Welcome from

There Dan and I were, sitting at the table with two microphones, testifying before six Michigan Senators.

Dan was to my left and a gallery of about a hundred people sat behind us (thank God they were sitting behind us!) and listened to what we had to say.

The Region VII Area Agency on Aging had asked if we’d be willing to testify before a Michigan Senate Appropriation’s Subcommittee about our experiences with the MI Choice Medicaid Waiver Program. You know, that’s the one that provides the in-home care to help me with various activities of daily living, such as cooking, cleaning and grocery shopping, while Dan goes to work at Central Michigan University.

And when they asked, we jumped (okay not me) at the chance to share our story. We often say to our MS support group, “Be your own best advocate.” So when we were given this chance to speak to our legislators, we had to practice what we preach.

And it was WONDERFUL!

When all is said and done, we had the floor for about two minutes to tell how this program helps us to live our life together. And how incredible that these Senators, namely Sen. Roger Kahn and Sen. Deb Cherry, personally thanked us for coming, saying that it was nice to see the faces of the people MI Choice is helping.

 Thanks to Region VII that coordinates the caregivers who help me, many of our state legislators had already seen our faces and knew our story. The agency recently featured us on a poster displayed at a Michigan Legislative Luncheon in Lansing. And it wasn’t just a little poster. It was 2- by 3-foot displayed right there on the welcome table!

We hope that our story helps demonstrate to our State Senators and Representatives how this valuable program truly benefits so many people, as well as the state of Michigan.

With this, we’re even more excited about following up with our legislators at Older Michiganians Day in June, the same as we’ve done the past two years!

In other news …

• The current issue of Wartburg Magazine, the alumni magazine from Wartburg College (Dan’s alma mater), includes a well-written story about us and our efforts to inspire others and increase MS awareness. Check it out! 

• Speaking of current issues: The most recent post on Carnival of MS Bloggers features one of our stories! It’s really exciting to receive such recognition and be included in this online community of bloggers. Big THANKS to Carnival administrator Lisa Emrich for including us. She maintains a very active site that we’ve closely followed since we started a site of our own. 

From Herrad

 • And we were honored to receive a Big Red Bow Award from Herrad, administrator of the blog Access Denied–Living With Multiple Sclerosis. Check it out. Herrad is very sincere and we are so glad we discovered this very engaging and inspiring site!

Moving to the music on the dance floor is nothing new for Jennifer and me. At weddings and parties we always go and claim an unoccupied corner of the dance floor – out of everyone’s way – and “dance.”

This dancing involves Jennifer elevating her powerchair seat so we’re closer to the same height and we either embrace and sway to a slow song or join hands and boogie with our arms to a fast song.  

But there was something different this time at WCMU’s annual Night of Louisiana.

This was our second year attending what the public broadcasting network flaunts as a way for people to cure the mid-winter blues. As for me, I always tell others they have to go because it’s just plain ridiculous fun!

Boogying the night away

So, Jennifer and I donned our Mardi Gras beads and headed out for a night of southern-style cuisine and live Cajun and zydeco music by The Pine Leaf Boys and Lil’ Nathan and the Zydeco Big Timers.

After meeting up with our friends, we swiftly forgot about the frigid late January freeze. Trusting in the sweet fruitiness of overpriced and fully liquored Hurricane drinks to cool the burn from our spicy Cajun dinner, Jennifer and I watched as people swarmed the dance floor three notes into The Pine Leaf Boys’ opening song.

The people’s dancing to the fiddle- and accordion-laced Cajun music was contagious. Jennifer and I quickly claimed an unoccupied corner of the dance floor and throughout the night we danced – swaying and boogying while Jennifer sat in her powerchair.

But with one song, everything changed: Jennifer was standing – honest to God standing! – with me out on the dance floor.

Lord know what led us to give this a try (Jennifer thinks maybe it was a little liquid courage), but all I remember was her looking up at me as the slow song started and I asked, “Did you want to try standing a little for this one?”

