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 ...
Posted in #BISC #gameshapers #gc2018 #livelovelife #sharethedream #passion, Carers, Uncategorized

International Day of People with a Disability 3 December 2017 …

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Let me start by saying …. Let’s celebrate International Day of People with a Disability. Lets make this world a more inclusive place for all those with a disability. Inclusion is important to our wellbeing. There are an awful lot of people in our communities with some form of disability suffering in silence because they are made to feel different.

My name is Tracey and I have FSHD – Facioscapulaohumeral Muscular Dystrophy.

FSH_001

Despite being considered one of the most common forms of muscular dystrophy in adults and children there are no treatments and no cure.

FSHD is commonly associated with progressive weakening of facial, shoulder and upper arm muscles. However, this explanation does little justice to a disease that can rob us of our ability to walk, talk, smile or even eat. The progression often comes in bursts with sudden deterioration followed by periods of no change. Living with FSHD means living with pain, fatigue and the social isolation that comes from being reliant on mobility aids.

I’ve spent over half my life in a wheelchair.  After a bad fall in 2012 it became permanent. I now use a powered wheelchair, which gives me a little independence. However when I travel, I use my manual wheelchair (no independence), its way easier to travel with BUT not so great on my body. I found this out whilst travelling nationally and internationally as an Australian Disabled Rifle Shooter. 16558541_10154400374457705_2003891848_nWhen I travel I have to leave all the good stuff at home. It’s impossible to take the necessary equipment from home on holidays. I just make do if at all possible. Or … hire it. By making do, I put extra stress on my body and find I lose strength quicker throughout the day and I have a lot more pain to put up with.

This brings me to my MISSION – It’s all about Accessibility and Inclusion …..

Like I said before, the past 5 years I’ve had my fair share of travelling around Australia and I’ve found booking an accessible room to suit my needs extremely difficult at times.

As anyone connected to a person with a disability can verify ….. “We all have different needs”.

My mission is …. yet I haven’t worked out just how. I’m going to need a little help with what I have planned. australian_flag_3 I want to travel Australia reviewing and rating some of these so-called accessible rooms so that anyone in a wheelchair looking to travel can book a room with absolute certainty knowing that the room will suit their needs and hopefully make a change to how we (Wheelies) holiday with no added stresses.

I would also like to work with local disability equipment suppliers and the place of accommodation to have equipment made available to these rooms so that people like myself don’t have the added stress or expense of carrying our equipment with us or hiring the equipment when we arrive at our destination.

 

inclusion

Accessibility and Inclusion

My own experience travelling with a team of wheelchair athletes has given me insight as to how we can go about fixing these problems with a few pieces of equipment provided with our room.

I need to do some research regarding prices, who to approach and how to make this work for us all. The ideal solution would be if we could book the equipment while booking a room that meets our needs at NO EXTRA CHARGE …

20170616_154547This is not is not acceptable ….

Our Carer is as important to us as the equipment we use. They need a comfortable bed and a good night rest … NOT a trundle-bed . A disable room should come with 2 beds or a bed that can be split into 2 beds.


When I’m in Adelaide I stay at a beautiful place that has 2 disable rooms available. The first room is the bigger room with a great accessible bathroom, an electric high/low single bed, a double bed, a hoist, a shower/ toilet commode and a wheelie walker on request. Oh …. and a mirror in the bathroom that I can use. The second available room has an accessible bathroom and comes with a Queen size bed only.

The Hotel I use when in Sydney has 6 wheelchair accessible rooms available. The bathroom is user-friendly with the exception of the mirror which is way too high and not user friendly …. how does a girl do her hair and make-up without a mirror ??? The room has 2 Queen size beds that are pure luxury.  If you require the bed to be off the ground to fit a hoist under, they are only too happy to accommodate, they’ll even move the bed around to suit for transfers.

ibis AdelaideThe Ibis in Adelaide has nice rooms, bathroom user-friendly, they will split the King size bed in two to accommodate you and your Carer. The room itself is rather small, I can see it being a problem for anyone who uses equipment to transfer and the bed is not off the ground enough to suit an under bed hoist.

MY IDEA OF A PERFECT ROOM

  • Super great bathroom
  • Bathroom mirror that’s user-friendly … necessary for hair and make-up
  • low pile carpet, easy to wheel on
  • wider door way a plus
  • 2 beds in the room – not trundle beds for the Carer
  • equipment made available on request at no extra cost
  • adjustable bed height
  • room to move
  • great view …. a bonus

Accessible-1

Accessible-Accommodation-1224x752

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I would love your feedback on what YOU think would make a great getaway that’s accessible for you and or a family member with mobility requirements.

INTERNATIONAL DAY OF PEOPLE WITH A DISABILITY FUNDRAISER – that I’m holding http://www.facebook.com/events/1923741157842939/

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, Uncategorized, Wheelchair friendly

Personal Care Givers – what they mean to me …

In 2012 my life changed directions. I went from being able to look out for myself on my own (Independent) to having someone come into my life and care for me on a casual bases.

June 2012 I had a fall and broke my knee. Eeek … Let me just take you back a bit to before this incident. I was using a wheelchair to help me get through the day. I was still walking around the house, however when I got tired I would hop in the chair and take a load off my legs. I could still get in and out of the car okay but I needed assistants with my manual wheelchair getting it in and out of the car, so all in all fairly mobile and able to look after myself. After breaking my knee my life was turned upside down. Not immediately because I wasn’t going to except it.

It was towords the end of 2013 when I realized I needed help. My family work and weren’t available during the day to help me out and my other dilemma was I needed someone who could help me out with my sporting career.

I contacted my client service manager at Muscular Dystrophy Queensland and they helped me get the ball rolling with an application for funding for a personal carer with DSQ. That’s when Linda Delamotte and “YOUR HOME CARE” come into my life and change the way I lived for the better.

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Linda was great. Our first meeting was to get together,  Linda and I and talk about what I needed to make my life easier, less stressed, reduce the pain I was suffering at the time because I was trying to do things that I simply shouldn’t have been doing. We had a great talk, we covered everything from help going to doctors appointments,  shopping,  the dreaded house work and my sporting needs.  Linda had been given fair warning by MD QLD that I was involved in Rifle Shooting and that my carer was going to have to like it too. She needed to be okay with handling a rifle, putting the rifle together before meets, loading it for me and travelling with me to all my competitions (State, National and International competitions).

Linda was amazing. She went back to her office, looked through a list of her staff at the time and found a girl lady who she thought would be compatible. My carer was young, fit, single and ready for an adventure with me.

The staff at Your Home Care are there 24/7 for their clients. Young, old, adventurous, recovering from an illness, respite for families or just a companion to keep you company.

I now have piece of mind and so does my family. I have the care I need and gives me independence.

For more information head over to Your Home Cares website http://yourhomecare.net.au you’ll find contact details and a list of services their staff can provide you.

Thanks to Linda and her staff,  I’m living a great life, stress free and I now represent Australia as a 10m Air Rifle Para-Shooter

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Don’t forget live life like there’s no tomorrow ….. 💜💜💜

You can find me at

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