{"id":11723,"date":"2015-10-03T04:40:55","date_gmt":"2015-10-03T11:40:55","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11723"},"modified":"2025-12-30T04:42:18","modified_gmt":"2025-12-30T12:42:18","slug":"childress-family-coping-through-teamwork","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/childress-family-coping-through-teamwork\/","title":{"rendered":"The Childress Family: Coping Through Teamwork"},"content":{"rendered":"
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When Mary Childress was in her thirties, she\u2019d wake up in the morning with her hand clutched in a very tight fist. \u201cI\u2019d have to use my other hand to pry my fingers open, and it was painful to do it,\u201d she recalls 30 years later. \u201cI never mentioned it to my doctor. I just thought it was just some kind of strange quirk I had.\u201d<\/div>\n<\/div>\n
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In her forties, Mary became unable to lift her head when she was lying flat, a condition that she and her husband, Ed, attributed to her chronic bad back. Then she began tripping when climbing the narrow staircase in a friend\u2019s home. Ed began to get very concerned. \u201cIs it normal to fall going up the stairs?\u201d he asked.<\/p>\n

Finally, in her mid-fifties, Mary shared this constellation of symptoms with her primary care doctor, who sent her to the neurologist Mary still sees today. When an EMG test of Mary\u2019s muscles produced the characteristic sound associated with myotonic dystrophy (DM), the neurologist pronounced herself 99 percent sure they\u2019d identified the cause of Mary\u2019s pain, weakness, and stumbling. \u201cI want do a blood test to be sure,\u201d the doctor told her.<\/p>\n

DM in the Family<\/h2>\n

Mary and Ed Childress are a team. They met at 14, married at 19, and have been deeply dependent on one another since. Ed worked in defense systems for the federal government for years, and Mary worked in billing in a doctor\u2019s office. The couple, who are now retired and live in Chesapeake, Virginia, have two daughters\u2014Tawnya, 43, and Amy, 41\u2014and five grandchildren.<\/p>\n

It was her grandchildren\u2014particularly a set of twins who had just been born\u2014that were foremost in Mary\u2019s mind in 2005 as she waited apprehensively for the result of her blood test for DM. In those weeks, Mary had searched the Internet for information about this genetic condition. She had learned that there were two types of the disease, and that babies could experience serious symptoms from a congenital variety of DM1.<\/p>\n

\u201cI\u2019d been sitting on pins and needles,\u201d Mary recalls. So when the doctor\u2019s office called her at work, she demanded to be given the results over the phone. \u201cYes, you have it,\u201d the neurologist said. \u201cBut doctor said I had type 2,\u201d Mary said, \u201cso then I knew the babies were ok.\u201d<\/p>\n

Looking back, Mary and Ed now understand that DM had probably been affecting Mary\u2019s family for generations. They\u2019re pretty sure Mary\u2019s father had it\u2014he died at 53 after years of back and leg pain, stumbling on stairs, difficulty getting out of chairs and other symptoms Mary would later experience herself. \u201cEvery surgery he came out weaker,\u201d Mary says. And after Mary was diagnosed, a neurologist told her older brother that he too had DM. He has since died.<\/p>\n

A few years ago, Mary\u2019s older daughter, Tawnya, a fit, competitive runner, began experiencing sudden cardiac arrest. When she went to the Mayo Clinic in Minnesota to have surgery for the condition, she also tested positive for DM2.<\/p>\n

\u201cSo my father and my brother had it, and now my daughter has it,\u201d Mary says. \u201cI\u2019m hoping my other daughter doesn’t have it and that none of the grandkids have it.\u201d<\/p>\n

Being Your Own Advocate<\/h2>\n

Mary\u2019s initial response to her 2005 DM diagnosis was to try and fight the disease. \u201cI\u2019m not going to have muscle weakness,\u201d she told herself. \u201cI\u2019m going to beat it.\u201d She launched into a physical therapy program, but in retrospect, she says, \u201cI think I knew then that I was pushing myself way too hard.\u201d By then end of 2007, Mary\u2019s doctor was telling her to ease up and to leave work\u2014that it was just too much stress. \u201cAfter she left, it took six to eight months for her to get caught up on her rest,\u201d Ed recalls.<\/p>\n

