Amy Gurowitz

March 12-12-12 Project Member

Transcript

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Marissa:  Welcome to the 12 Months, 12 Journeys, 12 Lessons Podcast. This show features monthly a different health condition or cause. The goal of this show is to learn from and uplift our guest. My name is Marissa Christina from abledis.com, and I’m excited today about spending time with today’s guest. Amy Gurowitz is regarded in the MS internet community as both an advocate for and a voice of the MS experience.

Amy holds a Master’s degree in educational technology from NYU. She developed the concept for the non-profit organization known as MS SoftServe, and is now the president of that non-profit organization. In addition to writings on her personal blog, mslol.com, Amy is a regular contributor for HealthCentral’s MS site, and hosts a podcast entitled, “MS LOL” and “MS Unplugged” at BlogTalkRadio. It is with great pleasure that I welcome to this show a fierce leader and advocate, Amy Gurowitz. Hello, Amy.

Amy:  Hi Marissa, thank you so much. That was quite a welcome.

Marissa:  For the listener, this month’s 12-12-12 project is featuring multiple sclerosis, most often referred to as MS, and Amy has been living with MS for 23 years. Amy, let’s start with MS 101. Can you educate us on what MS is?

Amy:  One of the things that’s most significant about MS is that it’s a different experience for every single person. Of course, we all have common ground and we all have overlap in symptoms, but there are no two cases that are exactly alike. That’s a part of the difficulty of learning about it.

Marissa:  Let’s go a little technical for the listener. I wanted to get into something if you could help me out here. The disease I heard has these four courses, and let me go ahead and read them out – relapsing-remitting, primary-progressive, secondary-progressive, and progressive-relapsing. Are these four courses stages that everyone with MS is going to encounter?

Amy:  No, absolutely not. Before I detail that, why don’t I tell you what MS is. Multiple sclerosis means “many scars”; it translates directly that way. What’s happening when a person has MS is that their immune system is confused, and for some reason or another, it’s attacking the myelin sheath that surrounds our neurons. It results in scars. The myelin sheath allows our signals to conduct quickly, easily, freely so when signal gets interrupted, millions of different things can happen as a result of it, which is also why everyone has a different case of the disease.

The stages that you spoke of by no means are experienced by everyone. For a large percentage of people, they’re diagnosed at relapsing-remitting, and that’s all they ever are.  Relapsing-remitting is the most common way to start, but a good percentage of people go secondary-progressive. When you’re primary-progressive, it means that you don’t have relapses – meaning your symptoms just get gradually worse and you have no periods of time where you feel better. That’s the case for relapsing-remitting. You have periods of heightened symptoms, and then those go away.

While there still may be symptoms that are ongoing and onlasting, for the most part, the major symptoms of an episode go away and either with treatment or, depending on your individual circumstances, you get back to the level of health you may have been dealing with, which may not be ideal, but prior to the episode.

Secondary-progressive is when you switch from relapsing-remitting to progressive. You haven’t started as progressive, but you’re ending out as progressive. What happens there is that, as the scars accumulate from your relapsing-remitting, the repair that happens that allows us to remit can only be done so many times. You get to a point where if there’s enough axon death that sometimes happens with the MS attacks, there’s just not as much to come back to.

That’s the brief overview there.

Marissa:  Let’s talk about your individual experience. I had an opportunity to go through the blog, which is pretty fantastic. I want you to take me back. You had mentioned you visit a friend in New Jersey, and you were there for a weekend and woke up to strange symptoms. Take me back there.

Amy:  I was going to school in Baltimore at the time. I grew up in New Jersey, so I was going back and visiting a friend there spending the weekend at her house. I woke up in the morning and I felt numb and tingly – only down one side. I swear it was divided at my nose, down the center of my face, down the center of my body.

I was a college kid who’d just studied Psych 101, so I had a pretty good idea that something cerebral might be going on, although I certainly didn’t let myself get freaked out about it. I figured, “Well, I’ll wait and see how the day progresses.” I stretched – anything I could think of. When it didn’t improve, I called my doctor. I think that a lot of people’s MS experiences are not diagnosed for a very long time, but in my family, when something’s not right, you call the doctor.

