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:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=20762
(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.
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=20762
Peace.
Saturday, March 23, 2013
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
Peace.
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
Peace.
Sunday, February 17, 2013
Glimpses
Lent. Stop. Look. Listen. (from the sermon at church today)
In the midst of change, it's good to do this. And what better time than during Lent.
Glimpses from the past week...
"Beth, as you know I am a physical therapist. I just have to say that I have never seen a gait quite like yours." (I was smiling - this is an interesting observation by someone who doesn't know me). "Did you have an accident?" "No. Guess again." (still smiling) "Cerebral Palsy?" "No. You have to guess one more time before I tell you." (still smiling) (look of being totally perplexed) "Were you born with it?" "No... I have MS." "But... you are so young." "Yes, but I've had this for over 20 years." "But you were young to get it." (my thought: yup. It's now over half my life. It is what it is. There's no choice.)
"I'm so glad you're here."
"He's really glad you're here. He couldn't wait for you to get here."
(I'm excited to be there. It feels like I spent a year looking, and in the end, I found something that seems perfect.)
Me: "Hi." (to someone who used to work with me, years ago, when he was a supervisor moving up quickly and I was getting to be well-known as a programmer/analyst) "Hi Beth." Hug.
"Beth, you're coming back tomorrow, right?" (the person smiles) Of course I am.
Now let's see. At the old place we had a place I could walk and do loops. Now there is a large open space, but I can make this work. It's an out and back approach, with a kind of mini-loop in the middle of it. This works for walking, but someone called what I do "laps," so I will go with that. There is a place to walk.
(Inserting Ampyra commercial here) There was a meeting at a place where I have been previously. But this time, in walking into the meeting from the parking garage, I didn't get tired. I didn't get tired going back to my car either. (Some people call my car a van, but I'm still in denial - I would rather drive a car) Going to another meeting at a different location, I didn't get tired either. I've been doing 20 minute walks without stopping whenever there's a day I can do that. It's making a difference.
There's a whole lot more, but these are just glimpses, and this blog is about MS and faith, not so much on employment. But a new job and MS interact, much as I would like to separate them, take this MS thing, and set it on a shelf somewhere.
Life is good. This was a good past week.
God didn't get any anger from me this week. Well, not totally true. At first I wasn't walking enough which caused an evening of 3 hours of leg spasms where I tried to explain that I couldn't walk as much these past couple days, and could God perhaps cut me a break, given it was Ash Wednesday? I promise, God, I will walk more, on Thur and Fri (ha - as if God sent the spasms - but in these moments/3 hours - I think I should be able to make some kind of deal).
Stop. Look. Listen.
I'm stopped. I have looked. I'm listening to a song my husband has on the radio - I don't like country music at all and he has country music on. But this is a song I know and like - it's called "I Hope You Dance."
So I'll end this one with the lyrics. It's about always looking for the amazing, never taking things for granted, looking for open doors where doors seem closed, never giving up, and always, of course, dancing.
Peace.
May You Dance:
I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance
I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Livin' might mean takin' chances, but they're worth takin'
Lovin' might be a mistake, but it's worth makin'
Don't let some Hellbent heart leave you bitter
When you come close to sellin' out, reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance
I hope you dance
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
Dance
I hope you dance
In the midst of change, it's good to do this. And what better time than during Lent.
Glimpses from the past week...
"Beth, as you know I am a physical therapist. I just have to say that I have never seen a gait quite like yours." (I was smiling - this is an interesting observation by someone who doesn't know me). "Did you have an accident?" "No. Guess again." (still smiling) "Cerebral Palsy?" "No. You have to guess one more time before I tell you." (still smiling) (look of being totally perplexed) "Were you born with it?" "No... I have MS." "But... you are so young." "Yes, but I've had this for over 20 years." "But you were young to get it." (my thought: yup. It's now over half my life. It is what it is. There's no choice.)
"I'm so glad you're here."
"He's really glad you're here. He couldn't wait for you to get here."
(I'm excited to be there. It feels like I spent a year looking, and in the end, I found something that seems perfect.)
Me: "Hi." (to someone who used to work with me, years ago, when he was a supervisor moving up quickly and I was getting to be well-known as a programmer/analyst) "Hi Beth." Hug.
"Beth, you're coming back tomorrow, right?" (the person smiles) Of course I am.
Now let's see. At the old place we had a place I could walk and do loops. Now there is a large open space, but I can make this work. It's an out and back approach, with a kind of mini-loop in the middle of it. This works for walking, but someone called what I do "laps," so I will go with that. There is a place to walk.
(Inserting Ampyra commercial here) There was a meeting at a place where I have been previously. But this time, in walking into the meeting from the parking garage, I didn't get tired. I didn't get tired going back to my car either. (Some people call my car a van, but I'm still in denial - I would rather drive a car) Going to another meeting at a different location, I didn't get tired either. I've been doing 20 minute walks without stopping whenever there's a day I can do that. It's making a difference.