Certainly, I always help Jennifer stand to make transfers at home, but never had we stood together like this in public, especially on dance floor with hundreds of people around us.

Jennifer didn’t hesitate to say, “Yes,” and as we always do to stand, she put her arms around my neck and I straddled her right leg, slightly squatted, wrapped my arms around her back and locked my hands together. And she counted, “1, 2, 3.”

A picture of us slow dancing, but not of our first real dance (Remember? We were the only ones there when it happened).

And there we were. Dancing our first slow dance. Jennifer and I standing together swaying to the slow song. And all we really could do was smile as we looked into each other’s eyes (although, I do remember telling her how awesome it was to see her standing because she knows how much I enjoy the fact that she’s two inches taller than me). 

While her MS-weakened legs likely limited our dance to less than a minute, I truly had lost track of time. I was really dancing with my wife. I’ll bet with Jennifer standing with me we looked just like everyone else on the dance floor.

But I couldn’t tell you for sure. For that moment in time, we were the only ones out there. 

Does standing room only apply to me anymore? After all, I no longer stand.

Yes, I’m being cheeky but something that happened earlier this week got Dan and I thinking.

Central Michigan University hosted many events to celebrate Martin Luther King Week, highlighted by a keynote performance by Danny Glover  – yep, Lethal Weapon Danny Glover.

He, along with his lifelong friend Felix Justice, presented An Evening with Martin & Langston. This performance intended to “bring audiences inside the worlds of two of the greatest orators of the 20th century: Martin Luther King Jr. and Langston Hughes.”

Sounds pretty interesting, right? It was a free performance with no tickets required. But, again, it was Lethal Weapon Danny Glover! How were Dan and I going to get accessible seats?

Dan knew I wanted to go so he called ahead and they were able to accommodate us. And they weren’t just any accessible seats: They were in the front row!

When we arrived 30 minutes before the performance, there was a line all the way down the hall with people trying to get seats in an already packed Plachta Auditorium. The ushers spotted us, called us forward and showed us to our seats right at the foot of the stage.

I was so excited and was so appreciative that CMU made the performance accessible for me as well as two other people in wheelchairs. We were the front row! For Lethal Weapon Danny Glover!

As Dan and I turned around to see the mob of people lining the walls at the back of the auditorium, I leaned over and whispered to him, “Membership has its privileges.” It’s wrong to say, but I guess great seats are a perk of being disabled.

It was a powerful performance that we both enjoyed. When it was over, Dan leaned over to me and whispered, “Membership does have its privileges, but all things being equal, I would have given anything for you and I to be among those standing at the back of the auditorium for the entire performance because it would mean you didn’t have MS.”

And you know what? I would have too.

Between a wall showcasing every major brand of running shoe in stock and a wall displaying the industry’s best wicking running apparel, the helpful salesman at Runners in Mount Pleasant squats and watches my feet as I walk back and forth on the uncarpeted section of the floor.

His analysis of my gait determines that I’m a neutral, meaning my foot absorbs the shock the way it was designed to, as opposed to landing heel first or landing on the very outside of the foot first. He tells me what type of shoe I need.

He smirks when I ask him to settle an ongoing debate between Jennifer and me about my status of “being a runner.”

Jennifer wholeheartedly professed that I was a runner, citing that I live and die by my Garmin GPS-enabled sports watch results each time I run and that I have respectful finishes in every race I enter. I, in turn, stressed that I wasn’t a runner. I merely was a guy who runs, pointing out that I maintained nowhere near the gazelle-like physique and pace of the people I pictured as true runners.

“You know what the difference is between a jogger and a runner?” he asks.

“An entry form,” he explains with a smile.

Near the finish line of the 8K race at the 2009 Crim

Following his logic, I’ll agree with Jennifer’s claim that I am a runner. But my numb feet always remind me that I am a runner who has MS.

