Adventures as a PPMD Research Study Participant

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Stress test by the numbers.

I first heard about a research trial being conducted at Nationwide Children’s Hospital in Columbus Ohio for carrier mothers of boys with Duchenne and Becker’s Muscular Dystrophy about a month ago.  It was an innocuous Facebpost by PPMD highlighting just one of the many amazing research projects they are providing grant monies to around the country.

But this research project spoke volumes to me because I am a carrier of DMD/BMD.  For those unfamiliar with genetic lingo, it means that my son, William, has muscular dystrophy because of genetic coding that came from me.

Sit with that for a minute and consider what that means to a mother psychologically– the guilt, the shame, the anger.  In my darkest hours I perseverate on this guilt and take responsibility for something I had no control over.  I stew over comments made by other moms of boys with DMD/BMD who aren’t carriers.  I rage (in my head) at their seeming sense of pride in not being a carrier and shout “WTF! I thought we were in this together!”

But there is another side to being a carrier, a physical side.  I struggle every day with muscle aches and pain and unending fatigue. Oh and I may have some compromised heart health. They just don’t know because no one has studied carrier moms before.  But no big deal, my primary care doctor should just monitor my heart.  When I relayed this message to the 3-4 primary care doctors I’ve burned through since 2008 they didn’t know what to do and getting insurance to pay for Cardio MRI’s or echocardiograms unless you’ve had a heart attack is a laborious process that may not be covered in the end.

In 2014 I was determined to get to the bottom of my fatigue and body pain.  That process involved lots of blood work, a sleep study, more blood work and finally ended with a diagnosis of fibromyalgia.  According to Medline “Fibromyalgia is a disorder that causes muscle pain and fatigue…people with fibromyalgia may also have other symptoms, such as: trouble sleeping; morning stiffness; headaches; tingling or numbness in hands and feet; and problems with thinking and memory”.  It’s a diagnosis of last resort, you can’t test for it, but it certainly covered all of my complaints.  I’ve never been satisfied with this diagnosis though and haven’t had much pain relief with the meds they prescribed for it.

When I found out about the Nationwide research project by Dr. Mendell, I jumped in feet first. I wanted answers and knew this was the only way I was going to get meaningful answers.  I also wanted to contribute to a body of knowledge so maybe future carrier moms would have a better sense of what the carrier status meant for their physical health.  I connected with one of the study coordinators, assembled my medical records, filled out the necessary forms, bought two plane tickets (Chris was coming with me), booked a hotel, and rented a car.  I agreed to be a guinea pig for science and would spend two days giving baseline data to researchers.

I am writing this novella from the airport while we wait for our delayed plane ride home. Two days of tests behind my, the baseline numbers have been collected.  I’ll go back yearly two more times for the same tests.

Here’s what my schedule involved. On day one there was a small blood draw, the infamous 6-minute walk test, strength testing with a medieval looking PT set-up, a hair sample was taken, and a battery of socio-psychological tests were administered.  On day two there was an early morning Cardio MRI with contrast (meaning an IV- yuck!) and a stress test using an EKG monitor, VO2 max head set, and treadmill. But because the day started so early, I was done by 10am!

I have to two take aways from this adventure (two for now).

1st the doctors, health professionals, staff at Nationwide Children’s hospital are doing amazing work. Everyone I met was friendly, professional, and genuinely caring about moms like me and our boys. They are rooting for us all! I am grateful for these professionals and hope that their research provides some answers.

2nd I was constantly thinking about William and all the boys with muscular dystrophy. They are poked and prodded from such early ages and they somehow manage it multiple times a year.  I thought about the boys while I did the 6-minute walk test and how William never got to do the test. The strength testing session with the PT was familiar since I watched William struggle through these sessions since he was 4 – I even had to do the get up off the floor test from a prone position. Finally, as I lay in the MRI tube with an IV in my arm I thought about William and marveled at the fact that he made it through the test once already and it involves a needle and IV! William hates needles.  I am in awe of William and all the boys and young men who go through these test and many more frequently.  They are the real troopers!  For a carrier mom the tests are nothing, but being able to participate in a study that may help others – that’s everything.

