Limb Girdle Muscular Dystrophy is the term given to a large group of rare degenerative muscle wasting conditions. There are many causes due to mutations in various genes and can be diagnosed with protein and genetic analysis. This condition does not seem to be sexist, bigoted or racist and affects people from all around the world without prejudice.
The atrophying of the muscles that define Limb Girdle Muscular Dystrophy occurs in the voluntary proximal muscles – those closest to the body. Weakness generally begins with the lower body ; glutes, hip and pelvic area, quads and hamstrings, followed by the upper body; shoulder, biceps and triceps. A small group of people with Limb Girdle Muscular Dystrophy also develop respiratory issues.
Limb Girdle Muscular Dystrophy can alter in severity of symptoms from individual to individual with most requiring some form of walking aid while others never require a wheelchair. It is thought that less severe symptoms can be experienced and occur and at a slower rate of progression with a later (late teen or adult) onset of the condition.
My life would be so unimaginably ‘less than’ without my wonderful, supportive, unpaid carer AKA my husband, Gaz, (despite his frustrating and endearing husband like faults) since the symptoms of Limb Girdle Muscular Dystrophy have taken up an unwelcome residency in my body.
And like millions of unpaid and loving carers around the world he doesn’t question his role because he’s that kinda guy and we have always been a team. This caring role has ramped up in significance quite rapidly over the last few years in particular and has unquestionably come with compromises, some of which I have mentioned previously. So much more consideration and planning in every aspect of our well loved life; social events, finances, work roles, home renovation decisions and car choices.
Sometimes it takes a village to create…many outcomes.
What does your village look like?. We all want to live independently and be self-reliant, and fortunately, most of us can forever. But even for the healthiest of us, the strong in mind and body, the determined, the driven and the in-between, we all rely on those around us.