{"id":1064,"date":"2015-12-04T10:35:14","date_gmt":"2015-12-04T16:35:14","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1064"},"modified":"2015-12-04T10:35:14","modified_gmt":"2015-12-04T16:35:14","slug":"robert","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/ru\/individuals-with-lgmd-interviews\/2015\/12\/04\/robert\/","title":{"rendered":"INDIVIDUAL WITH LGMD:  Robert"},"content":{"rendered":"<p><strong>12\/4\/2015:<\/strong><\/p>\n<p><strong>\u0418\u041c\u042f:<\/strong>\u00a0 Robert\u00a0 \u00a0<strong>\u0412\u043e\u0437\u0440\u0430\u0441\u0442<\/strong>: 71 yrs. old<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/12\/Unknown-Robert-P.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1065 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/12\/Unknown-Robert-P-300x169.png\" alt=\"Unknown -Robert P\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u0421\u0422\u0420\u0410\u041d\u0410<\/strong>: \u041a\u0430\u043d\u0430\u0434\u0430<\/p>\n<p><strong>LGMD \u041f\u043e\u0434\u0442\u0438\u043f<\/strong>: Unknown<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>\u0412 \u043a\u0430\u043a\u043e\u043c \u0432\u043e\u0437\u0440\u0430\u0441\u0442\u0435 \u0432\u0430\u043c \u0431\u044b\u043b \u043f\u043e\u0441\u0442\u0430\u0432\u043b\u0435\u043d \u0434\u0438\u0430\u0433\u043d\u043e\u0437<\/strong>:<\/p>\n<p>I was diagnosed when I was 42 yrs. old.<\/p>\n<p><strong>\u041a\u0430\u043a\u043e\u0432\u044b \u0431\u044b\u043b\u0438 \u0432\u0430\u0448\u0438 \u043f\u0435\u0440\u0432\u044b\u0435 \u0441\u0438\u043c\u043f\u0442\u043e\u043c\u044b<\/strong>:<\/p>\n<p>I did not walk until I was 24 months old.\u00a0 As a child I could not run like others but it was believed at the time to be caused by asthma.\u00a0 I have never been physically strong.<\/p>\n<p><strong>\u0415\u0441\u0442\u044c \u043b\u0438 \u0443 \u0432\u0430\u0441 \u0434\u0440\u0443\u0433\u0438\u0435 \u0447\u043b\u0435\u043d\u044b \u0441\u0435\u043c\u044c\u0438, \u0441\u0442\u0440\u0430\u0434\u0430\u044e\u0449\u0438\u0435 LGMD<\/strong><strong>: \u00a0<\/strong><\/p>\n<p>Thankfully, no.\u00a0 I am the only person in my family diagnosed with LGMD.<\/p>\n<p><strong>\u0427\u0442\u043e, \u043f\u043e \u0432\u0430\u0448\u0435\u043c\u0443 \u043c\u043d\u0435\u043d\u0438\u044e, \u044f\u0432\u043b\u044f\u0435\u0442\u0441\u044f \u043d\u0430\u0438\u0431\u043e\u043b\u044c\u0448\u0435\u0439 \u043f\u0440\u043e\u0431\u043b\u0435\u043c\u043e\u0439 \u0432 \u0436\u0438\u0437\u043d\u0438 \u0441 LGMD<\/strong>:<\/p>\n<p>One of the greatest challenges is the high cost of aids to keep one going with a reasonably good quality of life.<\/p>\n<p><strong>\u041a\u0430\u043a\u043e\u0435 \u0432\u0430\u0448\u0435 \u0441\u0430\u043c\u043e\u0435 \u0431\u043e\u043b\u044c\u0448\u043e\u0435 \u0434\u043e\u0441\u0442\u0438\u0436\u0435\u043d\u0438\u0435<\/strong>:<\/p>\n<p>My greatest accomplishment is \u00a0the friendships I have developed.