For more information on this study see below. To find out what else PPMD is funding thanks to your generous donations, click the link below.

Jerry Mendell, M.D., Nationwide Children’s Hospital
Amount: $452,181
Date: 4/2016 4/2017
Title: Determine incidence and prognosis of clinically significant cardiac, skeletal muscle and cognitive impairment in carriers of DMD and BMD
Abstract: This study is a collaborative project between the Neuromuscular and Cardiology divisions at Nationwide Children’s Hospital. It is a longitudinal study with baseline and 12-month follow up assessments of female carriers of DMD/BMD mutations. The testing in this study aims to determine the frequency and clinical significance of heart and extremity muscle involvement in these patients and will evaluate the emotional burden of being a carrier as well as a care provider for a child with DMD or BMD.

Other research projects:

http://www.parentprojectmd.org/site/PageServer?pagename=Advance_funding

 

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Goofy Challenge Part 1 – The Half Marathon

Last week I ran the Goofy Challenge at Walt Disney World in support of Parent Project Muscular Dystrophy and their Run For Our Sons campaign. This was our third year heading south in January to participate in the Marathon Weekend. In 2013, I ran the half marathon and last year I ran the full marathon. Initially we were going to skip going this year but Anne joined in the fun last year doing the 10K with her childhood friends Maggie and Kris they weren’t interested in taking a pass. We didn’t really need much (or any) convincing. Soon after, Anne’s high school friend Carolyn and her husband joined the team. We were six strong and looking to tackle over 100 miles of the Disney Marathon Weekend.

goofy-expoThe marathon isn’t my best racing distance and last year’s Disney Marathon got tough early and I was toast by the end. I would have been wise to acknowledge that running a marathon after walking around Disney parks for almost 4 days wasn’t a great idea. Well, this sort of wisdom is in short supply with runners and I not only signed up for the marathon, I signed up for the half marathon too.

Two days. Two races. One Goofy Challenge.

Along the way we received support of numerous family and friends making this our biggest fundraiser yet! For that we are very grateful. Every dollar will be put to good use advocating and funding research for boys like William. The shirt says “I run to EndDuchenne” and that was our primary reason for going.

Anne, Maggie, Kris, and Carolyn were up first with the 10K on Friday. Somehow (despite delayed flights and forgotten race bibs) they all met before 5am and were off to get lost winding their way around Epcot for more than 6 miles. It was barely 40 degrees and dark at the start so they moved quickly to keep warm, finishing almost 20 minutes faster than last year. I’d like to see that kind of year over year 10K improvement so I could quit my day job.

10K

Leading up to the Goofy I spent more time thinking about how to run it than anything else. Should I run the half fast and hope I can still run a marathon? Do I run the half really slow and try to run the marathon faster? I even went as far as downloading last year’s results into a sortable spreadsheet and quickly discovered the fastest Goofy runners ran an even pace over both days so in short order that was my plan.

Leading up to the races was an extremely busy work and travel week and I didn’t run for 5 days. The night before the half, I was so eager to get started I only slept about 2.5 hours before the alarm rang at 3. Disney races start at 5:30 in the morning! For this reason alone I can’t imagine why so many people sign up for them. In my mind it’s easier to run a half marathon than get up at 3am!

Prior to heading off to my corral, I spent some time at the PPMD tent and chatted with the other Run For Our Sons runners. There are many reasons to run with PPMD at Disney and community is one. It was nice to meet some new faces. A familiar face in the tent was Brian Denger from Maine. He’s a great running partner and we’ve run together several times, including half of the 2012 Boston Marathon with temps soaring towards 90. It turns out we were looking for about the same time in the half so off we went.

Waiting for the Half Marathon to get started with Brian Denger.

I’m sure Brian and I were in the small minority of runners happy with the 44 degree race temps. With the calm winds it couldn’t have been much better for comfortable winter running. We started in the B corral which provided a slightly slower start than planned. Not willing to do any aggressive passing, we passed the first mile in 7:45. After that it was smooth sailing up the dark highway to the Magic Kingdom.

