Posted in Uncategorized

TOP 5 Things that saved me when I was Covid positive…

I thought I was one of the lucky ones that had managed to dodge the covid bullet …

How wrong was I!

Nothing and no one can explain to you how bad this virus can make you feel. Just know that there’s light 💡 at the end of the tunnel and you will make it through to the otherside.

This brings me to the TOP 5 THINGS that helped me make it out the otherside.

#1. VIRTUAL DOCTOR

Once you test positive for covid you are required to register your positive results on the Queensland Health website https://www.qld.gov.au/rat-positive

It walks you through the process step by step. From there you will be advised to do an online Selfcare Check, if you’re unsure whether you should see a doctor or you can call the National Coronavirus Helpline 1800 020 080 https://www.qld.gov.au/health/conditions/health-alerts/coronavirus-covid-19/stay-informed/covid-care-self-checker

In my case, I needed to be admitted to a Virtual Ward. I had a doctor call me within 24 hours of registration to assess my situation and monitor my symptoms. Each day without fail, I received that call. Just knowing I had that someone, a doctor no less, looking after me was a huge relief.

I was sick, very sick during my isolation and required antibiotics for a chest infection. The doctor had the antibiotics, along with a pulse oximeter, couriered from the hospital, straight to my back-door. I can’t tell you how grateful I am to have had these fabulous people looking out for me. I felt safer knowing that someone would call me everyday, no matter what!

#2. DIFFLAM Throat Spray.

Your throat will feel like you’ve swallowed razor blades. No matter how much you try to not to swallow, it will still f#*@ing hurt. Lozenges are a NO! They say suck on a Lozenge and it will ease your pain! NO IT WILL NOT…. if you suck, you have to swallow!

Difflam spray (check with the doctor before using) has an ANAESTHETIC in it, which will 100% numb your throat so that you can swallow. It lasts for a few hours, giving you some relief to what otherwise is torture.

#3. WARM WATER

Warm water, trust me, is far better on a sore throat than cold water. I’m no tea drinker, however I was downing peppermint tea like it was my new best friend.

Here’s a little piece of wisdom I picked up many moons ago when I worked in pharmacy ⚕️. Take your medication with warm water, not hot water, just warm water, it helps the body absorb it quicker and it helps hydrate you faster.

#4. TISSUES

You are going to NEED tissues. Well I did anyways. A couple of large boxes of tissues got me through the toughest of times.

Because I had a chest infection on top of covid, I coughed, sneezed, snotted and dripped mucus for 5 days straight. My eyes didn’t stop running for days and during the night, WOW did I dribble. I tried piling the tissues on top of the pillow every night before I dropped off to sleep or I’d wake up to a cheek slimmed with mucus….eeeyuck!

#5. The good old SPEW BAG!, CHUCK BAG!

NO…. I had no vomiting! So why a chuck bag then you may ask?

These handy dandy bags are GREAT for disposing of your snotty tissues. With the mother load of tissues I’d use at one time and with no means of depositing them into a rubbish bin each time, these little gems worked well.

No loose snotty tissues in the bed covers to be washed with the next load of bedding. All those germs contained in that one deposible magic bag.

I hope my 5 TOP THINGS can prepare you in some small way should you find yourself 🎯 targeted by covid

p.s. I forgot to put on my bed on the list of things I couldn’t have done without during my covid experience. I was in need of sitting up to breath during the first 5 days, so without my beautiful bed, this would have been a challenge to say the least.

Posted in Acceptance, disabilities, facioscapulohumeral muscular dystrophy, fshd, Wheelchair friendly

Silence is Golden

The Beautiful Redcliffe Peninsula (Clontarf) Queensland

Its not often I get to be alone these days……..

For those of you reading this that don’t know, I have FSH Muscular Dystrophy. An incurable muscle wasting disease. With no treatment or cure, I try to live every day like its my last.

I have support workers come in everyday to help me out with things I can no longer do for myself. Dressing in the mornings, meal prep for the day, washing and cleaning, then at the end of the day I have a support worker who puts me in the shower, prepares my dinner for me, attends to my catheter and tucks me up in bed for the night.