<strong> \u00a0<\/strong><\/p>\n<p><strong>\u041a\u0430\u043a LGMD \u043f\u043e\u0432\u043b\u0438\u044f\u043b \u043d\u0430 \u0442\u043e, \u0447\u0442\u043e \u0432\u044b \u0441\u0442\u0430\u043b\u0438 \u0442\u0435\u043c \u0447\u0435\u043b\u043e\u0432\u0435\u043a\u043e\u043c, \u043a\u043e\u0442\u043e\u0440\u044b\u043c \u0432\u044b \u044f\u0432\u043b\u044f\u0435\u0442\u0435\u0441\u044c \u0441\u0435\u0433\u043e\u0434\u043d\u044f<\/strong><strong>:\u00a0 <\/strong><\/p>\n<p>I believe living with LGMD has taught me patience, organization, empathy for others, and humor.<\/p>\n<p><strong>\u0427\u0442\u043e \u0432\u044b \u0445\u043e\u0442\u0438\u0442\u0435, \u0447\u0442\u043e\u0431\u044b \u043c\u0438\u0440 \u0443\u0437\u043d\u0430\u043b \u043e LGMD<\/strong><strong>:\u00a0 <\/strong><\/p>\n<p>As my disability has progressed and more help is required to keep me active, I have realized that you cannot be poor and have a good quality of life when you are afflicted with a debilitating condition like LGMD, without a lot of assistance, both financial and physical.\u00a0 \u00a0Not everyone is as fortunate as I to work a full career and be able to plan for retirement.\u00a0 Please help to find a treatment or cure.<\/p>\n<p><strong>\u0415\u0441\u043b\u0438 \u0431\u044b \u0432\u0430\u0448 LGMD \u043c\u043e\u0436\u043d\u043e \u0431\u044b\u043b\u043e \"\u0432\u044b\u043b\u0435\u0447\u0438\u0442\u044c\" \u0437\u0430\u0432\u0442\u0440\u0430, \u0447\u0442\u043e \u0431\u044b \u0432\u044b \u0445\u043e\u0442\u0435\u043b\u0438 \u0441\u0434\u0435\u043b\u0430\u0442\u044c \u0432 \u043f\u0435\u0440\u0432\u0443\u044e \u043e\u0447\u0435\u0440\u0435\u0434\u044c<\/strong>:<\/p>\n<p>I want to go for a walk along the roads and in the fields and forest around my home community. \u00a0\u00a0\u00a0I have not done that in over 50 years \u2026.. and I miss it.\u00a0 Also, I would like to take my wife dancing; we have not been able to do that since the year we met (1986) and I think she misses it.<\/p>\n<p>\u0427\u0442\u043e\u0431\u044b \u043f\u0440\u043e\u0447\u0438\u0442\u0430\u0442\u044c \u0434\u0440\u0443\u0433\u0438\u0435 \u0438\u043d\u0442\u0435\u0440\u0432\u044c\u044e \"LGMD Spotlight Interviews\" \u0438\u043b\u0438 \u0441\u0442\u0430\u0442\u044c \u0434\u043e\u0431\u0440\u043e\u0432\u043e\u043b\u044c\u0446\u0435\u043c \u0434\u043b\u044f \u0443\u0447\u0430\u0441\u0442\u0438\u044f \u0432 \u043f\u0440\u0435\u0434\u0441\u0442\u043e\u044f\u0449\u0435\u043c \u0438\u043d\u0442\u0435\u0440\u0432\u044c\u044e, \u043f\u043e\u0441\u0435\u0442\u0438\u0442\u0435 \u043d\u0430\u0448 \u0441\u0430\u0439\u0442: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"<p>12\/4\/2015: NAME:\u00a0 Robert\u00a0 \u00a0Age: 71 yrs. old COUNTRY: Canada LGMD [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1065,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[38,20,47],"class_list":["post-1064","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","tag-canada","tag-united-kingdom","tag-unknown-sub-type"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Robert - LGMD Awareness 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