I’m not one who needs or cares much for crowd support in a race but my pace always seems to surge when entering the Magic Kingdom. That quickly ended when we ran into the 1:40 pace group  in Tomorrowland. They were clearly ahead of pace and probably backing off a bit. It seemed to take almost a half a mile to get past them leaving us with another slow mile.

Seemed like a good time to check the phone.

It seemed like a good time to check my phone. — Actually I’m just taking bad photos.

Through the Magic Kingdom I was really beginning to enjoy the run. The pace was very comfortable and the sun was soon to rise. After a quick visit to the loo we ran the final 4 miles back to Epcot dropping the pace.

Runners barely swoop into Epcot before heading back out to the finish. Despite having run the half at nearly a training pace I didn’t let myself get caught up in racing to the finish. There was a marathon to run in less than 23 hours.

It was just about the most comfortable and easy half marathon I’ve run, all business turning in 13.1 miles about 13 minutes slower than the last time I ran this race. Perfect and on plan! I’m grateful to Brian for running with me. Without him I’d probably have gotten carried away and put my marathon in jeopardy. We quickly gathered our stuff and headed back to the hotel.

Most of all I’m grateful and fortunate that running has been so good to me and I’m able to share that gift by Running For Our Sons.

To be continued….

Walt Disney World Half Marathon by the numbers:

Time: 1:36:29
Place 257/22081
Age Group 32/1623

Splits 48:50.36 / 47:40.64
5K split in 23:03
10K Split in 45:28
15K Split in 1:09:11

Brian finished one place ahead of me and 14th out of almost 1000 in his age group!

Heading back to Orlando

In almost a month we are heading back to Orlando to participate in another Walt Disney World Marathon weekend as members of the PPMD Run for Our Sons team.  After last year’s 10K, I wasn’t so sure about going back and doing it again.  In fact we pretty much flew back from Orlando convinced we wouldn’t be returning in 2015.  Maggie and Kristina however were another story.  They were ready to do it again as soon as the 2014 10K was over.  They were going with or without us!
10K Finish
Then the winter got long and I settled into my annual winter doldrums and asked Chris “should we do it anyway?”  By this time, PPMD’s Run for Our Sons registration had already passed (registration was much earlier than past years and all the 10K spots were gone).  Maggie and Kris true to their word signed up for the 10K as soon as they could.  There were plenty of Goofy spots open when we changed our minds and Chris registered to do the half and the full marathon.  A goofy move 😉  A few months later, I signed up for the 10K when the Disney registration opened, rather Chris registered me.  So the Run4Will 10K team was good to go!

Since last year though, an amazing thing happened.  Our team grew!!  I am not quite sure how this happened and still wonder why people go above and beyond to support us and our cause.  I am actively trying to not puzzle this out and I am trying to just accept it and have gratitude.  What’s that you say??? Anne is trying not to over think something? Yup, I’m trying.  Simply put I am honored, flattered, awed, happy and incredibly blessed to have so many amazing people in my life.  So who makes up this group of amazing people?  They are family members near and far, friends old and new, runners and non-runners, and every shade in between.  If you send a note, connect on facebook over a joke, eat a meal with me, ask how I am doing, send a thought or prayer our way or donate financially, you are on this team! You are a part of my infrastructure, you keep me braced to face what lies ahead.

Tara and Logan 5KSo at the end of October, Tara and Logan Gill ran there first 5K in honor of William.  They did an amazing job and are super stars!!!  I suspect Tara mainly runs because of William!

Carolyn (Quinn) Prucher and Mike Prucher joined the team and are running Disney with us.  Carolyn lives in Boston were her family and is a friend from high school.  She’s run into Chris and William on some of their Boston adventures and knew who they were through my facebook posts.  Carolyn’s husband Mike is just as inspired as Chris and signed up to do the Goofy events while Carolyn is joining Kris, Maggie and I on the 10K course.

Did I say I feel blessed?

