The what, how, where and why of Limb Girdle Muscular Dystrophy

The what, how, where and why of Limb Girdle Muscular Dystrophy

DEFINITION – 

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.

Carer’s need caring too

Carer’s need caring too

 

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.

 

It Takes a Village to Create a Quilt

It Takes a Village to Create a Quilt

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.

Thanks for visiting my blog - where I look forward to us sharing and connecting with each other as we go about our everyday inclusive lives. We can connect here too:

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The what, how, where and why of Limb Girdle Muscular Dystrophy

I have updated my blog site to not only include stories of my life but #LGMD info that is really quite interesting . Pop on over and subscribe - Id love to see you 😊 💃  #limbgirdlemusculardystrophy #thewhathowwherewhyoflimbgirdlemusculardystrophy #wheelchairlife #education #mobility #inclusive #leanneability @leannes_wheel_life
  • Our local restaurant @the.butlers.pantry was a great venue to kick off this glorious Spring day . Fully #accessible and #inclusive with helpful and friendly staff we thoroughly enjoyed our Holy Hock and Brioche French Toast mid morning meals. No need to eat for hours now !! My #wheelchair was defs more comfy than their metal seats which aren't too bad for an hour or so. There are 2 #accessiblecarparks outside the door and a well fitted out #accessiblebathroom ... totes recommend for anyone local or driving through to the #Dandenongs. -------------------------------------#leanneswheellofe #leanneability #melbourneiloveyou #melbourne #limbgirdlemusculardystrophy #LGMD #
  • Carer's need caring too . #carersaustralia 7th Annual International Conference. Join stakeholders, providers and Carers and n Adelaide in October . Lots of infuriation , activities and insights into the future of caring in #Australia. We can't ignore our 27million young unpaid Carers in particular . Check out my latest post on 'Carer's Need Caring Too' ... link to my website in bio 😊👍
  • Oh Gaz and your  #homemadepizza you've done it again - 10minutes to go and you can get into my belly #pizza #homemade #sundaynight #culinary #delight
  • Thanks to my small team of #generous #gardening #friends and #family my small #backyard always has some #beauty in it #orchid  To read more about how my village works please read my latest post. Link in bio 😊#leanneability #wheelchair #lgmd #limbgirdlemusculardystrophy #pushliving
  • #renovation #inclusive Elevator entrance design #leanneability #livingitup #firstfloorstudio  the way to my #makingroom #happiness #lgmd #wheelchairliving #homelift #homeelevator
  • When you have special friends @sienna68 #luckytohavewonderfulfriends #orchid #beauty
  • Feeling the hygge @beerdeluxefedsquare with a good friend and a great husband 😍#hygge #hyggerly #leanneability #melbournecitywheeling
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