You can sponsor me by using this link to donate:

And, on this link, you can see a picture of me running in college!

There are also good things that have happened this year in the search to eliminate MS:
- For me, with Ampyra and physical therapy over the past almost 7 years, I walked under 13 minutes one time around the track.  Yes, I am the only person I know timing myself doing laps around the track using a walker! To put this in perspective, I used to only be able to walk 30-50 feet.  After I started taking Ampyra I walked around the track in an hour.  Gradually I got faster - 40 min, then 30, then 25, then 20, then I wondered if I could walk it in under  15 minutes, and I did.  And now I have walked it in under 13 minutes. 
- At physical therapy I am now walking 2.1mph for 16 minutes in a row.  To put this in perspective, I started 3 years ago walking .5mph for 5 minutes.  Zoom!
- This year I started to be able to color using pencils.  Seems simple. Before Ampyra, I had trouble writing at all.

- The first therapy to slow the course of MS for people with all kinds of MS was recently approved by the FDA.  This treatment is the first treatment to slow a cruel form of MS called Primary Progressive MS, which is a type of MS that gets continually worse from the time it starts (whereas other types of MS have remissions - times when people do not get worse).  This is the biggest breakthrough in years!

As always, thank you so much for your support, which many have given over many years.  I continue to hope that through each and every donation, there will be a day when no one has to hear the words, "You have MS."


Saturday, December 24, 2016

Through the noise

Last Christmas Eve I wrote about finding silence with my cup of coffee each morning, and thinking of my godparents and how they were great role models for me, and how last Christmas was the first Christmas without both of them.

I really did love my morning coffee and quiet time. After an iron deficiency problem was identified, triggered by my diet of too much coffee and dairy, not enough foods containing iron, and resulting antacids to combat the too much coffee, I gave up coffee, which meant no more antacids......  But I miss my period of silence in the morning and instead find myself trying to get a bit more sleep and then rushing to get ready.

Earlier this week I had a somewhat panicked feeling - a friend of mine decided to stop what had become absolutely miserable chemo treatments and choose quality of life over quantity, which means that she is now in hospice.  I hadn't heard from her in more than the usual time period in which I hear from her, but I didn't want to bother her either, knowing there is a ton of fatigue and pain right now.  I finally did reach out and there she was - sending me a message back that she is ok, has pain and fatigue, but it is being controlled as much as possible.  I struggle with this - not wanting to ever lose my friend, but yet knowing that life never goes on eternally here on earth.  But I have my friend for this Christmas, while I remember loss last Christmas.

Advent does tend to have this strange cycle for me - we should experience joy, and some years I do, and yet other years not so much, and this year seems to be a mix.

This year my daughter started doing competitive dancing which makes me feel always on the go to something, between that, working, and trying to keep the house so we can still see the floor.  And in December, with the Nutcracker, she had plenty of dance rehearsals.

In between work, dance, and other things, somehow I found time to get presents this year.  That was a challenge.

Physically, I am doing very well.  I keep improving, thanks to Ampyra and physical therapy.  It might be invisible to most, because improvements tend to be in functional areas, like I can now pump gas without feeling like I am going to fall.  I have started to climb steps without needing someone to always lift my legs for me.  When I go to concerts this really gives great concern to people who do not know me and tell me I can always sit where there are no steps.  What?!!  Give me steps - they are fun!  And the view from higher is often better than the lower view.

All of this stuff happening is noise.  As I was preparing a devotion for church council last week, I got to the prayer part, where I was to say a prayer.  And I didn't feel like filling a prayer with words.  So I found silence in the midst of prayer.  And it hit me that silence can be found there - finding those moments to pray, one can simply insert silence.  And silence has its own way of being beautiful.

Merry Christmas, and as you enjoy great joy accompanied by the noise of spending time with family and friends, may you also find moments or times of silence where there is so often


Thursday, November 10, 2016


Our election is done.  When voting many people reflected on the first time they voted.  The first time I voted was in 1992 for Bill Clinton.  Soon after he was elected, I was diagnosed with MS.  I don't remember much from that time other than going to the doctor a lot, but I do remember that was my first vote.

This election cycle has been much different.  I wonder the elements were the same but if I was in the middle of college now with doctors trying to figure out what was wrong with me, if I would have been invested in this election at all.  I really wonder.

Back in 1992, my only issue really was that I couldn't run, walking was sometimes difficult, and I slept 10-11 hours a night because I was exhausted.