Most races break down their entrants by specific age groups, not by whether or not they have MS. But if they did, I potentially have finished in the top five of this specific category in every race I’ve ever entered. Race forms will never single out runners who have MS, so I’ll continue comparing myself to other runners who likely aren’t living with this chronic disease.

I may never win any of the races I enter, but I always will have a decent showing because I’m there.

Despite my MS.

And with this New Year, on Aug. 28, 2010, for the first time ever I will run the full 10-mile route at the Crim Festival of Races in Flint, Michigan.

To spite my MS.

Happy Holidays and Happy New Year!

Have you enjoyed the last week? Busy celebrating with family and friends, I bet. So are you like me ­­- and I believe most Americans - a person who celebrates with food?

Well my holidays were wonderful, but I’ll be honest with you: I’ve been celebrating since Halloween. Somehow, it’s all been downhill since then.

First it was, “One little piece of candy won’t hurt,” then, “Oh I shouldn’t, but what’s Thanksgiving without at least a sliver of pumpkin pie?” Then to Christmas and two words: cream puffs. My mom’s are delicious. And come to discover, most of the people I’ve been celebrating with are great cooks.

Weight Watchers never had a chance, and thus the question I’m growing tired of: “Are you still doing Weight Watchers?”

First time I heard that, my answer was “Yep! I’m still down 55 pounds.” And I said it with pride. Sure, there was a little voice in the back of my head was saying, “Not for much longer if you don’t watch it.” But it was pretty easy to ignore because after all, I was going to meetings and still being somewhat mindful of a healthy diet.

However, the last time someone posed this question, I couldn’t say much. It was weeks since I had last attended a meeting, no boasting about my weight loss total. Instead I blushed, fidgeted uncomfortably and stammered, “I’m looking forward to starting again in the New Year.”

Well, here it is. And here I am - a place I’ve been before, but I can’t believe I’m here again. I must lose weight! Not just for appearance or clothes fitting properly or even for my health so much.

But it’s for Dan and my caregivers. And for what I still have that my MS hasn’t taken from me: my ability to stand and make transfers, and besides, managing my weight is something I still can control. Sure I find comfort in food but what comfort is food when my caregivers can’t lift me or Dan complains of having a sore back?

Gaining weight is selfish, and that’s where my MS is both a blessing and a curse. It’s a blessing because it gives me a very good reason to lose weight. It makes me realize that I function day-to-day with help, help that I want to and need to lose weight for. And it’s a curse because losing weight no longer is a choice I make on my own. The disease is indirectly calling the shots.

Any way you slice it, I am going to lose weight in 2010, for Dan, my caregivers, and most importantly for me. And as much as Dan hates it when I say it, I am so back on the horse!

Anyone want to get on their horse and ride along with me?

I think my mom and dad will be surprised to hear that a gift they gave me more than two decades ago is something Jennifer and I turn to often in dealing with the daily realities of multiple sclerosis.

I’m surprised myself.

After all, when you get confirmed in the Lutheran church, it’s expected that you’ll receive some sort of religious memorabilia commemorating the event. You know: it usually is something like a cross to hang on your wall, a religious plaque to set on your desktop or special coin to carry in your pocket to remind you that God loves you.

Mine was a red prayer book that has moved with me throughout Iowa and Michigan in a silver, black and white shoebox – like an honorary piece of luggage that accompanied me every time I changed my mailing address.

I always remembered “The Lutheran Book of Prayer” was in the shoebox, but it wasn’t until I was diagnosed with this chronic illness that I dug out the book and took its contents to heart. Looking in the table of contents, under the heading “During Illness” I discovered the prayer that has given me the strength I need to positively move forward through my life with MS.

