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It’s been a little more than six months since Dan and my trip to Walt Disney World. My memories from that um, memorable trip are still pretty fresh. Let’s see, I remember theme park rides, amazing fireworks, images of Mickey Mouse everywhere and having a great time with my family and Dan. But really what I remember most is my late-night visit to Celebration Hospital in Orlando.

Dan & me at Walt Disney's Animal Kingdom

To treat my MS, I take a subcutaneous injection ever day, which is supposed to lessen the frequency and severity of my Multiple Sclerosis. After giving myself injections every day for the last 12 years, I guess it was bound to happen: I had to have an incident to remember.

And remember this one I will.

It was a little later than when I usually take my shot, but we were on vacation – getting away from it all. The day was pretty packed with activities. Eating dinner, taking my shot, and crawling into bed sounded like a perfect ending to a busy Disney day.

I took my pre-filled syringe from the refrigerator, pulled off the cap, inserted the needle into my stomach, and pushed on the plunger. But the plunger didn’t budge. This sometimes is typical because I’ve developed scar tissue from taking so many injections. And as usual, I asked Dan to push in the fluid. He pushed on the plunger, but it still didn’t move.

I gave it another try and in my brilliance, I thought, “Oh, just give it a little twist.” And the next thing I knew, I had a syringe in one hand, and a needle in my stomach. Understandably, I started to freak out. But I tried to stay calm, looking at Dan to fix it. I was pleading with my eyes, “Fix this,” and he was looking at me with confused, “I wish I could” eyes.

Just then, he took his fingers and tried to grab the pointed metal piece and well, you know how quicksand in movies looks? That’s how the needle disappeared into my belly.

Poof. It was gone.

“Oh no! Oh no! What am I going to do?” I frantically questioned.

Dan was as mystified as I was. What could we do? I tried to regain some calm and call the hotel front desk. They transferred me to safety, where I give the same story I just told you. Safety was as mystified. They told me to call paramedics, which I did. When the paramedics arrived I went through the whole story, again, and they said, “We’ve never heard of that. You should probably go to the hospital, and at least have an X-ray.”

So off to the hospital we went. X-rays were taken. At least three times, between doctors and nurses and X-ray techs, I heard, “Wow, never heard of that before.” Comforting, isn’t it? By about 2 a.m., after several X-rays turned up nothing, the doctor told me that he was going to let the needle work itself out, kind of like a sliver. After all, it would be more dangerous to perform surgery to remove something they couldn’t see.

And guess what I said? “Really, hmm, I’ve never heard of that before.” But I trusted him, and besides I just wanted to go home; home to Michigan, that is.

Because the reality is, when you live with a chronic illness like MS, you never really can get away from it all.

P.S. It really turned out to be a great trip.

P.P.S. Yep, the needle is still there

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 …

OK, so it’s been several weeks since we’ve checked in with you. Hmmm… Let’s see. Guess we’ve been busy:

• Settling into a routine with our CMU graduate class, “The Legal Search for Social Justice”

• Volunteering at our church – Immanuel Lutheran Church – with Jennifer serving as a Vacation Bible School teacher and as a temporary receptionist while our regular receptionist recovered from surgery, and Dan serving as a member of a special action planning process committee

• Cheering on our CMU Chippewa football team that is off to a 3-1 start, including a 29-27 upset over Big 10 interstate rival Michigan State University

• Celebrating Dan’s 37^th birthday with a weeklong trip to Walt Disney World

• Helping each other stay positive while dealing with the realities of life with multiple sclerosis  

We’ll write about these experiences in future blogs, but we first wanted to tell you about a couple of exciting events that we’ve been invited to participate in and share various stories and perspectives about our life together.

Here’s information about where you can catch us in Mount Pleasant this month:

CMU Disabilities Awareness Fair
Saturday, Oct. 17

Featuring vendors, speakers, children’s events and more, this fair will be the highlight of the university’s month-long effort to increase disability awareness.

• 10 a.m. to 3 p.m.

• Finch Fieldhouse, Central Michigan University

• Free and open to the public

• Our presentation is scheduled for 11 a.m.

Michigan Story Festival
Friday, Oct. 23, to Saturday, Oct. 24

This two-day event offers a complete showcase of the power of storytelling in all its art forms.

• 10 a.m. to 4 p.m. (Saturday)

• Various locations, Central Michigan University

• All Saturday events are free and open to the public

• Our presentation is scheduled for 10 a.m. Saturday in the Chamichian Recital Hall of CMU’s School of Music Building

After winning Acorda Therapeutics’ national contest in search of people to tell stories of their lives with MS, a series of five podcasts featuring Dan and Jennifer are live on the “I Walk Because” Web site today: iwalkbecause.org/podcasts.

