患有 LGMD 的个人: 安德鲁
01/24/2015:
年龄: 34
国家:英国
LGMD 子类型: LGMD 2A / Calpainopathy
AT WHAT AGE WHERE YOU DIAGNOSED: 18 yrs. old
您最初的症状是什么?:
I would fall over when trying to run & also struggling standing up from a chair or the ground.
您是否有其他家庭成员患有 LGMD:
No , I’m the only one, no history on either parents side of the family.
您认为患有 LGMD 的最大挑战是什么?:
As a full time electric wheelchair user the biggest challenge I face is using the toilet. Being sat down so much I find I suffer from IBS from time to time and being unable to stand to transfer onto & off the toilet it makes traveling a bit of a challenge. Traveling by airplane is also very challenging.
We have an 18 month old baby (our first) & at the moment my biggest challenge is being a good dad, especially when I can’t lift him up or get on the floor & play cars with him.
Having to rely on family & friends for simple DIY things such as putting up a curtain or a shelf. Getting used to having caregivers come into the family to help out
Feeling you should be able to help family & friends when they are going through tough situations (or just simply popping round for a cup of tea or helping people when they move house etc.).
你最大的成就是什么?
Getting married and starting a family. Finding the right balance between work and home life. Developing a small student accommodation rental business. Becoming Managing Director of the family business (although this is far from accomplished as I’ve got great plans to take the business to new heights). Completing a Masters and PhD degrees.
lgmd 是如何影响你成为今天的自己的?:
It has taught me to be patient and if I focus my energies on something anything is possible. A well placed smile goes a long way and opens many doors (literally). You have to be positive and not dwell on what’s not possible but concentrate on what you can do , “where there is a will there is a way.”
您希望世界了解 LGMD 的哪些方面?:
Not to take their health for granted , if they see someone struggling , be they disabled or simply old ask if they can help. Put their own problems into perspective and not moan about things that are insignificant.
如果明天就能 "治愈 "你的老年痴呆症,你首先想做的是什么?
I like to think I would drive down to a beach , take my shoes off , walk at first and then run over the sand , go for a swim in the sea and then relax on the beach. Lay down on the grass in the sunshine on a warm summers day. In reality I would probably just sit down and then stand up and then sit down and stand up over and over because I could. It would be great to go skiing again and maybe scuba diving but really it would just be nice to be able to clean the house so my wife can take the weekend off while I shop , cook and generally spoil her.
It’s a dream which I believe will be a reality for us one day but in the meantime I’m not holding my breath letting life pass me by , now is the time to achieve things despite the disability.