And now, it’s a prayer that Jennifer and I read most nights before we got to bed, and we wanted to share it with you in hopes that it may provide you comfort in your life:

Gracious God, help Jennifer and me to accept your will in our illness. As your children we believe that you cause all things to work together for our good, both of body and of spirit. But sometimes in the midst of illness and pain we forget or doubt. Forgive our weak faith. When we become impatient, encourage us by your word. Despite our worries and suffering, help us by our lives to reflect the radiance and confidence of those certain of your promises of help. Restore us to sound health if it be your will, and enable us with new vigor and enthusiasm to serve you zealously for many years to come. Give us your Holy Spirit that we may always witness joyfully to our Christian faith before men and women, confessing that all life, on earth and in heaven, is a gift from you. O Lord, have mercy. Hear our prayer for Jesus’ sake. Amen.

Since I was diagnosed with MS, I’ve never asked God, “Why me?” Rather, I continue to tell God, “Help me.” And I’ve learned he’s always here, I just need to be open to where he’s offering a helping hand.

Even if it’s in a silver, black and white shoe box.

As I’m closing in on 10 years since I first learned that I most likely had MS, here’s a previous reflection about a rendezvous I had with my “mistress” on our anniversary …

As we stroll down Chicago’s Christmas-decked Michigan Avenue, you squeeze my hand and remind me that this day is our second anniversary. Not the anniversary that formally solidified our future together, but the anniversary of the day we were introduced.

In these two years you faithfully have been with me every day, and my mind can’t stop thinking about you. Thinking about what you do for me each day of my life, and dreaming of what our future holds. Just as parents in some cultures decide on the unions of their children, it was two years ago this day that I first was told that you likely would be with me till death do we part.

“The radiologist said the cause of your symptoms most likely is multiple sclerosis,” my physician told me over the phone at 9:25 a.m. that day, exactly one week from Christmas Eve. Our relationship officially was confirmed by my neurologist on Valentine’s Day. What a fitting day to remember the one that will be with you through everything - from here to eternity. Unconditionally.

But it is our first date that I remember most. How with one telephone call you altered my life. And two years is quite some time for this close a relationship. Granted, we’ve had our fallouts and spats, but in the end, I’m reminded that you’ll never leave me, and I can never leave you. So we deal with it and move on with our life.

While most unions utilize wedding bands to remind the couple of their commitment, you’ve added a twist to that tradition and have made my hands constantly numb, as though they have fallen asleep. An unwavering reminder that I am yours, you are mine.

We walk amid the noon pedestrian traffic, against the flow. You hamper my strides because you want to go back to our hotel room and spend some time in bed. You think we’ve done enough for today. You let me go out with some friends for lunch and so far you haven’t said too much about me drinking a beer. But I insist on going to the downtown music store in search of rare-to-find Springsteen gems.

We scour the Virgin record store, and much to your delight, we don’t find anything worth buying. You hate it when I find good music. It makes you so jealous because if only for a little while, I forget about you and our relationship. I don’t know why you worry. I’m not going anywhere.

We meet some friends who are attending the same conference we are. They’re walking a little faster than you would like us to, but I remind you that by walking our slower pace, they’ll become suspicious of what we have going on together.  

I think about how monumental this day is for us and how I want to share the milestone with them, but I know they won’t understand. You are like my mistress - I just call you “Ms.” And while others know about us, it would make them uncomfortable if I revealed intimate details of our relationship. No one but us can truly appreciate this moment.

One more workshop, and the day’s conference activities are over. I convince you that we can go out for a night on the town with my friends. You plead to celebrate the anniversary alone in our room, order some room service, and go to bed early. But I want to go out one last time and make the most of our anniversary.

We go with friends to an Italian restaurant, and I order the Italian sausage dish. And a beer. You didn’t do too much to me following my luncheon pilsner, so I anticipate you will lower the boom with excessive fatigue after a Heineken for dinner. But let’s be real about this. I am in the mood to order a second beer just to spite you, but it is the price I have to pay the waiter, not you, that keeps me from indulging on our anniversary.

