Treating MS with Compassion and Science

Here’s a profile I wrote for the Congressionally Directed Medical Research Program.  I was part of a group that reviewed research grant applications back in December and they wanted to do a profile on me.  https://cdmrp.army.mil

And here’s the article:

Jim Turk
Jim Turk

I was always a give-it-everything-you’ve-got and burn-the-candle-at-both-ends kind of guy. I was running marathons, playing in a band, working full time, going to graduate school earning a master’s degree in biotechnology, and keeping up with my duties as a husband and father of two boys when I couldn’t ignore my symptoms anymore. I had, after all, been misdiagnosed a few times and didn’t want to look like a hypochondriac. But, collapsing while coaching my son’s tee-ball team was the final straw.

I talked to my doctor and after briefly exploring the possibility of a cardiovascular problem, I had an MRI and it was confirmed that I had lesions on my brain that were consistent with Multiple Sclerosis.

How could that be, I wondered. A guy that seemed in great shape, climbing the ladder of success, and only 37 years old?

After the requisite period of panic, I enrolled in a clinical trial. In my career, I was heavy into research so it seemed logical. By coincidence, my neurologist was looking for volunteers for a clinical trial.

The trial was pretty unconventional ‒ it involved my swallowing parasite eggs! In the past, I had always been advocating for research and figured that people might not want to volunteer for something that sounded so gruesome, so I figured it was time to put up or shut up.

I decided early on that I would use my research background and natural rapport by spreading the word about clinical trials. About how important enrollment is, even when the treatment doesn’t work. I’d had a lot of experience in clinical research through my work, as well as graduate school, and now I had the perfect icebreaker!

I contacted the MS Society and started traveling around to different support groups delivering my message. Then the Wisconsin chapter of the MS Society asked me to teach a class on the subject at an “MS Summit.”

I became more involved with the MS Society and was soon doing news pieces for MS events. I was also getting a lot of press for the clinical trial. This included BBC Future, the Wall Street Journal, and NPR.

The Foundation for Biomedical Research even did a documentary about my life with MS and I was featured in an issue of Wisconsin’s MS Connection magazine.

As I did more work with the MS Society as a district Activist Leader (DAL) and member of the Government Relations Advisory Committee (GRAC), I learned about the MSRP and the possibility of helping to review research proposals. It seemed like a great fit since I’d had to quit my research administration job (which involved reviewing research) at the University of Wisconsin-Madison due to the progression of my disease. Being a consumer reviewer was an intimidating prospect but it turned out to be an incredible experience. My review was always thoughtfully considered and treated like any of the other expert reviews. I got to know several of the panel members personally and I really felt I was part of an important process.

At this point, I spend my time volunteering as a member of the GRAC and DAL groups, reviewing research for the MSRP, co-chairing my local Walk MS committee, and doing group drum therapy at various group homes. I have traded my running shoes for a wheelchair but I do what I can to improve the lives of those around me.

Jim Turk
Jim Turk

Survival of the Fittest

“You see pal, that’s who I am, and you’re nothing.”

Blake (Glengarry Glen Ross)

Remember when Alec Baldwin came in to convince the stale old real estate salesmen that performing well was in their best interest?  He was relentless and an a-hole – but he knew it.

He was mean and selfish and a top salesman as a result.  He famously used colorful language while he rubbed in his success to motivate the older, less accomplished salesmen to not be losers.

His point was that they should have no consideration for other people – only for themselves.  By thinking about themselves and working for themselves they would be making the company better.

What if we did that?  Not on the sales floor but in our daily lives?  What if we acted in a totally self-serving manner?

Would our lives be better?  I say “yes” – they would be much better.

Sure – we’re not quite acting like the polite, apologetic person that we try to be, but where has that gotten us?!

“No one gives it to you. You have to take it.”

– Frank Costello (The Departed)

We are getting what we need, though, and not harming anybody in the process.  All of this while making it less of a burden for our loved ones and creating a better environment for them.