\u201cEd says I\u2019m hard-headed, because when I can’t do something it becomes a challenge \u2013 I\u2019ve got to figure out how to do it,\u201d Mary says. Her primary care doctor has told her, \u201cwith your disease, I think that\u2019s probably an asset.\u201d Like other DM patients, Mary sees a lot of doctors. In addition to her primary care physician and her neurologist, she sees a cardiologist who monitors the loop recorder that constantly tracks the activity of her heart, and a gastroenterologist for her GI symptoms. While she can’t say enough good things about all of her doctors, she and Ed have had to educate most of them about her condition, which is so rare that most physicians don\u2019t encounter it.<\/p>\n

Which is why Mary\u2019s cardiologist makes a special request of Ed whenever the couple goes to a Myotonic Annual Conference. \u201cI want you to get your hands on anything you can bring me pertaining to DM.\u201d<\/p>\n

Even the genetic counselors who counseled the family after Mary\u2019s diagnosis had no idea what myotonic dystrophy was, Ed says. \u201cThey had stuff they\u2019d printed off the Internet. I think Mary informed them of a lot of things they didn’t know about.\u201d And when Mary suffered a small stroke in 2014, none of the ER doctors had any experience with DM. \u201cIt was kind of scary,\u201d Mary remembers. \u201cI was trying to explain DM to the doctors. Of course I was weak, but from DM, not necessarily from the stroke. You have to be your own advocate.\u201d<\/p>\n

Mailing Cataracts to England<\/h2>\n

In 2008, Mary had the opportunity to contribute to DM research after learning that she had cataracts in both eyes, a condition that can occur much earlier in life for people with DM. DM cataracts have a characteristic look, sometimes described as similar to Christmas tree lights. In her internet research Mary had run across a request from Dr. Jeremy Rhodes at the University of East Anglia, Norwich, who was looking for DM cataracts to study. \u201cI would love to get your cataracts,\u201d Rhodes told her. But what he really wanted, if there was a way Mary could arrange it, was to also get photos of the cataracts before they were removed.<\/p>\n

Before long, Mary found herself in front of a machine at the Lion\u2019s Eye Bank at the Eastern Virginia Medical School surrounded by doctors and students looking at the rare DM cataracts in her eyes. They sent the photos off to Dr. Rhodes and after the surgery, they gave the cataracts to Ed, who mailed them off to England. It was the first time the researcher was able to examine DM cataracts before and after removal.<\/p>\n

A few years later, Mary and Ed encountered Dr. Rhodes at an Myotonic Annual Conference in Florida. Mary walked up to him and pointed to her nametag. \u201cDo you recognize this name?\u201d she asked. \u201cWhy Mary,\u201d he responded. \u201cI\u2019ve been projecting your eyes on a screen here all week.\u201d<\/p>\n

Handy Around the House<\/h2>\n

Mary is slowing down these days. She gets more tired in the daytime, and little things can be harder to do. But Ed is a big help. \u201cI couldn’t do it without him,\u201d she says.<\/p>\n

A long-time hobby woodworker and always handy around the house, Ed has modified their home in ways that are very helpful to Mary while not being obvious to visitors. He\u2019s installed extra handrails on some staircases and small pull handles on some doorframes (to help with that last step, after the handrail ends), and he has built portable half-steps that can be added to a staircase when Mary is too weak to negotiate full-height steps. And he\u2019s become adept at boosting Mary out of chairs so elegantly that most people don’t even notice he\u2019s doing it.<\/p>\n

But Ed\u2019s most popular helping device are the \u201cpinchers\u201d he builds for Mary\u2014and for other people who learn about them and decide they need a set. Similar to the grabbers sold in medical supply store, Ed\u2019s pinchers are made from wood with rubber grippers and of different lengths depending on their intended use. He\u2019s made perhaps 60 or 70 of them so far. Mary uses them to weed the garden and for dozens of other uses. \u201cI can\u2019t bend over anymore, but I can pick up anything with them,\u201d she says, \u201cmy purse, a penny off the floor.\u201d She uses them every day.<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11724,"template":"","class_list":["post-11723","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories\/11723","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media\/11724"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=11723"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}