Madison Man Living with MS Set for Eighth Walk MS

Jim Turk, a native of Madison, holds a bachelor’s degree in Natural Science and a master’s degree in biotechnology, from the University of Wisconsin-Madison, is a husband and father of two sons, a blogger, an avid drummer…and has been living with multiple sclerosis since 2008.

MS is an unpredictable, often disabling disease of the central nervous system. There is no known cause, or cure.

“My neurologist has said that this is what makes me unique – high-level research knowledge but with the patient perspective,” Jim says in his blog. “I wasn’t going to take this diagnosis lying down!”

On May 7, 2017, Jim and his team MS for MS will join more than 1,200 people at Walk MS: Madison to raise more than $185,000 to fund the Society’s critical research. Since 2009, Jim has volunteered and co-chaired the Walk in Madison.

“I used my training and research knowledge to tackle living with MS,” he says. “I’m in a much better place than I was before this came about, I’ve figured out how to achieve balance in my life, and not a day goes by without me continuing to work on it.”

Jim receiving donationBalance issues, related to MS, have Jim using a wheelchair to move around safely. Yet, he exemplifies standing in defiance of a disease that’s trying to stop people from moving. He remains active by presenting at grade schools and colleges about living with MS, has attended several meetings and conferences on behalf of the Society, and shares his passion for drumming as much as possible.

“I have a real passion in bringing joy to others while raising awareness for the disease.”

Walk MS is an opportunity for people living with MS and those who care about them to connect, join together, and be inspired. In 2016 alone, nearly 300,000 people at more than 550 locations across the country walked to create a world free of MS, raising nearly $50 million.

Comments

Don’t Hate Me Because I’m Beautiful

Remember how Vigo the Carpathian died, according to Ray (Dan Aykroyd) in Ghostbusters 2?  Probably not.  I’m pretty sure I was the only one to see that movie.vigonormal

Spoiler alert – He was poisoned, stabbed, shot, hung, stretched, disemboweled, and drawn and quartered.

People made an assumption that he “died of old age” at 105, but that was far from the truth.  How often do you find yourself judging someone based on prior experience or taking the easy route?

I’ve spent the last nine years committing myself to causes and helping others despite my own challenges.  I, for example, do a lot for the National MS Society.  It’s a little like going to the gym.  I know that I’ll be better for it in the long run and I’ve learned how to truly enjoy the process.

I lend a hand (figuratively) to several groups in town, including the MS Support group, the Spinal Cord Injury group, and the alumni board for my masters program.

My real passion is conducting therapeutic drum circles for everyone from seniors in assisted living to children with disabilities.  I stay pretty busy, despite the fact that I don’t work anymore.

So why do I do it?  Surely I could sit back and rot away or enjoy the “easy life.”  I don’t make money doing this stuff – I must be getting something out of it, right?

I can do these things despite my condition.  I’m not the only one in a wheelchair.  It doesn’t matter that my hands don’t work well.  I can pull out my fan whenever I need it.  I don’t need to worry about putting on a hazmat suit or decontaminating my wheelchair.  And, I make my own schedule.

Oh yeah – and I seem to have a good rapport with people of all ages.  You see,

“I’m an ideas man.” – GOB Bluth, Arrested gobDevelopment

But mostly – it’s therapeutic.  I feel good when I do it.

It’s not that I don’t wear myself out – sometimes to the point of collapsing – when I’m trying to stand while packing up my gear.  It has happened, but I look at everything as a learning experience – if I can figure out what will make packing up easier and more sustainable so I can keep doing this for the foreseeable future, I’ll do it.

It can be physically challenging but it’s always socially gratifying.  And it lasts.

I get so much pleasure from enriching the life of someone who needs it or getting through to someone that no one else has been able to, that what happens in the short-term is not remotely significant.  Not only that but I get to enjoy the music and focus on the students in the meantime.  It’s extremely rewarding.

As an example – I was working with a small group of first graders with various disabilities last week.  One of the teachers approached me and whispered that a boy that had responded hasn’t done that with any other male adults at the school.

I will remember THAT more than anything that happened that day.  The good far outweighs the bad.

Is there bad?  Most people wouldn’t think so because I tend not to complain about it.  I might make excuses for my behavior – probably too much – but usually don’t complain.  Why?  Because I serve others, listen to good music, or do other things to change my state of mind before wallowing in self-pity.