There's a whole lot more, but these are just glimpses, and this blog is about MS and faith, not so much on employment. But a new job and MS interact, much as I would like to separate them, take this MS thing, and set it on a shelf somewhere.
Life is good. This was a good past week.
God didn't get any anger from me this week. Well, not totally true. At first I wasn't walking enough which caused an evening of 3 hours of leg spasms where I tried to explain that I couldn't walk as much these past couple days, and could God perhaps cut me a break, given it was Ash Wednesday? I promise, God, I will walk more, on Thur and Fri (ha - as if God sent the spasms - but in these moments/3 hours - I think I should be able to make some kind of deal).
Stop. Look. Listen.
I'm stopped. I have looked. I'm listening to a song my husband has on the radio - I don't like country music at all and he has country music on. But this is a song I know and like - it's called "I Hope You Dance."
So I'll end this one with the lyrics. It's about always looking for the amazing, never taking things for granted, looking for open doors where doors seem closed, never giving up, and always, of course, dancing.
Peace.
May You Dance:
I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance
I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Livin' might mean takin' chances, but they're worth takin'
Lovin' might be a mistake, but it's worth makin'
Don't let some Hellbent heart leave you bitter
When you come close to sellin' out, reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance
I hope you dance
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
Dance
I hope you dance
Sunday, February 10, 2013
20 years
"It's been 20 years?" I asked my mom. "Well, yes."
I had forgotten. It has been 20 years. It's been 23 years since I woke up with tingly legs, marking the beginning of this thing that, on Feb 11, got a name called MS.
"I have good news and bad news for you. The good news is... The bad news is we have found spots on your spine which indicate you have Multiple Sclerosis."
"Should I just lie down here on the floor and die then?"
(Look of shock) "No.... there is someone who works in the lab here who has MS... there is someone getting their Masters who has MS."
(me) "Mom, I think I the type of MS means I have will not be the easiest path, but I won't have the hardest path. I think MS will always affect me and be a big part of my life. But I think my life will continue, and I will always be 'Beth.' I won't lose my identity."
Life is like a river. It changes course, sometimes moves more quickly than other times, sometimes gets stuck on rocks or bunches of grass. But it continues. Sometimes those grassy spots seem to never end. If we break through the grassy spots, we may find a fast flowing river again. With MS, there may be more rocks in the way, more grassy spots, and perhaps a slower river. But one never knows when that river may pick up again, and so, I've always looked for the breakthroughs, and have found some.
My doctor was right, and I didn't just lie on the floor and die. I got a job. I went back to school. I got married. I am a mom.
There's been a Facebook "thing" lately where someone gives you an age and you answer questions based on that age, and the same questions today. I was given 19, very close to age 20, when I was diagnosed with MS. It's interesting to fill this out, thinking of 20 years ago.
On Feb 11, 1993,
I lived in: a small and dark dormroom at Kenyon College in Ohio
I drove: my friend Kelley's car to many dr appts in Columbus, an hour away from Kenyon
I worked at: N/A
I dated/married: too busy going to the dr for these things
I feared: I don't know. I was in a cloud.
I wanted to be: alive.
Now that it's (almost) Feb 11, 2013
I live in: Colorado, which has always been home
I drive: do I have to say? I do drive!
I work at: I will be starting a new job on Feb 11 at an organization called CIVHC.
I am dating/married to: Dave
I fear: depends on the day, hour, minute, etc.
I want to be: happy, successful in all I do, and someone who never gives up.
So, 20 years ago on Feb 11 I went through a day that was horrible, filled with tests which led to "you have MS." This Feb 11 I start a new job. It's quite a different kind of day. I find it somewhat strange that it's almost an opposite type of day.
Throughout these 20 years, I have looked to God, and considered "suffering leads to endurance, which leads to character, which leads to hope, and hope does not disappoint us." I find myself at all stages of this continuum, which wasn't written as Beth's stages of life, but I have used it that way. As a sidenote, I don't like the word "suffering" in the context of MS. I live with MS. Since it's my blog, I would like to substitute "living with MS" in place of "suffering." Blogs can be so much fun!
I have said "Why, God?" "God, seriously, are you kidding? This is too much."
I have actually screamed (alone): "God, I cannot take this anymore. How long must this continue?!"
"God, I know people say God never gives you more than you can handle, but I have more, I really do."
"Thank you, God."
"God, this is a gift."
"God, could this be true? This is simply wonderful."
And here I am, 20 years later, amazed.
It's been quite a journey, God. I am amazed, thankful, and happy."
Peace.
I had forgotten. It has been 20 years. It's been 23 years since I woke up with tingly legs, marking the beginning of this thing that, on Feb 11, got a name called MS.
