{"id":1029,"date":"2015-10-02T14:02:24","date_gmt":"2015-10-02T19:02:24","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1029"},"modified":"2015-10-02T14:02:24","modified_gmt":"2015-10-02T19:02:24","slug":"mark","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/10\/02\/mark\/","title":{"rendered":"INDIVIDUAL WITH LGMD: Mark"},"content":{"rendered":"

10\/02\/2015<\/b><\/p>\n

\u0130sim<\/strong>: \u00a0 \u00a0 \u00a0 Mark \u00a0 \u00a0 \u00a0 \u00a0 \u00a0Ya\u015f<\/strong>: \u00a0\u00a0\u00a0\u00a0 54\"Unknown<\/a><\/p>\n

\u00dclke<\/strong>: \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 United States<\/p>\n

LGMD Alt Tipi<\/strong> (if known): \u00a0 \u00a0 \u00a0Unknown<\/p>\n

\u00a0<\/strong><\/p>\n

Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n

Age 41. The day was January 28, 2002<\/p>\n

\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n

Difficulty climbing ladders and stairs. Also difficulty rising from the floor or a low chair or sofa. But I was always slow as a child. I could not quite keep up with my friends or schoolmates.<\/p>\n

LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131? <\/strong><\/p>\n

\u00a0<\/strong>My father had an unknown sub-type of LGMD. He was the first, and only other, patient in our family. His parents and grandparents seemed to be unaffected. My symptoms parallel his almost exactly. I was his caregiver from the age of 14 to about 25.<\/p>\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/p>\n

Having to constantly ask for help. Watching my wife and daughters do the chores that I would enjoy doing, and that the man of the house usually does; yard work, repairs, etc. Watching my wife give up outings, restaurants, vacations, and so on. I can live without, but it\u2019s not fair to her. I encourage her to do those things, but she misses going out as a couple as well. We do go out, but it\u2019s not spontaneous and the outings are few and far between.<\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n

Before the MD? The home and family I\u2019ve established. And I\u2019ve many close friends.<\/p>\n

In spite of the MD?\u00a0 I\u2019ve always had a \u201cBucket List\u201d in my head of life goals. I have seen most of these materialize and come to pass. A few examples: Hire an architect and build our dream home (accessible as well). Read Les Miserables<\/em>. Learn to solve a Rubik\u2019s Cube. Take a train across the United States. See the Grand Canyon. There are dozens more, none of which were prevented because of my LGMD.<\/p>\n

LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?\u00a0 <\/strong><\/p>\n

I am determined to identify my sub-type. I believe a genetic diagnosis will be critical in future treatments. I have created a Facebook group, \u201cMuscular Dystrophy Subtype Unknown\u201d,\u00a0 for MD patients who have been unable to achieve a genetic diagnosis. The group is far more than venting and support. We share valuable resources and information with the goal that if one gets diagnosed, many others may benefit. This is my mission, my goal and my passion right now; to help as many of my fellow LGMD friends as possible and get myself and every one of them a diagnosis. I won\u2019t give up on them even if I identify my own sub-type tomorrow.<\/p>\n

D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n

People with LGMD have the same hopes, dreams and fears as you. In our minds we run on the beach, walk barefoot in the grass, hike along a mountain stream. It takes a great strength of heart to not succumb to the imprisonment in our own bodies. Never take your body and legs for granted! Never take for granted getting up from a toilet, running an errand, hugging a loved one or holding a baby. Those abilities are a distant memory for me. But at the same time, our lives are SO MUCH MORE than healthy legs! Enjoy your family, a sunset, a good book, a thunderstorm, a bird in your backyard. Don\u2019t be unhappy because your boss was crabby, you were stuck in traffic or your dinner got cold.<\/p>\n

LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\n

I would thank God and the team of doctors and researchers that made it happen. Then I would hug everybody I love\u2026.hard and long. Then I would do a few of the things my wife and I love to do; dine out, travel, and walk in the sand holding hands.<\/p>\n

 <\/p>\n

Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen web sitemizi ziyaret edin: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

10\/02\/2015 Name: \u00a0 \u00a0 \u00a0 Mark \u00a0 \u00a0 \u00a0 \u00a0 […]<\/p>","protected":false},"author":1,"featured_media":1030,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[16,47],"class_list":["post-1029","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","tag-united-states","tag-unknown-sub-type"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Mark<\/title>\n<meta name=\"description\" content=\"Mark, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/10\/02\/mark\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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