Category Archives: Activism

MS advocacy on my own… or was I?

It’s not like I haven’t ever advocated at the State Capitol in Lansing, Michigan, before, but this year I was nervous.

This was the first time I went without Dan, my advocacy partner in crime. He unfortunately couldn’t get away from work to attend this year’s 12th Annual Older Michiganians Day. Sure, I had my caregiver Marcus with me and more than 1,000 older Michigan residents as well. We all met with our State Representative and Senators to get our voices heard about a variety of aging- and disability-related issues.

Going into it, I knew it was going to be just me, Jennifer. No Dan. I felt like peanut butter without jelly. Macaroni without cheese. Bert without Ernie. Abbott without Costello.

But adrenaline instantly overpowered anxiety the second I saw the State Capitol dome as Marcus and I turned the corner onto Capitol Avenue in Lansing. I realized then I was the furthest thing from alone.

This was the day I got to introduce and connect my two primary advocacy communities: Region VII Area Agency on Aging and the National Multiple Sclerosis Society.

Dan and I historically have gone to Lansing twice each year to join each community on their respective advocacy event; however, our fellow MS activists were eager to attend the May 15 OMD as MS Action Day isn’t scheduled until this fall.

Many of the OMD and NMSS legislative issues – such as the MI Choice Medicaid Waiver program and support for the Direct Care Workforce – often overlap, and when it comes to advocacy there truly is strength in numbers.

Here’s how we showed our strength on this day that empowered us all and got Dan and me that much more excited about MS Action Day this fall.

How do I not get all fan girl about Rochel Genge from Region VII Area Agency on Aging? She has been a huge advocate for me from Day One of Dan and my life together, and it was so awesome that we got to work together at this year’s OMD!
Not only did I have the opportunity to share with first-year State Senator Rick Outman the importance of the MI Choice Medicaid Waiver program, I gave him an orange tie to wear for MS Action Day this fall. I really appreciated his willingness to come out to the Capitol lawn to meet with me and his constituents.
I have advocated in Washington, D.C, with both Holly Pendell (left) and Liz Trapp from the National MS Society, but it was such a rush to be with them together and serve as MS activists on our home turf!
As always, it was great to meet with my State Representative Roger Hauck and finally introduce him to my caregiver Marcus and reiterate the importance of supporting Direct Care Workforce legislation. BTW: Dan and I already gave Rep. Hauck an orange tie for MS awareness several years ago 🙂
And how can I not get all fan girl about running into Ruth Linnemann, a close friend who helped to introduce Dan and me to advocacy and serve as our MS activist mentor for nearly 14 years? I didn’t know she was going to attend OMD, so it was an incredible surprise to see her and we had to send this photo back to Dan to say, “Hi.”
To learn more about why it’s so important for you to get your voice heard and how you can get involved as an MS activist, check out “Use your MS voice every day,” the 73rd episode of Dan and my online show, A Couple Takes on MS that is featured on the MS and Me Radio Network.

How we made a lasting impact on MS in 31 days

AMarch 2019 was a month for us to remember, and we’re charged up to make sure that you never forget it. As the nation celebrated March as MS Awareness Month, we truly went coast-to-coast to increase awareness and understanding of this chronic disease of the central nervous system. Our adventures started on March 4 and…Continue Reading

How to flex your MS muscle on Capitol Hill

Imagine waking up at four in the morning, working for nearly 12 hours and not getting paid a single cent for your efforts, but still feeling like giving more of yourself as the sun set. Welcome to our day advocating on Capitol Hill. We recently returned from our fourth National Multiple Sclerosis Society Public Policy…Continue Reading

ADA family restrooms? Be like Detroit Metro Airport

Dan and I thought we had it made in Nashville. Flying home from our recent trip, there was a family restroom at the Nashville International Airport. And it even was marked as being handicapped accessible. We quickly learned that not all family restrooms are created equal. I mean, we appreciated the efforts of the Nashville…Continue Reading

Our virtual tour for MS Awareness Month ’17

March officially is MS Awareness Month! We’ve been pushing things out online and in-person to ensure our circles of friends get all the facts, perspectives and experiences to increase their understanding of this chronic progressive disease of the central nervous system. See how we effortlessly worked that fact about MS into our written conversation with…Continue Reading

Odds and Ends

Merriam‑Webster defines “odds and ends” as, “miscellaneous articles or remnants.” This is a perfect title to capture all of the assorted bits I want to share on this chilly fall morning. First and foremost, Dan and I thank each and every one of you who shared kind thoughts and words consoling us after Cooper’s sudden…Continue Reading

Discovering power in MS advocacy

Multiple Sclerosis possesses weapons that should make Dan and me feel powerless. Striking us with extreme fatigue. Weakening our limbs with constant numbness. Robbing me of my ability to walk. Powerless. But that’s not how we’ve rolled, both literally and figuratively, in our 10 years of marriage. Dan and I have lived to redefine what…Continue Reading

MS lessons learned on unwanted anniversary

When a child turns 18, that child is an adult, right? On his or her own. That’s the deal. Independence at eighteen. November 14, 2015, marked my 18 years. Time for my freedom. That’s how it’s supposed to be. Only one small thing: Freedom is not on my horizon. Even though I’m fully willing to…Continue Reading

Monday Evening Events with Cooper

Good evening, dear readers, Forgive my twelve hour lateness, but while Mumma and Dan were away this cat sure did play. Writing just wasn’t a priority when I had the whole house to myself. Yes, I enjoy being alone at times and yes, I hate being alone. And yes, I am a cat of contradictions.…Continue Reading