{"id":598,"date":"2015-04-14T15:10:47","date_gmt":"2015-04-14T20:10:47","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=598"},"modified":"2015-04-14T15:10:47","modified_gmt":"2015-04-14T20:10:47","slug":"freddy","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/04\/14\/freddy\/","title":{"rendered":"INDIVIDUAL WITH LGMD:  Freddy"},"content":{"rendered":"<p>04\/14\/2015<\/p>\n<p><strong>NAZWA<\/strong>:\u00a0 Freddy \u00a0\u00a0<strong>WIEK<\/strong>: 49 Yrs. Old<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/04\/LGMD2A-Freddy.png\"><img decoding=\"async\" class=\"lazyload  size-medium wp-image-599 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\/04\/LGMD2A-Freddy-300x169.png\" alt=\"LGMD2A - Freddy\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>KRAJ<\/strong>:\u00a0 Denmark<\/p>\n<p><strong>Podtyp LGMD<\/strong>:   LGMD2A - kalpainopatia<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong>:<\/p>\n<p>I was initially diagnosed with LGMD at the age of 29 years old.\u00a0 Around my 34<sup>th<\/sup> \u00a0birthday I received confirmation of my LGMD2A diagnosis.<\/p>\n<p><strong>JAKIE BY\u0141Y PIERWSZE OBJAWY:<\/strong><\/p>\n<p>I had a stiff neck when walking and was having problems lifting objects up from the ground. My right arm could not bend. \u00a0I was also experiencing fatigue.<\/p>\n<p><strong>CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD? <\/strong><\/p>\n<p>Nie, jestem jedyn\u0105 osob\u0105 w mojej rodzinie z t\u0105 diagnoz\u0105.<\/p>\n<p><strong>CO UWA\u017bASZ ZA NAJWI\u0118KSZE WYZWANIE W \u017bYCIU Z LGMD?<\/strong>:<\/p>\n<p>I struggle to have enough energy to do the things that I want and need to do during the day.\u00a0 I try to plan my day in advance so I know what and how to use my energy during the day. \u00a0Unexpected things or chores are sometimes a problem.<\/p>\n<p>The long winters are also a challenge.\u00a0 In the winter I stay indoors as much as possible. \u00a0I only go out when I really have to. \u00a0My son understands this, but is it not always nice for him that we cannot play outside or spend more time outdoors in the winter. \u00a0When there is frost or snow I stay indoor even more because I\u2019m afraid to fall.<\/p>\n<p>Because of the LGMD sometimes I seem to have a short temper\u2026?<\/p>\n<p><strong>JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:<\/p>\n<p>One of my greatest accomplishments is that I moved from Holland to Denmark 15 years ago. \u00a0\u00a0I have a nice wife and son who is \u00a07 years old (almost 8).\u00a0 I also have a job where I am able to work 20 hours a week. \u00a0\u00a0(Denmark is trying to help the disabled where they can.)<\/p>\n<p><strong>JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ:<\/strong><\/p>\n<p>I am still able to walk, and my doctor told me that I will be able to do that forever J, but sometimes I\u2019m a bit unstable and walking \u201cstrange\u201d.<\/p>\n<p>I have to plan my days, to plan my energy , if there is something different like an appointment I have to know it days in advance.\u00a0 Otherwise I take it as it comes, one day at the time.<\/p>\n<p><strong>CO CHCIA\u0141BY\u015a, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O LGMD?<\/strong>:<\/p>\n<p>I want the world to know that the disease Limb Girdle Muscular Dystrophy (LGMD) exists and that it is a rare disease.\u00a0 The form of LGMD that I have \u2013 LGMD type 2A &#8211; is quite rare! \u00a0\u00a0In Denmark it is estimated that only 6% of LGMD patients are diagnosed with LGMD2A.<\/p>\n<p><strong>GDYBY JUTRO MO\u017bNA BY\u0141O \"WYLECZY\u0106\" CHOROB\u0118 ALZHEIMERA, CO BY\u0141OBY PIERWSZ\u0104 RZECZ\u0104, KT\u00d3R\u0104 CHCIA\u0141BY\u015a ZROBI\u0106?<\/strong>:<\/p>\n<p>Running!\u00a0 It has been many years ago since I have been able to run or since I was stable in my walking.<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>04\/14\/2015 NAME:\u00a0 Freddy \u00a0\u00a0AGE: 49 Yrs. 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