Monday, March 25, 2013

Don't ruin the dream

This entry is about a doctor appt I had today.  But just 2 minutes ago, I got an email from a family friend on possibilities for training for my next walking goal.  It is strange, but perfect timing, at the end of this particular day, encouraging me to keep striving for that goal.

I have a new job which is perfect for me.  The only bad part was having to switch health insurance and not be able to see my favorite doctor, the doctor who advocated for me, the one who never gave up on me because he knew I wasn't going to give up, the one who told me to follow my dreams.  And so I did.  And I miss Dr. Mulica, or Count, as he is also called.

Today I had to go to a neurologist.  Dr. Mulica is a rehabilitation doctor.  I have never really found a neurologist I liked, but I needed to make sure my medications were refilled.

I told this doctor about how wonderful Ampyra has been and how I haven't had an MS attack in almost 3 years; how I am walking more; how I can now write with a regular pen.  He was skeptical; I couldn't convince him.  To him, not having an attack just meant my MS was no longer that which involved attacks, and it had nothing to do with Ampyra, despite the fact that I had about 20 years of regular attacks (when symptoms get extremely worse) for all of those 20 years, and despite the fact that they stopped completely when I started taking Ampyra.  To him, Ampyra is only a symptom management medication.  He didn't share in my excitement and said he only knew one other person who he said claimed dramatic improvement.  Great.

Then he did a bunch of neurologic tests and I did fine with them; still there was no realization how much I had improved.  And then there was "you know, you have never had lesions in you brain.  You could have this other condition."  Yes, but the fact is, I have been tested for this other disease and the test was negative.  And the fact is I got stuck by a needle, right in the middle of my spinal cord, when I was 20 and alone at college, so they could take out fluid to confirm an MS diagnosis.  I don't think I went through all of those diagnostic tests, which finally showed MS, to think this is something else.  Looks like a duck, smells like a duck.  It's a duck!  It's MS, and if not, it's just Beth's disease, which looks like MS and smells like MS.

Recently I wrote a letter to the doctor who diagnosed me with MS, who told me not to lay down on the floor and die, who told me I could live a full and meaningful life.  I needed to thank him for that advice.  He wrote back and talked about how he used my case a lot, as an example of how important it is to listen to your patient, to really hear what they are saying.

And yet there I was, and this doctor today was not listening to me, but seemed stuck in a mindset that MS is a chronic disease that only worsens.

If we look at medicine these days, it seems there is so much reliance on groups of patients, putting people  buckets, and not looking at the individuals.  Certainly I cannot be different than anyone else; certainly since evidence doesn't show what I have experienced, then what I am experiencing cannot be real.  Or can it?

I think back to when I breastfed, told people it helped me physically, and no one believed me.  I wrote emails to have things taken off websites that discouraged women with MS from nursing.  Other women must have been doing the same thing.  Eventually websites changed. Eventually studies were done which showed what I had experienced - that my MS went into remission.

And here I am, again saying something that can't possibly be true.  After an appointment like that, it's hard to walk away and be happy. 

But then, as I was about to write this, I received the email I mentioned at the beginning, giving me ideas on how to keep improving, from a person who believes in me.

There are so many people who do believe in me; so many people who have encouraged me during the last almost 3 years of my life, where the improbable has occurred, so that it has been much larger than myself.

And if any doctors read this, please know how important it is to listen to your patients.  Please, never give up on them.  Please, encourage them.  And please, tell them to follow their dreams, of which there are so many.  Every person, every day, it's critical to believe, even if it all seems completely unrealistic and impossible. 

Everyone deserves the chance to dream the impossible dream, and then to chase it, full speed ahead, surrounded by nothing but encouragement.


Saturday, March 23, 2013

The MS Walk

It is that time of year again, as I am watching the snow fall and I am stuck inside, I'm asking people - you - friends, family, anyone who wants - to contribute to the MS Walk, which raises funds for the National MS Society.  The MS Society then uses these funds for research toward ending MS, toward services for people with MS, and much more.  What many people may not understand is that every donation is important - $5, $10, etc.  It all adds up!

You can sponsor me (and read my story) here:

(then click on "Donate to Beth")

You can also show support by joining our team "May You Dance."  Same link, just click on "Join Beth's Team."  Then you can come walk too, and hopefully by then, the snow will stop.

You can write a check (to the MS Society) - just let me know and I'll send you my address, or you can give me a check or cash...  it all works!

Why, year after year, do a bunch of us continue to participate? Everyone has their own reason.

And for me, every year is different. 

Why donate?  Because people like me are on Ampyra, a drug to help with walking, but it has turned my life upside down, in a good way.  This drug received initial funding partly through the MS Society.  I've been on it for 2.5 years now.

