Connect
TERESA: What brought you to Mayo Clinic Connect?
@walkinggirl: I found Mayo Clinic Connect by accident well over a year after a septal myectomy at Mayo Clinic. Looking back, it would have been helpful to know about this patient community around the time of my referral in February 2022. I had been living with diagnosed hypertrophic cardiomyopathy (HCM) for several years without any impact on my life. Until that fateful February, I was uninterested in knowing more than the general details of the condition.
TERESA: What motivates you to take part in Mayo Clinic Connect?
@walkinggirl: New members to the forum are often confused, anxious, scared, trying to make sense of their diagnoses, and looking for direction on their next steps, just as I was. Helping people by referring them to sources of information, sharing experiences, offering encouragement and suggesting practical hints that may help them feel like they are in more control and that they are not alone.
TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?
@walkinggirl: Our discussions about so many aspects of HCM on a relatively anonymous forum is a safe way to connect with other big-hearted people. I can identify with what others are experiencing even though each of our experiences is unique.
TERESA: What support groups do you participate in?
@walkinggirl: I participate in the Hypertrophic Cardiomyopathy (HCM) and Visiting Mayo Clinic support groups. I like to share aspects about visiting Mayo Clinic in Rochester, insurance and travel to Rochester.
In addition, I am a member of the Hypertrophic Cardiomyopathy Association where I am a Face of HCM.
TERESA: Tell us about a meaningful moment you've experienced on Mayo Clinic Connect.
@walkinggirl: I had a meaningful moment when I realized that the care plan is unique for each of us. That made me feel I was being treated as an individual. I also learned that each of us have HCM, yet each step is experienced differently. Some Mayo Clinic Connect members found certain steps along the way easier than I did and vice versa.
Many thanks to Mentor Debra @karukgirl for her valuable input and for being a great role model!
TERESA: What surprised you the most about Mayo Clinic Connect?
@walkinggirl: The most surprising realization was that even though my fellow big-hearted HCM members share the same diagnoses, treatments, surgery, and recovery are so different for each of us.
TERESA: What energizes you, or how do you find balance in your life?
@walkinggirl: Achieving a balance between social times and quiet, alone times are both essential in my life. Realizing this helps me strive to maintain it.
TERESA: Tell us about your favorite pastime or activity.
@walkinggirl: I have many pastimes and activities, so choosing a single favorite is impossible! I am a Volkswalker and have completed my goal of walking in all 50 states and all 51 capital cities ten years ago. I volunteer, like to be with family (husband, son, daughter-in-law and grandson), play Mah Jongg, travel, love photography (have won photo contests), garden, geocache, cook healthy meals, bike, paddle, garden, read, do counted cross stitch, genealogy, listen to music (I used to play piano quite well), and solve puzzles.
TERESA: Do you have a favorite quote, life motto or personal mantra?
- Be kind.
- Do it now, crystal balls are unreliable.
- The glass is half full rather than half empty.
TERESA: What do you appreciate the most in your friends?
@walkinggirl: I have several groups of friends, surprisingly with few overlaps. I appreciate that we like to listen to and talk about almost everything!
TERESA: What food can you not resist?
@walkinggirl: Soft chocolate ice cream!
TERESA: If Hollywood made a movie about your life, who would you like to see cast as you?
@walkinggirl: An actress with red hair and brown eyes. Kate Mara who has curly red hair as I did before I reached that certain age! Julia Roberts sometimes dyes her hair red.
TERESA: What do you love about where you live or vacation?
@walkinggirl: We live just north of Saratoga Springs, NY, a beautiful small city with historical and cultural significance. There are many parks nearby where we enjoy the outdoors.
TERESA: Puppies or kittens?
@walkinggirl: We have no pets, but I like puppies.
Member Spotlights feature interviews with fellow Mayo Clinic Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.
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Very inspirational! You have so many hobbies, it encourages me to pick up a few more. Glad Connect has been a good place for you and you've been able to help new fellow members.
My mom is from outside Buffalo, NY, in Snyder, but I live across the country and have never heard of Saratoga Springs. I looked up some images, and it really looks beautiful.