"I have good news and bad news for you. The good news is... The bad news is we have found spots on your spine which indicate you have Multiple Sclerosis."
"Should I just lie down here on the floor and die then?"
(Look of shock) "No.... there is someone who works in the lab here who has MS... there is someone getting their Masters who has MS."
(me) "Mom, I think I the type of MS means I have will not be the easiest path, but I won't have the hardest path. I think MS will always affect me and be a big part of my life. But I think my life will continue, and I will always be 'Beth.' I won't lose my identity."
Life is like a river. It changes course, sometimes moves more quickly than other times, sometimes gets stuck on rocks or bunches of grass. But it continues. Sometimes those grassy spots seem to never end. If we break through the grassy spots, we may find a fast flowing river again. With MS, there may be more rocks in the way, more grassy spots, and perhaps a slower river. But one never knows when that river may pick up again, and so, I've always looked for the breakthroughs, and have found some.
My doctor was right, and I didn't just lie on the floor and die. I got a job. I went back to school. I got married. I am a mom.
There's been a Facebook "thing" lately where someone gives you an age and you answer questions based on that age, and the same questions today. I was given 19, very close to age 20, when I was diagnosed with MS. It's interesting to fill this out, thinking of 20 years ago.
On Feb 11, 1993,
I lived in: a small and dark dormroom at Kenyon College in Ohio
I drove: my friend Kelley's car to many dr appts in Columbus, an hour away from Kenyon
I worked at: N/A
I dated/married: too busy going to the dr for these things
I feared: I don't know. I was in a cloud.
I wanted to be: alive.
Now that it's (almost) Feb 11, 2013
I live in: Colorado, which has always been home
I drive: do I have to say? I do drive!
I work at: I will be starting a new job on Feb 11 at an organization called CIVHC.
I am dating/married to: Dave
I fear: depends on the day, hour, minute, etc.
I want to be: happy, successful in all I do, and someone who never gives up.
So, 20 years ago on Feb 11 I went through a day that was horrible, filled with tests which led to "you have MS." This Feb 11 I start a new job. It's quite a different kind of day. I find it somewhat strange that it's almost an opposite type of day.
Throughout these 20 years, I have looked to God, and considered "suffering leads to endurance, which leads to character, which leads to hope, and hope does not disappoint us." I find myself at all stages of this continuum, which wasn't written as Beth's stages of life, but I have used it that way. As a sidenote, I don't like the word "suffering" in the context of MS. I live with MS. Since it's my blog, I would like to substitute "living with MS" in place of "suffering." Blogs can be so much fun!
I have said "Why, God?" "God, seriously, are you kidding? This is too much."
I have actually screamed (alone): "God, I cannot take this anymore. How long must this continue?!"
"God, I know people say God never gives you more than you can handle, but I have more, I really do."
"Thank you, God."
"God, this is a gift."
"God, could this be true? This is simply wonderful."
And here I am, 20 years later, amazed.
It's been quite a journey, God. I am amazed, thankful, and happy."
Peace.
Friday, February 8, 2013
A chance
BACKGROUND:
I've been on Ampyra for over 2 and a half years. If you look back at many of my previous posts, they may well qualify for an Ampyra commercial. Ampyra is thought to help the walking ability for one in three people with MS. It went through extensive clinical trials, in part to determine the correct dosage. It was shown, basically, to increase the speed of walking on average by 25 percent over the course of 12 weeks. That was the trial. Drug approved by FDA. The end.
25 percent doesn't sound like a lot. But reconsider... this was for the entire sample of people. We're hearing that Ampyra works for 1 in 3 people. Thinking generally, if that is the case for Ampyra, then if you do some pretty basic and not FDA-approved math, you're really finding that, for the people for whom Ampyra works, it improves their walking speed by 75%... over the course of 12 weeks.
What happens after 12 weeks to those people? MS is very individualized, so every person is different. For me, I could only walk about 25-50 feet before Ampyra. After 4 months, it took me about an hour to make it around a track (which is much further than 25-50 feet!). This fall, so about 2 years after starting Ampyra, I was under 20 minutes around a track.
But what was not tested? What was not tested was everything outside of leg muscles. If Ampyra fixes connections to make leg muscles work better, then it makes sense that Ampyra will help other muscles be stronger as well. And for me, this is true, but an actual clinical trial can only test a limited number of things. So I have stronger core muscles which is very important. I have stronger hand muscles so I can now write. If you think of any muscle, it's stronger. Beyond that, unexplained, is I haven't had an MS exaccerbation during that time, and I've only been sick once. My mom remembers when I would have exaccerbations - the fatigue, the falling, and how tough they were mentally. I don't tend to get sick, but since Ampyra, I have had a lot of stress at times and still managed to stay healthy. There is something there. For me, for now, the course of MS has been reversed some... well, 75%... I am 75% better than I was, but I still have a long way to go.