I remember a meme that was making the rounds a few years ago of a woman standing on her wheelchair to reach a liquor bottle.  I don’t remember the quote but the idea was that if she can stand on her wheelchair, she must be faking it.

For me, standing is an option and even though it’s hard to do, I continue to force myself to stand so that I don’t deteriorate any faster.  I can tell you that I hadn’t been to the mall or anywhere else that required walking for a few years leading up getting my wheelchair.

Not only that, but just because I make it there under my own power doesn’t mean I’m not ready to pass out.  It’s not always a light switch.

I tend not to make a big deal out of issues that I have because 1) there’s only so much I can do and wishing that it wasn’t the case isn’t going to make it any different.  I just need to keep making adjustments to my lifestyle – my eating habits, my exercise habits, my sleep routine, my stress control, and the experiences that I have.  I need to control the variables.  2) Because bitching about things only makes them worse.  We find what we are looking for – always.  If I’m complaining about my legs, I’ll look for more reasons to complain about them and find I was right when I discover them.  It compounds the problem.  3) I want to set a good example for my kids.Jim receiving donation

So I look at the bright side and enjoy life by spreading the idea of positivity and serving those that need it.  But people still have questions:

Am I in pain?

Almost always.  Not the “stabbing pain” that so many of my friends are burdened with, but more of a chronic achiness in my legs, like I just ran a marathon or climbed 10 flights of stairs with two bags of groceries.  Sometimes it’s so bad that I have a tough time falling asleep and it’s the reason that my feet rarely stop moving.

How’s my coordination?

Well – I haven’t been able to write in years.  I can barely hold the pen for a signature at this point.  As luck would have it, I’m right-handed and my right side is the bad one.  I can’t write, hold food on my fork, or stand on my right leg while I’m getting dressed.

Weirdly, despite the weakness on my right side, my left foot is the numb one – figure that out!

My hands have become so shaky and my balance so bad that I have to have my kids carry any soup, cereal, or drinks to my spot at the table or in front of the TV so that I don’t spill them.

Why do I use a cane or wheelchair?

My legs are heavy – almost like their stuck in quicksand.  This means I tire very fast on the rare occasion that they’re working correctly but that they usually don’t move if I need them to.  Often times, the result is that I fall.  Combined with my stellar balance, this means that even turning around while sitting might end with me kissing the pavement.

Bladder issues?

I had a bladder like a pregnant chipmunk before MS – now it just has a 5-second fuse attached to it.  I tend to dehydrate myself before I go anywhere.  It’s not terribly healthy, but there are worse things.

What’s the worst thing I’ve experienced?

Hands down, the worst part for me was losing my ability to speak clearly.  It sounds odd, but I found out when I originally had major speech problems in 2006 and then again in 2008, that I would happily give up my ability to walk or write before my ability to communicate.

Everyone’s experience is different, though.  I sometimes have trouble swallowing but have found ways to manage it.  THAT could surpass the speech issue if it gets worse, I suppose.

Some people that I know have cognitive issues.  I have certainly been in a fog or gotten stuck, but have, depending on who you ask, been relatively clear-headed thus far.

What other issues do I have?

Heat tolerance.

I’m not talking a Whitney Houston or Meatloaf sweating issue – I’m talking about being shot with a tranquilizer dart.  I often joke that once I start to feel comfortable (temperature-wise), I know I’m in trouble.  For a guy that shivers uncontrollably, it’s no joke.  I HAVE to be cold if I want to be functional.

It’s all manageable.

I know a lot of people that have it worse so I just do what I can to make the lives of others a little better which makes mine better as a result.  A lot better.

Is that selfish?  Maybe – but it’s a passion.

My hope is to show everyone that, no matter what they’re dealing with, you still can make a choice to feel better.  That doesn’t mean great – just better, but it adds up.

I always say that you feel good for a reason!  If something is making you feel better, you’re creating a better environment for your body to recover or heal.  You’re working with your therapies rather than against them!

I’m genuinely good with the way things are.  Let me say that again –

I’m good.

I manage my symptoms (sometimes obsessively) and found a therapy that I truly enjoy.  It’s hard to complain.