Maybe we should be thinking in the longer-term.  About training people to respond in a certain way.

That’s the whole point, isn’t it?  We don’t really get results by softening the blow.  To get big changes we have to act in a big way.

In an extreme way.

We can be nice after the dust has settled.

It’s not unlike social media and phones for kids.  My teenage son can’t put his phone down – but he won’t make a call.  He can’t stop texting and looking at it.  Social skills are completely gone!

He’s as dependent on that as I am on a wheelchair.

So how do you break the cycle?  You force it!

Don’t let them take the path of least resistance – if given the choice; most people won’t even act in their own best interest if the results aren’t tangible.

For example – we need to be happy to be healthy.  There is scientific proof that being forced to interact -even when we don’t want to – changes our mood and the way we feel about events.  Even if we try to avoid it!  (Click here)

But we are being removed from society – and the younger generation was never a part of it.  They have been trained that society doesn’t care about their rudeness and they don’t care about their lack of interest and personal lives.

Avoidance is easy.  Non-verbal communication is vanishing.

So, adapt!  Force it.  Just say what we mean and don’t give it a second thought.

Train them.  Maybe if we all were to do that, it would just be expected.

The younger generations, the ones that are completely dependent on smart phones, tablets, and computers, care less about rudeness.

They’re used to it.  There is no emotion in writing. There is no interpretation other than face value for what they receive.

The response to emotion has been programmed out of them.  We need to just ask for what we want and not worry about hurt feelings.

So like Ricky Roma said – “Your life is your own” (Glengarry Glen Ross).   Just ask for what you want and worry about you.

You’re making your life a lot better and everyone else by default.  They’re doing what they probably would have already, and if not, they should be.  You’re just training them and skipping over the big psychological dilemma.

Just be an egocentric a-hole.  Fake it till you make it.

It’s a self-fulfilling prophecy.

You might just find that the people around you are more responsive and nicer as a result.

How Getting Knocked to the Floor Helped Me Achieve Balance

Have you ever been “in a zone?”

I guess I always think of the Michael Jordan flu game in 1997.  He was unstoppable, despite being visibly sick.Basketball

I’ve definitely felt that way – maybe not at that level (or while tossing my cookies), but getting someone out in dodgeball or winning bowling trophy definitely gave me that puff-out-the-chest, unstoppable feeling.

I remember skipping stones as a kid.  If the waves were just right and the wind wasn’t too strong, it seemed like they’d go forever.  I couldn’t mess it up!

I’m guessing that I wasn’t the only one.  The key, though?

I FELT like the only one.

As adults, we have jobs.  We have kids.  We have mortgages.  We have crippling debt.

There again, we feel like the only one.  But I’ve got news for you.

It’s the norm.

“At a certain point people have to be willing to walk through their pain in order to get to the other side” – Flea (The Reality of My Surroundings)

Pain.  Is it all a mind game?

There are definitely mind-over-matter aspects to it but the mind and body work in harmony.  Failing to support them both will cause you to crash and burn.

Do you want to be the best you can be – at everything you do?  Achieve balance.

Do you want to feel great?  Harmonize.

I figured this out because I had to.  I studied and experimented with all of the mind and body aspects that I could – because I was backed into a corner.

In 2008, I was diagnosed with Multiple Sclerosis.  This progressive, debilitating disease doesn’t have a cure.  It doesn’t even have an effective treatment!

So, after the standard wallowing-in-self-pity time, I figured I had to do something.  That something was to figure out the best, most efficient way to harmonize my mind and body.  To put it in the best possible state to improve.

I knew that leading a healthy lifestyle was my best bet.  Because of my situation, I took it (and still take it) to an extreme.  I’m tweaking things every day!

The good news?  Taking care of you mind and body are both easily addressed and you can do it for free, as long as you’re willing to put the time in.

The even better news?  Get your mind and body in the right place and suddenly tackling the other stuff doesn’t seem so bad.

For me, it became a quest.  I had a clean mental and physical slate and now could move onto the life side of things.