I didn’t even have my parents available to me and said, “This is weird. I’m calling the doctor.” I was a college kid visiting at home. That continues to blow my mind. The doctor said if there were any changes to give her a call and come in. I experienced some slight double-vision – very slight, but double-vision nonetheless.

So I went in, and they did a series of tests. In 1988, it was different, and she certainly didn’t have any idea that I was dealing with MS or anything, so she was just taking blood and going through the motions to see if anything was abnormal. There wasn’t, and when I started to have more significant double-vision, I called back and she suggested I check into the hospital, which I did.

At that point, MS was suspicious – that was a possibility. I didn’t know it was a possibility, but in retrospect, they ran a visual acuity test, they ran different scans, they did brain scans, CT, CAT scans and whatnot. I was just in the hospital for a couple of days, and then, as I was checking out, they said, “We want you to go get a brain MRI.” In 1988, that was still pretty early in the MRI history, so we had no idea what they were looking for. I went for the MRI. Cut to a couple days later, I had MS.

Again, at that time, they didn’t know much about MS. There were no drugs to treat it, and they didn’t understand it. Their understanding of it was nowhere near what it is today. I went to the hospital, they gave me a neurologist, and he said, “Don’t get heated, because we hear that makes things worse. Stress makes it worse, too. Okay, we’ll see you later.” So I went back to Baltimore and sat on that. That was absolutely devastating and totally scary.

Marissa:  I can imagine too, because one of the things I read was that you were diagnosed on your twentieth birthday, so recalling what that day was like – they just called you in and…

Amy:  Yeah, pretty much. They’re like, “Okay, look here, and look here, and these are scars, and it seems to me you have MS.” Again, my parents were very distracted with their own issues. My mom had just moved to Florida; they just divorced, so no one was really around to help me navigate this.

When I got back to Baltimore, I decided, “I’m right at John Hopkins University’s doorstep, I’ll go there. They have a pretty prominent MS center there, and I’ll get a second opinion.” So I did. I went to go see a doctor there, and his take – and it’s something that’s more familiar to me now – was that, “You’ve only have this one thing, so we don’t know that it’s MS.” “Multiple” means that it’s happened repeatedly. Of course, it means lots of scars, but it also means that there is a history of it happening, and mine was kind of a newly-born thing, so there was no history.

I wasn’t really willing to accept that. I wanted to accept the fact that I had MS and move on. He suggested I go for a spinal tap. I thought that idea sounded horrible, because what 20-year-old really wants to go for a spinal tap, and considering there weren’t any people like parents or anybody that was influencing me or making recommendations, I just didn’t go for the spinal tap.

But it became evident fairly quickly that, yes, what I was dealing with was clearly MS. I was diagnosed in June of ’88, and by March of ’89 I had a full-fledged, rather severe attack.

Marissa:  Wow, it went pretty quickly. I’ve read that there are these various models – these diagnostic protocols for MS – and I gathered from reading that the consensus for the diagnosis is using McDonald Diagnostic. Are you finding that people in the MS community are getting more quickly than in 1988, or is it still hard?

Amy:  I think it’s still hard, and they are getting diagnosed more quickly. It amazes me. I thought with the MRI, what it is and with the understanding what it is, that people wouldn’t struggle with people not believing what they’re experiencing. It’s just an emotional cesspool when you have these problems that are very real, and your doctors, after years making question marks and wondering about whether or not you’re seeing a therapist – it’s just demoralizing that people aren’t, in many cases, being taken seriously.

Because MS presents itself so very differently in each person, it can be really hard to diagnose. One of the things that’s used as a relatively reliable test is a spinal tap, as I mentioned – in the spinal fluid, there’s a certain amount they can see. But just because you’ve had a spinal tap and it proved negative, doesn’t mean that you don’t have MS. Just because it’s such a variable disease, it makes it like throwing darts at a moving target. It’s very difficult. I think it’s one of the hardest things for many people, whereas for me, having been diagnosed, I was just dealing with the whiplash of I was fine yesterday, and today I have MS.

Marissa:  Are the symptoms broken down into categories of treatable and untreatable?

Amy:  I can give you my history, because my experience moved along with the development of disease-modifying drugs.

Marissa:  Great. Because, as you say that, there are currently eight FDA-approved drugs, right?

