San Francisco Mucker, Tina, shares with us a small glimpse into her sister’s life after living with MS for almost five decades. Her experience provides a long-term perspective on how MS affected one person, her family, and her friends.
My sister Bernadette lived with Multiple Sclerosis for close to 50 years. My sister passed away in 2014 at the age of 69 years. Participating in MuckFest® MS 2016 is something that would have brought her a big smile and many laughs.
The impact of MS was most tangible in terms of mobility and freedom. During my sister’s life, the effects of MS changed a lot from its earliest expression as intermittent stumbles and falls. Through the years she experienced the gradual diminished use of her legs resulting in the need for a cane, then crutches, and ultimately an electric wheelchair. The impact of MS was hardest in terms of interacting in a world not particularly friendly to a wheelchair. One area of great happiness for my sister was world travel and cruises. Until the symptoms of MS became too severe, she enjoyed many years working as a travel agent. Her core support group through the years were women who became close friends from sharing travel – they call themselves the “Cruise Girls.”
If you want to stay engaged in the world, there are all manner of things you just have to have in place. It’s easy to not notice the independence of walking, driving a car, hopping in a cab, or taking a bus/train/plane …freedoms we often take for granted. In the latter years of living with MS, mobility and freedom was enjoyed by my sister through the use of a very nice electric wheelchair and a wheelchair van. These two things enabled her to go out shopping, get to appointments, have lunch with friends, and catch a movie or concert. When she could no longer drive, a driver was needed. She was blessed with wonderful friends, family, and a wonderful husband who made sure her needs were met.
My sister lived in a lovely suburban neighborhood in a good sized Midwestern city. Her neighborhood did not have sidewalks. Therefore, in order to just go out for a “roll” on a lovely day, she had to enter the street. Approximately 1/2 mile from her home was a lovely park with a free art museum and nice café. It’s a place that people enjoyed very much. I remember trying to go there one day with my sister – it was sooo close! After navigating the traffic on the street, we came to the sidewalks with no curb cuts for access. What was an easy 15-minute stroll for me was a 45-minute dangerous obstacle course for my sister. I didn’t think about those difficulties she experienced every day until I walked along with my sister that day.
My sister also addressed ways to remain independent in her home. The 1970s ranch-style home had to have many modifications. These included, entry ramps, wider doorways, and a no-threshold shower. She had shop hoists and ceiling tracks installed so she could self-transition from her wheelchair to sit in the family room in a lounge chair, to get in and out of bed, and to use the restroom. It was important to her to make these physical modifications in order to support her sense of dignity and independence.
When I would visit from California, I tried to think up gizmos and ways to make things a bit easier for her. As the fine motor control in her fingers diminished, she had difficulty holding objects. She really enjoyed popsicles – but could no longer hold one. And, it isn’t a popsicle if you eat it with a spoon! I made her a popsicle holder with some foam and a wooden clothespin. It made her laugh and it worked! She had safety bars in her bathroom, but could no longer get a good grip. So, I went to a bicycle shop and got some high-quality handlebar tape. It cost $14 and she was really concerned about using such an expensive tape, but I didn’t care. And after 5 years, that tape was still going strong and providing a safe non-slip grip! My sister began suffering from leg cramping and spasms. They started using some silver duct tape to help keep her foot in place on the wheel chair pad. On one visit to see her, I noticed she had upgraded to leopard print duct tape! It reminded her of the animals she saw on her trip to Kenya.
There were many challenges and difficulties associated with MS for my sister, our family, and friends. It was not easy. But it was an experience that showed all of us how many things really can be done that do make life a wee bit easier and fun.
Despite the barriers for being out in the world, my sister militantly refused to see herself as disabled, handicapped, or sick. Through the years she experienced many additional health and medical challenges including breast cancer and severe asthma. Yet, she absolutely refused to be emotionally and physically knocked down. And this inner strength was part of the bond she shared with others around her who also had challenges and difficulties. My sister was generous and she often gave her time and energy to help others. She consistently gave to several groups that helped children without families and animal rescue organizations. I remember years ago when I was in a very difficult time and my sister said, “Just go out and help someone else.” My sister possessed a strong positive attitude in the face of being dealt many challenges.
Bernadette’s primary support group through the years included the steadfast and consistent relationships of family – her husband, along with our father, mother, and brother. Her network of friendships was drawn from friends from high school, college, work, and travel. Her core group of friends made a concerted effort to come together at her home to just enjoy each other’s company. This type of social time helps so much to prevent isolation that can result from living with MS.
