On this day 4 years ago

a beautiful caring loving lady farewelled this life forever.

Sandra Maureen Jackson nee Bennett 70 years of age.

MY MUM ….

Mum and I were both diagnosed with FSHD 3 months apart in 1983. Mum however had been treated all her life as a Polio patient.  In her early teens the docotors diagnosed and treated Mum for Polio.

Around the age of 12-13 Mum spent a whole year in a hospital ward in Melbourne strapped into a contraption called a Double Thomas Splint. https://vimeo.com/95363953 This is how Polio patients were treated in that era. Mum was also given calipers to wear on her release from hospital. The doctors informed my grandmother that mum would most likely have to wear them for the rest of her life. This did not sit well with my grandmother,  so after a few months of what my grandmother considered torture, she couldn’t watch her daughter in these things any longer, so she removed them from my mums legs, never to be worn again. Yes mum had a limp but during her late teens early twenties Mum was a dancer – yep she loved to Rock ‘n’ Roll. A “kick up ya heels kind of gal”. She also walked everywhere, the family didn’t own a car, so it was walk, bus or train.

Still thinking she was a polio patient,  mum just got on with her life. She married, had children – three of us. Boy, girl (me) and girl.

She starting to struggle physically….. I remember as a child we – my brother and I would help take the washing basket downstairs to the laundry room and then we would bring it back up when mum had taken the clothes off the line. It was just what we did. I also remember an incident on the way home from the shops one day. Mum was pushing my sister in the pram on the road, my brother and I were walking beside her on the footpath when mum tripped and fell to the ground scraping her knees to the point where they were bleeding. We freaked out of course, mum tried hard to get up but to no prevail she just couldn’t do it herself so she had us, my brother and I go to the house that we were outside of, knock on the door and tell the person that mummy has fallen over and she can’t get up. I can’t recall what happened after that.

As her physical ability declined we all just accepted it for what it was and got on with life. The older I got the more responsibilities I took on. I remember Dad and I would do the grocery shopping every Saturday morning. Mum would come with us and do the weekly banking then sit and wait for us to finish.

During my early teens I was considered a clumsy child. There were no real signs that there was anything wrong with me.

• I fell over occasionally – just clumsy
• I fell off my bike occasionally – just really bad at riding a bike
• I ran like a crazy weirdo – just a weirdo
• I detested sports of any kind – just a nerd

Whilst I was being clumsy, weird, nerdy, very bad at riding a bike teenager, mum was doing the tripping thing more frequently and it was becoming a real problem for her. The doctors told her it was foot drop caused by the polio but fixable with surgery. They were going to fuse her ankles to stop her from tripping over her own feet. So mum went ahead with what was to be the first of three very painful surgeries. The reason for three surgeries is because one was set wrong. She would come home from these surgeries with metal rods coming out of her ankle and lower leg and in plaster. Super scary looking.

Again no clue she had FSHD. So all these surgeries, calipers, the double thomas splint were all affecting her muscles unbeknownst to anyone. The one thing that finally jumped out and was noticed by her local GP was the fact her muscles were getting weaker and she was losing strength – not consistent with Polio patients.

Mum was sent off to the Royal Brisbane Hospital for tests and finally diagnosed with Facioscapulohumeral Muscular Dystrophy,  a muscle wasting disease that was hereditary. The doctors asked about us, her children. They explained that there was a 50/50 chance that she may have passed this disease onto one or all of us.

Ding ding ding, the bells went off in mums head and guess which direction she pointed the doctors in – yep my direction……

I was 16 years old being sent off to a big city hospital on my own. I came from a sleepy seaside town 40 minutes from Brisbane City, so yes everything was big and scary.

I spent that week in the Royal Brisbane hospital having tests, a biopsy was taken from my arm muscle (humeral), photos taken for research purposes and this seriously painful test that involved some big a%#e needles that were attached to a machine then pushed into my muscles, I was then asked to tense the muscle so the doctors could record the strength of that particular muscle. It was the longest and scariest week I have spent alone in a hospital.  A few weeks later we got the good news – “you have FSH Muscular Dystrophy”.

• It’s not life threatening
• you’ll live a full life
• you’ll probably have to use a wheelchair at some stage
• and there is no cure or treatment for this disease

Wow …. so we’re not going to die from it, that’s got to be a plus.

How wrong they were !!!

This disease weakens the facial (facio) , the shoulder and back (scapular) and the upper arm muscles (humeral). However it doesn’t stop there. There is weakness in the hips, trunk and lower limbs too.

The impact on daily life makes even the simplest tasks complicated. To live with this disease means living with pain, fatigue and for some social isolation that comes with being reliant on mobility aids.

You know my mum never complained, not once did I ever hear ask “why me”. She just got on with life and made the most of it.

I became more and more aware of the term “suffering” as I watched Mum deteriorate right in front of me. This disease is cruel.

During the last few years of Mums life her ability to do things for herself had diminished greatly. She couldn’t sit up straight without being propped up, she could no longer be hoisted from her bed to shower or toilet because it was far too painful for her. She couldn’t brush her hair or her own teeth; scratch her nose or even blow her nose; feed herself or simply take a drink; lift her arms enough to turn the page of a book, sign her name, roll or reposition in bed without help; then eventually swallowing and even talking became difficult. Then there was the excruciating pain that was persistent. Control of her own life was completely taken from her.

In the end this disease did take Mums life. It distorted her body so severely that her ribs were squashing her lungs making it difficult for her to take in enough air to breath.

If we don’t find a cure for this damn disease in my lifetime – then this could very well be my future.

I dedicate this post to an amazingly brave, strong, selfless, beautiful lady ….. My Mum.

Facebook – fb.me/lifesjourneyonwheels

Messages –  m.me/lifesjourneyonwheels

I have another Facebook Page – What is FSHD? Awareness and Fundraising Page.

The condition I was born with.

FACEBOOK –fb.me/whatisFSHD

MESSAGES – m.me/whatisFSHD

 Live life like there's no tomorrow ... and enjoy it ...