My independence is pretty much non-existence. The only time I have to myself is in the evenings once I’m tucked up in bed and sometimes weekends during the day. This is my rest time. This is my “ME” time.

Silence is golden and I enjoy every minute of it, when I get it.

It becomes tiring having to make conversation with someone when your not up to it. I’m lucky to have understanding support workers who now know me well enough to know just by looking at me, that I am tired or in pain. Thankfully during those times, I get to have time to myself.

We all need that down time!

One of my most favorite things to do with my “ME” time, is take a ride to the beach. By ride, I mean, by myself in my powered wheelchair. I live in one of the most prettiest spots, close to beaches and a walking path that take you from one end of the peninsula to the other, Clontarf Beach to Scarborough Beach.  www.visitmoretonbayregion.com.au/natural-attractions/the-moreton-bay-cycleway-redcliffe  

I love to cruise along the foreshore of this beautiful peninsula, in my wheelchair, taking in the breathtaking scenery along the way. I never leave home without my camera, my hat, a water bottle and some spare change for lunch or just a cold fizzy drink. Sometimes I take a bunch of photo’s and sometimes I take none. It all depends on the day. I love the sea breeze on my face, the sun sprinkling diamonds across the water and the soothing sound of waves lapping in over the rocks and sand along the foreshore.

I have a favorite place to sit at Woody Point, where I munch down on some whiting fillets and chips, followed by a coke (glass bottle only, as a treat). All the while listening to the calm lapping of the waves and taking in the view across the bay to Sandgate foreshore.

Everyone needs “ME TIME” …

Posted in Hopes, Ideas, Dreams and Aspirations

🎉 LET’S CELEBRATE 🎉INTERNATIONAL DAY OF PEOPLE WITH DISABILITY 2021


🎉 International Day of People with Disability 🎉

I want to share a story with you all about the power of hopes, ideas, dreams and aspirations.

2021-this is My Story.

An idea expressed during an interview is now a reality and I am excited to share it with you all on this IMPORTANT day of the year.

Me, Tracey … On location Woody Point Queensland

Early 2020 during an interview filming I expressed an idea that I’ve had for some years to the film crew.
Fast forward to today and now I’m a Consultant/Mentor for a program that we, the team and I have developed together called

“Beyond the Chair”

un-Other “Beyond the Chair” Program

We took our pilot program into three schools this year and had a remarkable experience with the students who intern gave us great feedback on how this experience has changed their way of seeing and interacting with people with disabilities. A life changing experience for some.

2022 looks to be even more exciting. We have been invited back to present our 5 day immersion program to all three schools.

We are also looking at presenting in the corporate world as an awareness and introduction program. By taking this program to the corporate world my hope is to invite them into our world to showcase our ability to adapt and encourage them to look beyond the chair beyond the disability and employ people with disabilities. “We work harder than most because we feel we have something to prove”

The “Beyond the Chair” program is developed around a structured curriculum which sees:
🔹️members of disability communities go into schools/organisations and share their story and insights

Tristam Peters Consultant/Mentor


🔹️participants given the opportunity to get into a chair and participate in wheelchair sessions (eg: basketball, powerchair football, music or art) with members of the community

Students learning to play
Wheelchair Basketball


🔹️conceptual framework and reflection to connect the key concepts and drive attitudinal change and provide meaning and purpose to the experience.

Students in Chairs – Gregory Terrace

It’s through this participation that we see  mindsets change:
There is no us & them, the barrier of “difference” is broken down on the playing field.
We are all “the same” The idea of inclusiveness is lived, learned and experienced not just read about in a text.

For further information on the concept of our “Beyond the Chair” Immersion Program, visit the link below ⬇️

http://unother.com.au/beyond-the-chair/

Now none of this would have been possible without our Founders Introducing:

Joe Darcy who has a background in digital media and video production

Martin Gibbons also has a background in digital media and video production

Br Damien Price Consultant/Facilitator came on board and developed a viable learning concept that would allow us to bring this program to students.

