{"id":3755,"date":"2020-11-15T14:15:25","date_gmt":"2020-11-15T20:15:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3755"},"modified":"2024-02-09T14:24:26","modified_gmt":"2024-02-09T14:24:26","slug":"individual-with-lgmd-neil","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2020\/11\/15\/individual-with-lgmd-neil\/","title":{"rendered":"OSOBA Z LGMD: Neil"},"content":{"rendered":"

\"\"<\/a><\/p>\n

Imi\u0119 i nazwisko: Neil Kramer<\/strong><\/p>\n

Wiek<\/strong>: \u00a050<\/p>\n

Kraj<\/strong>: Stany Zjednoczone Ameryki<\/p>\n

Podtyp LGMD<\/strong>: Nieznany<\/p>\n

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

W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n

Zdiagnozowano mnie w wieku 47 lat.<\/p>\n

Jakie by\u0142y pierwsze objawy?<\/strong>: Zacz\u0105\u0142em odczuwa\u0107 os\u0142abienie n\u00f3g, co skutkowa\u0142o cz\u0119stymi upadkami. Stopniowo zauwa\u017cy\u0142em, \u017ce mam problemy z utrzymaniem r\u00f3wnowagi, wstawaniem z krzese\u0142, wchodzeniem po schodach i kolanami, co powodowa\u0142o upadki. Pewnego dnia, 4 lata temu, mia\u0142em powa\u017cny upadek i poszed\u0142em na pogotowie. Lekarz zaleci\u0142 mi wizyt\u0119 u neurologa. Podczas pierwszej wizyty lekarz poinformowa\u0142 mnie, \u017ce problemy nie dotycz\u0105 g\u0142\u00f3wnie n\u00f3g, ale r\u00f3wnie\u017c r\u0105k. Pami\u0119tam, \u017ce czu\u0142am si\u0119 bezradna i przera\u017cona. Min\u0119\u0142o kilka miesi\u0119cy, zanim w ko\u0144cu otrzyma\u0142em diagnoz\u0119. Miesi\u0105ce te by\u0142y co najmniej stresuj\u0105ce. Podczas przechodzenia przez wszystkie testy u neurologa, odbyli\u015bmy wiele rozm\u00f3w. Podczas jednej z wizyt rozmawiali\u015bmy o moim dzieci\u0144stwie. Nagle wyzwania, kt\u00f3re mia\u0142em jako dziecko, nabra\u0142y sensu.<\/p>\n

Jako dziecko nigdy nie mog\u0142em robi\u0107 pompek, podci\u0105gni\u0119\u0107, wspina\u0107 si\u0119 po linie na zaj\u0119ciach gimnastycznych, biega\u0107 bardzo szybko itp. Nigdy te\u017c nie potrafi\u0142em podnosi\u0107 ci\u0119\u017ckich przedmiot\u00f3w. My\u015bla\u0142em, \u017ce jestem po prostu kujonem i s\u0142abeuszem. Zaj\u0105\u0142em si\u0119 muzyk\u0105 i sta\u0142em si\u0119 kujonem zespo\u0142u.<\/p>\n

Kiedy zdiagnozowano u mnie dystrofi\u0119 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych, wiele rzeczy w moim \u017cyciu zacz\u0119\u0142o nabiera\u0107 sensu.<\/p>\n

Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD? <\/strong><\/p>\n

Nie, nie mam \u017cadnych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD. My\u015bl\u0119, \u017ce m\u00f3j przypadek jest tajemnic\u0105.<\/p>\n

Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n

Staram si\u0119 jak najwi\u0119cej rusza\u0107, aby spowolni\u0107 post\u0119p choroby; zauwa\u017cam jednak, \u017ce moje nogi staj\u0105 si\u0119 coraz s\u0142absze. Musz\u0119 bardziej uwa\u017ca\u0107, aby unikn\u0105\u0107 upadk\u00f3w. Musz\u0119 bardziej ws\u0142uchiwa\u0107 si\u0119 w swoje cia\u0142o, aby okre\u015bli\u0107, kiedy musz\u0119 skorzysta\u0107 z chodzika lub skutera. Wiem, \u017ce nie powinienem si\u0119 wstydzi\u0107, ale wyzwaniem jest przezwyci\u0119\u017cenie wstydu i bycie tym, kim jestem. Urz\u0105dzenia u\u0142atwiaj\u0105ce poruszanie si\u0119 s\u0105 narz\u0119dziem, kt\u00f3re pomaga mi zachowa\u0107 niezale\u017cno\u015b\u0107.<\/p>\n

Zaczynam r\u00f3wnie\u017c zauwa\u017ca\u0107 os\u0142abienie w ramionach. Tak bardzo skupia\u0142em si\u0119 na nogach; zaczynam jednak martwi\u0107 si\u0119 o dodatkowe wyzwania w przysz\u0142o\u015bci. Wyzwanie polega na tym, by nie martwi\u0107 si\u0119 o przysz\u0142o\u015b\u0107, ale cieszy\u0107 si\u0119 ka\u017cdym dniem. Mam wspania\u0142\u0105 rodzin\u0119 i wspieraj\u0105ce \u015brodowisko pracy, kt\u00f3re pomaga mi kontynuowa\u0107 udan\u0105 karier\u0119.<\/p>\n

Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n

Uwa\u017cam, \u017ce moim najwi\u0119kszym osi\u0105gni\u0119ciem by\u0142a kariera w opiece spo\u0142ecznej. Pracuj\u0119 dla agencji o nazwie San Diego Regional Center (SDRC). Koordynujemy us\u0142ugi dla ponad 32 000 os\u00f3b z niepe\u0142nosprawno\u015bci\u0105 rozwojow\u0105 i ich rodzin. Praca, kt\u00f3r\u0105 wykonujemy dla naszej spo\u0142eczno\u015bci jest niesamowita. Nasi klienci s\u0105 dla nas najwa\u017cniejsi. Przez ostatnie kilka lat pracowa\u0142em jako Legislative Liaison dla naszej agencji. Poniewa\u017c nasze fundusze pochodz\u0105 ze stanu Kalifornia, cz\u0119sto spotykam si\u0119 z naszymi ustawodawcami stanowymi i ich personelem, aby zapewni\u0107, \u017ce nasz system \u015bwiadczenia us\u0142ug dla naszych klient\u00f3w i rodzin pozostanie nienaruszony. Naprawd\u0119 broni\u0119 naszego systemu. Uwa\u017cam, \u017ce nasze wysi\u0142ki by\u0142y bardzo skuteczne.<\/p>\n

Teraz, gdy zdiagnozowano u mnie LGMD, mog\u0119 odnie\u015b\u0107 si\u0119 do niekt\u00f3rych klient\u00f3w, kt\u00f3rym s\u0142u\u017cymy, kt\u00f3rzy polegaj\u0105 na urz\u0105dzeniach mobilnych w celu uzyskania niezale\u017cno\u015bci. Moja diagnoza tylko wzmocni\u0142a moj\u0105 pasj\u0119 do rzecznictwa, nie tylko dla klient\u00f3w, kt\u00f3rym s\u0142u\u017c\u0119 w SDRC, ale dla WSZYSTKICH os\u00f3b niepe\u0142nosprawnych.<\/p>\n

Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n

LGMD, cho\u0107 bardzo wymagaj\u0105ce, sprawi\u0142o, \u017ce sta\u0142em si\u0119 bardziej \u015bwiadomy potrzeb os\u00f3b niepe\u0142nosprawnych w naszej spo\u0142eczno\u015bci. Jak ka\u017cdy z nas, mam dobre i z\u0142e dni, kiedy moje nogi i r\u0119ce s\u0105 ci\u0119\u017ckie i zm\u0119czone. Staram si\u0119 pracowa\u0107 w gorsze dni, aby upewni\u0107 si\u0119, \u017ce podejmuj\u0119 jak\u0105\u015b aktywno\u015b\u0107 fizyczn\u0105 w celu spowolnienia post\u0119pu choroby. Sta\u0142am si\u0119 \"silniejsza\" emocjonalnie, poniewa\u017c nie chc\u0119, aby choroba LGMD powstrzymywa\u0142a mnie przed \u017cyciem. Mam silniejsze postanowienie wspierania innych i robi\u0119 wszystko, co w mojej mocy, aby podnosi\u0107 \u015bwiadomo\u015b\u0107 na temat LGMD i wszystkich chor\u00f3b zwi\u0105zanych z dystrofi\u0105 mi\u0119\u015bniow\u0105.<\/p>\n

Zawsze pracowa\u0142em w zawodzie zwi\u0105zanym ze s\u0142u\u017cb\u0105 publiczn\u0105. Zawsze chcia\u0142em ubiega\u0107 si\u0119 o urz\u0105d publiczny. Pomimo LGMD, jestem teraz kandydatem do mojej lokalnej Rady Miejskiej. Jednym z moich g\u0142\u00f3wnych priorytet\u00f3w jest wspieranie os\u00f3b niepe\u0142nosprawnych i senior\u00f3w. Chc\u0119 zapewni\u0107 lepszy dost\u0119p do naszych otwartych przestrzeni, park\u00f3w i system\u00f3w szlak\u00f3w. LGMD nie powstrzyma mnie przed realizacj\u0105 moich marze\u0144!<\/p>\n

Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>: \u00a0<\/strong><\/p>\n

Chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce istniej\u0105 pewne niepe\u0142nosprawno\u015bci, kt\u00f3re s\u0105 ukryte. Nadal mog\u0119 chodzi\u0107 i staram si\u0119 to robi\u0107 tak cz\u0119sto, jak tylko mog\u0119. Kiedy moje nogi czuj\u0105 si\u0119 zm\u0119czone\/ci\u0119\u017ckie, u\u017cywam chodzika. Na d\u0142ugich dystansach lub w t\u0142umie potrzebuj\u0119 skutera lub w\u00f3zka inwalidzkiego. Kiedy korzystam z miejsca dla niepe\u0142nosprawnych i nie potrzebuj\u0119 chodzika, czasami spotykam si\u0119 ze spojrzeniami ludzi, kt\u00f3rzy nie rozumiej\u0105, dlaczego potrzebuj\u0119 tego miejsca. Mam bardzo s\u0142abe nogi i jestem nara\u017cony na upadki. Nie powinienem czu\u0107 si\u0119 zak\u0142opotany lub zawstydzony, poniewa\u017c musz\u0119 korzysta\u0107 z miejsca parkingowego dla niepe\u0142nosprawnych.<\/p>\n

Chc\u0119 podnosi\u0107 \u015bwiadomo\u015b\u0107 na temat LGMD, zbiera\u0107 pieni\u0105dze na badania nad LGMD i wspiera\u0107 wszystkich, kt\u00f3rzy cierpi\u0105 na t\u0119 chorob\u0119.<\/p>\n

Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co by\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>: \u00a0<\/strong><\/p>\n

Chcia\u0142bym m\u00f3c je\u017adzi\u0107 na rolkach tak jak w liceum, gra\u0107 w golfa z moim synem, gra\u0107 w baseball i by\u0107 mo\u017ce nauczy\u0107 si\u0119 surfowa\u0107. Mieszkam w po\u0142udniowej Kalifornii!<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3837,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-3755","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Neil - LGMD Awareness Foundation<\/title>\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\/pl\/individuals-with-lgmd-interviews\/2020\/11\/15\/individual-with-lgmd-neil\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" 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