My sister also enjoyed the consistent help of a housekeeper/driver who was a true friend. Plus, she enjoyed the affection of the next door family with 2 young girls who grew up with Bernadette. Since my sister had no children, this bond was very important to her and gave her much joy.
I did not know anything about MuckFest MS until my best friend Dianna invited me to do it with her this year. As soon as I saw what it was, I was “all in.” I am happy to be raising funds for MS research. Plus, I get to bond and identify with the MS community that understands so much of my story. And who can say no to a chance to slog through some mud and laugh in honor of their sister?
Just because your kids aren’t old enough to run the course doesn’t mean they can’t join in on the fun. In our free Lil’ Muckers area, kids can play in the mud, too!
With MuckFest® MS San Francisco coming up next weekend, we had our mascot, Puck the Muck Duck, put together a list of his favorite places to play when he’s not rolling around in the mud in the Bay Area!
Let yourself be a tourist for the day and check out San Francisco’s most crooked landmark.
Lombard Street is known as one of the most crooked streets in the world and also one of the must-see streets in the area. This winding one-block road will take you down eight sharp turns as you make your way from top to bottom. If you’re up for some pre-muck exercise, you can take the trek from bottom to top, but don’t expect Puck to join you. He’ll fly from overhead and cheer you on.
After a long day in the mud enjoy a hot meal in Chinatown.
You can guarantee you won’t get bored discovering all that San Francisco’s Chinatown has to offer. We know Puck doesn’t! And with it being the oldest and largest Chinatown in North America you can turn a trip here into a day of sampling delicious food.
You might recognize this iconic spot from the opening credits of a popular 80’s TV show.
This long strip of beautiful Victorian houses is painted with bright colors and known as the Painted Ladies. Not only have they been featured in numerous different media, they are best known for being featured in the opening credits for the popular show Full House. So take a drive in Alamo Square and take in the scene. You might even find Puck trying to find an orange one!
Check out the most vibrant view in the Bay Area.
The first thing many Muckers think of when someone says San Francisco is the Golden Gate Bridge! And rightfully so, this 4,200-foot-long bridge is an iconic part of the Bay Area and one of Puck’s favorite aerial views. No matter which side of the bridge you’re on, the scenic view is breathtaking and might even be better than the view from the top of Crash Landing! If you have an hour, Puck recommends taking a stroll across the bridge for a MuckFest MS warm up!
Thought you saw some nutty stuff at MuckFest MS? Head over to Fisherman’s Wharf.
While the Wharf is a big tourist stop, there is no better way to keep your team laughing than by sitting out by Pier 39 to watch the sea lions. These playful and sometimes noisy sunbathers lay out on the pier in groups and provide endless entertainment for onlookers. For Puck, these guys are his favorite partners in crime for drying out his wings after a nice dip in the bay.
At MuckFest® MS, we pride ourselves on having unbelievable amounts of muck. That means there are more opportunities to get muddy than you could ever imagine. And with great mud comes great responsibility…to get your teammates covered from head to toe! Here are seven of the best places at MuckFest MS to accomplish this goal.
- Mucking Corral
The MuckFest MS starting line might just be the muddiest of them all! Our Mud Master will get you and your team covered in mud before you even get on the course. With pre-run games that involve giving strangers muddy hugs and diving into mud puddles, you can guarantee that the Mucking Corral is just the start to your mud filled day.
- Triple Pits
Make your way up and down our large mounds of mud. With each one even bigger than the last, you are sure to get covered in mud while climbing over these hills. Can’t make it over one? Look for a helping hand or just relax in one of the muddy pools in between your mountain treks.
- Big Balls
If you thought you’d get a break from the mud, you’d be wrong. Right after Triple Pits, you’ll encounter Big Balls. These nine swinging balls are likely to get you slipping and sliding in the mud until you get to the other side. But watch out, if you’re not careful they will most certainly knock you right into our pits of muck.
- Skid Mark
We like to make sure you get covered in mud from head to toe, so that means we have to have obstacles that get the job done from all angles. Skid Mark will get you on your back to pull yourself through a trench of muck and you won’t come up very clean.
- Belly Crawl
Don’t worry, we didn’t forget about your front side! As soon as you finish Skid Mark, you and your team will be crawling on all fours through a tunnel of muck because let’s face it, mo’ mud, mo’ fun.