I was in a zone!

“I’m the king of the world!” – Jack Dawson (Titanic)

It’s amazing what self-confidence can do for productivity.  It seems to snowball.

Hazmat SuitsFeeling good and having a great attitude makes your day better, which makes your week better, which makes – well, you get it.

So where should you start?  Where did I start?

Everyone knows about diet and exercise.  Heck, it’s an annual New Year’s resolution for most of us!

Did you know, though, that regular exercise can actually improve your memory and the way you think?  It’s also been shown to increase learning rate and decrease cognitive decline, which is something that we all worry about as we get older.

This is not only good to know, but it’s also a strong motivator for me.  That knowledge – the ability to visualize improvements in my brain as I’m doing sit-ups keeps me plugging away!

How about diet?  Are you still caught in the ‘60s and ‘70s when you think about the research or “what you’ve heard?”  I know that I was for a number of things.

You might be surprised to find that what you thought is no longer true.  It’s not rocket-science.  You just have to look at current research instead of opinions and culture.

What about meditation?  Everyone talks about it but it seems like just as many people say they “can’t do it.”

I have to tell you – that’s a pet peeve of mine.

There are few changes to my daily routine that have had the impact that meditation has.  Talk about “clearing the slate!”

It’s not a light switch.  It’s not a “black and white” issue.  It’s a continuum.

That failure to “clear your mind” makes it easy for people to give up.  The reality is that you’re improving and seeing the benefits every day – even if you’re not at the Buddhist monk level the first time you try it.

“No one is useless in this world who lightens the burdens of another.” – Charles Dickens

Have you ever notice that lending a hand puts you in a better mood for the rest of the day?  It makes us all feel better but we’re reluctant to admit it.

I haven’t been able to figure out if we think we’ll be perceived as weak or if it’s cultural or maybe we think it’s going to be awkward – it just isn’t a common occurrence, at least in the western world.

This, despite what we all know – it makes us feel better.images

There is plenty of research to show that serving others, being socially active, and looking at the bright side improve quality of life and increase life-span.  It seems like a no-brainer, but it’s something we have to be told to do.

Which makes it feel like work.

So we don’t.

But what if I told you that forcing yourself to strike up a conversation, even with a stranger, has a positive impact on both of your lives?  Again, we know that it makes us feel better – but it also makes the other person feel better.

We’re more motivated when we feel better and are happy, so we do the other stuff.  It snowballs!

It’s easy for us to stay in our comfort zone.  It’s getting easier by the day with iPods, portable communication devices that we can hide behind, and social media to tell us what we’re missing.

Those things, however, won’t bring you balance and harmony.  You have to look past your screen for that.

Give it a try – I’d love to hear your success stories.  I can guarantee you that it will have a huge impact on your life.

I know it has on mine.

Assuming Makes an Ass Out of You and… Well – Just You

Lots of space in this mall…” – Elwood Blues

I’m sure you’ve been there – at least on the giving end.

They think they’re doing the right thing.  They think they’re being polite.

You’re having a normal conversation but then they act all sympathetic and put on those puppy-dog eyes.

I can’t be the only one – I’m talking to someone that I totally respect and they suddenly decide to put on the pity face.

Nice.  At least I know you aren’t judging me!

“Poor Jim, he’s been burdened with a problem that I’m not familiar with.  It’s weird, too, because he looks so normal.”

Really?

I don’t fit their definition of normal?  Well, I did at first glance, but now that they have more information.  “Can I have a do-over?”

Maybe I wouldn’t fit mine, either, prior to my diagnosis.  Discrimination is a learned behavior, right?

It’s not limited to race, either (except for the part about getting shot at – that seems to be).

It’s just frustrating.  Not having to beg for help would be nice but I don’t need you to make me feel bad about it.

You Selfish Bastard

Oh, I get it.  If you’re narcissistic, you get to skip the awkwardness.  Take the path of least resistance – he has a disease so he’s a second-class citizen.