Dinner is over, and we continue visiting with my friends. You’re getting anxious to get back to the hotel. All you want to do is get me in bed. But I’m enjoying myself on the town tonight.

I’m so committed to denying you, on the walk back to the hotel, I stand in line for nearly an hour for some cheese-flavored popcorn. Hey, everybody else was waiting in line outside the store, and my friends and I just had to get a taste of this highly sought-after treat. You’re like a whiny little kid pulling on my pant leg because you want to go home. You make my feet burn with numbness as I stand in line. “Whatever,” I think.

Alas, we make it to the hotel room, and much to your delight, I change into my shorts and T-shirt and pull down the sheets. Finally, you seem content. My hands and feet still are numb because you like to hold a grudge. But you’re not making anything else worse.

So we turn off all the lights but one, crawl into bed, and watch Monday Night Football - the Saints against the Rams. You even allow me the energy to stay up for the whole game. That, or my adrenaline has overpowered you because I have two of my fantasy football league players going tonight.

So here’s to two years. A constant struggle? No, not constant. But more often than I’d like. I’ll admit it: You’ve made me a better man because you’ve enabled me to put everything in my life into the proper perspective. And when I can’t do that and feel you overtake my will and spirit, I find strength to overpower you through another fantasy in my life: That someday, they’ll come and take you away. Let’s be honest: I, and nearly a third of a million Americans, don’t deserve you.

Happy anniversary, Ms. 

We were toying with the idea of posting a blog that ties up some loose ends, and inspired by the recent post on Brain Cheese, here are some of the things we’ve been meaning to tell you:

Bruce didn’t play “For You.” Despite our valiant efforts from the not-so-cheap seats, Springsteen didn’t see our sign and play “For You” when we saw him at the Palace Nov. 13. But no hard feelings. He, along with the “heart-stopping pants-dropping house-rocking earth-shaking booty-quaking Viagra-taking love-making legendary E Street Band” instead gave us nearly three hours of rock and roll insanity, highlighted by a performance of the entire Born to Run album. Thanks for everything, Bruce.

123 days and counting. Michigan native Joe Fairchild has been running across America to raise money and awareness for Multiple Sclerosis. According to his news release, “Though covering 25-30 miles most days is a challenge, to Joe the journey is about much more than a physical feat. He will be making the journey alone, pushing all of his essentials—a tent, sleeping bag, clothes, food, water—in a modified baby stroller.” Now 2,415 miles into his trip, he’s hoping to reach Los Angeles by the end of the year. Learn more about him and his journey at runsomemore.com.

Coverage in the media. The beginning of December brought a one-two punch of excellent media coverage of our efforts to increase awareness of MS and inspire others living with the disease. It started on Dec. 2 when we learned that our friend Lindsay Allen featured us in her guest blog “Dan and Jennifer Digmann: Fighting MS, hand-in-hand, one day at a time” on Justin case you were wondering. Thanks, LA! Then, two days later Central Michigan Life ran the story, “Mount Pleasant couples copes with multiple sclerosis, inspires others with disabilities.” Thanks to the reporter Jake Bolitho and photographer Ashley Miller! We appreciate all your support in helping to get the message out.

We cleaned up a little bit. To add the above media coverage to our “In the news” section, we took a little time to clean up our blog, which included adding Michael Gerber’s blog, Perspective is Everything, to our home page. We enjoy his writing and, well, his perspective and we encourage you to check it out regularly. We also added Dina Kawer’s blog, How Will I Get Back Down?, to share with you her inspirational story of climbing historic Masada, despite her MS. Or perhaps it was to spite her MS. We had the honor of meeting her at the NMSS annual meeting a few weeks ago and hope you have a few minutes to read her story.