This election cycle was different because permission was given to show hatred to many groups of people, including people with disabilities.  Right now people are saying we need to move on to acceptance, that we need to be positive, that we need to address inclusion by speaking out and with our actions, and the list continues.  And I am not there.  This is not one of my positive posts.  But I feel the need to write it so someday I can look back and see how I felt - so others can look back and see feelings that were out there perhaps.

After permission was given to mock people with disabilities, things started to change.  I use the accessible parking spots.  More noticeably in the past few months people have parked in those spots as drop-off spots, or just parked there because they felt like it, without a disability hangtag or license plate. There has been an increase in the number of times this occurs, but also in how people react.  Several times when I have got my wheelchair out, people who were parked in those spots just looked at me as if to say, "you can't do anything if I park here."  And that is just wrong.

There are also many people who are nice.  People who know me know I like to be as independent as possible and generally leave me alone when I am navigating things.  People near where I work, who use the bank in the building where I work and thus do not know me, always want to help.  The other day a guy was coming toward my car as I was standing up from my wheelchair.  He just grabbed it and asked how I wanted it put in the car.  On occasional days, this does not bother me.  In fact, that day I didn't feel like putting Nemo, the wheelchair, in my car, so it was great what he did.

With the behavior concerning the parking spots, there is other strange behavior that makes me feel uneasy and is hard to describe.  With the election done, I am left feeling unsafe and vulnerable.  I want people to understand that many people feel this way and while we would like to move on and work toward inclusion, at the same time we feel we must be invisible.  Doing these things together does not work well.  So I am left with invisible.  I want to crawl in a hole.

A candidate moves forward and becomes president.  Nothing may happen between him and people with disabilities.  What is so troublesome is knowing that a large group of people followed this person and were given permission to behave in ways that make people like me feel unsafe.  What is so disheartening is knowing a large number of people accepted that.  And that is where I get stuck.

I suppose by writing this blog I am working toward being inclusive, even though I am going to say I feel a bit scared in writing it.  You see, threatening language by supporters of our next president told me "you are just afraid that he is going to kill all of you."  No, that is not it.  I not afraid of him.  I am afraid of the people who made such mean-spirited comments who have been given permission to do so.  And I don't know how to go forward from there.

The good news is that I continue to walk more, I continue to do things I could not do for a long time, I can write with a pencil.  And I want to stay on this track.  So maybe I stay in my bubble and focus on the things I can control, knowing that God is with me through it all.

But please look out for us during this time - not just people with disabilities, but also so many other minority groups that are marginalized.  Do not expect us to get to acceptance.  I suppose grace enters there.


Sunday, September 25, 2016

The Letter

A few weeks go I got a letter, saying that to keep receiving Ampyra, I needed to do  timed 25 foot walking test.  My response was... what?!! 

We are in a time when costs of prescriptions are being questioned.  But it seems to me that the patient is the one who is "targeted" - a medicine is expensive, so make patients prove they really need the medicine...   or whenever possible, find a cheaper alternative. This is concerning - whether we stick in the long-term with insurance, or whether we go to some kind of universal healthcare - decisions to use costly medicines will be questioned - and patients will find themselves in a place where they just want something to work, and when they find that something - they want to stay on it and not have to prove it works.

Here are excerpts from the letter I wrote  regarding all this.

My Story

In 2010, Ampyra became available and I was one of the first patients to go on it with the help and advice of my physician.  "Disease modifying therapies" (DMTs) have not worked for me and I have tried many of them.  Ampyra works for a small subset of people with MS and there are a few people for whom Ampyra has astonishing results.  I am one of those people.  Within a day I noticed differences.  I have not had any relapses in the six years I have been on Ampyra.  No one really knows why, but a clue could be that my lesions are only in my spine and Ampyra works to connect potassium channels. Ampyra is my miracle drug and my improvements, while on this drug, still astonish me and many others who know me to this day. 

I returned as a patient to my physician in 2016.  I have not had good experiences, as a patient, since being back, and it all surrounds pharmaceuticals. One of those experiences has been getting an ambiguous letter fthat I needed to do a walking test for Ampyra.  I have had a baseline walking test, so my walking improvement on Ampyra can't be measured, and a baseline at 6 years is not a baseline. I did have do a timed test for me back in 2010, so I know exactly how slow I was back then and how much I have improved, both in speed but also in endurance.  In fact, I wouldn't have even qualified to receive Ampyra given the guidelines  for a baseline walking test which is concerning.

