{"id":11739,"date":"2015-08-10T04:52:24","date_gmt":"2015-08-10T11:52:24","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11739"},"modified":"2025-12-30T04:53:59","modified_gmt":"2025-12-30T12:53:59","slug":"karl-carolyn-valek","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/es\/family-stories\/karl-carolyn-valek\/","title":{"rendered":"Karl & Carolyn Valek"},"content":{"rendered":"
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Taking DM Patient Advocacy to the Next Level<\/h2>\n<\/div>\n
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When Karl Valek tested positive for myotonic dystrophy (DM) in 2006, the diagnosis was not a complete surprise. Karl and his wife, Carolyn, who live near Columbus, Ohio, knew that both of Karl\u2019s younger sisters had recently been diagnosed with DM after years of declining health. Karl, at age 42, was experiencing symptoms, including worsening of a\u00a0general fatigue that had begun in his twenties.\u00a0He\u00a0tired quickly during the day and would even fall asleep while driving. A career geologist, Karl transitioned to less demanding, part-time work.<\/p>\n

Karl and Carolyn struggled with the diagnosis. \u201cWe told ourselves that the disease wouldn’t be as progressive as it had been in his sisters,\u201d recalls Carolyn. \u201cWe had to work through our feelings of denial, anger, sadness, and frustration –\u00a0all the things you go through when you’re grieving. We’ve come to understand that in a long-term chronic disease, you grieve each loss of normalcy.\u201d<\/p>\n

It has been nearly a decade since Karl tested positive for DM. With the help of a leg brace and ankle-and-foot orthotic he is still walking, but Karl now has what he calls a \u201claundry list\u201d of symptoms treated by an army of doctors. In addition to excessive daytime sleepiness, he experiences respiratory weakness, swallowing problems, gastrointestinal ailments, cardiac conditions, hypothyroidism, and other endocrine issues.<\/p>\n

As Karl\u2019s symptoms progressed, Carolyn stepped in as his full-time medical case manager and advocate. In 2012, she retired early from her job as a communications specialist for a large company and went back to graduate school where she earned a certificate in patient advocacy.<\/p>\n

\u201cI learned to navigate the medical system – to help with his medication and his insurance and to be sure that he had all the right coverage,\u201d Carolyn recalls.<\/p>\n

\u201cShe knew to ask the doctors the right questions,\u201d Karl adds.<\/p>\n

Finding a Medical Home<\/h2>\n

After Karl was diagnosed, Carolyn sought out information on the Myotonic\u00a0website. \u201cAll those resources were helpful,\u201d she says, \u201cespecially the ones on\u00a0occupational therapy<\/a>\u00a0and\u00a0anesthetic risks<\/a>. And I found the\u00a0health supervision checklists<\/a>\u00a0very effective.\u201d Carolyn created a binder with a section on each of Karl\u2019s body systems affected by DM. She took notes, asked questions, and secured a printed summary of each doctor\u2019s visit to include in the binder.<\/p>\n

One big effort she undertook was to create a central medical home where all of Karl\u2019s needs could be met. Now, his nine doctors and therapists are associated with the Ohio State Wexner Medical Center in Columbus –\u00a0and all are familiar with DM and its complications. (Learn more<\/a>\u00a0about the importance of having a central medical team.)<\/p>\n

Carolyn\u2019s knowledge and experience came in handy a few years back, when the Valeks’ son Scott, now 19, was also diagnosed with DM. During his school years, Scott had been diagnosed with ADHD and autism spectrum disorder. He was a budding actor in school, but Carolyn began to notice that increasing weakness in his facial muscles was making it harder and harder to understand what he was saying. Then Scott began to experience excessive sleepiness and reduced stamina.<\/p>\n

\u201cAs Scott\u2019s executive functioning declined and the diagnosis was confirmed, I was immediately able to get him connected with the right people and to get a good baseline so we could see how the disease was progressing,\u201d says Carolyn. Today Scott and Karl go to many of the same doctors. Carolyn believes that her experience with Karl made it much easier for her to help her son.<\/p>\n