Please consider donating and joining the team.

Thank you!

Running Boston & Disney’s Goofy for PPMD

ImageAfter running the Disney half marathon, marathon, and 10K for Parent Project Muscular Dystrophy’s Run for Our Sons team over the last two years we decided perhaps it was time to take a year off before going back again. That idea didn’t sit well with us and didn’t last long. The support we received last year was overwhelming and we can’t take our foot off the gas.

We’re going back!

This time I’ll run the Goofy Challenge which is a half marathon on Saturday followed by the full marathon on Sunday. Anne’s friends Maggie Novello and Kristina Berryman have signed up once again too. Team Run4Will has more work to do.

I’m running the Boston Marathon too!

Back in 2010 the idea of running the Boston Marathon for PPMD inspired me to work hard and qualify for the race earning a spot for PPMD into the race. Next week I’ll run my fourth Boston Marathon in PPMD green and, as always, dedicate my run to boys like William who can’t. I’m proud and honored to be fortunate enough to do it.

~Chris

2014 Disney Marathon

Last Monday Seven Mondays ago we returned from Florida. It’s been a long time since I was exhausted as I was that day. It wasn’t a bad exhaustion. It was good because we had just spent the last 5 days living life to it’s fullest.

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pluto

Five days prior we woke for an early flight, checking into the Polynesian by lunchtime. We hit the ground running: changed into shorts; enjoyed a nice lunch; hit the race expo at ESPN’s Wide World of Sports complex; and dove into dinner with Mickey and friends at Chef Mickey’s in the Contemporary.

Thursday I got up for an easy 5 mile run while Anne and William slept till after 9. During that run, my legs were fresh and 7:30 miles ticked off as easily as they should have. After brunch we hit the Magic Kingdom for the day and moved on to Epcot that evening for dinner in Japan! We closed down Epcot and watched the fireworks before heading back for bed.

epcot-fireworks
10kFortunately our energy reserves were still running high since Anne had to get up at 3:45am to meet Maggie and Kristina for the 10K. Starting in the dark, they had quite the adventure going further on foot than any of them have in probably many years. They did it wearing Run For Our Sons lime green and bright, red superhero capes and they finished together. Despite some soreness they looked energized at the finish. I never worried about them covering this new distance as I knew they had each other to rely upon to the end.

teamThere was little rest for Anne as we went straight to breakfast then on to Epcot for the day. Despite Epcot not the best place to rest your legs, we enjoyed ourselves exploring and hitting every ride we could. That evening we joined everyone on our team at the Run For Our Sons pasta party. It’s inspiring to see so many families, relatives, and friends gather together in support of the same goal. This year was the 10th time RFOS has gathered at Disney and a number of runners have run each year and their efforts were recognized.

pastaparty

Saturday morning I was up early and went for a short run paralleling the half marathon course as a spectator. During this time I easily saw more than a half dozen RFOS runners in their lime green singlets. It was warm and muggy and eventually the mercury would tie Orlando’s record high of 86–definitely a tough day for running a half!
bacon

Saturday was our third day park hopping. We kicked it off early in the Magic Kingdom having breakfast with Pooh and his friends. Despite being in middle school and almost 12 William still has a soft spot in his heart for his pal Pooh. Poor Piglet though! We decided to prank him with a plate of bacon when he came around to visit. Last year he didn’t fare much better with us when I told him I had Pooh on my hands.

After breakfast we hit the park for another six hours walking and riding before joining Maggie, Kristina and their families for dinner at the house they rented. It was a rare opportunity to sit down and rest my legs for tomorrow’s marathon. Thankfully storms blew through that evening to clear the heat and humidity for Sunday’s Marathon.