It is not just in walking where I have had improvements: My balance is much better since I started taking Ampyra. I have noticed this, but other people have also noticed, telling me that I used to cling to chairs for balance.  I used to have a lot of difficulty writing and was working on speech recognition software as an alternative, but now I can write with a pen or pencil, without any special grips, and people can actually read my writing. I imagine professionals may doubt this, but small studies, like the one I have attached for your reference, support Ampyra being associated with improved hand dexterity.  You may or may not know this, but for the subset of us for whom Ampyra works, there is a “kick in” effect that occurs 15-20 minutes after taking it.  This effect also occurs again about three hours after taking it and is when I am at my strongest.

Of course there are very few of us who have such great results, but I have shared my successes with the media, the drug company, and the MS Society, for which articles have been written. 

My hope is that you will find my story enlightening and useful, and you take it seriously because others who have taken the time to know my story are excited at each success I have.


My reaction to getting an ambiguous letter, in my second month back as a member and patient, felt threatening and confusing because it stated that the Neurology department required me to do a walking test because I use the prescription Ampyra. Welcome back? That certainly didn’t feel like a welcome.

No one knows my story behind Ampyra and to be told there is a need to think of how it is important to use every member’s money wisely when I called to ask questions appeared judgmental and felt threatening. I just had an appointment where it was assessed that I am doing well.  Now more was wanted.

I understand the need to do certain screening tests for people, but perhaps a bit of homework should be done before sending ambiguous letters to unsuspecting patients.  It has been a daunting journey for me to be a member again and I’m concerned because I am doing really well in terms of my health because of Ampyra.  Did anyone even open my medical record to see my most recent visit?  Is this being done this for research?  What are the guidelines?  I was told there are “all these new guidelines” that must be followed and it sounded, as if, the guidelines are coming from outside.  I called the drug company, only to learn that the guidelines are not being made by the FDA, so I’m assuming they are insurance guidelines. 

Clinical trials for Ampyra measured a very finite period of time for improvements and post-marketing studies have been limited to showing that improvements are maintained strictly for walking. What is the goal for the walking test?  I have not been given specifics on how this test will be done, other than that I need to do three, 25 foot walks. 

My story has been on the news, the drug company tracks my great success with Ampyra, I am in constant contact with the MS Society to tell them my story, and I have been keeping a blog about my continued successes which is followed by people all over the world. Those who have taken the time to listen, read, or talk to me know me, know my story. Yet to measure success, only my walking speed will be measured and that doesn’t encapsulate “my story” even though my walking has greatly improved, both in speed and distance, while I have been on Ampyra. 

Ampyra was approved for walking. I know when a drug company applies for approval with the FDA, they must limit what they request for approval and once approved, the drug company cannot market other benefits the drug may provide to patients unless those go through the rigorous testing process.  Therefore, Ampyra is approved only for walking even though it benefits so much more for a small group of patients, such as me, leading more to the individualized approach to medicine that is gaining traction lately.
Finally, while thre is a focus on walking speed, the only drug found to help with my migraines is not covered.  I have tried numerous medicines; most recently w medications, both as off-label with no studies on migraines, which have been completely ineffective, leading me to have 2-day, debilitating migraines which is a nightmare.  This is not quality care and greatly concerns me and my family.

Thank you for your time in reading my story.  I hope it will help in working with patients like me, especially when we re new.


Monday, August 29, 2016


Once upon a time, a mother and father welcomed their baby daughter into the world.  They named her Elizabeth, but for most of her life she was known as Beth.

Beth's parents were history professors and as such, enjoyed traveling to various places around the world to study history.  When Beth was only six months old, her parents went to England as part of their sabbatical (period of leave granted to professors every 7 or so years).  They took Beth and her older brother with them.

While in England, Beth got sick, developing a fever of 105.  Beth's mother was somewhat frantic.  Surprisingly, the doctors who saw Beth were not frantic at all.  Because of this, Beth's parents purchased private health insurance to try to get help for Beth beyond what was covered as part of the English system.  Once a private doctor saw Beth, she was put on antibiotics and quickly got better.  To this day, Beth knows her life was saved in this manner.

Many years later, Beth was diagnosed with multiple sclerosis, or MS.  Beth tried to understand this.  She was so young to get this diagnosis - why?  Beth's search led her to discover that infants who traveled to a certain latitude where they were not born were more susceptible to MS.  Further, Beth discovered that many people with MS recall, years prior to their diagnosis, getting very sick with a fever.  Beth put this combination together - she was very sick in England.  She wondered what if she had received more timely care and had not been sick?  Beth doesn't tend to live much in the "what if?" land, but she keeps this in her mind.