The goal of Carolyn\u2019s work as a patient advocate is to slow down the progression of the disease as much as possible by knowing enough to get the right medications and treatments to extend and improve quality of life. \u201cFor Karl the goal is to stay out of a nursing home. My goal is to support that vision for him,\u201d she says. She points to new medications and a cardiac pacemaker that are making Karl\u2019s life easier. And she and Karl agree that the last few years have been pretty good ones. Karl hasn’t had pneumonia, nor has he taken a serious fall, both of which he suffered in the past.<\/p>\n

The couple also sees social improvements. Carolyn encouraged Karl to join the local senior center, where he joins friends for a weekly current events discussion and then a group lunch. \u201cThe person with DM can still find joy and interesting things to do,\u201d Carolyn says. \u201cYou just have to encourage them to get out of their comfort zone and do things with other people. Socialization is so important. We arrange frequent visits with family and friends, which Karl really enjoys.\u201d<\/p>\n

A Mediterranean Cruise<\/h2>\n
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One big treat for the Valeks came in the form of a Mediterranean vacation in 2011. Karl has always loved to travel. In talking with other families living with chronic illness, Carolyn hit upon the idea of a cruise. Cruise ships employ onboard doctors and a cabin with a balcony would provide a place for Karl to rest each day and gaze out to sea in comfort. Karl was even able to join the family on a tour of Venice, with Carolyn maneuvering him from a wheelchair into a vaporetto water taxi.<\/p>\n

While Karl doesn\u2019t usually use a wheelchair, it does help him conserve energy while traveling, Carolyn says. \u201cIt often takes a village of family members and caregivers to support the DM-affected person when they travel –\u00a0but that person does not need to feel helpless. When we flew to Europe, Karl helped out at the airport by rolling an upright suitcase on wheels with each hand as I pushed him in the wheelchair.\u201d<\/p>\n

\u201cSome of these things are still possible,\u201d Carolyn says. \u201cYou just have to be patient.\u201d<\/p>\n

\u201cIt helps to approach travel with a sense of humor,\u201d Karl adds. \u201cAnd you need to do it while you still can.\u201d<\/p>\n

Sharing What They\u2019ve Learned<\/h2>\n
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Having found the Myotonic website so helpful in her own quest to understand DM, Carolyn offered to become a warm-line volunteer for Myotonic. She talks to family members, answers their questions, and points them to resources. She and Karl founded Myotonic\u2019s\u00a0Ohio Support Group<\/a>. \u201cMaybe it\u2019s a mother or grandmother,\u201d Carolyn says. \u201cThey want to talk to another family dealing with this disease –\u00a0someone who understands myotonic dystrophy.\u201d Carolyn also participates in Myotonic’s\u00a0webinars<\/a>\u00a0and the monthly\u00a0Myotonic Virtual Caregivers Support Group<\/a>,\u00a0and she has contributed recipes to \u201cMyotonic Cooks<\/a>,\u201d a cookbook created to share community-generated recipes that are both satisfying and easily swallowed.<\/p>\n

As part of her certificate program in patient advocacy, Carolyn conducted an online survey of DM-affected individuals, caregivers, families, and friends, with questions focused on the challenge of health care management. She organized and analyzed her survey responses into a presentation called\u00a0\u201cAdvocating in the Clinic: Educating and Supporting Your Doctors,\u201d which she presented at the\u00a02014 Myotonic Annual Conference<\/a>\u00a0in Washington, DC.<\/p>\n

Carolyn and Karl also have been active in legislative outreach, joining TeamMyotonic in Washington, DC, to advocate for increased federal funding for DM research. \u201cYou feel you are helping yourself when you do the legislative advocacy,\u201d Karl says. \u201cWe might not find a cure in time to help me, but we might help my kids.\u201d<\/p>\n

\u201cIf we\u2019ve made a difference in someone else’s life by volunteering, that is its own reward,\u201d Carolyn adds. \u201cWhen Karl’s was diagnosed –\u00a0that was a very difficult time. But you can’t stay there. If you stay, you’re stuck. There are a lot of lessons that come out of dealing with this disease –\u00a0and they\u2019re not all negative. Karl and I have never been closer. And if we can share the blessings we have experienced, we can give other people hope for how they can get more out of life day by day.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11740,"template":"","class_list":["post-11739","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories\/11739","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media\/11740"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media?parent=11739"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}