Why donate?  Because Ampyra can help develop leg muscles.  For me, this meant I could qualify for devices called Bioness.  These are cuffs placed under the knee.  Then there are foot sensors that go under the heel.  This combination means that when I land on my heel, the foot sensor triggers something in the cuff, which then triggers the muscles that enable my toes to lift, rather than drag.  These are new this year for me!  Before Ampyra, I could not walk well enough to qualify for them.

Why donate?  Because Bioness devices cost about $5,000 per side.  The MS Society helped me apply for grants to get these devices, and gave me a grant to help buy one of them.  Since they are $5,000 each, the MS Society made it possible for me to continue to improve my walking.  Also new this year!

Why donate?  When I switched jobs, the MS Society helped me navigate through the confusing maze of switching insurance.  It's very complicated because not all insurance plans cover the same things in the same way.  And again, this is new this year! 

As I said, each year is different.

With all the advances I have made because of Ampyra, I've found myself in a strange, confusing place.  I'll probably write about that someday soon.  I'm in a place where I'm much better, where for the first time since I was diagnosed with MS, I actually feel somewhat stable.  And this is just strange.  There's much more to this, but it's a different blog entry.  Stay tuned.

A long time ago at a group, someone said, wouldn't we all be happy if our MS progression could just be stopped, so things didn't get worse?  And I said no.  I wouldn't be happy just to have progression stop.  I wanted to get better.  I still want to continue getting better.

The only reason that will happen is if research continues.  The only way research will continue is if we keep asking for donations.  And the only way research will continue is if people continue to donate.

I told my skiing instructor recently that I could wiggle my toes for the first time this season, and then they finally weren't as cold.  I told him it's such a small thing.  He said the obvious: "Beth, many small things add up to big things."  This is true.  Each year we walk, we ask for donations, and people give donations, ..., it may seem small.  But these small things, down to small donations, add to big things.

2.5 years ago I could walk only 30 feet.  2 years ago it took me an hour to do a lap around the track.  Gradually my time improved.  2 months ago I broke 20 minutes.  Last weekend, when it wasn't snowing, I broke 16 minutes.  Small things lead to big things.

Please be a part of this.


Sunday, March 3, 2013

Do you see what I see?

This past Friday night I took my daughter to McDonalds.  I had promised this as they have completely redone the restaurant and there is a new play area.

I also decided that I needed to walk into the restaurant because I hadn't walked enough that day (I thought).  We arrived at probably the worst time of day for me to walk - 5:30pm - on a Fri - when everyone else had decided, it seemed, to also go to McDonalds.  There were different groups - families, teenagers, etc.  It was loud; there was a line; it was chaotic.  Using my walker was not a good decision - when there's a bunch of noise and chaos, it somehow throws me...  I need to concentrate more, people are staring, and standing still is always difficult - it's easier to keep moving.

We got our food and found our table.  My daughter ate a bit and then went to play.  I...  sat.  I wanted to go see the new play area, but I was tired, and my Internet connection seemed to work, so I was doing a lot of that.  Note to people: rarely do I not want to do something;  rarely do I want to stay back; please try to include people with limited mobility.  But on Friday night, I just wanted to sit.

It seemed like chaos was everywhere there.  Perhaps other people notice things, but with limited mobility, sometimes I have more time to look at things and observe...  other people may do this but for me it's more forced.

There were napkins on the ground everywhere.  There was a table where milk was spilled and the people had just left it.  Tables were dirty.  And this is upper-middle class McDonalds.. Those who have stereotypes might be surprised at how messy, loud, and obnoxious this McDonalds was. People were loud - conversations, loud conversations, were in pockets throughout the restaurant.  Kids were loud.  I'm sure I have been one of "those people" who has left a complete mess and been loud - but I was now watching it.

And then I saw one man by the drinking area, and he was quietly cleaning.  That area was a complete mess as well, but he was cleaning it. Then he moved to all the napkins and the milk, while no one was paying attention.  By the time we left, the restauant was in much better condition.

What was interesting, for lack of being able to find the right word, was his demeanor of being completely calm in the midst of all this chaos, as he did his job, while no one noticed, while almost no one seemed to care, in this middle class environment, whether they were making a complete mess.  No one said thank you.  Since no one noticed the incredible mess, they were not cleaning anything, but instead adding to the mess.   And in the midst of this chaos, as I watched, was a man simply doing his job without complaining.

And so, during this season of Lent, we may stop, look, and listen.  Some of us may be forced to do this, not just during Lent.  In the middle of chaos, calm.  Somehow in that calm, seemed to be peace.  And I watched it, thinking I need to find some of that calm and peace in the middle of the chaotic world.

Perhaps the man cleaning had that sense of peace in the midst of chaos. Perhaps we can all learn from those who seem so different from us, so we can find that same