{"id":3088,"date":"2019-11-03T17:49:29","date_gmt":"2019-11-03T23:49:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3088"},"modified":"2019-11-03T17:49:29","modified_gmt":"2019-11-03T23:49:29","slug":"individual-with-lgmd-rosamund","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2019\/11\/03\/individual-with-lgmd-rosamund\/","title":{"rendered":"OSOBA Z LGMD: Rosamund"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/strong><\/p>\n\n\n\n

Nazwa<\/strong>: Rosamunda  Wiek<\/strong>: 43 lata<\/p>\n\n\n\n

Kraj<\/strong>: Anglia Wielka Brytania<\/p>\n\n\n\n

Podtyp LGMD<\/strong>: Nie\nNadal przechodz\u0119 testy w Centrum Bada\u0144 nad Dystrofi\u0105 Mi\u0119\u015bniow\u0105 im.\nJohn Walton Muscular Dystrophy Research Centre w Newcastle w Wielkiej Brytanii.<\/p>\n\n\n\n

W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:\nPo badaniu lekarskim w pracy w lutym 2017 r. lekarz by\u0142 zaniepokojony\nfunkcjonowanie moich mi\u0119\u015bni. Sugerowano, \u017ce jest to rodzaj dystrofii mi\u0119\u015bniowej.\nw styczniu 2018 r. po op\u0142aceniu prywatnej wizyty u neurologa w Londynie.<\/p>\n\n\n\n

Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n\n\n\n

Odk\u0105d pami\u0119tam, cierpia\u0142em na b\u00f3l w dolnej cz\u0119\u015bci plec\u00f3w. Z\u0142ama\u0142em kr\u0119gos\u0142up (odcinek l\u0119d\u017awiowy numer 4) we wczesnych latach 20-tych podczas skok\u00f3w przez przeszkody; zmaga\u0142em si\u0119 z lewym biodrem i cierpia\u0142em na narastaj\u0105cy b\u00f3l w dolnej cz\u0119\u015bci plec\u00f3w i kolan po tym incydencie. Od czasu do czasu potyka\u0142em si\u0119 i upada\u0142em bez powodu. Wszyscy specjali\u015bci, z kt\u00f3rymi si\u0119 spotka\u0142em, przypisywali objawy z\u0142amaniu kr\u0119gos\u0142upa, z wyj\u0105tkiem specjalisty od bioder, z kt\u00f3rym um\u00f3wi\u0142em si\u0119 prywatnie. Moje \u015bci\u0119gna podkolanowe, przywodziciele i mi\u0119\u015bnie czworog\u0142owe prawie si\u0119 wy\u0142\u0105czy\u0142y. Zesp\u00f3\u0142 fizjoterapeut\u00f3w przywr\u00f3ci\u0142 je do pracy, ale bez wzgl\u0119du na to, jak ci\u0119\u017cko pracowa\u0142em, nie byli\u015bmy w stanie zbudowa\u0107 si\u0142y. W tym momencie doradzono mi wizyt\u0119 u neurologa.<\/p>\n\n\n\n

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

Nie zdiagnozowano. Moja pe\u0142na siostra cierpi na bardzo \u0142agodne\nos\u0142abienie ramion. <\/p>\n\n\n\n

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

Zawsze by\u0142em bardzo aktywny i uwielbia\u0142em by\u0107 zaj\u0119ty. Kiedy\u015b\nzawsze dobrze sobie radzi\u0142em, aby gdzie\u015b si\u0119 dosta\u0107.<\/p>\n\n\n\n

Najwi\u0119kszym wyzwaniem jest brak mo\u017cliwo\u015bci szybkiego poruszania si\u0119,\nwchodzi\u0107 po schodach i og\u00f3lnie si\u0119 spieszy\u0107.<\/p>\n\n\n\n

Je\u015bli doje\u017cd\u017cam do pracy i musz\u0119 nad\u0105\u017cy\u0107 za t\u0142umem,\nnosi\u0107 torb\u0119 lub jestem bardzo zm\u0119czony, musz\u0119 u\u017cywa\u0107 laski, co wymaga\u0142o przyzwyczajenia.\nprzyzwyczajenia. Je\u015bli mam by\u0107 szczery, to naprawd\u0119 jej nienawidz\u0119.<\/p>\n\n\n\n

