{"id":651,"date":"2015-05-07T14:15:13","date_gmt":"2015-05-07T19:15:13","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=651"},"modified":"2015-05-07T14:15:13","modified_gmt":"2015-05-07T19:15:13","slug":"claudette","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2015\/05\/07\/claudette\/","title":{"rendered":"INDIVIDUAL WITH LGMD: Claudette"},"content":{"rendered":"

05\/7\/2015<\/p>\n

\u540d\u79f0<\/strong>: Claudette\"LGMD1A<\/a>
\n\u5e74\u9f84<\/strong>:51 \u5c81
\n\u56fd\u5bb6<\/strong>:\u52a0\u62ff\u5927
\nLGMD \u5b50\u7c7b\u578b<\/strong>: LGMD1A \/\u00a0Myotilinopathy<\/p>\n

\u60a8\u5728\u51e0\u5c81\u65f6\u786e\u8bca<\/strong>:<\/p>\n

I was diagnosed at the age of 39.<\/p>\n

\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n

My first symptoms included: difficulty with stairs, shoulder pain, shuffling or dragging my feet<\/p>\n

\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD<\/strong>:<\/p>\n

Yes, my father, my brother and my sister also have LGMD.<\/p>\n

\u60a8\u8ba4\u4e3a\u60a3\u6709 LGMD \u7684\u6700\u5927\u6311\u6218\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n

The challenges I face are minimal due to tremendous support from my family. I am hard pressed to find any one main challenge for me. I think my main difficulty though is watching my husband trying to do it all! There are so many household chores I used to do and can\u2019t anymore, laundry, cleaning, meal prep, outside chores like cleaning vehicles or mowing the lawn! We used to be a great team but of course now he has taken over these tasks. He is my primary caregiver. He also holds a full-time and very demanding job. I am so grateful for his amazing love and support!<\/p>\n

I know this is a very common issue for many people, not only for those of us living with LGMD. I think my disease is often harder for my family than it is for me.<\/p>\n

\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48<\/strong>:<\/p>\n

My marriage, soon to be 29 years, and raising two fine boys to become strong, independent and hard working adults. Our eldest and his wife just became parents, so now I am proud to say I\u2019m a grandmother to a beautiful baby girl!<\/p>\n

lgmd \u662f\u5982\u4f55\u5f71\u54cd\u4f60\u6210\u4e3a\u4eca\u5929\u7684\u81ea\u5df1\u7684\uff1f<\/strong><\/p>\n

My father was in a wheelchair for most of my childhood. We lived in a rural area where LGMD was rare and unfamiliar to medical people in the 1970\u2019s. As a result, his condition was defined as a \u201crare neurological disorder\u201d. He died in 1985. In the early 90\u2019s his muscle biopsy from the 1970\u2019s was matched to my brother\u2019s, confirming LGMD. Throughout his illness, my father demonstrated a very off-beat sense of humor and a positive attitude. His influence has made me a rather positive person. My dad and my brother have inspired in me the courage to tackle anything LGMD will hand me. I live by the words \u201cit could always be worse!\u201d<\/p>\n

\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/p>\n

Sometimes we don\u2019t fit into a box. A hundred people could be diagnosed with LGMD at the same time, and most likely all of us will progress at different rates.<\/p>\n

\u5982\u679c\u660e\u5929\u5c31\u80fd \"\u6cbb\u6108 \"\u4f60\u7684\u8001\u5e74\u75f4\u5446\u75c7\uff0c\u4f60\u9996\u5148\u60f3\u505a\u7684\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n

If I were to be cured tomorrow, I would do something spontaneous. Something I wouldn\u2019t have to plan or anticipate due to barriers, my own or otherwise.<\/p>","protected":false},"excerpt":{"rendered":"

05\/7\/2015 Name: Claudette Age: 51 yrs. old Country: Canada LGMD […]<\/p>","protected":false},"author":1,"featured_media":1967,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,39],"tags":[38,40,41],"class_list":["post-651","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1a","tag-canada","tag-lgmd1a","tag-myotilinopathy"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Claudette<\/title>\n<meta name=\"description\" content=\"Claudette, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/zh\/individuals-with-lgmd-interviews\/2015\/05\/07\/claudette\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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