This girl Kris

I have been slacking off lately in the running department. I have had too many competing interests all converging since the calendar rolled over to 2015. Today I met this girl and she was so awe inspiring I am reviewing my checklist of what is important in life.


Instead of running, I was volunteering at a small local race, the Haltom Stampede 5k. I was in the truck following the last runner and just past midway we meet Kris. All the walkers who were just out for a stroll had finally made it past her and I first saw her.
My heart dropped! I have had some tough runs and put myself through tougher training, but this girl was tough. We caught up to her on the one mild hill on the course and she looked so tired but determined. You could see her arms shaking and it was hard not to pull up and tell her she had done enough for it to count as crossing the finish line.
While my heart was aching to help her, I knew better. She didn’t sign up to fail. She didn’t sign up to finish first. She’s felt that calling of the finish line and is answering back with a roar.
When she came to the finish, the Haltom City CERT team (look up your nearest CERT group and go volunteer with incredible people) was all there cheering her across the finish. Our junior CERT members went and found her and crossed the finish line a second time with her. We all took pictures and most people said how incredible she was.
I got a picture with her just so I could post this. I didn’t say as much as everyone else after she finished because I was trying so hard to absorb it all. People have called me an inspiration and it always makes me happy deep down. And today, I met Kris who was more of an inspiration personally at 2:18 when she crossed the line than I ever will be.


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the storm before the calm

Some people say running is too hard.  Those who have no desire at all can easily come up with more excuses not to, than I can to do it.  I’m not debating those points, you either get up and go, or don’t.  It’s that simple!

I’m not trying to sound like a harsh critic of those who do not wish to run.  Running for  the sake of running and enjoying it isn’t for everyone.   And I do have other things I like doing.  I love going for a ride on my mountain bike, spending time at our tiny five acre farm outside the city, trying to act like I am mechanically inclined, etc.  I have dozens of other interests, but I just never mention them here as I keep this geared towards dystonia, running, and for those with dystonia not to give up.

Yesterday I went to the chiropractor and we discussed the fact that he is amazed how fast I look so much better far faster than expected.  After my first visit, he gave a 10 month projection.  He is now saying less than that, but not sure how much less at the rate I am improving.  It’s been rough at times, but is starting to pay off.

A few weeks back, he said go ahead and start some light cardio as I should be able to handle it.  I have been thrilled to be back in the gym working on trying to get back to where I was before hurting my back.  I seem to only get so far before I start getting back aches.  Earlier this week, my chiropractor says you know you gotta do at this point.  Hence, the storm of core work and intervals before the calm zen of just running as long and far as I want with no problems.

I hate weights and core work!  I would rather do 48  hours of straight cardio versus 30 minutes with weights.  I may have muscular legs that are rock hard toned, but I have that middle section which is a spare tire that comes with an extra set of love handles.  And cardio alone won’t shrink that.  It takes core work with weights plus watching  what I eat.

But last night doing  the weights wasn’t as bad as I feared.  I am sore from muscles being used strenuously that normally only handle a remote control, fork, and an iphone.  The end result of all this and a lesson for me and everyone else is when I hurt my back and thought that was the end of it, NO! No, it doesn’t have to be the end you just need to find a different path cause starting over.

The Jolly Runner

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I am the tortoise

Really? Really? Yeah, I just did that. I took the tale of the tortoise and the hare and attempted a Beatles pun. And that’s the bad news.
The good news is my run was better than that pun. My last entry on here wasn’t supposed to be a sob story. Those of us with dystonia all share a common bond. And I have yet to meet someone who is glad to have the condition. This is supposed to be reverse psychology motivation for anyone who comes across this.
If I can run, then other dystonia sufferers should become steadfast in defying there own bodies and run, bike, hike, swim, or just go for a walk in a park. If you truly get the message, I’m not whining I’m trying to tell y’all sometimes it is worth the pain. And any accomplishment we make when our bodies say no, is bigger than life. And then we don’t feel so small


The Jolly Runner

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Feeling small

Today I made my second back to back trip to the gym. I keep telling myself this is going to happen.

I’m The Jollly Runner – I can make anything happen!

It was a victory with a setback. I haven’t even left yet. I’m sitting in the parking lot feeling a victory slip through my fingers.
The victory was for the second time I knocked out a solid mile with no breaks and was feeling like the old me. Back to where I ran to be free. The pain is always there from dystonia but I feel freedom when running. The world takes a backseat while I am alive to just run away from my problems for a short while.
It’s a true escape. Zoning out in front of the tv eating comfort food isn’t a true escape. Playing video games until your eyes glaze over and the only way people know you’re alive is your fingers moving the controller isn’t a true escape. Running and feeling that burn in your lungs while gasping for more and feeling muscles scream with pain that only comes from being truly alive, that’s the escape.
Achieving that true escape and having victory over the side of you with the lazy habits is so wonderful. Until you push for more. Finally back to conquering one mile and the ecstasy that nothing else brings, I slow it down for a few.
The plan was a three minute breather and then push for a half mile more and see how far I get. I last a minute. I get a nasty cramp in my good leg and stop before I wind up falling. After having reality burst my bubble, I felt so small and insignificant next to all the healthy people making it look easy.
I’ll never be first or make it look easy. At my best I’m a middle of the pack guy working extra hard for every step. But I can’t quit. Every part of me body and sole was meant to run. Fate just made me the gimpy runner

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By the way… can’t stop scar tissue

I haven’t written on here on a long time but it’s time to hoist the black flag and sail back into familiar waters.  I need to apologize for vanishing.  I went through a bad spell and had to abandon running.  I haven’t liked who I have been since I stopped.