Bring in our members from a varied disability sector:

Tristam Peters Consultant/Mentor -avid Powerchair Footballer, playing for the Australian Poweroos, Marketer and Content Creator and lives with a condition called Spinal Muscular Atrophy

Tracey Jackson Consultant/Mentor Retired Australian Para-Shooter, content Creator, Disability Advocate, Inclusive Adaptive Clothing Consultant and lives with a condition called FacisoScapuloHumeral Muscular Dystrophy (aka FSHD)

To read more about our amazing team, visit the link below ⬇️

http://unother.com.au/our-team/

For further information please visit our website, by clicking the link below ⬇️

http://unother.com.au

#beyondthechair

Posted in disabilities

HILLS HOIST! NOT ANY MORE

I’m one of those people who won’t give in to my disability. “So I’m miss independent”, what’s wrong with that?

One day, could be sooner rather than later, I won’t have the use of my arms. I’m not there yet but I am realistic and know its in my future.

In the meantime I do what I can with the help of some pretty neat AT (assistive technology)

I’ve had a pretty good system going in my laundry for some years now but I have been struggling with it lately.

My arm strength ain’t what it use to be. After all I do put them through their paces at times.

Anyways, I’ve been searching for a solution so I can continue doing my washing/laundry myself.

I found it……

A power assisted clothesline that’s remote control, comes down to a height that I can manage to hang washing at AND it has heating, cooling fan and a light all at a touch of a button.

But wait there’s more…. at the time of purchase I decided to buy the pegs that are used with the line….yep pegs. The coolest pegs ever. So, I peg them to the garment while its on my knee then I hang it on the line. The pegs have hooks making it so easy for me to just reach up one hook at a time and hang my clothes over the line. So no more trying to hold the garment up to the line with one hand while pegging with the other.

I love it so much that I can’t wait for the next load of dirty washing just so I can hang my washing then press a button and send it to the roof/ceiling to dry.

TopLine Clothes lines

remote control, heating, cooling and light
easy to use hook pegs
stainless steel

Posted in Uncategorized

Silence is Golden

Mornings Golden Hour
Photography by https://www.facebook.com/jennia.bennett/

A moment in time ….

My inner self woke to complete silence this beautiful Autumn morning , for that one or more seconds not a creature was stirring not even the neighborhood dogs. If I listen carefully I can hear the sounds of the wind rustling through the leaves of the tree outside my window , the tiniest of sound coming from the bamboo windchimes on my verandah and the tiniest tinkle from another windchime as the breeze comes and goes.

Golden silence


However nothing lasts forever and neither did the silence. Moments later it started with a lone Raven in the distance, then the plane full of people looking for that few minutes of adrenaline, the sound of parachutes popping open. A vehicle, a baby, the sound of jet ski’s blowing in on the southerly breeze. Slowly but surely the neighborhood was coming alive.
And that my friends is the end of my golden silence for another day …

Golden Silence
Photography by https://www.facebook.com/jennia.bennett/
Posted in Uncategorized

ROAD TRIP

TOOWOOMBA

Who doesn’t love a ROAD TRIP???

A day trip to Toowoomba is a great idea. A great idea for families with lots to see and do. A beautiful scenic drive to the country to shake loose the tensions of the hussel and bussel of city life.

I took that drive last weekend with my sister and my bestie. We started off from my place a little later than we should have for a 2 hour drive (156.7 km) to the country. But it was worth it.

TOOWOOMBA… a beautiful country town 1 hour 36 minutes (125 km) from the city of BRISBANE. Toowoomba is a city in the Darling Downs region of southern Queensland, Australia. It’s known for Cobb & Co Museum, with its horse-drawn carriages. The Royal Bull’s Head Inn is an 1800s homestead with colonial-era displays. To the northeast, Ravensbourne National Park is home to towering red cedarsand rainforest. Nearby Crows Nest National Park features a eucalypt forest, granite boulders and Crows Nest Falls.