Donate to my page for Walk MS:  http://main.nationalmssociety.org/goto/turk

 

Comments

When Awareness isn’t Awareness

This is a post from a year ago but I thought it was worth posting again for MS Awareness Week.  Pay close attention to the Raising Money tips, which I recorded during an MS Society Leadership Conference.  They are particularly important right now.  Enjoy!

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!

 

Comments

A Special Superbowl Edition!

I was excited to see that Lady Gaga, who has tested as “borderline positive” for saragormanportraitlupus and has brought attention to this terrible auto-immune disease, did the widely watched halftime show at the Superbowl.  (click here to watch it)

To honor this occasion, I have posted an interview that I did a couple of years ago with Sara Gorman, who has systemic lupus.  Enjoy!

Click here to view Sara’s website.

Comments

Drummin’ Does A Body Good!

Have you ever had that feeling where you’re really cold, go to bed, get under the covers and feel all warm and tingly? That’s me when I sit down to drum. That’s what I want to share you.drumming 1-15

Research has shown time and time again that group drumming is very therapeutic (click here). Group drumming synchronizes the two brain hemispheres so that they’re working together and it’s one of the only activities that actually does this.

Group drumming makes you think about the drumming, the music, and the camaraderie that goes with it. It doesn’t allow you to think about everything else that might be going on in your life. It lowers blood pressure and enhances the immune system. It makes you feel good.

It’s like meditation.

It’s great for kids and adults – it’s active, engaging, and you don’t have to have any particular abilities to do it. It’s great for reducing stress and focusing your attention, it keeps the muscles moving, the blood flowing, the nerves firing, and it’s healing – both physically and mentally.

When I sit down to drum it’s like I’m in a different place. It’s like I have a new meaning.

Group drumming is something I always thought about but never really pulled the trigger on because I felt like it was poorly represented. I think there’s a connotation, a Woodstock – hippie connotation, that goes with it.

Once I left work due to my disability, I felt like I needed to do something with my time. I wanted to share my experience with others that might have the need and the desire but not the means. I wanted to use my experience as a lifelong drummer (click here) in bands, as a percussion instructor, as research administrator, and as a public speaker, to spread the word and give people a chance to participate.drumming-pic-1

I purchased around 20 new drums to go along with my existing percussion equipment and decided an an approach to make the experience accessible to everyone. I let the MS Society know, the local Spinal Cord Injury group, my drummer friends, and anyone else who would listen.

My goal is to get people involved, both physically and socially, and I can’t think of a more fun way to do it!

Let’s have some fun and feel better while we do it!profilepic

Check out my Facebook drum circle page (@bmddrumcircles) or email me for more information.

Comments

Post-Thanksgiving Resolutions

I just wanted to let you know about a “Black Friday” through “Cyber Monday” deal I decided to run.  Now, It’s not like me to “hawk my stuff,” but this is worth it.

I’ve been saying this for years – your mental state directly affects your wellbeing.  They have proven it – there is a direct link between the brain and the immune system.  Click Here to read the article.

And now they just published another article linking mental state (e.g. anxiety/depression) to certain diseases (Click Here to read it).

Remember those videos I sent out when you joined?  Well, a lot of research went into those and I put together a 9 hour audio program and some other things to make you (anyone) feel better physically but also put you in a better state mentally because you’ll feel more in control of your situation.

That’s what it’s all about, right?  I literally still do all of these things, after many years of tweaking, everyday.  I’m saying this as someone that has a pretty progressive form of MS – it makes me feel better – and it’s trained me how to quickly isolate and identify symptoms so I can fix the problem!

This is what keeps me feeling good and moving forward.  I’m not a salesman and that’s not my intention but I know I can do the same thing for you!

So – I’m cutting the price by 85% – yes, 85%.  This really isn’t about making money, it’s about helping you get better.

I’m running a special (through Monday) and am practically giving it away for $47.  I was initially selling it for $297!

Click Here to get it.  I hope you all (in the US) had a great Thanksgiving!

Jim

Comments

How to Instantly Become the Coolest Parent on the Block

Everyone that we know is just giving out candy?” – Jerry Seinfeld

When you were a kid, did your parents look through your Halloween haul for scary things like needles and razor blades?id-100161966

You had a paranoid mom, too, right?

A control freak?

It’s funny that we worried about something that probably wouldn’t do much harm.  It wasn’t enough to keep me home when everyone is handing out candy, though!

