LGMD, MD, MS, MND…huh??

LGMD, MD, MS, MND…huh??

Clearing up the acronym confusion

If you have had the time to run over my previous musings you will know that I have a condition called Adult Onset Limb Girdle Muscular Dystrophy. LGMD is the preferred acronym for those of us that enjoy brevity in our writing (unlike this sentence) and do not enjoy the challenge of verbalising each sound as we plonk away at the keyboard attempting to spell really long and complicated medical words correctly; and/or really don’t quite understand what each word means as it’s such a new concept and therefore hard to recall the full name.

When I talk to people about my condition the most common questions that I receive are related to confusion between other neurological disorders that symptomatically seem to present similarly, their acronym is very similar and the conditions are, generally, more familiar to more people. The most popular being Multiple Sclerosis (MS) and Motor Neurone Disease (MND).  I clearly recall my General Practitioner (GP) suggesting a possibility of Muscular Dystrophy (MD) when receiving suspect blood tests before sending me off to my Neurologist; I had a vague idea that it was related to muscle weakness purely based on the name and not through any real experience or understanding.

I would like to clarify the definitions and try to dispel some of the confusion. Please note that I have no medical background besides band aiding cut knees, wiping runny noses and hiding heart worm tablets in cheese (that’s for the Dog) but I have tried to research accurately to cover the basics of each condition I hope.

All That We Are

All That We Are

Imagine a situation where the voluntary action of rising from a seated position is no longer available to you. You now require assistance from others for every activity involving repositioning.

This happened to me very suddenly and very recently, and it has made me think a lot about our lives and who we really are – outside of our physical beings.

Ramping up the mods – it’s a dogs life

Ramping up the mods – it’s a dogs life

IKEA flat packs – so amateur

After a few hour delay in the beginning of our long awaited lift installation we now have a few bodies working around the flat pack mess created on Friday from the parts delivery. While our King of the House, Labrador, Banjo suffers the indignity of being outside, yet another stage of our home modifications is well underway. With a 10 day estimated completion time I am sceptically excited and impatient. There will still, ofcourse, be new flooring to lay upstairs and completion of plastering and painting to finish.

Everyone loves it when the mailman arrives …sometimes more than others

Everyone loves it when the mailman arrives …sometimes more than others

Catch me I’m falling!

Sorry to tell you this, but when I say “catch me, I’m falling”, it is not because you have induced a swoon. This isn’t a pass; it is the unfortunate effect of having my butt, hip and thigh muscles gradually disappear. And getting up unassisted has not been a move in my repertoire for sometime.

I’m sure a local Aussie Post delivery worker was happy to know I wasn’t trying out the damsel in distress routine to gain his romantic attentions when he found me soaking up the rays on my friends front lawn one fine sunny day a few years ago.

Sharing, connecting and enlightening while we go about our everyday inclusive lives.

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  • Feeling the hygge @beerdeluxefedsquare with a good friend and a great husband 😍#hygge #hyggerly #leanneability #melbournecitywheeling
  • #ensuite #renovation #rollinshower #wetroom #modification half way mark ... I am quietly excited 😊 #rollunderbench .hey there's a sink missing . Might be worth no sink to admire the full bench top forever 😉👌🏽
  • LGMD, MD, MS, MND... huh? I hope I succeed in explaining the differences between 3 seemingly similar neuromuscular disorders that can and have been mistaken for each other . Check out my latest blog. Web link  in bio.
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  • Gotta hate it when you call the lift down before you get in it 😂#leanneability #theliftshopaustralia #homerenovations #stoopidme #classiclifterrors #liftrookie 😳
  • Next #renovation #modification stop - the #ensuite . #rollunderbasin #rollinshower #devonshirehandmadesubwaytiles #oneseektogotilstart #lgmd #limbgirdlemusculardystrophy #leanneability #wheelchairliving #inclusive #barndoor #pushliving @beaumonttiles @themerrybarn .... full finished lift update to follow 💃👌🏽
  • Chilly sunny Sunday walk around Jells Park - 10oc feels like 7oc in the breeze 😆#limbgirdlemusculardystrophy #wheelchair #sundaymornings #freshairdelight #dontmeantowhinebutbringonspring #ultimateweathercomplainer #labrador
  • #limbgirdlemusculardystrophy #inclusive #lgmd #leanneability #firstmajorstageexecuted #liftoff still to do #plaster #painting #flooring #cleaning #decorating #wheelchairliving #wheelchairlife full blog story on completion of #homemodifications #homerenovations #slippersonshow #homecomfort
  • #circuit #chip #diagnostics #programmablelogicscontroller #relays #italian #isolator #shaft #dynamicload #serialinterfaceboard #waaahhh enough with the tech talk I just wanna go upstairs already
  • We have movement !!! Nearly there #wheelchairlife #leanneability #newlift #lgmd #limbgirdlemusculardystrophy #pushliving #inclusive #homerenovations #homemodifications #accessiblehome #accessibleliving @liftshopaustralia
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