Posted in Acceptance, Carers, disabilities, facioscapulohumeral muscular dystrophy, find a cure, fshd, Inclusion, Job share, livelovelife, love life, Opportunities, Passion, sharethedream, volunteer, Wheelchair friendly

INCLUSION, ACCEPTANCE and OPPORTUNITIES …

Inclusion, Acceptance and Opportunities for us all ……. who live with a disability.

We want INCLUSION into mainstream

We want ACCEPTANCE in our community

We want the OPPORTUNITY to shine !!!

inclusion1Inclusion is important for our wellbeing. There is an awful lot of people in our communities with some form of disability suffering in silence because they are made to feel different.

So next time a person with a disability crosses your path, give them a smile, say hi, show them some love.


 

I want to talk about employment opportunities for people with a disability … those of us who can work, who want to work, yet don’t get the opportunity to do so.

I’ve come across employers who still have that perception of employinga...Disabled_employment someone with a disability as being too hard, too high maintenance, even though we may be qualified for the position.

Are you aware that a person with a disability can and do work harder than most because

  • we appreciate and value the position given to us
  • we feel we need to prove we’re capable of doing the work
  • we don’t want to let our employer down

I know its wrong for us to think this way but it is what it is …..

I want to say to employers – “take a chance on us, we won’t let you down”. So the next time your looking to fill a position, think about employing someone with a disability. take a chanceThere are government agencies out there willing to work with you the employer to setup a work space for your employee. They’ll work with you both to get it right. There are other government incentives out there to that including wage subsidies.

I’m not saying everyone with a disability can and should work, I’m saying those of us who want to just need the opportunity to show our worthiness, please give us a chance.

https://www.jobaccess.gov.au/ – this link is for EMPLOYERS and EMPLOYEES (with a disability) wanting help to get into the work force.


 

I was fortunate enough to have had a couple of GREAT employers fortunatethroughout my working life. I want to share with you how my last position came about. It was in a Pharmacy here in my local community. The position was advertised as a part-time but when I arrived for the interview it turned out to be a full-time position they we’re wanting to fill. I was so disappointed, it would have been perfect. I explained to the manager about my disability and how I couldn’t possibility work full-time. It would have been too tiring for me. I was ready to leave his office without the position, news-1when he said to me – “Tracey, we would love to have you work for us, would you give me a couple of days, I’m sure I can find something for you”.  I left his office thinking to myself – “don’t get your hopes up Tracey, no ones that nice”. Well I was so very wrong …. Mr Colley (my employers name) created a position for me. I was given 4 hours a day, 5 days a week, on the afternoon/evening shift. It was the quietest time of the day and would be less taxing on me. I worked that position for about 6 years. The pharmacy changed hands and my new employer was just as understandable. By then my disability was progressing and standing for 4 + hours was becoming difficult, so he allowed me to transition into an office position. I was still working 4 hour a day, 5 days a week. When it came time for me to slow down some more, Henry (my employer) suggested job share, logowhere I could share my position with another person. That other person turned out to be my sister. Job share is a fantastic idea and it allowed me to continue working for another few years.

I worked with some of the most compassionate and caring people throughout my working life. I had the support and understanding that came with my limitations, yet I never let them see how much I struggled on the inside. I struggled with inner demons most my working life. Acceptance of my disability, self worth and embarrassment. I was so embarrassed of the way I walked, it was my No.1 struggle at that time in my life and here I was in the public eye daily. Its was bad …. its was a very unhappy time for me.

I now feel so grateful to have had the opportunity to work. It gave me a purpose, something I needed yet I wasn’t aware of it at the time. I stopped working in 1996. If only I had the support I have now ….

Inclusion helped my focus on something other than myself during a time in my life where I could have just simply given up.

I hope that someday we can all live in a world of INCLUSION, ACCEPTANCE AND OPPORTUNITY for us all.

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 ...
Posted in Carers, disabilities, facioscapulohumeral muscular dystrophy, find a cure, fshd, pain, Uncategorized

26th November 2013 11.55pm – that call …

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. a475261472_1280x720https://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 5451016530_052a1e10a2grandmother 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 hustlers 6aone 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.untitled 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.

light-bulb-clipart-epiphany-3Ding 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”. 9364d

  • 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.original

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 953514865bf6b8007762ec3ac2403446--rheumatoid-arthritis-quotes-endometriosis-quotescouldn’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.

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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 ...