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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