Amy:  Yes, and there are also new ones constantly moving through. They’re making major progress. There are lots to be hopeful about now, but at the time, again, I had nothing, and for the first five years, that was the case. In 1993, the first drug was released (Betaseron) and they did the first, and last ever, drug lottery. It sounds more recreational than it does a desperate need for a disease modifying medication. But whatever the case may be, there’s a high statistic of people in this country – right now, they’re saying 400,000 people in the US alone, but quite frankly, they’ve been saying 400,000 for many years, and I’m sure that number has increased pretty dramatically because people are so often diagnosed with MS.

Hundreds of thousands of people wanted the medications, and what was at the time known as Berlex, the pharma now known as Bayer, couldn’t produce it quickly enough for everyone. So what they did was they set up a lottery. You were assigned a number, and that number would reflect when you would get to go on this drug. I drew a very high number, and with the way things looked, I wouldn’t be able to go on it for a year and a half, and with all the hoopla and excitement happening, I really didn’t want to wait.

I instead spoke to my doctor and asked what else was on the pipeline, and at that point, there were late stages of the drug trial for what is now known as Copaxone, and he put me on it. It was beyond the blind study; it was just trying to gather more information for the FDA. Quite frankly, I was a little frightened of Betaseron because of the flu-like symptoms that come with interferon drugs, and it just sounded like, “Oh my God, do I really want this? Where’s the tradeoff here?”

So I went on Copaxone at that point, and I stayed on it through when it was passed by the FDA a couple years later. I was on it a total of 15 years, and it really made a difference for me.

Marissa:  I’m curious, is it that you need these drugs because MS is considered an attack? Are these attacks that are happening and you’re taking drugs to stop the attack? Can you explain it?

Amy: That’s an excellent question. These drugs are only proven to slow the progression of, and in order to prove something in a drug trial, the only way they could have the proof that it’s effective is based on progression and how they expect it to slow the progression. So if most people who have MS are progressing, it’s sort of like an insurance policy – you’re taking this drug and hoping that it’s staving off progression.

A lot of these drugs also help with symptoms. They just can’t advertise that, because it’s not “proven.” It’s not proven in a test environment, so they have to just only list what’s proven. When I went on Copaxone, I went from not being able to walk more than a couple blocks to being able to walk far enough to make my feet hurt, which I hadn’t done in years and years.

I had constant fatigue before Copaxone. It took about three or four months for me to feel the benefits, but I wasn’t fatigued anymore. The difference was really dramatic. Copaxone was a great drug. Besides the fact that it was an everyday shot, it had very little to no side effects, even on the label. It just felt like this is a great thing.

Marissa:  So Copaxone for how many years?

Amy:  15.

Marissa:  15 years, and then is it like you move into a new drug in the new phases as things come out?

Amy:  Not at all. Again, every person is different, but in my case, my neurologist said, “You know what? I’m seeing some disease activity on your scans that I don’t like.” It was more scan-based than symptom-based. Although I am in a different place than I was 10 years ago, 15 years ago, even though I’m still relapsing-remitting, I’ve accumulated symptoms that don’t go away, and they’re starting to mount. It’s a longer list. At that point – this was in ’09 – my physician made this recommendation, and he said at that time, “I’m thinking that Tysabri or Rebif would be good for you.”

Tysabri, although it had a much higher percentage of success, also had with it a 1/1000 chance of developing a brain infection (PML) and there were people dying from this infection. It just didn’t feel like a 1/1000 risk was worth it to me. Even though they knew it was there, there were still people who were dying from it because it’s not something that’s easily determined and can get out of control.

I said, “Okay, I’ll take Rebif.” I went on that until about two months ago actually, so for almost two years. I’ve spoken to people about how hard  it is to be on these MS drugs because they’re injections – who wants to inject? – and because it’s really a leap of faith insurance policy. You don’t know where you might have been otherwise had you not.

Marissa:  And we don’t even want to get into the cost. I won’t even get you there, but I’m assuming that, if you’re having to give yourself shots daily – I’m assuming shots daily?

