{"id":11819,"date":"2014-01-09T07:21:29","date_gmt":"2014-01-09T15:21:29","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11819"},"modified":"2025-12-30T07:23:09","modified_gmt":"2025-12-30T15:23:09","slug":"swimming-upstream-rupp-family-story","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/es\/family-stories\/swimming-upstream-rupp-family-story\/","title":{"rendered":"Swimming Upstream: The Rupp Family Story"},"content":{"rendered":"
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Regina (Rupp) Thompson grew up near Nashville, TN, feeling different. Not because she was diagnosed with myotonic dystrophy (DM), but because she was the only one of seven children who wasn\u2019t. And, she was the only girl.<\/div>\n<\/div>\n
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All six of the Rupp brothers were diagnosed with DM after starting to experience symptoms in their teens. One brother\u2014a Special Olympics coach who also had a heart condition\u2014passed away in adulthood due to DM complications. Regina\u2019s father, who has also passed, had the disease as\u00a0well.<\/p>\n

\u201cMy father was diagnosed with myotonic dystrophy back in the \u201870s but it took some time for his doctors to figure it out,\u201d Regina says. \u201cHe fell down a lot and had collapsed lungs, but nobody could seem to put the pieces together because so many parts of his body were being impacted. Finally, when one of my brothers broke his hand and couldn\u2019t grip afterward, his physical therapist helped figure it out. We then were able to connect the dots.\u00bb<\/p>\n

\u201cThe disease effects each one of my brothers a little differently,\u201d Regina adds. \u201cThey all experience muscle weakness, three of them have extreme difficulty swallowing and three have cardiac problems. Almost all of them have decreased lung capacity.\u201d<\/p>\n

Despite this, the Rupps remain optimistic. After the boys were diagnosed, their father devised a course of action he thought would help the family stay strong: swimming. \u201cHis mantra was: Exercise to stay strong but don\u2019t hurt yourself, sleep well but not too much,\u201d Regina says.<\/p>\n

\u201cMy mother would take all seven of us kids swimming every day. Over the years it\u2019s become a family tradition. It was so much fun. The boys would pull mom around on the kickboard, which not only helped them build strength, but also helped them bond with one another. We would all feel good about it, which explains why we all still go swimming together as often as possible,\u201d Regina explains. \u201cIt\u2019s not only physical therapy, it\u2019s mental therapy. The pool is a place for us to be social. If we\u2019re having a bad day, we\u2019ll say, \u2018Let\u2019s go for a swim!\u2019 We\u2019ve been doing it for 50-plus years!\u201d<\/p>\n

Despite physical weaknesses, Regina is thankful her brothers don\u2019t suffer from cognitive developmental weaknesses. \u201cThey\u2019re quite independent in their ability to make healthy eating choices, and they really support and take care of each other,\u201d she says. \u201cThey compensate for one another. In my eyes, they\u2019re very successful. They\u2019ve all done very well for themselves in terms of self-reliance.\u201d<\/p>\n

\u201cPeople speculate all the time about how difficult it must have been for me,\u201d Regina continues. \u201cBut it\u2019s never been hard. I\u2019m the unaffected person and I reap great benefits from them. I can\u2019t really understand how hard they work. They get up and eat their breakfast, despite the fact that their muscles hurt and they can\u2019t swallow. Everything they do, from tying their shoes to swimming, is work\u2014it\u2019s a daily struggle. I never understood this growing up because my brothers never complained. They\u2019re gracious, happy, thankful. They never whine. They\u2019re such good, solid strong guys and so much fun to be around.\u00bb<\/p>\n

\u201cTo me, that\u2019s just how we are as a family,\u201d Regina continues. \u201cIt was perfectly normal that we\u2019d stick together and take care of each other. I always wanted to take care of my brothers as best I could. What I\u2019ve learned at the Myotonic Annual Conferences\u00a0and through other resources helps me take care of them. We\u2019ve all been dealt things we have to live with but your perspective really can make all the difference.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11820,"template":"","class_list":["post-11819","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories\/11819","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\/11820"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media?parent=11819"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}