The alarm rang early Sunday morning after barely 4 hours of sleep. Soon I was out the door for a 5:30am marathon start. I had a great fall of training and my best December ever! I knew my final two week lead in wasn’t great and I had worn my energy levels down over the past week but was undeterred. I took my spot in corral A, which was smaller than the other corrals. It was mostly filled with skinny running nerds but offered a front row view to the pre-race festivities on the stage next to us. At one point the Emcee was listing the different kinds of runners lined up for the race and said we even had superheros in capes!  The camera for the big screen cut to an RFOS runner wearing the fast becoming iconic red cape!

castleThe race started with fireworks. Just as I ran under the start I could feel debris from the fireworks raining over me and some of it got in my eye. I worked through that quickly and settled in at my goal pace being careful to watch the mile markers hitting them within 3 to 5 seconds of target. During the early miles of a long race this pace ordinarily feels painfully slow but my breathing was unusually labored and I felt heavy. I was giving too much effort and knew I couldn’t have run 15 miles at that pace. It felt closer to half marathon effort than marathon effort. After the fifth mile I backed off and just ran according to effort which meant slowing 15-20 seconds per mile. I decided I’d just run a strong and smart race to the end. There would be no walking or quitting while running in the lime green shirt that says I Run To End Duchenne.

stadiumSettling in at a low 7 minute pace was still rough but I hoped to stick to it as long as possible. It was moderately bearable but I still had concern over my fatigue level. I passed the half marathon clock at 1:33 with more fatigue than I’ve had in any of my previous marathons at that point. I knew it was going to be a hard last 6 miles and accepted that.

Moving through miles 13 to mile 20 I had some rough patches but managed to keep my pace mostly under 7:30. It was tough but I hoped I’d be able to keep rolling at that pace for as long as possible. The sun was up and the weather seemed dryer and cooler. With the exception of a slight breeze it was decent running weather. That was a good thing because the run got even tougher after mile 20.

I ran the last six miles on pure guts. Somehow I thought I was sill running sub 3:10 pace since only the 3:05 pace group had passed me somewhere near mile 13 leading into the Animal Kingdom. My “math” told me I could give up almost a minute per mile and still finish with a Boston Qualifying run and I did my best to run as fast as I could. Soon after mile 22 I saw the next pace group over my shoulder before we entered Disney’s Hollywood Studios. I set a goal to hold them off until we left the park. That pushed me on and I held them off for a mile but was shaken back to reality when I realized it was the 3:15 group. What happened to the 3:10 group?

finish

I knew sticking with this group wasn’t enough for a BQ since they started behind me. I dug deep and kept them in sight to the end, never more than 15-30 seconds up the road. The final miles were painful and exhausting. I gave it hell and willed my legs to keep turning over and refused to slow any further. There was no way I wasn’t going to give it my best effort mindful of who I was running for.

I finished with 3:16:19 on the clock and, unlike my other marathons, was immediately at peace and relaxed when I finished. Instead of bending over with pain, I was almost numb. This race had been on my mind as an important target for months and it was now finished. The script didn’t go according to plan but my effort had. In retrospect after 4 days enjoying Disney with my family running at my fastest was impossible. Still I ran strong and that was OK. When I committed to this early last year, I never imagined we would grow to a team of 5 and double our fund raising efforts!  The whole experience and what it meant was much greater than my finish time. Standing in a still barren finishing area having just finished this journey around Disney for boys like William I didn’t feel alone.

chipmunksEventually I made my way out, took my finishers medal, changed out of my wet shirt, grabbed my traditional post-Disney run beer, and made my way over to get my photo taken with Chip and Dale for William before finding a seat at the RFOS tent for a few minutes.

Soon enough I was back to the Polynesian where I met my family for my second marathon of the day. We headed off to the Magic Kingdom, Epcot, then back into the Magic Kingdom for magical hours packing in over 11 hours of park hopping on our last day at Disney.

Just like last year, Running For Our Sons at Disney is an incredibly rewarding experience. It’s humbling knowing I’m doing a small part to help improve the quality of life and outlook for boys like William who live with Duchenne. It’s an honor to dedicate a period of serious training and a strong run to them. I’m grateful to everyone who supported us in this endeavor. Thank you!

Goofy

Tomorrow our Disney running adventure begins.