It's probably because, as I've said previously, my MS is different (everyone with MS will tell you the same thing - theirs is different). I've never had brain lesions. I had two spots of lesions on my spine. One of those spots is gone. The other lesion area is small. Yet I have so much trouble walking - it must be the broken connections that occur on conducting nerves, as a results of the lesions. Those broken connections are where Ampyra works.
I've been on Provigil for longer than that... I don't know how long. Provigil has been studied in MS with mixed results. It is thought to improve energy in people with MS. For me, it has done just that. I believe that the combination of Provigil and Ampyra may be part of why I am doing very well. When I forgot to take Provigil one day, I couldn't stay awake. Other bad things happen if I don't take it for a couple days. Provigil recently went generic so it is a lot cheaper now.
PROBLEM:
Some insurance companies cover Ampyra. Some do not. Some insurance companies cover Provigil for MS. Some do not. If you have to change insurance companies, it can be, well, I am speechless. One company may cover Ampyra for MS, the other may cover Provigil for MS, and neither may cover both.
SIDENOTES:
It's fascinating... the combo of 2 drugs has, I believe, altered my life completely. I'll find a way for it to work, to get both drugs, but when someone has been two drugs for so long, it's hard to imagine that those drugs wouldn't be covered (maintained), or that there wouldn't be some kind of mandate about coverage. I'm all for mandating coverage for contraceptives, but what about other things?
And if we're talking medical necessity, I can think of a bunch of drugs that are not medically necessary, but that are covered by both insurance companies. So that argument doesn't hold.
A CHANCE:
I believe that everyone deserves a chance. There are other insurance companies that do not cover Ampyra. So other people don't get the chance to try it - even with my current insurance company, my doctor had to push a bit. And it's a lot less expensive than many other MS drugs.
I was getting my wheelchair fixed the other day. As I was waiting (for 45 minutes), a woman was in the store talking about her power wheelchair. I wondered what her story was. What seemed clear to me is that she was extremely obese and was currently in a power chair. The questions she asked led me to believe that she likes to stay in the chair as much as she can. She hasn't used a manual wheelchair for a long time. She is on Medicaid. Her current power chair was $15k. Her new chair will cost $22k and I am assuming Medicaid will pay for this. She was on oxygen. She had 2 hips already replaced and needed another one, but she is not healthy enough to get one.
What was her story? How did she get to this point?
As I was about to leave, I heard her say, "I have MS."
Before she got to where she is now, assuming her obesity came after MS, what if she had Ampyra?
I know that may be a long shot for improving where she is now, but what if she wanted it and insurance hadn't covered it? What if she had been someone like me, and it would have worked? Wouldn't quality of life have been a lot better?
I know I'm inserting a lot of assumptions here, but doesn't everyone deserve a chance to be the one in three where Ampyra is a miracle? If it doesn't work, people stop taking it, because the side effects are not fun.
I'll figure out a way for everything to work for me. But I'm thinking... I got a chance.
Doesn't everyone deserve a chance? How can we get people a chance? How do we assure that, if they move between insurance companies, the good things remain intact?
If we cover other drugs that do far less, if we mandate coverage for certain drugs, free preventive screenings, etc., then what about this? What about quality of life? Are we considering that?
Doesn't everyone deserve a chance at increased quality of life, a chance at a life turned completely upside down, flipped, turned this way and that, but in a completely unexpected, miraculous, amazingly good way?
I believe they do.
So now what?
Peace.
I've been on Ampyra for over 2 and a half years. If you look back at many of my previous posts, they may well qualify for an Ampyra commercial. Ampyra is thought to help the walking ability for one in three people with MS. It went through extensive clinical trials, in part to determine the correct dosage. It was shown, basically, to increase the speed of walking on average by 25 percent over the course of 12 weeks. That was the trial. Drug approved by FDA. The end.
25 percent doesn't sound like a lot. But reconsider... this was for the entire sample of people. We're hearing that Ampyra works for 1 in 3 people. Thinking generally, if that is the case for Ampyra, then if you do some pretty basic and not FDA-approved math, you're really finding that, for the people for whom Ampyra works, it improves their walking speed by 75%... over the course of 12 weeks.
What happens after 12 weeks to those people? MS is very individualized, so every person is different. For me, I could only walk about 25-50 feet before Ampyra. After 4 months, it took me about an hour to make it around a track (which is much further than 25-50 feet!). This fall, so about 2 years after starting Ampyra, I was under 20 minutes around a track.