- Finish line
It’s your team’s last stop on your journey through the muck, which means it’s your last chance to make sure you’re extra muddy for your finish line photos. So, don’t waste the opportunity to make sure you are your muckiest.
- MuckFestival, Refreshed by Traveler Beer
You finished the race, you showered off, and now it’s time for a refreshing Traveler beer! But wait, while you’re walking to the festival the thought of waiting another year to play in the mud makes you overcome with sadness… That means it’s the perfect time to find a fist full of muck and treat a teammate to one last mud mask!
You came, you conquered, and now you have to wait until next year to take on the mud and muck again. So, get your team and pile into the car and head home for that long hot shower you deserve. P.S. You might need more than one until you’re completely clean. Hey, we said playing in the mud was fun, not easy to get off every inch of your body.
Hang on tight! Flying Muckers will zip you across a lake of mucky water. Hey, if Tarzan can do it, so can you!
Mucker Molly Kramer is excited to take on MuckFest® MS Chicago this month! For Molly and her team, Molly’s Muckers, this will be their second year mucking it up in the Windy City. We had the opportunity to talk with Molly and she shared her story about how she got involved in playing in the mud for a cause.
Often referred to by Chapter members as a fundraising guru, Molly only started mucking it up for MS last year. When she was diagnosed with MS two years ago she decided the best way to cope was to stay positive.
A year after her diagnosis, Molly’s sister mentioned MuckFest MS to her. After looking into it, Molly thought it looked like a good time and decided to sign up. Once the emails started coming in, Molly realized that teams could fundraise to win prizes and raise money for the MS Society so she made it her mission to start building a large team.
Molly started sharing her fundraising page on Facebook and before she knew it tons of friends and family members started signing up to join her in the mud or sent a donation to help the cause. Soon, Molly had grown Molly’s Muckers to about 55 members and all of her teammates were excited to come out and support her.
Together, Molly’s Muckers raised over $9,000 for MuckFest MS Chicago in 2015. This year, Molly’s Muckers are back again and Molly is excited to get her friends and family together to have a great time. Molly says, “MuckFest MS gives me something to look forward to and it’s a great feeling knowing people are thinking of you and are willing to help you raise money for a cure. They are fighting for me.”
Besides raising money for a cure, Molly thinks MuckFest MS is a great bonding experience. No one on her team had ever done MuckFest MS before last year. That experience of doing it together for the first time allowed them to have something to talk about months later and she sees her whole team reminiscing about this year’s MuckFest MS down the road.
And it’s no wonder why she wouldn’t reminisce about it for months because last year Molly met some awesome new friends at the event. It’s no surprise that MuckFest MS is a great way to meet others in the MS community. And that’s exactly what Molly did. “Everyone there [MuckFest MS] is so positive. It helped me keep my mind focused on the good things in life and it’s something I look forward to now.”
And Molly looks forward to all aspects of MuckFest MS. From fundraising for a good cause to taking on the obstacles. She describes the whole event as, “Fun, muddy, and entertaining and something that you won’t regret doing.” Molly even stated there isn’t a single thing she would change about MuckFest MS; she loves it just the way it is. She also loves seeing the great outcome of how fundraising benefits people’s life who are living with MS. It gives her a rewarding feeling knowing that she’s helping find a cure for the MS community and providing support to those who may be experiencing an emotional time in their life just like she did when she was diagnosed.
So, if you’re joining us in the Windy City for MuckFest MS on September 10th look out for Molly’s Muckers. You might even find Molly in the mucking corral at the starting line playing in the mud with her team. Or out on the course getting into her MudZone while getting into some muddy shenanigans. No matter where you might see her, you can guarantee that she’ll be enjoying the excitement of the day and getting that warm feeling in her heart while watching everyone running and out supporting the cause.
Welcome to the MuckFestival, Refreshed by Traveler Beer!
Our Muckers showcase their team spirit by rocking crazy outfits and team shirts when they take the course!
Minneapolis-based blogger, Jill, took on MuckFest® MS Twin Cities on August 20th despite a rainy start to the morning. Jill documented her time in the mud on her blog, Run Eat Snap, and ended her review with the assertion that “it was a great time, a great race, and I am very happy I went!”
We’re happy you joined us in the mud for the day too! Check out Jill’s experience here!
Did Jill’s review get you ready to play in the mud? There’s still time to get mucky in Chicago, San Francisco, Houston, Dallas, and Los Angeles. Sign up today for MuckFest MS, the fun mud run with the best obstacles that benefits the National MS Society!