Sure, you’d get a nasty cut, but you probably wouldn’t chew more than once and you certainly wouldn’t die.  Totally worth it.

Just the thought was enough to change the way you think, though.

According to the CDC, from 1975 to 1996, four kids in America were killed by cars EVERY Halloween.  KILLED!

How many kids were killed by the candy terrorists?  Probably none (click here).

Want to be safe?  Be in control!

We are worried about plane rides but not car rides.  Why?  We load our kids in the Sienna every day, so it must be safe, right?  It’s us behind the wheel controlling their fate, or so we’d like to think.

I can’t do anything to keep the plane from crashing into a mountain, though.

Or the Indian Ocean…

Growing up, we always wanted to be first in line, all-time quarterback, and to have a later bedtime.  Winning, whether it be a game or an argument, is about control.

Having control over a situation makes me feel safer, like I have some say in my destiny.  Having control gives me the feeling that I can sway the outcome in some way.  Having control ensures that I won’t be forgotten.

Vices

When cigarettes were at their height of popularity, we didn’t connect the dots.  We smoked them because we liked them, were addicted to them, and there were no perceived health consequences to doing so.

Once we figured out that smoking actually does cause cancer, many of us stopped and it became less and less common.  Why?

Because we could see the cause-and-effect relationship.  We stopped because smoking wasn’t a contributing factor but it was the cause of lung cancer.  The dots were easy to connect and it was reported to us by people we trust.

We could control the effect by eliminating the cause.  It’s pretty straight-forward.

Remember how much candy you and your friends ate after trick-or-treating?  What was the consequence?  I’ll tell you because it was the worst thing imaginable.  You ran out of candy!

There was no perceived consequence because you didn’t feel any different the next day, other than a slight tummy-ache.  There were no cuts.  No trips to the emergency room.  No blood tests or x-rays.  No immediate consequences (unless you puked!).

There was only deliciousness.  Sweet, sweet, deliciousness.  At least, that’s the way I saw it.

We certainly weren’t concerned with how fat we’d get!  We were kids!  The Bears have a better chance of getting to the Super Bowl!

We were invincible!  Sure, sugar will make us gain weight and rot out our teeth; everybody knows that.  I can’t see it happening, though, so that means it won’t happen to me!

I’m in control of that.

And, it will never happen to my kids.  It takes time and some witchcrafty science, so it’s easier to look the other way.

Besides, giving my kid a treat right now gives me more street-cred than being the meanie that wouldn’t take him out for ice cream after school.  Screw the long-term consequences!

Fat, sick, and nearly dead

How many people do you know that are diabetic?  Did you ever wonder why we are so fat?  Our kids are, too!

I can name one or two classmates that were big when I was in school.  They were the anomaly.  They were different and that’s how we remember them.

I’d bet I’m not the only one.

I’m sure that I hadn’t even heard of diabetes.  Where my kids go to school, being overweight is practically the norm.  So what gives?

I’ll tell you.  It’s the refined starches, sweeteners, and bad fats that go into junk food.  I can hear you already: “oh – so you’re one of those organic, idealist types that think you know everything and that industry is evil.”

Not quite, and don’t be too quick to judge.  I know that people are reluctant to make better choices if there isn’t an immediate consequence to their actions.

I also know that little boys aren’t supposed to have tits.

These are the facts: continuous consumption of sweeteners and white flour products (i.e. candy, pastries, desserts, and soda) means chronically high blood sugar, not to mention weight problems (click here).

Chronically high blood sugar means chronically high insulin (the hormone that brings blood sugar back down by storing it as fat).  Chronically high insulin means your body gets used it, so you need more and more sugar to trigger more insulin.  That’s diabetes.

That will kill them.

Smoke ‘em if you got ‘em

So keep it up.  What did Wimpy always say?  “I’ll gladly pay you Tuesday for a hamburger today.”  We’re interested in short-term gains; immediate satisfaction.  We’re teaching our kids to be the same way.

Health be damned.

I have an idea!  Let’s skip the hassle of lingering health problems and make the solution more concrete.

Let’s put cigarettes in their candy-sack.  Be the cool parent!

Besides, if they’re going to die of lung cancer, you don’t have to worry about what they eat.  It’s a win-win!

 

 

 

 

Comments