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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. …”

did you shower today? kind of personal, yes i know. but did you take a shower today? you probably did. it’s kind of like breathing. you just do it and don’t really think about it.

that is until you can’t do it.

for the first six years that i knew dan, we would make the drive from michigan to iowa to celebrate easter with his family. we’d stay three or four days at a hotel conveniently located in town close to dan’s parents house. it was a cute place - clean, a pool, even free pop tarts at breakfast and it was pretty accessible.

well , at least for three or four days. but by day five, despite my efforts to wash up in the bathroom sink or go in town to have my hair washed and coiffed, i needed to shower.

only problem was that this cute little hotel did not have a roll-in shower, which is a necessity for me because i can no longer stand .  so it’s absence meant that we had to keep our trip short. just a quick visit. and fortunately everyone understood. we were pretty content but our visit always went by way too fast. 

however, this year was different. we wanted to and needed to stay almost a full week. that meant that we would have to stay at a different hotel. it’s not like i could forego a shower for a whole week! we had to find a hotel in a bigger city than monticello. one with a roll-in shower. one twenty-five or thirty minutes from his parents. bye bye pool, pop tarts and a convenient location. 

or so i thought. 

but dan had a kind of crazy idea “see jennifer, there’s this camp not very far away from my parents house. it’s a camp that would be accessible. no, really accessible…roll-in shower accessible.”

heck, if there was any place in town where i could take a shower, a real shower, i’d be game. to be honest i was a little skeptical but i was game. so dan made a few phone calls. then we checked out the camp’s website and finally, we packed our bags and off to a camp in iowa we went.

camp courageous was no regular camp. it was amazing! beautiful scenery, friendly staff, great rooms and most important, totally equipped with a roll-in shower. in fact, there were six such showers in our cabin. my cup runeth over with cleanliness!

and to be exact, april 11 was the day of my first real shower in iowa for over six years. which is why it was such a glorious day!

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.”

Today the second of a two-part series featuring an extensive Q and A with Jennifer and me appeared in the Monticello Express, my hometown newspaper. Certainly, Part II has different information that Part I, but I still feel the same about it as I did last week (see my previous post)!

I guess what’s different this time around is that in addition to being humbled by it all, there’s a lot of excitement (or is it nervousness?) surrounding our being featured in the paper again this week: Jennifer and my presentation, which was what motivated Express Editor Steve Lerch to talk with us in the first place, is happening in less than two days! 1:30 p.m. Saturday, April 11, to be exact. Let’s see … a two-part interview in the Express over the last two weeks, presentation flyers being posted all around town, and, (how incredible is this?) copies of the flyers getting inserted in the bulletins of the church where I grew up? No pressure there!

The reality is we couldn’t be more excited about the opportunity to share our story in Monticello to increase awareness about Multiple Sclerosis and inspire others who are dealing and living with the challenges of this and other illnesses. It seems like we’ve already started to do this, and we haven’t spoken a word about it there at all yet! How humbling is that?

Here’s Part II:

today, i’m feeling quite steve urkel. you know the nerdy, high-waisted jeans and glasses wearing character from the tv show Family Matters. the one with the commonly whined catchphrase, “Did I do that?”

i was in my kitchen. i turned to look at something, yeah i can’t even remember what, it was that trivial … and then there was a sound, a noise more accurately, kind of like nails on chalkboard times 100. this sound was produced by me, naturally. but i have to credit my chair too. it seems that i turned a little too closely next to my refrigerator. my beautiful, surprisingly pristine looking refrigerator.

and now, true to form, my refrigerrator door is the proud new owner of a decent sized scratch. and yet again in my best steve urkel, i am embarrassedly uttering the words, “did i do that?”

this is the risk of living with wheels, or in other words, being in a wheelchair.

as i wrote when describing my bathroom for an english paper earlier this year, “… the absence of crisp, sharp corners on my wooden vanity and towel closet. This demonstrates the fact that I am not a good or careful scooter driver.  When one consistently bumps into cabinets or cuts corners a little too close these are some tell-tale signs.”

like the bathroom, my kitchen is a room that has seen it’s share of damage. damage that i thought i would be less likely to create when i started using a power wheel chair, as opposed the the one-woman wrecking machine that was my scooter. but no matter the chair, if i’m driving it, destruction is sure to lie in my path!

well, it looks like i’m going to have to add appliance scratches to my list of tell-tale signs! and sorry dan but all i can do is smile and say, “did i do that?”

it has been almost a week since i blogged. sorry! 

i’ve been getting our Walk MS team, Team MonsterS, ready for another great walk in frankenmuth. from getting the team together, designing an Irving original t-shirt and starting to fundraise, it really has been quite a busy week.

i’ve been chosen by the society to be  a Power Partner for this year’s walk. you can read a very sweet story about me and michigan’s other power partners here http://www.nationalmssociety.org/chapters/MIG/volunteer/power-partner/index.aspx

hope you enjoy! 

jennifer

I’m feeling quite a bit humbled about Jennifer and me being featured in this week’s Monticello Express, the weekly newspaper in my hometown of Monticello, Iowa. About the only time I had my name and picture included in the Express while I was gr0wing up was when it ran photos of local sports teams, choir concerts, speech contest participants and high school play rehearsals. Even then, my name was included within the photo caption or the fine print of the story.

Today, I made the headlines: “Monticello graduate will return to host community MS discussion”

As we do each year, Jennifer and I are going back to Iowa to celebrate Easter with my family. We’re excited to spend time with our family and friends back there and to meet our new niece, but this year we are going to speak in a special presentation hosted by the Ross and Elizabeth Baty Monticello Public Library and share our story to increase awareness about Multiple Sclerosis and inspire others who are dealing and living with the challenges of this and other illnesses.

To promote our program Steven Lerch, Express editor, asked Jennifer and me some very insightful questions and chose to run the interview as a two-part Q and A in his column the weeks leading up to our presentation at 1:30 p.m. Saturday, April 11, at the Mary Lovell LeVan Renaissance Center in Monticello. Our interview, run verbatim in a two-part series in my hometown newspaper for everyone there to read about me, my wife, Jennifer, and our lives with MS … I’ll always be humbled.

Here is Part I from Steve Lerch: