{"id":11705,"date":"2016-05-02T04:20:16","date_gmt":"2016-05-02T11:20:16","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11705"},"modified":"2025-12-30T04:21:49","modified_gmt":"2025-12-30T12:21:49","slug":"amilies-helping-families-ralph-and-lee-baker","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/amilies-helping-families-ralph-and-lee-baker\/","title":{"rendered":"Families Helping Families: Ralph and Lee Baker"},"content":{"rendered":"
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\u201cOur friends had no knowledge of the disease,\u201d says Lee Baker, \u201cnor had my family. They had no idea what I was talking about.\u201d<\/div>\n<\/div>\n
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Families Helping Families: Ralph and Lee\u00a0Baker<\/h2>\n

Until 1988, \u201cI had no idea there was such a thing as myotonic dystrophy,\u201d says Lee Baker, 75, an artist and former school teacher who lives in Roanoke, Virginia and has myotonic dystrophy.\u00a0Lee and her husband Ralph traveled the world during his 25-year army career. Although Lee was very active, she says she \u201cknew that things were not really right\u201d with her\u00a0health.<\/p>\n

\u201cOne of the first things to be a problem was that my tongue would freeze up when I got nervous or emotional. It gets stiff like a board. Then my hands and feet began to do that, and I had started to fall a lot. I didn\u2019t know what was wrong.\u201d In her 30s, when she was teaching elementary school, Lee began having bouts of extreme fatigue that felt like the flu. She went to doctors who misdiagnosed her at various times with lupus, arthritis and fibromyalgia, and treated her with the corticosteroid drug prednisone, which didn\u2019t\u00a0help.<\/p>\n

Letter Led to Diagnosis<\/h2>\n

Then, in 1988, when she was 47, Lee received a letter from one of her mother\u2019s nieces, who was constructing a family history. Tucked into it was an interesting sentence. \u201cI hope you don\u2019t have myotonic dystrophy,\u201d it said. \u201cSome of the members of our family\u00a0do.\u201d<\/p>\n

Lee had known little of her mother\u2019s family. \u201cMy mother had tuberculosis, which got worse after I was born,\u201d she says. \u201cSo they wanted her to go out west where the air was clear and dry. My father didn\u2019t go with her. Eventually, I was sent to an aunt and uncle in Kansas, and they raised\u00a0me.\u201d<\/p>\n

After the letter, Lee\u2019s mysterious symptoms began to make sense. She took it to a doctor in Roanoke, who sent her to a neurology department at a local hospital, where a \u201ctextbook case\u201d of DM was diagnosed (although there was no genetic testing at that\u00a0time).<\/p>\n

Wanting to Know More<\/h2>\n

Lee started going to the Muscular Dystrophy Association clinic in Roanoke, but there wasn\u2019t any research going on in that part of the country. \u201cI\u2019m the type of person who wants to know what\u2019s going on, why things aren\u2019t working right, that sort of thing,\u201d she says. Eventually, that curiosity led her to Dr. Richard Moxley in Rochester, New\u00a0York.<\/p>\n

In the 1990s, Dr. Moxley was testing troglitazone in DM, and Lee became part of the study. (Troglitazone, a drug that increases sensitivity to insulin, was later found to cause liver problems, and it was taken off the market.) \u201cI felt like it was doing a little good, but they stopped the trial,\u201d she said. \u201cWhat I thought was neat, though, is that Dr. Moxley was willing to understand more about how myotonic dystrophy works. Whether or not that particular medicine was helpful, he learned a lot. He would come by in the evening before he left the hospital and tell me what was new, what was going on with the research. I just ate it up. I was very\u00a0interested.\u201d<\/p>\n

Joining the DM\u00a0Community<\/h2>\n

The trial in Rochester was an introduction to the DM community for Lee and Ralph, but 2005 marked the beginning of their true immersion in it. That year, the 5th International Myotonic Dystrophy Consortium (IDMC-5) was held in Quebec City in Canada, and they attended it. \u201cThat was the first time we\u2019d been to any kind of meeting,\u201d Ralph remembers, and it turned out to be the one from which Myotonic was first\u00a0launched.<\/p>\n