But what was not tested? What was not tested was everything outside of leg muscles. If Ampyra fixes connections to make leg muscles work better, then it makes sense that Ampyra will help other muscles be stronger as well. And for me, this is true, but an actual clinical trial can only test a limited number of things. So I have stronger core muscles which is very important. I have stronger hand muscles so I can now write. If you think of any muscle, it's stronger. Beyond that, unexplained, is I haven't had an MS exaccerbation during that time, and I've only been sick once. My mom remembers when I would have exaccerbations - the fatigue, the falling, and how tough they were mentally. I don't tend to get sick, but since Ampyra, I have had a lot of stress at times and still managed to stay healthy. There is something there. For me, for now, the course of MS has been reversed some... well, 75%... I am 75% better than I was, but I still have a long way to go.
It's probably because, as I've said previously, my MS is different (everyone with MS will tell you the same thing - theirs is different). I've never had brain lesions. I had two spots of lesions on my spine. One of those spots is gone. The other lesion area is small. Yet I have so much trouble walking - it must be the broken connections that occur on conducting nerves, as a results of the lesions. Those broken connections are where Ampyra works.
I've been on Provigil for longer than that... I don't know how long. Provigil has been studied in MS with mixed results. It is thought to improve energy in people with MS. For me, it has done just that. I believe that the combination of Provigil and Ampyra may be part of why I am doing very well. When I forgot to take Provigil one day, I couldn't stay awake. Other bad things happen if I don't take it for a couple days. Provigil recently went generic so it is a lot cheaper now.
PROBLEM:
Some insurance companies cover Ampyra. Some do not. Some insurance companies cover Provigil for MS. Some do not. If you have to change insurance companies, it can be, well, I am speechless. One company may cover Ampyra for MS, the other may cover Provigil for MS, and neither may cover both.
SIDENOTES:
It's fascinating... the combo of 2 drugs has, I believe, altered my life completely. I'll find a way for it to work, to get both drugs, but when someone has been two drugs for so long, it's hard to imagine that those drugs wouldn't be covered (maintained), or that there wouldn't be some kind of mandate about coverage. I'm all for mandating coverage for contraceptives, but what about other things?
And if we're talking medical necessity, I can think of a bunch of drugs that are not medically necessary, but that are covered by both insurance companies. So that argument doesn't hold.
A CHANCE:
I believe that everyone deserves a chance. There are other insurance companies that do not cover Ampyra. So other people don't get the chance to try it - even with my current insurance company, my doctor had to push a bit. And it's a lot less expensive than many other MS drugs.
I was getting my wheelchair fixed the other day. As I was waiting (for 45 minutes), a woman was in the store talking about her power wheelchair. I wondered what her story was. What seemed clear to me is that she was extremely obese and was currently in a power chair. The questions she asked led me to believe that she likes to stay in the chair as much as she can. She hasn't used a manual wheelchair for a long time. She is on Medicaid. Her current power chair was $15k. Her new chair will cost $22k and I am assuming Medicaid will pay for this. She was on oxygen. She had 2 hips already replaced and needed another one, but she is not healthy enough to get one.
What was her story? How did she get to this point?
As I was about to leave, I heard her say, "I have MS."
Before she got to where she is now, assuming her obesity came after MS, what if she had Ampyra?
I know that may be a long shot for improving where she is now, but what if she wanted it and insurance hadn't covered it? What if she had been someone like me, and it would have worked? Wouldn't quality of life have been a lot better?
I know I'm inserting a lot of assumptions here, but doesn't everyone deserve a chance to be the one in three where Ampyra is a miracle? If it doesn't work, people stop taking it, because the side effects are not fun.
I'll figure out a way for everything to work for me. But I'm thinking... I got a chance.
Doesn't everyone deserve a chance? How can we get people a chance? How do we assure that, if they move between insurance companies, the good things remain intact?
If we cover other drugs that do far less, if we mandate coverage for certain drugs, free preventive screenings, etc., then what about this? What about quality of life? Are we considering that?
Doesn't everyone deserve a chance at increased quality of life, a chance at a life turned completely upside down, flipped, turned this way and that, but in a completely unexpected, miraculous, amazingly good way?
I believe they do.
So now what?
Peace.
Tuesday, January 29, 2013
What your heart loves best
This past weekend was the weekend of what has become a yearly visit of James Hersch to our church. James plays a guitar and sings, mostly to his own songs. I don't know how his voice remains so strong over so many years - but it's a great, high tenor voice that sings various stories. These are his stories, but they are written so they can be applied to the lives of others, and every year, a few of them apply to my life, and in a way they feel like they are also my stories. I suppose we can share them.
It's been a time of change in life - then again, it seems like life is always changing in one direction or another at all times. I don't think I can imagine life without a bunch of change. Right now I'm ending my time at a company where I have been for almost 15 years, and I'm going to another company. Definite change - I'm pursuing my dream by going to an organization where I can apply analytics and policy to healthcare. It's not advocacy for anything either, and that's also exciting. I can look at things as they are, very objectively.
