{"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\/de\/individuals-with-lgmd-interviews\/2015\/01\/24\/151\/","title":{"rendered":"EINZELPERSON MIT LGMD: Andrew"},"content":{"rendered":"

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

\u00a0NAME<\/strong>: Andrew\u00a0\u00a0\u00a0\u00a0 \"LGMD2A<\/a><\/span><\/p>\n

AGE<\/strong>: 34<\/span><\/p>\n

LAND<\/strong>: Vereinigtes K\u00f6nigreich
\n<\/span><\/p>\n

LGMD Unter-Typ<\/strong>: LGMD<\/span> 2A \/ Kalpainopathie<\/span><\/p>\n

IN WELCHEM ALTER WURDE BEI IHNEN DIE DIAGNOSE GESTELLT?<\/strong>: 18 Jahre alt<\/span><\/span><\/p>\n

WAS WAREN IHRE ERSTEN SYMPTOME?<\/strong>:
\nIch fiel um, wenn ich versuchte zu laufen, und hatte auch Schwierigkeiten, von einem Stuhl oder vom Boden aufzustehen.<\/p>\n

HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE AN LGMD LEIDEN<\/strong>:
\nNein, ich bin der Einzige, der keine Vorgeschichte auf beiden Seiten der Familie hat.<\/p>\n

WAS SIND F\u00dcR SIE DIE GR\u00d6SSTEN HERAUSFORDERUNGEN IM LEBEN MIT LGMD<\/strong>:
\nAls Vollzeit-Elektrorollstuhlfahrer ist die gr\u00f6\u00dfte Herausforderung f\u00fcr mich die Benutzung der Toilette. Da ich so viel sitze, leide ich von Zeit zu Zeit an einem Reizdarmsyndrom, und da ich nicht aufstehen kann, um auf die Toilette zu gehen oder sie zu verlassen, wird das Reisen zu einer kleinen Herausforderung. Auch das Reisen mit dem Flugzeug ist eine gro\u00dfe Herausforderung.<\/p>\n

Wir haben ein 18 Monate altes Baby (unser erstes) und im Moment besteht meine gr\u00f6\u00dfte Herausforderung darin, ein guter Vater zu sein, vor allem, wenn ich ihn nicht hochheben oder auf den Boden steigen und mit ihm Autos spielen kann.<\/p>\n

Sich auf Familie und Freunde verlassen zu m\u00fcssen, wenn es um einfache Heimwerkerarbeiten wie das Anbringen eines Vorhangs oder eines Regals geht. Sich daran gew\u00f6hnen, dass Pflegekr\u00e4fte in die Familie kommen, um auszuhelfen<\/p>\n

Das Gef\u00fchl, dass man in der Lage sein sollte, Familie und Freunden in schwierigen Situationen zu helfen (oder einfach nur auf eine Tasse Tee vorbeizukommen oder Menschen bei einem Umzug zu unterst\u00fctzen usw.).<\/p>\n

WAS IST IHRE GR\u00d6SSTE ERRUNGENSCHAFT:<\/strong>
\nHeiraten und eine Familie gr\u00fcnden. Das richtige Gleichgewicht zwischen Arbeit und Privatleben finden. Aufbau eines kleinen Vermietungsunternehmens f\u00fcr Studentenwohnungen. Gesch\u00e4ftsf\u00fchrerin des Familienunternehmens werden (obwohl das noch lange nicht erreicht ist, denn ich habe gro\u00dfe Pl\u00e4ne, das Unternehmen zu neuen H\u00f6hen zu f\u00fchren). Abschluss eines Master- und eines Doktoratsstudiums.<\/p>\n

WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND<\/strong>:
\nEs hat mich gelehrt, geduldig zu sein, und wenn ich meine Energie auf etwas konzentriere, ist alles m\u00f6glich. Ein gut platziertes L\u00e4cheln geht einen langen Weg und \u00f6ffnet viele T\u00fcren (buchst\u00e4blich). Man muss positiv sein und sich nicht mit dem besch\u00e4ftigen, was nicht m\u00f6glich ist, sondern sich auf das konzentrieren, was man tun kann: \"Wo ein Wille ist, ist auch ein Weg.\"<\/p>\n

WAS SOLL DIE WELT \u00dcBER LGMD WISSEN?<\/strong>:
\nIhre Gesundheit nicht als selbstverst\u00e4ndlich ansehen, wenn sie sehen, dass jemand Probleme hat, sei er behindert oder einfach nur alt, und fragen, ob sie helfen k\u00f6nnen. Ihre eigenen Probleme in die richtige Perspektive zu r\u00fccken und nicht \u00fcber Dinge zu jammern, die unbedeutend sind.<\/p>\n

WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE, WAS W\u00c4RE DAS ERSTE, WAS SIE TUN W\u00dcRDEN?<\/strong>
\nIch stelle mir gerne vor, dass ich an einen Strand fahre, meine Schuhe ausziehe, erst gehe und dann \u00fcber den Sand laufe, im Meer schwimme und dann am Strand entspanne. Ich w\u00fcrde mich an einem warmen Sommertag ins Gras legen und die Sonne genie\u00dfen. In Wirklichkeit w\u00fcrde ich mich wahrscheinlich nur hinsetzen und dann aufstehen und mich wieder hinsetzen und aufstehen, weil ich es k\u00f6nnte. Es w\u00e4re toll, wieder Ski zu fahren und vielleicht tauchen zu gehen, aber eigentlich w\u00e4re es einfach nur sch\u00f6n, das Haus zu putzen, damit meine Frau das Wochenende frei hat, w\u00e4hrend ich einkaufe, koche und sie generell verw\u00f6hne.<\/p>\n

Es ist ein Traum, von dem ich glaube, dass er eines Tages f\u00fcr uns Wirklichkeit werden wird, aber in der Zwischenzeit halte ich nicht den Atem an und lasse das Leben an mir vorbeiziehen, jetzt ist die Zeit, um trotz der Behinderung etwas zu erreichen.<\/p>","protected":false},"excerpt":{"rendered":"

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