Save yourself – treat him like his dog just died.

We’ve learned to avoid the uncomfortable.  Sympathy is a good, catch-all reaction that enables us to hurdle the pregnant pause.

The problem… It’s not cool.

If I was missing a leg, would you apologize?  “I’m sorry you’re not like me and have to live with that deformity for the rest of your life.”

Of course you wouldn’t – that would be insensitive and stupid.

The problem with a disease is that it’s unfamiliar and taboo.  It makes me different.  It makes me “special.”

Plus – you have to take my word for it.

Damsel in Distress

IMAG0256That’s the expectation, isn’t it?  If I park in a handicapped stall, people assume that I must be lying if I don’t “look the part.”  I find myself pretending to be worse off so I don’t get harassed.

Even when they leave me alone, I know what they’re thinking.  I’ve seen the pictures and heard the stories.

There was even a meme going around on Facebook depicting a woman, standing on her wheelchair, reaching for a liquor bottle.  She must be faking if she can booze it up, right?

I can remember my dad joking that he was going to park in a disabled spot and I’d have to limp when I got out of the car.  I’d bet that I’m not the only one.

We’re not hard-wired to think that way, but we’re raised to make judgments (click here).

Watch Your Back

It starts with awareness.  Knowing that you’re acting that way is a good start.

Have you ever heard that the first step in dieting is to write everything down that you’re consuming?  Suddenly, you’re aware of how much crap is going in your body and you change your behavior – before you even start the diet!

Knowing that you’re judging someone works in the same way.  Just think about the assumptions that you make.

We’re the Same.

I remember a time when I was a young student.  I was talking to a Ph.D. candidate in the lab and made a joke about him being smarter than me.

“We’re the same,” he said.  “You and me, we’re the same.”

That was 20 years ago and I remember it like it was yesterday.

Who am I to say that we’re different?  Just because we don’t have a secret hand-shake doesn’t mean we can’t be friends… equals.

Don’t try so hard.

I’m tired of being the elephant in the room.  Don’t pretend that I’m not there.  Ask a question if you’ve got one.  You’ll probably find that I prefer to talk about it.

The problem is that you think there’s a problem.  There’s no problem.

You don’t have to watch what you say.  You don’t have to worry about saying the wrong thing.

Mr. Cleanimage

I’m not going to undo the issue, even if I make the symptoms go away.  It will always be a part of me.

It doesn’t have to be a burden.  This is my life, not yours, and I don’t need or want your sympathy in order to move forward.

Just acknowledge it and move on.  I’m not “brave” or “heroic” for dealing with it.  You’d deal with it, too, if you had to.

So drop the pity and treat me like I’m your friend.  Your brother.  I’m just like you.

We’re the same.

 

Who’s going to Push Your Wheelchair?

I remember going down to the department store with my brother after closing time.  We’d push each other around in shopping carts and crash into bushes, lampposts, each other – you name it.  I’d never go home without road-rash and a headache.  Stupid, but we were kids.  We were indestructible.

I’m betting I wasn’t the only one.lonelyroad

Then, of course, you grow up.  You want to be that dumb, bullet-proof person you once were but life doesn’t work like that.  You try and hang onto it as long as you can.

Maybe too long.

“It’s not denial.  I’m just very selective about the reality I accept.” – Calvin from Calvin and Hobbs

Have you ever pretended you weren’t sick, blowing off symptoms because you didn’t want to look like a hypochondriac or admit that you’re weak?

Me too.

We pretend that we can do the things we used to or blame diminishing abilities on something else because we haven’t come to terms with the fact that we’re deteriorating.

We avoid using a cane or walker because it makes us “look disabled” and we don’t want to be associated with the group we so often defend.

Are you in this alone?  Do you have someone that supports you and helps you through the tough times or are you destined to spend the rest of your life in a wheelchair – alone – with a dead battery and no one to push?

“It’s better to look good than to feel good” – Billy Crystal as Fernando Lamas

What if someone you love and respect is in denial, too?  Like they’re trying to look the part even though they aren’t sincere?  They just think you’re not trying hard enough.