As this change is happening, I see my daughter quickly growing up, almost 10, and experiencing her own constant changes. It hasn't been an easy time for her - I will skip details - but I make up that she questions her value, she questions whether her presence is missed when she is not there, she questions whether others even notice when she is not there. And then there were the children who died in Connecticut, and I can't tell what she thinks of that - she doesn't want to talk about it - but it bothers her. And so I see a bit of anger, a bit elevated.
So we have James Hersch at church, me thinking I have found my dream, and my daughter struggling a bit. What to do with this?
Church is where my daughter feels safe. I can sense that. She has a favorite song that James performs every year because she loves it. He performed it again this year, once on a Saturday night concert and again on Sunday, when she sang (very quietly) with him. After the Saturday concert, she wanted to tell him something and waited patiently, but people went in front of her, and she came to me crying. It's the feeling forgotten thing. I told her we would wait, there was no hurry. But I could tell this was another reminder, in her mind, of perhaps being forgotten. In a miracle, James came over to her to tell her how special it was that she was there every year, and that he loved seeing her smile. She was not forgotten - in the place where she is safe - church - still safe - and perhaps building back the sense of value she used to have, so strongly, in herself.
In my world, with changing jobs, there has strangely not been uncertainty. I'm ready, it's time, and I'm following my heart, even if that sounds cheesy. There is a song called "What Your Heart Loves Best," that I heard on a CD recently, sung by James. I turned his story into my story, as the song goes, "ain't it funny, ain't it strange, how we choose our lives... someday we're gonna change... and what matters most, is what your heart loves best." James sang that song, and I really feel it. Before this job, there were other potential jobs, but there was always some hesitancy in them, with me wondering if they were right, wondering if I should leave where I have been for almost 15 years. But the hesitancy has gone with this job. I had 5 interviews - a lot! Each interview made my desire for this job be even stronger. I better be right! But I think I am right.
By Sunday we had heard many songs. On Sunday morning my daughter sang with James and I think she may be making a turn. By Sunday, she was getting excited about an upcoming dance performance. After church, while the adults had our annual church meeting, she and her friend built airplanes and made them open into huge houses. When I dropped her off at dance tonight, she was excited. Hopefully the feelings of value she gained over the weekend will continue. She really loves dance.
I think my husband may be the only not having huge change! When it comes down to what is important, it's "what your heart loves best." And James sings this to us, and reminded my daughter that she is special, that she is not forgotten.
God has found us in the midst of all of this. Often I have questioned, God, if something is really out there for me, where is it? God, this new hurdle with my daughter... why? She is a child.
Not everyone gets their prayers answered, even with God in the midst of it all.
But this time, prayers were answered, amidst all the change.
Peace.
It's been a time of change in life - then again, it seems like life is always changing in one direction or another at all times. I don't think I can imagine life without a bunch of change. Right now I'm ending my time at a company where I have been for almost 15 years, and I'm going to another company. Definite change - I'm pursuing my dream by going to an organization where I can apply analytics and policy to healthcare. It's not advocacy for anything either, and that's also exciting. I can look at things as they are, very objectively.
As this change is happening, I see my daughter quickly growing up, almost 10, and experiencing her own constant changes. It hasn't been an easy time for her - I will skip details - but I make up that she questions her value, she questions whether her presence is missed when she is not there, she questions whether others even notice when she is not there. And then there were the children who died in Connecticut, and I can't tell what she thinks of that - she doesn't want to talk about it - but it bothers her. And so I see a bit of anger, a bit elevated.
So we have James Hersch at church, me thinking I have found my dream, and my daughter struggling a bit. What to do with this?
Church is where my daughter feels safe. I can sense that. She has a favorite song that James performs every year because she loves it. He performed it again this year, once on a Saturday night concert and again on Sunday, when she sang (very quietly) with him. After the Saturday concert, she wanted to tell him something and waited patiently, but people went in front of her, and she came to me crying. It's the feeling forgotten thing. I told her we would wait, there was no hurry. But I could tell this was another reminder, in her mind, of perhaps being forgotten. In a miracle, James came over to her to tell her how special it was that she was there every year, and that he loved seeing her smile. She was not forgotten - in the place where she is safe - church - still safe - and perhaps building back the sense of value she used to have, so strongly, in herself.
In my world, with changing jobs, there has strangely not been uncertainty. I'm ready, it's time, and I'm following my heart, even if that sounds cheesy. There is a song called "What Your Heart Loves Best," that I heard on a CD recently, sung by James. I turned his story into my story, as the song goes, "ain't it funny, ain't it strange, how we choose our lives... someday we're gonna change... and what matters most, is what your heart loves best." James sang that song, and I really feel it. Before this job, there were other potential jobs, but there was always some hesitancy in them, with me wondering if they were right, wondering if I should leave where I have been for almost 15 years. But the hesitancy has gone with this job. I had 5 interviews - a lot! Each interview made my desire for this job be even stronger. I better be right! But I think I am right.