Amy:  Yeah. I have been very lucky because I’ve always had good insurance, and I consider myself very blessed for that, because the medications are off-the-charts expensive. They really are. Interestingly enough, I had switched within the last two months to Tysabri because I just didn’t feel like Rebif was helping, and I was feeling like I was progressing, and I was nervous, and I didn’t want to wait. Most of these medications have only been proven to assist with relapsing-remitting. Of course, being proven falls into a very small category, so based on what we just discussed, people who are in progressive situations, while they’re still trying drugs, are also going with a leap of faith.

But I do know people who are secondary-progressive who are responding pretty well to some of the different meds – it’s just not proven. Let me also say that there are tons of medications to help treat symptoms, and that’s all there was back in the day. There were only meds, so in addition to what I’m now on – one monthly infusion of Tysabri – I’m on a slew of other medications to treat a wide array of other symptoms. I can go over that with that with you.

Marissa:  Yeah, let’s do it. For the listener, it’s good to know what the experience is like, especially since we’re just thinking, “Oh, it’s just one shot a day, or a couple shots a day.” So let’s hear the cocktail.

Amy:  Yeah I have quite, quite an intense cocktail of meds. I guess most notably, and one of the more common MS symptoms, is incontinence. I’ve been dealing with that since I was in my twenties, and that’s a lovely approach to dating. I’ll tell you, dating when you have MS is the litmus test for a marriage that will work. If you’re with someone and they can deal with what may or may not happen, then you know that it’s the long-haul person.

Very early on I was dealing with incontinence. I started taking Ditropan, which is one of the meds that helps with incontinence. The thing is, though, it always struck me as unfortunate. With my version of MS, I have not only incontinence, but an inability to pee. Can’t we have something in the middle?

Marissa:  Can I catch a little break? Thanks.

Amy:  Exactly. In addition to needing these pills for incontinence and helping me hold it, I also would need to self-catheterize, which of course would make most people cringe. But, that which does not kill you makes you stronger. I’ve been doing that since my twenties, and it’s effortless, and it’s actually a relief, because when you have to go but you can’t go, but then you’re also incontinent, that’s just an every-moment nightmare, pretty much.

What that also suggests, because I’m on the self-caths, which I use every time I have to pee, I would like it if the Ditropan – or whatever the incontinence medication was – was like shutting the valve off (because I can access myself; it’s not like I’m going to struggle with having to pee), but it doesn’t wotk that way, and this drug only helps a little- or as much as it can in a given day. So that’s a big challenging symptom, but it’s one of those things that, once you learn to cope with it, you’re very impressed with yourself. And everyone is very impressed with you, if you’re willing to tell them.

Marissa:  I’m impressed. I’m on the board. I’m impressed.

Amy:  Check.

Marissa:  Check.

Amy:  So in addition to that, for years, and years, and years, I was dealing with spastic pain. I don’t know if you know exactly what spasticity is. I didn’t.

Marissa:  I’m sort of getting the sense from my research, but hit us with it.

Amy:  What spasticity is each muscle group has a muscle that flexes at the same time that a muscle relaxes. In that, when you’re dealing with spasticity, they both flex at the same time. So it’s this intense pain that I can liken to giving childbirth. The only thing I can relate it to is childbirth, because it is just the most excruciating tightness and pain that I experienced outside of labor.

I was taking, for many years, Baclofen at very high doses to do that, and that’s something I just went off because I realized I was experiencing an off-label side effect with that. It’s tough, because when you have MS, you’re dealing not only with the ambiguous symptoms of MS, but you’re also dealing with the side effects of medications that sometimes mirror the symptoms of MS. You just don’t know what you’re dealing with. Is it the side effect?

I started dealing with a lot of muscle weakness that seems like it was happening after many years of it, just assuming I was progressing. It seems to be happening as a result of Baclofen, so I have since gone off that. I’ve been doing okay without it. The pain is a lot more tolerable than it once was. In addition to that, I’m on preventative stuff, like macrobids since I self-cath – it prevents bladder infections. I’m on a wide array of emotional drugs, if you will.

Some of it could be seen as actually because of the MS and the scarring that you have to deal with all sorts of psychological issues or it could just be because you have to deal with MS. There are so many different valuables there, but I’m on significant doses of Zoloft for depression, and I’m on Lamictal as a mood stabilizer, which is such a big expression, but it works – it does something for me.