I know what that’s like.  I can’t even mention it, good or bad, without being accused of complaining – of wallowing in self-pity.

Is that someone worth keeping around?

You know how it works – they don’t help and you stress-out about it.  The added stress makes your symptoms worse and you need more help.  Their lack of concern is more stressful.  It snowballs.

And it hurts.

I try to be patient and view them as having a problem – just like I have a problem – but it’s not getting any better and is definitely causing more difficulties.

Is it wrong to expect to be treated with dignity even when you can’t “act dignified?”  Is it wrong to expect that a friend or loved one should make some sacrifices for you?

I’d like to think that I’d do those things.

I’d hold their hand or talk to them about their day and mine.  I’d have fun with them and defend them.  I’d be proud of them.

Maybe they do those things.  If you have to ask, though, it doesn’t feel the same, does it?

 “Do to others as you would have them do to you” – Luke 6:31

It’s a nice thought, isn’t it?

We’d love to think that we’re the bigger person because we wouldn’t hesitate to help – even if they’ve shown us that they won’t.  Is it worth it, though, if it makes us unhappy?  Unhealthier?

sister_bay_8-2012It seems to me that setting an example has limits.  If someone slaps your right cheek you can offer your left but if they keep slapping you, it’s time to cut your losses.

That’s the legacy I want to leave for my kids.  I am not a doormat – there is value, here.  I don’t deserve less respect because I’m diseased.

Because MS is my cross-to-bare.

I don’t have to act like a victim.  I’ve had some choices taken from me but this doesn’t have to be one of them.

I know who I want pushing my wheelchair, do you?

Beauty and the Best

“Well – if this is out there, just think of how much more is out there!” – Navin Johnson (The Jerk)Navin

It’s fun to think that we can not only lead normal lives but that MS, or any other disease for that matter, is a blessing – creating a stronger bond with your partner leading to a deeper love than any “normal” person would understand.

Forget that such a huge number of marriages fail (I would have taken the easy route and used a real number like 50% but there really isn’t one since different areas report it in different ways).  It’s a little like saying you’re going to be a movie star or a singer in a band when you grow up.

It’s bullshit.

It does happen, yes, but we only focus on the successes – the fairy tales – and don’t care about the fact that statistically, it’s not going to happen.  If we failed to dream, we’d all just give up and become garbage men.

It would also make it pretty tough to sell stuff.  Stuff like disease modifying drugs or the magazines they advertise in that promote these dreams.

Being in a successful relationship is work and even then, even when both parties want it to work, it might not.

Oh – and then there’s the physical problems.  Maybe they’re mechanical.  Like if you have scaring on your spine or some other injury or illness that affects your lower extremities.

Maybe you’re like me and your hands don’t work well, if at all.  There’s nothing quite like a romantic dinner when you’re wearing a pair of mittens, is there?  The physical problems are bad enough but the mental anguish that goes along with it puts it over the edge.

Maybe there are psychological barriers.  Do I want to commit to someone that I’ll have to take care of for the rest of my life?  Do I want to put that burden – that expectation – on someone else?

Denver sunrise

Denver sunrise

I have always been known for positivity – for looking at the bright side.  There’s a fine line, though, between being positive and being unrealistic.

I feel very strongly that having a great attitude puts you in a better mental state, which puts you in a better physical state.  It’s scientifically proven.  Your immune system, which has an obvious and direct impact on your health, is tied to your brain and impacted by your outlook.  Dreaming is what makes us improve, or at least not get worse so fast.

Is being positive letting everyone else off of the hook, though?  If I can make lemonade out of my situation then it’s really not so bad, right?  If magazines don’t push the fairy tales, will drug companies keep giving them money?

Attaching the possibility of a normal life to their products sure helps sales!  So we have to decide.  Like The Dude once said – “Fuck it.”