Dan and Jennifer will be checking in later with more details, but please watch these amazing videos and pass them along to your friends!

Fun … that’s it. Really! Having fun makes my MS more tolerable, and when I’m having lots and lots of fun, I sometimes even forget that I’m living with this disease. Yes, my daily injectable (which has more than doubled in price in the 10 years since I started taking it!) works to slow the progression and lessen the severity of my multiple sclerosis, but it’s the fun and the people that I’m having fun with that motivate me to wake up every morning and keep fighting and thus is the best medicine!

There is one bad thing about all this fun:  having too much of it really wipes me out. While I’d rather blame the MS for slowing me down, I’m realizing that I don’t recover like I used to. Certainly not like when I was in my 20s and didn’t have this chronic illness. And now as I recover, I end up putting some important things–like this blog–on the back burner, and I apologize for that.

So without further ado, here is a glimpse at what has kept me (and Dan) busy:

Hey Boo-Boo 

We went to a great picnic, and there is nothing better than being surrounded by friends who just get you. Friends from my old MS support group in Flint were getting together. A picnic was planned, but our attendance was spontaneous. Talking with two of the group’s members earlier that afternoon, they mentioned their plans and invited us to join them at that evening’s picnic. There was no way were would miss it! And even though I have not been to that group in the four years since I got married, I wanted to enjoy a nice summer evening with them and my husband. This picnic was so awesome because while it was the disease that brought us together, it was barely mentioned. This picnic was about good food, good friends and good, oops I mean, GREAT times.

Play Ball!

No, not me silly. Watch ball is more accurate. Dan, my dad and Jim (my caregiver) and his family went for a fun time at Dow Diamond in Midland. We saw a Great Lakes Loons baseball game. The Loons won! We ate too much–hot dogs, nachos, cotton candy, and of course, for me the required dill pickle–you know, the usual baseball essentials. Bonus, the weather provided us with a beautiful night! The recently built stadium is completely handicap accessible, right down to a family restroom. This essential accommodation makes my comfort and enjoyment an almost certainty. And the cherry on top of this all-American sundae? After trying at the last few games we attended,I finally got to meet the team mascot,Lou E. Loon. What a perfect fun evening!

A man on a mission

After joining our team at this year’s Walk MS a few months ago, Jake (the wonderful husband of my close college friend Heather) decided that I was going to be able to get into their house. See, we had been to their house last summer for a party following the Crim race in Flint, but I couldn’t get into their house because it had a series of steps. 

Jake wanted to ensure that I could see the inside of their house when he and Heather hosted the engagement party for our dear friends, Jen and Adam, on June 27. So he did some research to see what was available. And, after asking me the width of my power wheelchair, he was fairly confident that he had found a solution: His friend, Andy, had access to a ramp from a standard moving truck. That, along with a custom ramp Jake built, made it possible for me to get into their house, which was very lovely, by the way And once in their home I was able to use its bathroom, making it the first residential bathroom, other than ours and my parents that I’ve been able to use in the seven years since I lost the ability to walk. And because of this, we could stay at the party for as long as we (and for a change, not my bladder) wanted. And much fun was had!! Thanks again Jake & Andy.

Dan & I deal with MS every second of our lives, so isn’t it great when we can find fun escapes? We’re excited about the St. Louis Blues Festival over the Fourth of July,  going to another Loons game, the annual Mt. Pleasant MS group pizza party, another Crim race and post-race soiree, and whatever fun opportunities come our way. 

Is it possible to have too much fun? Maybe, but we’ll keep having as much as we can handle. 

** Finally it’s getting close. Our Acorda national contest winning podcast should be up very soon! In the meantime, check out the first of the three winners: Mark’s story is online now.

And go have a little fun of your own!!

Jennifer

Never again will Jennifer and I be able to tell this story about our experiences in the days leading up to and during the 2009 Walk MS. Our backyard and house were converted into a movie set of sorts, complete with a director, cameraman, lights, cameras and a sunlight reflector thingy you see on many outdoor Hollywood sets. Not to mention that on several occasions, a neighbor passing by could have heard the words: “And … action!” echoing across the yard.

i felt like such a star! i have what i consider a pretty ordinary life. it’s a good life, but it’s ordinary … i’m just living. but for two days i had cameras pointing at me, a director asking me questions and people caring about what i had to say. and it felt amazing!