By Sunday we had heard many songs. On Sunday morning my daughter sang with James and I think she may be making a turn. By Sunday, she was getting excited about an upcoming dance performance. After church, while the adults had our annual church meeting, she and her friend built airplanes and made them open into huge houses. When I dropped her off at dance tonight, she was excited. Hopefully the feelings of value she gained over the weekend will continue. She really loves dance.
I think my husband may be the only not having huge change! When it comes down to what is important, it's "what your heart loves best." And James sings this to us, and reminded my daughter that she is special, that she is not forgotten.
God has found us in the midst of all of this. Often I have questioned, God, if something is really out there for me, where is it? God, this new hurdle with my daughter... why? She is a child.
Not everyone gets their prayers answered, even with God in the midst of it all.
But this time, prayers were answered, amidst all the change.
Peace.
Tuesday, January 1, 2013
Heel to toe
On 60 Minutes this week, there was a story about chips implanted in a person's brain that enabled the person to move a prosthetic arm and hand by having them simply think about moving it with their mind. I thought how similar that is to what I have experienced with Ampyra - getting function back, but having to think through movement rather than movement happening automatically. And as we enter 2013, I have to wonder, what may be next?
It's really amazing how things have continued to change as I have continued to take Ampyra over the past 2 and a half years. I suppose people can get tired of reading of the changes, but it's my blog, and I hope perhaps someday I'll have time to look back at the changes that occurred over time, which now are in individual entries in this blog which contains more than just Ampyra. 2012 was another great year on Ampyra, and the time on Ampyra strangely has helped me through other very tough parts in my life which I don't discuss here.
For Christmas 2012, we went to my parents' house. Getting around their house is never easy and the most annoying part is the 13 stairs leading to the upstairs, where all the bedrooms are. Forever, I have scooted on my rear up these stairs, with my mom helping so my legs don't slide off the stairs. At one point, the stairs were almost impossible, in part because they are also very narrow.
This Christmas I got to the stairs, at 10pm, and in my mind, I thought, it just seems like I should be able to climb these steps rather than sit on them. I could visualize climbing the stairs. Visually it seemed so easy. I called my mom and asked her to help by lifting my left foot onto the first step (I can sometimes swing my own leg/foot onto stairs, but those stairs aren't wide enough to do that.). Once she did lifted my left foot, I held onto each of 2 banisters and thought about pushing up on my left leg. It definitely wasn't automatic, but when I really thought about pushing, it worked. My left left pushed up and I swung my right leg to land on the same stair. My mom continued to lift my left leg onto each step until we were halfway up the stairs, at which point there is only one banister.
I then transitioned to using the stairs as banisters. Visually, it still seemed possible. My legs did 95% of the work, but I needed leverage, using both arms for balance. Again, via really thinking of pushing on that left leg, I did the same thing, and I made it to the top. I did this new routine on 2 consecutive days, at the time of day when Ampyra really "kicks in," which is about 10pm.
Stairs - so simple - or not. These are the same stairs I would bound up, 2 at a time, as a kid, never using the banister, and never thinking that climbing stairs involved so much.
At night I have been working on going from sitting to standing. Since Ampyra really kicks in at about 10pm, I do this work then. Recently I've been able to stand from our bed without using my hands to push up. Sometimes I get stuck and then I have to think about how standing occurs. I actually have had my daughter stand for me so I can watch how people stand! She finds this funny.
I noticed, when stuck, that I wasn't moving forward in standing - in standing, you actually do move your body forward a bit. I move forward a lot, and if I don't, I get stuck. But one night (and the night before that), I had a new revelation! When a person stands, it's not just the quad (upper leg) muscles that are used. When I move forward in standing, if I move from my heels to pushing on my toes, lower leg muscles are somehow triggered and that helps me to stand. When the upper leg muscles start to tire, I can use those lower leg muscles, as my toes dig into the ground, or I can use all the muscles at once if I really think about it. It's another thought process, but it has to occur fast... when "stuck," right in the first second, I have to think to push on my toes. Then I feel all the muscles work (as opposed to someone who normally stands) - I feel outside quad muscles, calf muscles, toes digging to the ground. And then I hold that standing position. It's awkward... but I can sometimes hold it long enough to relax a bit and stand straighter, without everything tensed in a state where I am much like a stick, or the Jenga block at the end of a Jenga game, where any slight movement can make the block topple.
Such easy things - going up stairs, standing up... they are automatic for so many people. For me, they require a lot of thought - sometimes quick thought. Isn't it amazing - all those muscles, big and small, that work together for such simple things?
And then there is so much else - not needing as much sleep is another thing. You see, when I discovered things about standing, it was after 10pm. Everyone was asleep and I was ready to yell the great news. In the morning, it wasn't quite the same feeling of wanting to proclaim standing. "Look at me! I can stand! Did you know?! There are all these muscles involved! Just watch!" Then again, I'm awake before everyone. I don't need as much sleep. Everything is very different.
