{"id":415,"date":"2015-01-24T22:13:48","date_gmt":"2015-01-25T04:13:48","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=151"},"modified":"2015-01-24T22:13:48","modified_gmt":"2015-01-25T04:13:48","slug":"151","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/01\/24\/151\/","title":{"rendered":"INDIVIDUO CON LGMD: Andrew"},"content":{"rendered":"

01\/24\/2015:<\/p>\n

\u00a0NOME<\/strong>: Andrea\u00a0\u00a0\u00a0\u00a0 \"LGMD2A<\/a><\/span><\/p>\n

ET\u00c0<\/strong>: 34<\/span><\/p>\n

PAESE<\/strong>: Regno Unito
\n<\/span><\/p>\n

Sottotipo LGMD<\/strong>: LGMD<\/span> 2A \/ Calpainopatia<\/span><\/p>\n

A CHE ET\u00c0 \u00c8 STATA FATTA LA DIAGNOSI<\/strong>: 18 anni<\/span><\/span><\/p>\n

QUALI SONO STATI I PRIMI SINTOMI<\/strong>:
\nCadevo quando cercavo di correre e facevo anche fatica ad alzarmi da una sedia o da terra.<\/p>\n

HA ALTRI FAMILIARI AFFETTI DA LGMD?<\/strong>:
\nNo, sono l'unico, non ci sono precedenti da parte dei genitori.<\/p>\n

QUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE NEL VIVERE CON LA LGMD<\/strong>:
\nCome utente di una sedia a rotelle elettrica a tempo pieno, la sfida pi\u00f9 grande che devo affrontare \u00e8 l'uso della toilette. Stando cos\u00ec tanto seduto mi accorgo di soffrire di sindrome del colon irritabile e, non potendo stare in piedi per spostarmi sulla e dalla toilette, viaggiare diventa un po' difficile. Anche i viaggi in aereo sono molto impegnativi.<\/p>\n

Abbiamo un bambino di 18 mesi (il nostro primo) e al momento la mia sfida pi\u00f9 grande \u00e8 quella di essere un buon padre, soprattutto quando non posso sollevarlo o mettermi a giocare con lui alle macchinine.<\/p>\n

Dover fare affidamento su parenti e amici per semplici lavori di bricolage, come montare una tenda o una mensola. Abituarsi ad avere assistenti in famiglia per dare una mano.<\/p>\n

Sentire che si dovrebbe essere in grado di aiutare la famiglia e gli amici quando stanno attraversando situazioni difficili (o semplicemente passare per una tazza di t\u00e8 o aiutare le persone quando cambiano casa, ecc.)<\/p>\n

QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO:<\/strong>
\nSposarsi e formare una famiglia. Trovare il giusto equilibrio tra lavoro e vita domestica. Sviluppare una piccola attivit\u00e0 di affitto di alloggi per studenti. Diventare amministratore delegato dell'azienda di famiglia (anche se questo obiettivo \u00e8 tutt'altro che raggiunto, perch\u00e9 ho grandi progetti per portare l'azienda a nuovi livelli). Completare un master e un dottorato di ricerca.<\/p>\n

IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI<\/strong>:
\nMi ha insegnato ad essere paziente e a concentrare le mie energie su qualcosa, tutto \u00e8 possibile. Un sorriso ben piazzato fa molta strada e apre molte porte (letteralmente). Bisogna essere positivi e non soffermarsi su ci\u00f2 che non \u00e8 possibile, ma concentrarsi su ci\u00f2 che si pu\u00f2 fare, \"dove c'\u00e8 una volont\u00e0 c'\u00e8 un modo\".<\/p>\n

COSA VOLETE CHE IL MONDO SAPPIA DELLA LGMD?<\/strong>:
\nNon dare per scontata la propria salute, se vedono qualcuno in difficolt\u00e0, sia esso disabile o semplicemente anziano, chiedono di poterlo aiutare. Mettere i propri problemi in prospettiva e non lamentarsi per cose insignificanti.<\/p>\n

SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE:<\/strong>
\nMi piace pensare che andrei in macchina fino a una spiaggia, mi toglierei le scarpe, camminerei all'inizio e poi correrei sulla sabbia, farei una nuotata in mare e poi mi rilasserei sulla spiaggia. Sdraiarmi sull'erba al sole di una calda giornata estiva. In realt\u00e0 probabilmente mi siederei e poi mi alzerei e poi mi siederei e mi alzerei ancora e ancora perch\u00e9 potrei. Sarebbe bello tornare a sciare e magari a fare immersioni, ma in realt\u00e0 sarebbe bello poter pulire la casa, cos\u00ec mia moglie potrebbe prendersi il fine settimana libero mentre io faccio la spesa, cucino e in generale la vizio.<\/p>\n

\u00c8 un sogno che credo diventer\u00e0 realt\u00e0 per noi un giorno, ma nel frattempo non voglio trattenere il fiato lasciando che la vita mi passi davanti, ora \u00e8 il momento di realizzare le cose nonostante la disabilit\u00e0.<\/p>","protected":false},"excerpt":{"rendered":"

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