My searching didn't turn up anything concrete. What is a Volkswalker?
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5 ReactionsHello @walkinggirl
It was a special privilege for me to interview you for this Connect Spotlight. I appreciate your willingness to answer the questions so thoughtfully. You have taken your experience with HCM and have become an advocate for yourself and others! I'm so glad that you are part of Mayo Clinic Connect. You have undoubtedly helped so many and have become a member with a "big heart" to give to others!
PS I'd also like to know more about "Volkswalker."
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6 Reactions@walkinggirl,
Thank you for sharing a little bit about you so others can learn more about what makes you, you!
You've been a tremendous asset to the HCM group and I always look forward to reading the sage advice you give to others.
Your willingness to continue to reach out and help others who may just be starting their journey in this weird disease is admirable. And you do it with kindness and understanding, using your own experience to let others know they are not alone.
That's the beautiful thing about Mayo Clinic Connect.
It's a place to come for information, support, virtual hand-holding and you learn you are not alone. Connect brings people together in a warm and safe place to share their fears, ask questions, offer (non-medical!) advice.
Thank you for sharing and thank you @hopeful33250 for the opportunity to get to know a rock solid member!
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9 Reactions@walkinggirl I really appreciated the reference to Volkssports. My husband and I used to be hugely active in that. I founded a club in central Minnesota; my husband was president of our state association; I was secretary. All of our travel and exercise revolved around Volkssport events. I had the same goals as you of walking the 50 states and capitals but never completed it. We started doing just 5 K’s instead of 10 K’s but I’m not sure I could even do that now. We have fallen away from it starting when I had a pancreas transplant 20 years ago. You have inspired me to try to get going again and at least start by getting in the habit of taking a walk around my neighborhood. Walking is great!
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6 ReactionsOh, I hope you do get back into Fun, Fitness and Friendship, Cheryl - CEHunt57! Wow! You were the Minnesota shakers and movers for sure. While I was at Mayo in Rochester a couple of days before septal myectomy surgery, we were looking to do a Volkswalk between appointments - we had time for that one day - I was doing very slow 5Ks at the time. I usually did a 10K before I reached the crisis stage and have been back to 10K within a few months after. Perhaps you can slowly work up to it. So glad you had a successful pancreas transplant! Wonders of medicine!
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3 Reactions@hopeful33250 Please look at http://www.ava.org for information! I do not know where you live, I hope you would be able to find a club near you. We are all about Fun, Fitness and Friendship!
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2 Reactions@lisalucier Please look at http://www.ava.org for information! I do not know where you live, I hope you would be able to find a club near you. We are all about Fun, Fitness and Friendship!
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4 Reactions@walkinggirl I am so interested in your participation in volkswalking. We got in to the sport big time when we lived in Germany! There, it was referred to as volksmarche. Each small town would take a turn and set up a route through town, and the vineyards and orchards. Everyone participated and had a great time. The kids would earn a medal, usually for a 5k walk. I still have the medals my sons earned!
What a wonderful memory that your write-up brought back. Thank you!
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1 Reaction@walkinggirl
I admire your energy and attitude. Bottle those two things and you can make a fortune though I suspect making a fortune is not high on your list.
Your glass half full/half empty comment reminds me of a time in an Amsterdam bar with a friend wherein we riffed for a long time on different perspectives on the glass and water. We came up with an "ist" list.
The Capitalist: We need to monetize the water and the glass
The Communist: Glass and water belong to state (spoken in a deep Slavic accent)
The Socialist: Water for everyone
The Misogynist: I hate the girly water
The Buddhist: Maybe the water is and maybe it isn't.
The Technologist: Actually, it is not glass but a high-density polymer
The Environmentalist: The water is probably polluted
The Hedonist: The water kind of turns me on.
The Activist: No more water! No more water!
The apologist: I am so sorry about the glass and the water.
And so on.
Grand plans for a poster which could have made us a fortune never came to pass. I guess that making a fortune was not high on our list either.
Best always,
s!