And Busbar for anti-anxiety, and Ampyra, which is also an MS drug. It’s an oral drug, and it came out a couple of years ago – it was passed by the FDA – and they only thing that they could state on the record was that it improves walking speed. Obviously, it’s kind of hard for there to be an MS drug that picks and chooses that way, but that was the only way they could establish that it was effective in treating it. It’s easier to put a number on walking speed than it is on any of the number of other symptoms.

I’m not sure that that’s working for me or not, and when I’m in a different place where I’m more stable in using my current regimen, then I’ll be able to pull myself off it very quickly and see if it’s working. There are just so many variables right now. I also did a drug trial for about six months, and that was a period of time that I wasn’t making changes for either – it’s for BG-12, which is almost past the FDA. It’s a Biogen drug that’s oral, and I just did six months of it to establish safety with other medications.

I’m glad to be done with that, actually. I’m very into the idea of the greater good and doing the Copaxone trial that I did. It really feels important to me to participate to move things forward for other people. It was definitely pretty taxing, the last time I did that drug trial.

Marissa:  I can imagine. Are there other things that you’re doing to treat MS? Are there other things that people can do if they’re not taking medications?

Amy:  There are lots of other things they can do. I’ve been kind of straight and narrow with my treatment, and I think having been diagnosed and living with MS for five years before there was any medication made me oh-so-happy that there are finally not only medication, but options. For me, I’ve never been like, “I don’t want medication.” I don’t know what it is to be an adult without MS, and when medication hit, it was just a life-changing experience for me.

There are so many different more holistic approaches and alternative approaches. I think these things are good from anyone/everyone with MS – yoga, and meditation, and eating well. All those things are good. Unfortunately, my will power is really lacking. It’s hard when you’re really trying to cope with everything you can’t do on a given to then be really hard on yourself with a regimen.

Marissa:  And the emotional component too. Feeling that emotional sense, a lot of times you’re drawn to maybe food.

Amy:  Food!

Marissa:  Yeah, totally.

Amy:  I want to have a cookie right now.

Marissa: Yeah, for sure.

Amy:  But those, I think, work really well for lots of people, and during the time periods where I have been able to stick to it, they’re also helpful to me. There are specific diets that are supposed to be MS-related diets. Even going back into the ‘70s, the Swank diet was one, although that’s become somewhat outdated in terms of the types of recommendations for what they recommend eating – ways that people don’t eat anymore in terms of fat. But it is a low-fat diet, and it’s healthy roughly for anyone.

I did a diet for six or eight months called the MS Detox diet. People do gluten-free diets, dairy-free diets, all sorts of different things. Some of those things work for people, and they swear by them. There are also alternative treatments, and I don’t know if in your studies you came across  something called CCSVI.

Marissa:  Yes.

Amy:  Something cerebral –

Marissa:  I think I always write these things on my board, but I have so much on this board and paper.

Amy:  It’s all good. A couple of years ago, a doctor named Zamboni in Italy whose wife has MS – he was already this cardiovascular doctor – he noticed that she had sclerosis in her jugular arterial vein. Forgive me if I’m putting this wrong( this is not my area of expertise) – clogging?

Marissa: Yeah, almost like an artery clog.

Amy:  Exactly, to the brain. He felt that it strongly connected to her MS experience, so he went in and cleared out the artery.

Marissa:  Like an angioplasty.

Amy:  Exactly, and she experienced great recovery. He did it with a group of people – like 79 people. It wasn’t studied parameters. They knew what was coming; it’s not like there was a control group, etc. and so on. And even he at the time said that not enough research had been done. But when this hit the news, people, as you can imagine – people with MS are pretty desperate for treatments and solutions – ran out to get it done to determine if they were also experiencing this similar clogging.

I’ve spoken to numerous people who have had it done. Like anything else, the experience is vastly diverse. Some people had great experiences. A lot of people had experiences for a period of time. I actually did a MSlol radio show about it, just wanting to hear from people and hear what in fact they’ve experienced. I had about eight people who have gone through the procedure and what their experiences were.