We’re still humbled and overwhelmed by the fact that we were one of three nationwide winners in the Acorda Therapeutics “I Walk Because” podcast contest. Acorda is one of the Walk MS sponsors and through its “I Walk Because” campaign was looking people with MS to tell their story — in their own words — about why they walk and what Walk MS means to them.

to find these people, acorda launched a nationwide contest inviting all walk ms registrants to submit a 30 second video about why they should be chosen to tell their story. the winners will tell their story as part of a video series that soon will be broadcast on Acorda’s ”I Walk Because” web site.

We felt that because we’re married and both are living with MS, we’d have a great story to share. Fortunately through the video we made (thanks Cynthia and Wes!), Acorda did too.

After the walk with Joe and Darren

in our winning video submission i say that i walk because i can’t walk and want to make sure dan always can, and dan says that he walks because he can and that hopefully through our effort with walk ms, someday I might be able to walk again. awwww. it was very sweet!

This theme carried through into the on-camera conversations we had in our video shoot, and we are soooo excited to see what Joe (the director), Darren (the skateboarding cameraman) and the production crews with StudioPMG and Acorda Therapeutics put together! They got everything from interviewing us and getting footage here at home to following us and members of our team – Team MonsterS – at the walk in Frankenmuth.

we’re hoping the final podcast will be posted for the whole world to see within the next several weeks.

And when it’s posted, all the readers who subscribe to our blog will be the first to know!

Jennifer and Dan

So Jennifer and I are sitting here still reeling from a flurry of weekend Walk MS events. Certainly, participating in the MS walk to increase awareness about multiple sclerosis and raise money to support MS research and programs is an annual event we look forward to every year.

we were all smiles on walk day

but even though this was the seventh year we’ve walked together with team MonsterS at the walk in frankenmuth, this was unlike anything we’ve ever done before. first of all, it isn’t every year the national ms society asks me to be a power partner and say a few words at the starting line, umm no pressure! 

Jennifer, still shocked by the PowerPartner sign featuring her photo and story, talking with Joe from StudioPMG at the Walk MS starting line.

Jennifer did an incredible job as a Power Partner getting the walkers fired up and convincing them that the early morning rain was going to stop.

and i promised the walkers that there would be no need for umbrellas

And if Jennifer was feeling any pressure addressing the thousands of people at the walk, she didn’t show it. I imagine she, like me, had gotten used to being watched. After all, we had just spent the day before the walk with a two-man production crew from StudioPMG in Irvine, California, who were interviewing us and getting footage for our Acorda Therapeutics national contest winning podcast.

darren and joe are two of the nicest guys we’ll ever meet and we are so looking forward to seeing what they develop for the podcast that soon will appear on acorda’s “I walk because” web site. they continued following us at the walk – joe on foot with his digital camera and darren on skateboard (!) with his video camera – filming us and asking more questions. not to be forgotten was ryan, a modern day kato from the pink panther, hiding amongst trees and on bridges taking our picture for a photo story he’s developing for the local newspaper.

While the media attention was an exciting one-of-a-kind element of our walk experience this year, the continued support of our family and friends is what made this last weekend’s event as meaningful as ever for us. There’s something indescribably humbling about the amount of support we receive from our loved ones for the walk as well as throughout each day of the year.

We’re looking forward to showing you pictures and telling you more details about these Walk MS 2009 experiences in the next week or so. Check back with us here soon!

Dan and jennifer

For the fourth straight week, Jennifer and I were included in the editorial pages of the Monticello Express. But this time it wasn’t as part of the weekly column written by Express Editor Steve Lerch. This time it was an editorial calling for someone with MS in the Monticello area to step up and get something started to help themselves and others living with this disease.

This is an incredible call to action to generate a local social network to help people make connections and get the important information and support they need. As a leader of the Gratiot County-area MS Self-help Group in Alma, Mich., I have seen firsthand the tangible and immeasurable benefits that such a group brings to people living with MS who are looking for everything from answers to direction, comfort, laughter, and most of all, others who can relate to the daily challenges they each are facing.

This type of mutual understanding from others truly has helped to lighten the load of what I’m dealing with and makes it a whole lot easier to smile and move on with my life, with or without MS.

More than 30 people attended our April 11 presentation in Monticello, Iowa.

I liked how in Steve Lerch's column after Jennifer and my presentation he said, "And then it was amazingly clear that these two were born for each other as they flirted a bit in between questions." Are we THAT obvious?

What is overwhelming to me is that I don’t think this call to establish an MS support group in Monticello, Iowa, would have been made if Jennifer and I hadn’t spoken there a few weeks ago. We were hoping to increase MS awareness. Based on this editorial, I think we did.

Here are some excerpts:

MS support group needed in Monticello

The City of Monticello needs a support group for those living with Multiple Sclerosis.