“Sometimes you eat the bar, and sometimes the bar eats you.” – The Stranger (The Big Lebowski)

The moral of the story is that our disability has put us at a disadvantage.  In order to move up the food chain, we need to not compound that disability by acting helpless.

Don’t apologize for anything. If you do, you’ll always be self-conscious.  Be completely intentional and matter-of-fact about everything you do.  It’s not your responsibility to make their decisions – you have enough to deal with.

I say keep it to yourself. If your disease is progressive, don’t say anything.  It’ll present itself when the time is right.  Just have a good time and don’t burden yourself with fairytales and “what if’s.”

If you look for the bad – you’ll find it.  If you expect the bad – it’ll happen.  Be your best and don’t worry about what anyone else is thinking.

“I’m not the type of person who’ll disrupt things just so I can shit comfortably.” – Dante (Clerks)

Don’t be Dante.

When Awareness isn’t “Awareness”

Have you ever nodded your head to make someone think you’re following what their saying but really have no clue?  You probably don’t even care what they’re talking about.

I often joke that this is really how I’ve gotten through life – I’m just good at seeming interested!DSC03387

I fear that this is what happens when we talk about “MS Awareness,” though.  We talk about it and people close to the disease celebrate “awareness,” but most people don’t really know why we do it.

The common misconceptions remain.

We all know that having an “invisible disease” is physically AND emotionally difficult.  It seems that everyone – our loved ones, our friends, and even our physicians – say that they understand.

But they DON’T understand.  They might be empathetic, or want to appear to be, but they don’t really “get it.”capitol2016

What they understand is that we complain about something that they have to take on faith.  They have to trust that we’re telling the truth.

Even our doctor’s job is subjective.

Sure – there are some measurements that they take.  They do MRI’s and look at patterns and trends, but there is an awful lot of judgement that happens at your appointment.

Your doctor is good at this – probably one of the best.  I’m not saying that their opinion isn’t respected – they’re doing the best with what they have to work with – and I’m grateful for that!

But when we talk about MS awareness, what are we raising awareness about?  And why?

Our tendency is to explain it to people.  To try and make them believe us.  Like you’re a three-year-old trying to make your parents see the “owie” that your brother gave you when he pinched you.

Did that ever work?  Are you taking advantage?  Crying wolf?

We like things that are concrete.  We need specifics to assign blame.

You could tell people that in MS the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body… (snore).

That’s what the Mayo Clinic website tells them – if they stay awake.

But it’s too complicated.  It’s not bite-sized.

It’s not concrete or active.

There are no cancer cells that we need to kill.  There isn’t an artery that requires a stint.

I often just tell people that I have a nerve problem.  I don’t elaborate and they usually don’t ask questions.  Is that wrong to do?

It’s easier to explain, they get the gist of what the problem is, and I’m not lying to them.  I’m just not giving them the whole truth.

But that does nothing to raise awareness, does it?

So would it be wrong to tell people that MS has “taken over my legs?”  That I have “MS induced pain?”

Assign blame – Make it concrete!

How about saying that I have “MS-induced ataxia (which covers a lot of ground and explains a lot of symptoms)?”  It’s more believable!

Why does it work?  It’s ACTIVE.

It’s like saying “I was punched in the jaw” as opposed to “I have a sore back.”

ID-100265475The former is easier to empathize with.  It’s active.  There is a cause-and-effect and we can relate – if not from personal experience (like the time I was cold-cocked while playing a video game in sixth grade – I’m not bitter), then certainly from what we’ve seen on TV.

Connect the dots – make it active!

When I think of awareness, I think about starting a conversation.  About clearing up the confusion and giving them an emotional reference.  It’s hard to relate to it, otherwise.

Connect the dots.

Raising money – for research, for scholarships, for assistance, and much more – is a lot easier when you can show the human side of the disease and assign specific blame!

Make it active.

If you can do that, you’re not just telling them that something called Multiple Sclerosis exists – you’re raising awareness!

So get to it – share this post and spread the word – let’s make this the most productive MS Awareness Month ever!

 

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