It was pretty divided, and coincidentally divided, because it’s not like I asked people how they were doing with it before saying, “Yes you can be on the show.” We just kind of went with it, and I think a lot of people had really good experiences. A good percentage had gained abilities that they then lost again.

We agreed how hard that must be. I don’t know if I could live with that – regaining an ability, and then it’s like “Oh, no no, you’re going back to this.” But there are people who go for this treatment repeatedly. There are all sorts of theories, but the good news is they’re doing further testing and having a greater understanding. That’s what’s going on. It has led to a certain amount of cynicism. I think there’s cynicism in a community that has a disease that’s incurable.

There’s cynicism about pharma. There’s cynicism about the medical industry, and there’s also this whole overarching feeling that everyone doesn’t want us to be cured because we’re such cash cows. I don’t subscribe to that. I do believe that my physician’s goal is for MS to be cured. I understand that people are really emotional about this topic, and that was why people felt that they weren’t supporting CCSVI as a possible cause of MS. There are all sorts of approaches.

Marissa:  I don’t want to leave out any other treatment options like physical therapy, occupational therapy, speech therapies…

Amy:  When you’re dealing with the kinds of limitations that we are, all of that can help. Whether people are covered by insurance for physical therapy – even me, with this great insurance, they are micromanaging my every experience in physical therapy, so I only was able to do if for a short period of time. I guess if I had an attack with residuals, I could do it again, but it’s hard.

Like anyone (and I’m sure, Marissa, you are oh-so-familiar with this experience), that when you’re dealing with the insurance world – it’s great we have insurance when we do – it’s this constantly emotional effort to prove your need for any given thing, and sometimes it just gets so tiring to establish that, yes, you need this.

You have to fight with the insurance companies, even with decent insurance – often a fight that is not worth the energy.

Marissa:  Absolutely. You have to really pick your battles fighting for disability, fighting for insurance coverage. Do I have insurance coverage? Oh wait, I need a prescription – do I have prescription drug coverage? So yes, it’s a very tiring thing. You do have to choose your battles.

Amy, what drew me to interview you was your passion. I think oftentimes people will comment that they don’t want to allow their medical conditions to define who they are. However, after spending time reading the blog and spending time with you, I got the sense that you’ve accepted this diagnosis and that you’re using it as a catalyst. Explain how you turned fear into your passion.

Amy:  Happily. I’m a unique case. Again, people say that I have MS but it doesn’t have me. I’ve only ever been an adult with MS. I was not an adult when it started at 20 years old. Most people won’t argue that that is not in fact an adult yet, but I have had it my entire adult life, and then some.

Living with MS has defined me. I’ve written about that, and it honestly has made me, I feel, a better person. Because it’s been my umbrella of identity for all this time, it’s sort of like I have this disease with all these horrible experiences and all of these challenges, and it became evident to me that I can use all of these challenges and experiences, I should say, to help other people.

I got this Master’s degree in educational technology – something that my husband had encouraged me to get. I never thought I could achieve a Master’s degree with or without MS. Educational technology is kind of learning how people learn most effectively, so it was really interesting to me because I always felt that I wasn’t getting the kind of education that would speak best to me. I was always kind of an average student.

During that period of time, we were working on an instructional design assignment, and it meant I had to create an educational template for something that doesn’t exist yet. While I was going through the motions of learning what that meant, it occurred to me, “Wow, wouldn’t it be great if people with MS who are, like myself, scared to learn about a disease that has a million different possibilities, many of which may never affect you.” There’s so much that brings out anxiety, and my experience in the 80s was pre-Internet. It was pre any kind of connection without going and seeing and being part of a support group where you see every horrific possibility of what your future holds.

I was in college and I was all about loving to learn, but I did not want to learn. I did not want to read about what my MS might be, because there was just no way to know. Now that we have the Internet and have connectivity, I think that it still is hard for many people being diagnosed because they’re more readily exposed to all sorts of things, and it is really scary.

In that time, I realized, “Wow, I can create this tool for people to learn about MS in a customizable way – an individualized experience which means they won’t be exposed to information they’re not looking for.” In addition to that, they can create a space to teach and for people to learn about their very unique version of the disease. That’s what I went on to call MS SoftServe. It’s a fascinating little concept, and I tell you, I was without life mission for forever, and when I thought of this idea, it became everything to me. I thought, “I have to make this happen.”