Two weeks ago, former area resident Dan Digmann and his wife Jennifer visited the Mary Lovell LeVan Renaissance Center here in Monticello to raise local awareness of MS–more than 30 area residents, many of whom living with the disease, attended to share their stories.

A support group can be organized by anyone. A likely group leader, according to Camp Courageous Executive Director Charlie Becker, would need passion and dedication to the cause of raising awareness for MS. …

Hundreds of thousands across the United States live with MS. Like the Digmanns, these people work with their local support groups to manage their condition by fielding questions, venting concerns and raising awareness.

For example, on Monday, April 20, more than 500 people gathered in Hamilton, NJ, gathered to participate in the National Multiple Sclerosis Society’s 21st annual Walk for MS fundraiser.

A local support group could present a unique opportunity for those living with the disease to rally together in preparation of a cure for MS. That opportunity could also present a forum for the voice of MS to be heard throughout Monticello and Jones County. Perhaps next year Monticello will have its first 5k MS Awareness Walk on behalf of the National Multiple Sclerosis Society organized by the community’s first MS support group. …”

So, as Jennifer and I drove back from Monticello, Iowa, earlier this week, we filled the nine hours in the van talking about all the things we could write about to follow up on our trip:

• The incredible accommodations and hospitality we received at Camp Courageous

• Our featured presentation hosted by the Ross and Elizabeth Baty Monticello Public Library

• The unexpected invitation to speak at the Monticello Rotary Club meeting

• Why we consider this our best trip back to my hometown

Stay tuned to our Web site, as we will foll0w up with these topics. But first, one topic we didn’t address – because we never saw it coming – was the follow-up column written by Steve Lerch, editor of the Monticello Express. Steve had featured us in an a two-part Q-and-A in the weeks leading up to our scheduled presentation. Sure, he attended the event and took several pictures, but I truly thought at most we’d be featured in a standalone photo with an extended caption describing our program.

Instead, I wanted to share with you what Steve wrote, and I still am humbled to hear what he thought about us, our presentation, and our life with MS:

Digmanns show amazing strength in battle with MS

Mindless Banter By Steven Lerch Express Editor

It’s hard to find a team anywhere as strong, determined and focused as the one in the marriage of Dan and Jennifer Digmann.

The couple held their public discussion to promote awareness for multiple sclerosis Saturday, April 11 at the renaissance center here in Monticello.

Dan and Jennifer are living with multiple sclerosis and have been doing so for about a decade. Dan is a graduate from the Monticello High School. He was even the sports editor for the Anamosa Journal Eureka for a short stint in 1995.

It was there at the AJE that I first met Dan. My mother was working there at the time. Back in those days I would stop by the newspaper to skulk about and see what that crazy world of newspapers was all about– that and to get my mom to buy me a Pepsi and Snickers Bar. Hey, I was 13 and my priorities were clear. These visits became known as “Lerch Alert.” Well, according to Dan anyway.

Years later I found myself having conversations with Dan’s mother Nancy at the library. She informed me that Dan was on his way back to the community to give a discussion about he and his wife’s fight with MS.

Fast forward to Saturday at the renaissance center where more than 30 area residents were in attendance. My mom and little sister Kelly even showed up. Enter Dan and Jennifer Digmann stage left.

Jennifer is now confined to a motorized wheelchair due to her MS. She opened the discussion by stating that she and Dan, her husband of four years, serve as an example of the differences of how MS affects people– some are confined to a wheelchair while others, like Dan, battle numbness in their hands and feet but are still able to walk.

After the facts and figures were discussed, a charming story about how the couple came to be Mr. and Mrs. was given. And then it was amazingly clear that these two were born for each other as they flirted a bit in between questions.

They are living with MS, not dying they said and doing the best they can. Dan, with the assistance of a certified caregiver, works hard to ensure that Jennifer wants for nothing. He works 40 hours a week as Assistant Director of Public Relations/editorial at Central Michigan University in Mount Pleasant, Mich., where they reside.

Dan has even taken to the streets as a budding 5k runner while Jennifer participates in MS awareness walks. She said that she always has to tell Dan to pick up his feet when he runs– occasionally, Dan’s left leg drags a bit due to the MS.

They are their strongest support system. Jennifer lifts Dan’s spirits when he’s exhausted and cranky from a long day living with MS. Dan lifts Jennifer, literally, in and out of her wheelchair when she needs to use the restroom or to go to bed.

Their story is inspirational to everyone. My hope is that they return to Monticello again next year and that more than 100 area residents show up in support of the fight against multiple sclerosis. Maybe it could become an annual event, which could also serve as my opportunity to use the term “Digmann alert.”