There are dreams, as there have always been dreams. In my dreams, I look at the stairs and simply walk up them, effortlessly. In my dreams, I wonder why I have a walker, so I leave it behind and walk smoothly and effortlesly. In my dreams, everything is so easy, automatic, and effortless.
I suppose being able to do these things was a pretty good way to close out 2012. Hopefully, 2013 will bring more great surprises. No need for new year's resolutions. What will happen will happen, and I will give it everything I have. No limits. And for anyone who doubts, never say never.
Peace.
It's really amazing how things have continued to change as I have continued to take Ampyra over the past 2 and a half years. I suppose people can get tired of reading of the changes, but it's my blog, and I hope perhaps someday I'll have time to look back at the changes that occurred over time, which now are in individual entries in this blog which contains more than just Ampyra. 2012 was another great year on Ampyra, and the time on Ampyra strangely has helped me through other very tough parts in my life which I don't discuss here.
For Christmas 2012, we went to my parents' house. Getting around their house is never easy and the most annoying part is the 13 stairs leading to the upstairs, where all the bedrooms are. Forever, I have scooted on my rear up these stairs, with my mom helping so my legs don't slide off the stairs. At one point, the stairs were almost impossible, in part because they are also very narrow.
This Christmas I got to the stairs, at 10pm, and in my mind, I thought, it just seems like I should be able to climb these steps rather than sit on them. I could visualize climbing the stairs. Visually it seemed so easy. I called my mom and asked her to help by lifting my left foot onto the first step (I can sometimes swing my own leg/foot onto stairs, but those stairs aren't wide enough to do that.). Once she did lifted my left foot, I held onto each of 2 banisters and thought about pushing up on my left leg. It definitely wasn't automatic, but when I really thought about pushing, it worked. My left left pushed up and I swung my right leg to land on the same stair. My mom continued to lift my left leg onto each step until we were halfway up the stairs, at which point there is only one banister.
I then transitioned to using the stairs as banisters. Visually, it still seemed possible. My legs did 95% of the work, but I needed leverage, using both arms for balance. Again, via really thinking of pushing on that left leg, I did the same thing, and I made it to the top. I did this new routine on 2 consecutive days, at the time of day when Ampyra really "kicks in," which is about 10pm.
Stairs - so simple - or not. These are the same stairs I would bound up, 2 at a time, as a kid, never using the banister, and never thinking that climbing stairs involved so much.
At night I have been working on going from sitting to standing. Since Ampyra really kicks in at about 10pm, I do this work then. Recently I've been able to stand from our bed without using my hands to push up. Sometimes I get stuck and then I have to think about how standing occurs. I actually have had my daughter stand for me so I can watch how people stand! She finds this funny.
I noticed, when stuck, that I wasn't moving forward in standing - in standing, you actually do move your body forward a bit. I move forward a lot, and if I don't, I get stuck. But one night (and the night before that), I had a new revelation! When a person stands, it's not just the quad (upper leg) muscles that are used. When I move forward in standing, if I move from my heels to pushing on my toes, lower leg muscles are somehow triggered and that helps me to stand. When the upper leg muscles start to tire, I can use those lower leg muscles, as my toes dig into the ground, or I can use all the muscles at once if I really think about it. It's another thought process, but it has to occur fast... when "stuck," right in the first second, I have to think to push on my toes. Then I feel all the muscles work (as opposed to someone who normally stands) - I feel outside quad muscles, calf muscles, toes digging to the ground. And then I hold that standing position. It's awkward... but I can sometimes hold it long enough to relax a bit and stand straighter, without everything tensed in a state where I am much like a stick, or the Jenga block at the end of a Jenga game, where any slight movement can make the block topple.
Such easy things - going up stairs, standing up... they are automatic for so many people. For me, they require a lot of thought - sometimes quick thought. Isn't it amazing - all those muscles, big and small, that work together for such simple things?
And then there is so much else - not needing as much sleep is another thing. You see, when I discovered things about standing, it was after 10pm. Everyone was asleep and I was ready to yell the great news. In the morning, it wasn't quite the same feeling of wanting to proclaim standing. "Look at me! I can stand! Did you know?! There are all these muscles involved! Just watch!" Then again, I'm awake before everyone. I don't need as much sleep. Everything is very different.
There are dreams, as there have always been dreams. In my dreams, I look at the stairs and simply walk up them, effortlessly. In my dreams, I wonder why I have a walker, so I leave it behind and walk smoothly and effortlesly. In my dreams, everything is so easy, automatic, and effortless.
I suppose being able to do these things was a pretty good way to close out 2012. Hopefully, 2013 will bring more great surprises. No need for new year's resolutions. What will happen will happen, and I will give it everything I have. No limits. And for anyone who doubts, never say never.
Peace.
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