Little did we know. Yeah, come to find out our parents knew we were going to receive the MS Achievement Award all along. Apparently they had been informed of the award so they would do their part to encourage us to attend the annual meeting in Livonia. So this is why Dan’s mom offered to pay for a hotel room for us to make it an easier decision to go and why Jennifer’s parents were eager to say they’d go with us so Dan didn’t have to drive the whole way. They keep good secrets. No wonder we never knew what we were getting for Christmas :-) And a cherry on top of the MS Achievement Award? Jennifer’s Walk MS team, Team MonsterS, also was recognized at the annual meeting as the 40^th of the top 100 fundraising teams of 2009 for the National Sclerosis Society, Michigan Chapter. Go MonsterS!

There! All loose ends, tied up …

After presenting eight of the 10 awards, Matt “Mojo” Lersch paused to ask officials for direction before moving onto the ninth.

The master of ceremonies at the National Multiple Sclerosis Society, Michigan Chapter’s 2009 Annual Meeting and Celebration of Volunteers and Top Fundraisers in Livonia showed the crowd of nearly 200 people the specific directions typed in the script he was following.

“This award is a secret,” whispered Mojo, who hosts the Rock ’N’ Roll Sideshow on Lansing’s Rock Station Q106 and was diagnosed with MS in December 2008. “Only a few people know who’s getting it.”

Mojo then was given the green light to present the 2009 MS Achievement Award, which expresses the NMSS’s appreciation of and to provide recognition to an individual with MS who has achieved outstanding success in life.

He described that while the award recipient doesn’t need to be a NMSS member or volunteer, this person must have made a significant impact in his or her profession and community.

But when Mojo began to read about the accomplishments of this year’s “secret” recipient, he led with, “This couple …” And we soon realized he was talking about us.

Our eyes pooled with tears and the reality quickly sank in: We were being named the 2009 MS Achievement Award recipients.

In following what has become a built-in emotional defense mechanism for us, we held each other’s hand and both started laughing to keep from crying. We were so surprised to be recognized for what we’ve done to increase awareness about MS, we didn’t even make it on stage to receive the award.

Were they really talking about us? It took NMSS Michigan Chapter President Elana Sullivan meeting us at the foot of the stage with the award for us to believe that this really happened.

It’s incredibly overwhelming and humbling to be recognized like this. After all, we never asked for this disease. We are just doing what we can to get the word out about MS and help people positively move forward when dealing with whatever challenges they face.

Through our volunteering at NMSS events, public speaking and maintaining this blog, we hope to increase awareness and public understanding of this chronic disease of the central nervous system that affects us and over 400,000 people nationwide, including 18,000 in Michigan.

This prestigious award is our proof that you never know what kind of impact your actions will make on others.

Dear Bruce Springsteen,

As you scan the sea of signs surrounding the stage that plead for you to play one of your vintage classics at the Palace of Auburn Hills on Nov. 13, my wife, Jennifer, and I won’t be there.

Instead, we’ll be holding up our “4 U” request all the way across the arena in one of its handicap-accessible areas. To see us, you gotta look hard.

While we could play the ticket lottery and get our numbers called to stand near the stage the entire concert, our multiple sclerosis forces us to stay in our reserved seats.

Combined we’ve had MS for more than 20 years, and we each are living with very different forms of this disease. While I have the relapsing-remitting form and regularly compete in 5K runs, Jennifer has secondary-progressive MS and can no longer walk.

She uses a power wheelchair and this is why we, along with two of our friends coming from Iowa, must stay in the handicap-accessible area to experience the euphoria that you bring night after night after night after night.

Your music has 
pulled me through every phase of my life with MS:
 from fear and self pity, to anger and frustration and finally to acceptance and moving on with the vision of a brighter future. For that, I gratefully thank you.

And if it’s not too much to ask you for one favor: When you’re searching for requests at the Palace Friday night, please look straight across the arena for my baby and me waving our sign asking you and the E Street Band to play a full-rocking
“For You,” for us.

All the best,

Dan Digmann
Mount Pleasant, Michigan