They say with Dystonia don’t run, maybe swim or walk.  Don’t go to a chiropractor but maybe light stretching.  I’m sorry but that is slow death.  At the urging of my better half, I began going to a chiropractor.  He is one who specializes in a technique called CLA which is supposedly one we can go to.

Here’s where it gets fun.  A week and a half ago, he says as  far as he is concerned, I am clear to start up again.  Two days ago, he says if I want to run again, go to the gym.  I say I’m ready but seem to find excuses not to start.  This evening my better half asked if I was still planning on going and I am sitting there making one excuse after another.

Somewhere, I joined the pity party some of us with Dystonia have.  I let the constant back ache wear me down.  So as I sat there, I started missing that other me so bad I couldn’t stand it and off to the gym I went.

Going to the gym sounds like no big deal, but let me tell ya, in my case it is.  All of us with Dystonia have it just a lil different on triggers and specific symptoms.  I tend to wake up every morning with that whiplash feeling you have the day after a car wreck where you just ache head to toe.  And some days it only goes downhill.  Other days the spasms are in overload and I can think of only one way to describe the feeling.  You’re in a 100 yard dash and crouched down waiting for the gun to go off.  You have the adrenaline pumping ready to spring like a cheetah.

That is the best way I can describe how it feels daily.  That doesn’t include when you have a torticollis moment and your ear and shoulder try to become one.  Or your shoulder blades want to meet.   Or when you get that neck spasm and have that odd Popeye looking grin.

Since I get the joy of that anyway, I took the big risk so many Dystonia sufferers cringe at and went to a chiropractor.  And today I went back to the gym and no back pain, just overloaded endorphins and feeling good for a change.  I’m scared to say this, but once it is in writing I can be held to it, so hear goes.  By the time of the weekend for the Cowtown Marathon, I will be doing the 5k.  There said it and now get to be held to it.  I’m smiling just thinking about it.

The Jolly Runner

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down, but not out

Today I got back on the horse(treadmill) and had to find out if there is any chance I can still run.  I did poorly and didn’t hit my goal but I made steps.  When something is in your blood so deep that without you are only a shell, you aren’t alive anymore.  When I am not trudging through mile after mile and sitting it out, I am not who I am supposed to be.  I may not be quick, or graceful, or lean, or any of that stuff that all the cool runners are, but let’s see them try to run with my condition.

Honestly, I thought I was done for.  In early November, during one of my really bad dystonia days, I managed to fall off the porch and my back has hurt so much I have been on the couch.  Falling like that is just part of the condition and I just have to live with it.  So I have spent two months in self pity as my back pain just got worse and I tried to accept the fact that I was done.  I really tried to accept it even when my back pain got to the point I had to start using a cane.  Yeah, that blows.

It kept on getting worse and I finally went to the doc.  I wasn’t expecting to attempt running again, I just needed something.  She saw how twisted I was and last week I started physical therapy.  I only expected to get my back straightened out somewhat, but no big improvement.  Let me tell ya, after that first visit, the next day my symptoms were out of control.  The same thing happened after my third visit.

Then there was today.  While at physical therapy, after he worked on my back and did some of my exercises, it finally popped in the way it’s needed to since I fell.  After I left there, I went straight home and got into my running clothes.  I felt like I could finally give it a shot.  I was excited and nervous at the same time.  Excited I felt like I may still be able to run and nervous I would fail.

I only managed two little miles before my back started hurting and I had to call it a day.  But the point is, I still gave it all I could and have a goal to cross finish lines again this year.  Every one of them will be tougher than last year, but  what kind of person would I be if I didn’t push myself and be happier for doing it?

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100 days to go!

It’s just 100 days until the next Cowtown Marathon.  My whole running world revolves around the Cowtown.  I started just to run that one.

I was going to go all in and live my dream and do the full, but after my last half a few weeks ago, I have had to come to a hard realization.  I can still run and fight my condition, but not for 26.2 miles.  I had to change my registration from the full down to the half.  Surprisingly, that was one of the hardest things I have ever done.  The odds are that I only have one more half in me, but we will see where that goes.

Do I still really count as a runner if I can never knock out the full marathon?  It is the event that moves you over to elite.  On the one hand, I can’t do it.  On the other hand, I work harder just to train and complete a half that some do for the full.

Sometimes I just question things too much.  All that matters is I have 100 days and I am excited

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not always a silver lining

Even leading a charmed life like I do, there is no always a silver lining.  Quit laughing!  We all know it’s true.  It’s that whole duality of my existence that defies convention and I rather enjoy it that way.

