Welcome from

At this time twenty years ago, I was a carefree teenager looking forward to getting my driver’s license. Disability was a word I hardly knew.

Fast forward to the present, I am a graduate student able to access my college library through power-assist doors and an elevator that takes me all the way to the fourth floor. These are just some of the benefits I have through the Americans with Disabilities Act.

It was twenty years ago this past Monday, July 26, that President George H.W. Bush signed the ADA. This legislation has allowed me, and millions of other Americans living with a disability, to enjoy the same livelihood as other able-bodies Americans.

To celebrate this important landmark legislation, we wanted to share with you the op-ed piece that was written by our friend and colleague Susie Rood, director of Student Disability Services at Central Michigan University. Her involvement in advocacy work related to disability services spans more than a decade, and we are empowered by what she has to say.

We hope you are too, and we invite you to share with us what doors the ADA has opened for you and your loved ones.

Americans with Disabilities Act celebrates 20 years
by Susie Rood, CMU Student Disability Services Director

Kentucky’s Republican Senate candidate Rand Paul – the son of Rep. Ron Paul, R-Texas – sparked some unsettling feelings in the disabled community this spring with comments he made in a National Public Radio interview.

NPR’s “All Things Considered” host Robert Siegel asked Paul, in part, if he thought the Americans with Disabilities Act was an “overreach” and “… that business shouldn’t be bothered by people with the basis in law to sue them for redress?”

Paul responded, “Right. I think a lot of things could be handled locally. … I think if you have a two-story office and you hire someone who’s handicapped, it might be reasonable to let him have an office on the first floor rather than the government saying you have to have a $100,000 elevator. …”

Regardless of how a person feels about what Paul said, his comments generated lively political discussions in the months leading up to a milestone in ADA history.

This week marks the 20th anniversary of President George H.W. Bush signing the Americans with Disabilities Act into law and proclaiming, “Let the shameful walls of exclusion finally come tumbling down.”

This historic piece of civil rights legislation was pivotal in providing equal access for individuals with disabilities in areas such as employment, entertainment and housing. Perhaps Paul’s seemingly controversial comments illustrate the extent to which the ADA has become more commonplace over the past two decades, and the commonsense “why wouldn’t you?” attitude is exactly what the ADA was intended to foster.

Before the ADA, accommodating one individual over the convenience of others wasn’t even considered. Now universal design features – such as buildings that are accessible with curb cuts and automatic door openers, soap and paper towel dispensers that don’t require pulling a lever, and open captioning on television sets – are standard.

While not directly intended for able-bodied individuals, we all benefit from these conveniences. After all, how many of us have used a pedestrian ramp to a football stadium or a curb cut at the grocery store and been thankful there weren’t steps?

As with all civil rights legislation, the ultimate goal is for it to not be needed; to have a society in which all individuals are treated with respect and dignity and every person has equal rights and access. Because of this, common occurrences in our daily lives now include seeing signs for wheelchair access, finding assistive listening devices at movie theaters as well as seeing an individual using an assistive animal. Without access to such resources, these individuals would not be able to fully participate in our society.

It is very difficult to legislate civility, which is the underlying goal of all civil rights legislation. Such legislation will no longer be necessary when the founding principles of America and these laws become a part of our accepted everyday lives. While we’re making strides, we unfortunately are not completely there.

We wanted to share with everyone the link to an incredible multimedia package about us that is in the April 25 Morning Sun’s print and online editions.

The project started when Morning Sun photographer Ryan Evon approached us about following us around to develop a photo essay for the area daily newspaper. This package represents more than a year’s worth of his work, and we couldn’t be happier with how it turned out. We are grateful for the opportunity to share our story and increase MS awareness.

Click here to see the story, photos and videos that tell our story and how we try to help others to move forward. Please check it out and share it with others! Thanks for checking this out an for visiting us on our blog!

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!

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.

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!

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

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.”