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

Od najm\u0142odszych lat chcia\u0142em do\u015bwiadcza\u0107 r\u00f3\u017cnych rzeczy i cieszy\u0107 si\u0119 \u017cyciem.\n\u017cyciem. Podr\u00f3\u017cowa\u0142em, pracowa\u0142em w Ugandzie dla organizacji charytatywnej, uprawia\u0142em wiele sport\u00f3w\ni pracowa\u0142em dla Olympic Delivery Authority w Londynie, buduj\u0105c obiekty na igrzyska w 2012 roku.\nmiejsca. Zajmuj\u0119 si\u0119 bezpiecze\u0144stwem i higien\u0105 pracy, a m\u00f3j czas sp\u0119dzony z ruchem olimpijskim by\u0142 najlepszy.\nby\u0142 najlepszy i jestem wdzi\u0119czny, \u017ce w tamtym czasie mia\u0142em energi\u0119 i zdolno\u015b\u0107 do\nmo\u017cliwo\u015b\u0107 doje\u017cd\u017cania i pe\u0142nego uczestnictwa. Afryka by\u0142a wspania\u0142ym do\u015bwiadczeniem.\np\u00f3\u0142; nie s\u0105dz\u0119, \u017cebym m\u00f3g\u0142 to zrobi\u0107 teraz, wi\u0119c moim najwi\u0119kszym osi\u0105gni\u0119ciem jest\nz moim \u017cyciem, tworzenie i wykorzystywanie okazji. Obecnie pracuj\u0119 nad\ndu\u017cym projektem infrastrukturalnym w Wielkiej Brytanii; uwielbiam du\u017ce projekty, wi\u0119c mog\u0119\nnadal to robi\u0107 i nadal je\u017adzi\u0107 konno (w pewnym sensie!) s\u0105 dla mnie osi\u0105gni\u0119ciami.<\/p>\n\n\n\n

W jaki spos\u00f3b LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119\nosob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n\n\n\n

Wci\u0105\u017c radz\u0119 sobie z \u017cyciem i tworz\u0119\nmo\u017cliwo\u015bci, ale teraz jest inaczej. Kiedy\u015b by\u0142em do\u015b\u0107 nieustraszony; jednak ograniczona\nmobilno\u015b\u0107, niestabilno\u015b\u0107 i zm\u0119czenie wp\u0142ywaj\u0105 na pewno\u015b\u0107 siebie. To by\u0142o\ntrudno by\u0142o mi si\u0119 z tym pogodzi\u0107. Kiedy powiedziano mi, \u017ce to prawdopodobnie dystrofia mi\u0119\u015bniowa.\ndystrofia mi\u0119\u015bniowa, p\u0142aka\u0142am na osobno\u015bci ka\u017cdego dnia przez 6 miesi\u0119cy. Internet jest niesamowitym\n\u017ar\u00f3d\u0142em informacji, ale mo\u017ce te\u017c by\u0107 szkodliwy. Mog\u0119 sko\u0144czy\u0107 tak jak teraz, troch\u0119 gorzej lub na w\u00f3zku inwalidzkim.\ngorzej lub na w\u00f3zku inwalidzkim z rozrusznikiem serca, gdybym zaakceptowa\u0142 wszystko, co czyta\u0142em w Internecie.\nczyta\u0142em online. Nie powiedzia\u0142em o tym nikomu; nie mia\u0142em poj\u0119cia, co powiedzie\u0107 ani jak to wyja\u015bni\u0107.\nwyja\u015bni\u0107. Ba\u0142am si\u0119, \u017ce strac\u0119 m\u0119\u017ca i prac\u0119. Kto chcia\u0142by\nkogo\u015b, kto nie mo\u017ce porusza\u0107 si\u0119 samodzielnie, zw\u0142aszcza w \u015brodowisku budowlanym?\nSta\u0142am w obliczu zmiany, kt\u00f3rej nie mog\u0142am kontrolowa\u0107, czu\u0142am si\u0119 uwi\u0119ziona i bezbronna.<\/p>\n\n\n\n

Nauczy\u0142em si\u0119, \u017ce nie mo\u017cna kontrolowa\u0107 wszystkiego, docenia\u0107 tu i teraz.\ndocenia\u0107 tu i teraz. Pami\u0119tam, jak lata temu robi\u0142em sobie przerw\u0119 na szybki spacer z psem\nmojego psa w przerwie mi\u0119dzy prac\u0105 na laptopie. To by\u0142a standardowa pi\u0105tkowa czynno\u015b\u0107. Ko\u0144\nobowi\u0105zki zako\u0144czone wczesnym rankiem, laptop w\u0142\u0105czony, szybki trzepak wok\u00f3\u0142 pola w porze lunchu.\nw porze lunchu. Laptop wy\u0142\u0105czony oko\u0142o 6... kieliszek wina o 7! Nie pami\u0119tam scenerii\nani g\u0142upich rzeczy, kt\u00f3re robi\u0142 m\u00f3j pies, poza tym, \u017ce by\u0142y g\u0142upie i\nzwykle wymaga\u0142y ode mnie przeprosin. Pami\u0119tam, \u017ce by\u0142em przyklejony do telefonu\npodczas tych spacer\u00f3w. Kiedy teraz jestem z moimi zwierz\u0119tami, doceniam je, doceniam\ndoceniam drzewa, zapachy i \u015bpiew ptak\u00f3w. Ciesz\u0119 si\u0119 tu i teraz. Doceniam\nrzeczy, kt\u00f3re wci\u0105\u017c mam; m\u00f3j wzrok, m\u00f3j s\u0142uch i moje poczucie humoru.<\/p>\n\n\n\n

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

\u017bartobliwie opisuj\u0119 to jako niewygodny stan, kt\u00f3ry\noznacza, \u017ce musz\u0119 je\u015b\u0107 mniej i przegapi\u0107 dodatkowy kawa\u0142ek ciasta. A tak na powa\u017cnie\nto naprawd\u0119 g\u00f3wno; m\u00f3zg jest niesamowity, ale okrutny. Czasami w jaki\u015b spos\u00f3b\nzapominam, \u017ce jestem chory, i id\u0119 si\u0119 ruszy\u0107 i po prostu si\u0119 gniot\u0119. Konieczno\u015b\u0107 my\u015blenia\no tym, jak chodzi\u0107 i porusza\u0107 si\u0119, jest wyczerpuj\u0105ce. Na szcz\u0119\u015bcie mam mn\u00f3stwo\nnaturalnej energii, kt\u00f3ra pozwala mi przetrwa\u0107 wi\u0119kszo\u015b\u0107 dni.<\/p>\n\n\n\n

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

Zawsze chc\u0105c spakowa\u0107 dzie\u0144 pe\u0142en rzeczy, zaczyna\u0142o si\u0119 to\nod poprzedniej nocy; ta\u0144czy\u0142am ca\u0142\u0105 noc i wypi\u0142am o kilka drink\u00f3w za du\u017co. Ja\nnalega\u0107 na powr\u00f3t do domu na piechot\u0119 (wyobra\u017cam sobie m\u00f3j idealny dzie\u0144 podczas\nbrytyjskiego lata, kiedy faktycznie mamy dobry dzie\u0144) przez indyjsk\u0105 lub chi\u0144sk\u0105 restauracj\u0119.\nrestauracj\u0119.<\/p>\n\n\n\n

Po za\u015bni\u0119ciu na kanapie z psem, w ko\u0144cu\nw ko\u0144cu budzi\u0142em si\u0119 i szed\u0142em do \u0142\u00f3\u017cka; czo\u0142gaj\u0105c si\u0119 po schodach z powodu kaca\na nie choroby wyniszczaj\u0105cej mi\u0119\u015bnie. Prawdopodobnie wzi\u0105\u0142bym ze sob\u0105 fili\u017cank\u0119 herbaty\nkt\u00f3ra sta\u0142aby przy \u0142\u00f3\u017cku a\u017c do rana.<\/p>\n\n\n\n

Wstawa\u0142em i wychodzi\u0142em na porann\u0105 przeja\u017cd\u017ck\u0119 konn\u0105 z przyjaci\u00f3\u0142mi.\nz przyjaci\u00f3\u0142mi; dobrze si\u0119 bawi\u0105c na najbli\u017cszym wzg\u00f3rzu, aby oczy\u015bci\u0107 g\u0142ow\u0119. Nast\u0119pnym\nzadaniem by\u0142by pi\u0119kny, d\u0142ugi spacer z psem pod najwi\u0119ksze wzg\u00f3rze, jakie mog\u0142abym znale\u017a\u0107 i pub\nna sier\u015b\u0107 psa, je\u015bli dam rad\u0119, i lunch z m\u0119\u017cem. Do popo\u0142udnia\nPo po\u0142udniu by\u0142abym przytulona na kanapie z dzbankiem herbaty i ton\u0105\nczekolady.<\/p>\n\n\n\n

By\u0142bym zm\u0119czony, poniewa\u017c nie spa\u0142em i mia\u0142bym mn\u00f3stwo \u015bwie\u017cego powietrza.\n\u015bwie\u017cego powietrza. To uczucie \"dobrego zm\u0119czenia\".<\/p>\n\n\n\n

Aby przeczyta\u0107 wi\u0119cej \"LGMD Spotlight\nWywiady\" lub zg\u0142osi\u0107 si\u0119 do udzia\u0142u w nadchodz\u0105cym wywiadzie,\nodwied\u017a nasz\u0105 stron\u0119 internetow\u0105 pod adresem: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:  Rosamund  Age: 43 years old Country: […]<\/p>","protected":false},"author":1,"featured_media":3089,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-3088","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Rosamund - 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\/2019\/11\/03\/individual-with-lgmd-rosamund\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Rosamund - 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