It ain’t no secret by now that I get a little more crippled every week.  However, I do seem to find new and interesting ways to get around my limitations.  Or at least try to get new stories to tell about dumb things I did trying to still be as capable as ever.

All the disabled stories are depressing.  And after yesterday, I can add another.  I went to the neurologist.  My genetic testing results are in.  So it’s not DYT1 dystonia and the DYT5 results were inconclusive.  My neurologist is sure it’s DYT5 Dystonia.  On the plus side, we have decided against the dbs surgery.  And no botox shots since my symptoms keep rotating too much and not settling in to one area for long enough.  So we increased the levadopa again.  Started with one pill, then two, then four, and now six a day.  So it appears we will just keep throwing meds at it trying to slow the progression.

But then there is the flipside, I am an addicted runner who just doesn’t know when to shut up about it.  I’m always trying to convince everyone I know that the joys of running top almost everything.  And I think I do look damn good for a crippled runner.

The pictures from my last half came back.  the camera guy somewhere between mile 9 and 10 got a nice shot of me still with my runners high.  I was smiling and goofing off in front of the camera.  Two miles later I was in a full blown bad spell and the finish line was two miles away.  In that pic, I look like I was twisted up in all kinds of agonizing torture.  People were asking if I was ok or needed help and one guy thought I was in a bad zombie costume for halloween.  I must admit I had the running shuffle down and acted the part.  Oh well, I am not going to go “almost” all the distance and give in.  No matter the pain, that would be the stupidest thing ever.

Sometimes we fall short no matter how hard we try.  With all the work I put in, my number one bucket list item of a full marathon is over.  A piece of me has died with that dream.  I was a screw up in life and had a secret dream I kept from everyone.  I finally decide to go for it before I get too old.  And then dystonia happened.  I’ve still ran numerous 5k’s, 10k’s, a few mud runs, and two half marathons.  But I never will cross knowing I did the big race just once in life.  It would have changed my life forever in a good way.

I wanted to have that uncontrollable big grin when anyone ever asked if I had ran a marathon.   And with a spark of deep down happinesss I couldn’t contain I would have been able to say I did the Cowtown Marathon.  The rest of my life I would have looked back with a content pride, not boastful, just self happiness that I had achieved my biggest goal.  The quiet satisfaction of knowing I could accomplish whatever I put my mind to.

I’m not done running, don’t even think that.  I will be running as long as I can, even after my doctor has said stop.  It’s hard to give up who you are!


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half marathon #2 is officially in the books

I completed the No Limits Half Marathon at Texas Motor Speedway this morning.  I keep going while I can.  It’s getting tougher to keep at it, and it ain’t because I’m 40!

When the run started off my right foot was spasming and I had a limp.  My big toe tried to go straight up while the others went under.  No big deal though.  I frequently have the problem with my right foot and just suck it up.  I cruised along easily for about the first four miles.

Around mile four, the fun begins.  I feel the tension starting to build.  I know I haven’t pushed to hard and that is making breathe hard.  I know it’s dystonia starting to cause spasms in my chest.  It increases and then moves to my shoulders.  The throbbing and spasming really suck and hit my neck.  I refuse to give in.  It’s about the running and conquering yourself, not quitting and sitting on the couch feeling sorry yourself. ( that will be later once I can’t run anymore).

Somewhere between mile six and seven, while trudging along, my neck pops in a way I don’t think it was supposed to.  But it helped the pain start to recede a little.  And after a point, the endorphins kick in and I feel ok.  I mean really ok.  No nagging pains at all, just running in a state of zen.  This is what it’s all about!

I get a few miles to truly live without all the pains.  And then we get to about mile ten and dystonia decides that those few moments of freedom were not to be allowed and to return with a vengeance.  My cruising pace dropped and if you would have seen me, you would think I was not going to make it.  Everything tenses over to the right and my arm starts flinging, it looks like a jog where I half drag a gimpy leg and hunch over to the right.

It was a cross between the zombie in the standard dragging his foot while chasing someone and Igor in Young Frankenstein all hunched over.  I was a site to see.  Several people stopped and asked if I was ok.  I would explain I had a neuromuscular issue and that considering the circumstances I was doing reallly good.  They would wish me luck and pass me.

The pain lasted all the way until I crossed the finish line.  I didn’t beat my previous half marathon time.  It was actually close to the samme time.  The only part that matters is I didn’t let dystonia stop me and ran the whole thing and never broke down and walked or just sat down and gave up.

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24 hours to go!

Twenty four hours to go and I will be lining up for a half marathon.  It’s going to be a cold October morning barely above freezing.  I’m kind of dreading this one but I can’t back down now after months of my big mouth trying to get people to come race the crip.

Thanks Dystonia!   A few of my symptoms have been persistent lately and they are gonna make this rough.  The trunkal symptoms make it tough to breathe and I have spent this week doing light runs trying to see if I could work it out with no luck.  It don’t matter though because tomorrow I will still cross the starting line knowing I have a bigger challenge than usual and head for the finish line.

I’ll never win or do very good at any race.  It’s ok though.  One day I can look back fondlly remembering when I was a runner and had the time of my life.

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