LGMD "스포트라이트 인터뷰"

이름:  Rosamund  나이: 43 years old

국가: England UK

LGMD 하위 유형: Not known; I am still going through the tests with the John Walton Muscular Dystrophy Research Centre in Newcastle UK.

몇 살에 진단받으셨나요?: Following a medical through work in February 2017 the doctor was concerned with my muscle function. The suggestion that it was a type of muscular dystrophy was made in January 2018 after paying to see a neurologist privately in London.

첫 증상은 무엇이었나요?:

I have suffered lower back pain for as long as I can remember. I fractured my back (lumbar number 4) in my early 20’s whilst show jumping; I struggled with my left hip and suffered increasing lower back pain and knee pain post the incident. I was tripping and falling occasionally for no reason. All the specialist that I saw attributed the symptoms to my back fracture apart from a hip specialist I arranged to see privately. My hamstrings, adductors and quads had pretty much switched off. The physio team got them working again but no matter how hard I worked we were not able to build up the strength. It was at that point I was advised to see a neurologist.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

Not diagnosed. My full sister suffers with very mild weakness in her arms.

LGMD와 함께 생활하면서 가장 큰 어려움은 무엇이라고 생각하시나요? 가장 큰 어려움은 무엇인가요?

I have always been very active and love to be busy. I used to always cut it fine to get somewhere.

The biggest challenge is not being able to move quickly, climb stairs and generally rush about.

If I am commuting and I need to keep up with the crowd, carry a bag or am very tired I have to use a walking stick which has took some getting used to. If I am honest I really hate it.

가장 큰 성과는 무엇인가요?:

From a young age I was keen to experience things and enjoy my life. I have travelled, worked in Uganda for a charity, played lots of sport and worked for the Olympic Delivery Authority in London building the 2012 games venues. I work in occupational health and safety and my time with the Olympic movement was the best and I am grateful at that time I had the energy and ability to do the commute and fully participate. Africa was an experience and a half; I don’t think I could do that now so my greatest achievement is getting on with my life, creating and taking opportunities. I am currently working on a major infrastructure project in the UK; I love major projects so getting to still do that and still horse ride (well sort of!) are accomplishments for me.

LGMD가 지금의 당신이 되기까지 어떤 영향을 미쳤나요? 어떤 영향을 미쳤나요?

I am still getting on with my life and creating opportunities but it’s different now. I used to be pretty fearless; however limited mobility, being unsteady at times and tired does affect confidence. That’s been tough to get my head round. When I was told it was probably a muscular dystrophy I cried in private every day for 6 months. The internet is an amazing resource but it can also be damaging. I could end up as I am now, a little worse or in a wheelchair on a respiratory with a pacemaker if I accepted all I was reading online. I didn’t tell a soul; I had no idea what to say or how to explain it. I was frightened I would lose my husband and my job. Who wants someone who can’t get about unaided especially in a construction environment?… I was facing a change I couldn’t control, I felt trapped and vulnerable.

I have learnt that you cannot control everything, to appreciate the here and now. I recall years ago taking a break to quickly walk my dog in-between working on the laptop. It was a standard Friday thing. Horse chores completed early morning, laptop on, quick whizz round the field at lunchtime. Laptop off about 6…glass of wine at 7! I don’t recall the scenery much or the stupid things my dog used to do other than they were stupid and normally involved me apologizing for him. I remember being glued to the phone during those walks. When I with my animals now I appreciate them, I appreciate the trees, the smells and the birds singing. I enjoy the here and now. I value the things I still have; my sight, my hearing and my sense of humor.

LGMD에 대해 전 세계에 알리고 싶은 내용:

I jokingly describe it as an inconvenient condition that means I have to eat less and miss out on the extra slice of cake. On a serious note its really crap; the brain is amazing but cruel. I sometimes somehow forget I have the condition and go to move and just crumple. Having to think about how you walk and move about is exhausting. Fortunately, I have lots of natural energy that gets me through most days.

만약 내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇입니까?:

Always wanting to pack a day full of stuff it would start with the night before; I would dance all night and have a few too many. I would insist on walking back home (I am imagining my perfect day is during the British summer when we actually get a good day) via an Indian or Chinese restaurant.

After falling asleep on the sofa with the dog I would eventually wake up and head to bed; crawling up the stairs due to a hangover rather than a muscle wasting disease. I would probably take a cup of tea with me which would remain by the bed until morning.

I would be up and out for an early morning horse ride with friends; having a good canter up the nearest hill to clear my head. The next task would be a lovely long dog walk up the biggest hill I could find and a pub for hair of the dog if I can face it and lunch with my husband. By the afternoon I would be snuggled up on the sofa with a pot of tea and a ton of chocolate.

I would be tired because I had not had any sleep and a load of fresh air. That “good tired” feeling.

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