Becoming part of the larger DM community through Myotonic helped the couple almost immediately. \u201cOur friends had no knowledge of the disease,\u201d says Lee, \u201cnor had my family. They had no idea what I was talking about.\u201d Even going to general muscular dystrophy events hadn\u2019t been helpful. \u201cI was maybe the only one in the group that had myotonic dystrophy,\u201d\u00a0she\u00a0says.<\/p>\n

Since then, Lee has been in several DM research studies, and Ralph has volunteered to be part of the control group when the opportunity presented itself. They\u2019ve learned a lot by going to Myotonic Annual Conferences. \u201cJust being at the conferences \u2013 it just blows my mind how much research is going on,\u201d\u00a0Ralph\u00a0says.<\/p>\n

Helping Others Help Themselves<\/h2>\n

For Lee and Ralph, the help they\u2019ve been able to offer to other people at the Myotonic Annual Conferences has been at least as important as the help and information they\u2019ve received. \u201cI think in the conferences I have been a help to others with myotonic dystrophy and their families, because I am willing to talk about how it affects me, which helps them know what they might expect,\u201d\u00a0Lee\u00a0 says.<\/p>\n

She has seen families \u201ctotally break apart\u201d when someone develops DM. It can be hard, she says, for family members to truly accept that, \u201cyou mean it when you say that you won\u2019t get better, that you\u2019ll get worse. Many times, it\u2019s the children and one parent that are affected, and others that are not affected. It can be hard to keep the family\u00a0together.\u201d<\/p>\n

One family stands out in her mind. \u201cThere\u2019s one couple that brings their grandson with congenital muscular dystrophy to the conferences, and Ralph has kind of made friends with Grandpa,\u201d Lee says. The child\u2019s mother has juvenile-onset DM. \u201cThey were so stressed the first time we met them, because things weren\u2019t going right. I think he felt a little like a fish out of water. Now we\u2019ve seen them three different times, and we like to say we are old friends. They are truly a part of the DM\u00a0community.\u201d<\/p>\n

She adds, \u201cIt\u2019s partly just getting to know other people have this disorder also. You\u2019re not alone in the fight. For the whole family, I say, \u2018This is going to make a change in your life. The more you know about what\u2019s happening with your spouse or child, the more you\u2019ll be able to\u00a0understand.\u2019\u201d<\/p>\n

Expecting the Unexpected, Defining Yourself<\/h2>\n
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After 47 years of marriage, Lee and Ralph are preparing to take their first pleasure cruise this spring. They\u2019ve arranged for a power scooter to be delivered to the ship and hope all will go well. They\u2019re looking forward to the 16-day trip that will start in Miami, go through the Panama Canal and end in San\u00a0Francisco.<\/p>\n

They realize there may be some inconveniences and surprises, but they\u2019ve learned to expect such things. \u201cWe make assumptions that we have relied on for this cruise that things will be there as they say they will, but until we get there, we won\u2019t know,\u201d says Lee. \u201cThat\u2019s just part of it, but it\u2019s a part that you don\u2019t realize is going to be part of\u00a0it.\u201d<\/p>\n

In addition to expecting the unexpected, Lee has lived by the principle that DM \u201cdoes not define who you are,\u201d and that\u2019s something she\u2019s tried to impart to others in the community. \u00a0\u201cI am a painter,\u201d she says. \u201cI have a muscle problem, so I\u2019ve adjusted the way I paint, but I keep painting. I read. You have to keep as much of your own self as\u00a0possible.\u201d<\/p>\n

It’s easy to help a family\u00a0like the Bakers.\u00a0Click here to support newly diagnosed families\u00a0today.<\/a><\/p>\n

At right: \u00ab\u00a0Revelation 21\u00a0\u00bb, Lee Baker<\/p>\n

It is heavily textured water color paper that is collaged with hand made papers\u00a0and overlaid with watercolor and acrylic paints with a little bit of green\u00a0ink.<\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11706,"template":"","class_list":["post-11705","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/family-stories\/11705","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\/11706"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=11705"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}