COBB & CO Museum

Now a trip to Toowoomba warrants a trip to the COBB & CO Museum. Full of artifacts from the past. Transportation being one of their larger displays. There’s Indigenous displays, science and technology of the time, hands on displays, artifacts of how our ancestors lived and worked (off grid) yep no internet …. wow imagine that!!! A great souvenir shop and a pretty awesome cafe too. Did I mention affordable and “WHEELCHAIR ACCESSIBLE” too.

Parking, cafe, the entire museum and displays all wheelchair friendly. They even have a complementary wheelchair available for anyone needing a little extra support.

Admission some time ago

Windmills … any size will do

Royal Mail Stage Coach… anyone?

One of many Surrey’s on display

This beautiful little girls dress made from timber

Timber shoes to match the dress

PICNIC POINT a view of the Valley you shouldn’t miss. Once again very accessible for us wheelies. Take in the view down the valley from one of the viewing points or the cafe. There’s BBQ’s, picnic areas, along with wheelchair accessible public toilets. Oh did I mention walking trails too.

PICNIC POINT

Picnic Point is a heritage-listed park at 168 Tourist Road, Rangeville, Toowoomba, Toowoomba Region, Queensland, Australia. It was added to the Queensland Heritage Register on 13 November 2008. 

PICNIC Area

Now unfortunately we just ran out of time to explore any further, so that makes for another ROAD TRIP to TOOWOOMBA. (Watch this space)

Let me leave you with a quote I heard today … Happiness is amazing, it’s so amazing, it doesn’t matter if it’s your or not. Stay happy peeps. 🦋

#toowoomba #wheelchair #roadtrip #cobb&co #museum

Posted in Uncategorized

SEATED PHOTOGRAPHER

WHAT IS “SEATED PHOTOGRAPHY” ?

Kuschall Wheelchair 

Seated photography is someone who uses a wheelchair or a chair and takes photographs while in a seated position.  Professional or amateur,  we all  use a chair of some kind. Me..I’m in a wheelchair

For those who aren’t aware of my disability,  I have FSH MUSCULAR DYSTROPHY aka Facioscapulohurmeral Muscular Dystrophy. A rare muscle wasting disease that slowly takes my ability to walk, dress, shower, cook, clean,  hold my arms up to drink from a cup, cut my food, sometimes feed myself. Anything and everything that you may take for granted. 

Magnificent ghost gum 

I don’t pretend to be a great photographer,  I just love creating an image.  When I’m behind the camera clicking away I tend to lose track of time and sometimes my surroundings.  It takes me to another place  where I’m focused yet extremely relaxed. 

You’re probably asking yourselves right about now “how”? How does she take photos if she can’t hold her camera? 

I place my camera on my knee, I flick my side view screen around so I can see what I’m aiming at and click. I tilt it in many directions but mainly landscape. I’ve use a tripod a couple of times, however I need to have someone with me to assist with setup and mount my camera to it. I’ve also got a camera pole but like most things I have to be able to carry it with me and I have to be able to mount the camera to it on my own.  This is why I mostly leave them at home. 

I love to challenge myself to create a unique visual image whenever I’m shooting. I could spend all day playing with my camera and it’s setting just to see what I can create.  

Below are just a few of my latest photos for you to enjoy or take a look at my Instagram page #aimpointshoot  #lifesjourneyonwheeles

To see my next adventure …. you can find me on Facebook too @lifesjourneyonwheeles   @aimpointshoot   

Native Bottlebrush 
Willy Wagtail
Playing with settings 
Beautiful Sunset over Clontarf Beach Queensland 
My camera Jikon Coolpix 600


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 !!!

inclusion1

Inclusion 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 employing

a...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 chance

There 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

fortunate

throughout 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-1

when 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,

logo

where 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/lifesjourneyonwheeles

Messages – m.me/lifesjourneyonwheeles

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.

rsz_311584619_372ab37eb7_b

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 …

social_media_2

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.

 

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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

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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

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