Not only just for the newly-diagnosed, though that’s a huge community in and of itself, but also for people – your MS is changing all the time, so all of a sudden you might be experiencing something new that puts you in the learner’s seat again. By the same token, if you learn of every possibility or you go to crazy on the Internet, it can just be horrifying, which is so counterintuitive to any health.

So I developed this concept and I founded a non-profit to make this happen. I called the non-profit “SoftServe Matters,” because my feelings were that once MS SoftServe is produced, there are many of other chronic illnesses that people could use this type of site for.

The non-profit was founded in ’07 and in the time since then, I have a very powerful board of directors. This is an exciting year because, although I have a staging ground at mssoftserve.org where you can get an idea of what it is, this year we’ve hired a web production company and they’re developing what they call the launching pad. We’ve applied for grants and we’ve gotten some.

Marissa:  Yes, congratulations on your Pfizer grant.

Amy:  Thank you, thank you.

Marissa:  So happy for you.

Amy:  It’s very exciting. So we’re really working hard. The board is working hard. We’re all working hard together, and this next site that’s going to be at the same address that the staging ground is – that was sort of like a placeholder with information – is what we’re calling a launching pad.

That’s going to be very up-to-date. I created this staging ground for when I was getting my thesis, which was the MS SoftServe concept from the beginning, so I’m updating it very significantly, because so much has happened. We’re making a more volatile kind of site that will have information for granters. It will have a lot more information for people who are interested in what we’re doing, as well as letters of support and videos of support from all over.

It’s kind of hard to explain very quickly, but it’s going to be really strong In fact, we are planning our fundraiser for October 22, and assuming that date comes through, it’s going to be the launch of the site and a big party in New York City at Cherry Lane, an off-Broadway theater which has donated their space for us. That’s up on the horizon. It is very exciting.

Some of the things that I didn’t mention real quick are that you can customize the site for the information that you’re looking for without being exposed to everything else, but you can also create a URL that explains just your version of the disease. That way, you can educate the people around you about your experience so they don’t get freaked out. You’ll also have the option to learn in the way that’s most effective for you.

I’m a visual learner; I learn best from movies and visual imagery. A lot of people are like that, but I’m definitely that. Each thing that you learn in MS SoftServe will be something that you can choose how you learn, so it will be a very strong learner resource.

Marissa:  How can we as a community help contribute to MS SoftServe. Do we go the site?

Amy:  Your certainly can. You can contribute monetarily. The MS SoftServe is a cause at causes.com, which is an offshoot as you probably know of Facebook. We’ve earned almost $4000 on causes.com. There’s a lot of support coming in. We have fundraisers. Funding is the thing that’s going to get this site produced, so that’s always appreciated.

Also, a lot of times people like to be involved, and because I’m running the show with my board of directors, we can certainly use expertise. So if people have expertise in different areas and can provide input – when I say input, I also mean actual contribution to the site production – and information and videos and whatnot, all that is going to be really helpful, too.

When it comes down to it, just a seal of approval that this is something that you want as a person living with MS will be more evidence when we apply for grants that this is something that this community needs. There are many levels in which you can help support this.

Marissa:  That’s great. Amy, before we close out, I’m all about recognizing life lessons. Is there a lesson or a message you want to share with the listener?

Amy:  I guess the one that I most often reference is you don’t know what you can deal with until you do. In 1988, I looked at that list and I thought, “Oh my God, I’m never going to be able to deal with this.” Years later when I looked back at that list, I thought, “Oh my gosh, I’ve dealt with pretty much all these things in some fashion or another, and…wow! I never knew I could do it.”

You just never know what life is going to hand you, and what you can deal with. That’s really empowering, I think, in the long run – to know that you can cope with far more than you thought you could.

Marissa:  You make me smile. Amy, thank you for spending time with us today educating us on MS. I’m excited for the future of MS SoftServe, and I’m wishing you all the best. Thanks again, Amy.

If you want to learn more about Amy, check out her blog at mslol.me. If you want to learn more about MS, please check out nationalmssociety.org, and be sure to keep your eyes peeled for mssoftserve.org. Thank you so much, and much love.

 

 

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