Beth's great aunt and uncle lived in Toronto, Canada.  Beth has fond memories of visiting them, and what a great person her uncle was.  Beth's uncle was diagnosed with prostate cancer at a relatively young age.  Because he lived in Canada, he had a long wait time for additional tests regarding his prostate cancer.  By the time he had tests done, it was too late and the cancer had spread.  He died because it was too late to receive treatment.  Years later, a close relative of Beth's also developed prostate cancer.  He sought aggressive treatment in the US.  He has lived 8 years since being diagnosed - 7 years longer than Beth's great uncle.

Once diagnosed with MS, Beth wasn't sure what to do with her life.  She was only 20 and in college.  She got a double major in math and honors economics.  And Beth knew she wanted her career centered around healthcare.  Beth sent over 20 letters to healthcare organizations throughout the US, asking about potential jobs.  She received many disheartening letters in response to her inquiries, until one day she received a letter from the Mayo Clinic in Minnesota.  Beth started her career at the Mayo Clinic, working in the biostatistics department as the analyst for a study on stroke prevention. Beth knew she belonged in Colorado, so after 3 years, found a job as a pharmacy analyst with Kaiser Permanente in Colorado. 

Once back in Colorado, Beth navigated through many departments within Kaiser.  She started as an analyst in the pharmacy department, found she liked a statistical software which brought her to the computer side of healthcare when it was just starting.  She spent time in the research department at Kaiser, and then more time on the computer side of healthcare, trying to figure out how data from an electronic medical record could be turned into meaningful and useful information.

But Beth liked change, so she deviated from the computer side of healthcare for about 6 years, and took a position where she was responsible for answering any questions employer groups had regarding either healthcare quality or clinical care.  These 6 years gave Beth a great knowledge of the healthcare system.  Coupled with background on the computer, or technical, side of healthcare, Beth's knowledge of healthcare was extensive.  She was told she needed to get a masters degree, which did - in public administration, but focusing on healthcare policy.  After receiving her masters degree, Beth left Kaiser for 3 years to explore the walls outside of Kaiser and to see what more she could learn of public policy.  She learned a lot during that time about differences in payments between commercial insurance, Medicare, and Medicaid.  She recently returned to the computer/technical side of Kaiser.

So you see, Beth has spent her whole career in healthcare.  Beth has also had MS for over half her life, and has a unique view from that perspective.

But Beth struggles with a problem. After almost dying as infant, spending over half her life with MS, and spending her entire career in healthcare, she doesn't feel people listen to her.  People want universal healthcare and list a bunch of reasons why. Beth tries to explain, given her background, why she doesn't feel it is a good idea.  She feels her thoughts are not heard. What she finds most painful is the fact that no one really thinks about the fact that she almost died. She also finds it painful that given her background, people still don't listen, or don't acknowledge any of what she says, despite the fact that she acknowledges what they say.  She doesn't understand why no one listens.  She doesn't understand why no one acknowledges that she very well could have died.

Who is Elliott and how is Elliott involved in this real-life story? Elliott is Pete's Dragon in a fictional story-turned Disney movie.  Beth, always a kid-at-heart, took her husband to this movie this past weekend.  Beth found herself drawn into the imaginary world and coming out of the movie consumed with Elliott.  You see, Elliott was a dragon who was invisible except to Pete and sometimes other people.  When Pete, a kid who lived with Elliott, was found, some people were interested in finding and capturing Elliot.  People did capture Elliott.  Elliott just wanted to go back to where he lived - he just wanted to be alone.  He knew the world so well and didn't want people to attack him - he wanted to live in peace.  And in the end (spoiler alert!!!!!), Elliott did just that.  He escaped from people and left to live life on his terms, invisible to humans, and valued as the dragon he is.

It's such a "Disney" story, yet Beth felt drawn to it.  If people will not listen to her, and if she feels a bit attacked, her tendency can be, at some point, to retreat away from the people causing her pain.  And so, Beth has been spending time away from the places she finds painful.  She has been spending time working, taking her daughter to many activities, and so on.  And to go back to where those people are?  Unlike Elliott, Beth will go back, painfully knowing she doesn't feel her opinions are valued, and questioning why.


Somewhere God is in here, but I can't figure out where.  God, where are you?  Walk me through this.


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.