Tomorrow our Disney running adventure begins.  It’s a 4am wake-up call to ensure we get to the airport on time for our 7:30am flight to MCO. Luckily we booked with Delta as Jet Blue is taking a vacation.  Air travel with a wheelchair is a challenge and getting there early should help make the process smoother.

For my part, I am a bundle of nerves and emotions.

I am nervous about the flight and whether or not William can keep his cool.  Managing his chair and special power-assist wheels has awakened a level of anxiety in him we have never seen before.  These wheels have been a Godsend and have kept him wheeling on his own for a lot longer than possible with manual wheels. BUT the anxiety, it can be unbearable!!!!  He relies on his chair just as we rely on our legs. We’ve talked the plan through multiple times and have worked very hard to remind William he can control himself and that everything will work out.   He’s come around lately so I think he is ready.

I am nervous about my event, the 10K.  In all honesty I will walk 99.5% of it.  I am nervous about it regardless because its 6.2 miles.  Luckily I will not be doing it alone!!!

And here’s where the emotions take over… when I got the idea of participating in the Disney Marathon weekend for PPMD and RFOS I never imagined I would be doing it with a team.  Wow! I also never imagined that in September 1981, I would meet some amazing friends who would still be supporting me, 31 years later.  I can’t express how grateful I am to all of these amazing people.  People with their own families, lives and challenges… but these people are special.  They have huge hearts, amazing compassion and tremendous empathy.  First and foremost the 10K team is Kristina Solan (Berryman), Maggie Bedosky (Novello), and myself.  But the team also includes Tara Patti (Gill), not only has she been a rock for me, despite her own challenges, but she also sent us a box of amazing team shirts.

Team shirts from an awesome person.

Awesome team shirts!!

The shirts took me by complete surprise but then I thought, no, that’s Tara! The team includes Bridget Habesland (Andersen), who keeps sharing and reposting our blog updates and pleas for donations.  But that’s not all, the team includes everyone who’s donated to our cause; Mt. Carmel school buddies, John S. Burke buddies, Patch American High buddies, William & Mary buddies,…  Without all of you, we wouldn’t have exceeded our fund raising goals- yes, exceeded!  The team includes our families that not only donated funds but also donate their time and familiness to us constantly.  And finally, the team includes everyone who has taken the time to read our Facebook posts or blog entries about life with William and life with DMD.

For Chris and I, the journey with DMD began in pitch black darkness and an unimaginable suffocating despair.  You are all candles in the darkness that help us find our way.  With great sadness I heard about the passing of a 16 year old young man with DMD this morning.  My heart breaks for his family and their loss.  It’s everyone’s future, I get that, but 16 is too young and so is 10, 20, 25, 30…These kids deserve more time and by supporting us you have helped bring us one step closer to finding more time for these kids.  Thank you.

Wrapping up the Holiday Streak

In November I decided to once again streak through the holidays. Run streaking, that is!

This is my second time doing this and both times the goal of the streak was simple. I wanted to spend a period of time focusing on giving my best training effort towards my run for PPMD at Disney. As the month moved on and the days added up I was increasingly mindful of what I was running for. I had a few rough runs, some hard workouts, and plenty of nasty weather, but I put it all to the back of my mind and kept going. Each sunrise was a new day. In the end I succeeded in moving my fitness along and feel ready to run the Disney Marathon in 10 days. I’ve now run every day for the last 44 days averaging 7.8 miles per day. I’ll probably take a break soon and with a nor’easter bearing down that may come even sooner than planned.

To test my fitness I ran my 4th straight New Year’s day race today. All I wanted to do was run an even controlled effort, not an all out race. It was in the mid 20s, I was wearing plenty of wool, and my mild asthma tends to appear when running fast in these temps. Fortunately, I was able to knock out out an evenly paced 18:36 5K. I’m happy with that.

From here on it’s not about what I do to help my race, rather what I do that might hurt my race. I’ll be mindful of that.

ice creamWe’re flying to Florida next Wednesday. We’re looking forward to some warm weather, short sleeves, and probably some ice cream!

Here’s a shot of a run William and I did in September. Yeah, we stopped for ice cream at mile 7!