Look what I have!

The picture above shows my front door ramp,

it has given me "interesting" service for the last nine years or so.

When Flav and his dad built it, 

I was still using my manual chair and could maneuver very well. My power chairs do not like going backwards down ramps, and had a nasty habit of falling off!

Not a happy feeling for me, because I was stuck until someone rescued me.

Now I have a beautiful big, strong ramp.

Ron built it in his  Aladdin's cave of a work room.

It is made of solid steel and has 9 fins underneath and a nice big lip on each side so I can't fall off!!

He and his mate came to install it on a very windy day, 

they man handled it from the motor bike trailer, 

up my very narrow steps and into place, using only four little wheels, a couple of pieces of wood, 

and a lot of experience.

I sat taking these pictures terrified that  they were going to be flattened by the heavy steel.

Here is the story in pictures -------

 

Testing the ramp!

A job well done.

The ramp has made such a difference to my comfort,

I no longer have the fear of being stuck out in the cold,

waiting for someone to come along.

I have some wonderful friends!

Now I just have to teach Middi to open the door.

I need a new wheelchair!

I have mentioned this before,

now I am really organised. 

I went with my physio and Niki, to meet Ashley, the man who will build the chair for me.

Here is what it looks like before it is customised.

 It's about as close to a 4X4, or a motor bike, as I am ever going to get.

Of course it will not look much like this picture when it is finished being customised.

This is when the problems start getting big.

The chair is "loaned" to me by the government,

the good thing about that is - they pay for its maintenance,

[but not tyres].

The trouble is we only get $6000 for the chair

and $2750 for the "mods".

To make this chair work for me ,I will need --

a special back that can fold flat,

a seat that can both tilt and stay flat ,

leg rests that go up and down 

and a specially designed foot plate that will keep my feet in the correct place.

The seat will also rise so I can reach cupboards and high counters when I am out.

As well as all these new  gadgets I will hopefully be able to use my old headrest, chest harness, 5 point seat belt,

dead brake, tray, knee pads, chest pads 

and my Roho pressure cushion.

If any of these don't fit the new chair, I will need new ones.

The chest pads alone cost $500!!

It all adds up to an enormous amount of money.

BUT, it means my freedom,

once I am in my chair I can do just about anything I want,

except climb stairs!

Finding the money for my wheels is a giant worry,

the money must be found, before the the government

will even consider providing the chair.

This is a problem for all us wheelies, 

just imagine if you needed a ventilator , 

or special controls so you can drive your chair 

with your mouth or head. 

There are so many wonderful pieces of equipment 

that can be used , 

if you can pay for them!

The trouble is, "disability is at the bottom of the government priorities and wheelies are even further down.

I think we are still seen as "poor cripples",

"confined" to our wheelchairs, just sitting around, waiting to die.

That of course is far from the truth in most cases, 

we have goals and dreams like everyone else in society.

I think the media is one of our biggest enemies,

they still portray us really negatively, we are either "inspirational" 

or "bravely battling our disabilities".

Now I am going to get very controversial,

this is my blog and I can say what I think.

A while ago there was a case in Western Australia;

a man became a quad and was put in a nursing home, he was fighting to have the right to end his life, because he had nothing to live for.

I cried for this man, I know what it is like to feel there is no future that is worth having.

Where were the people who should have been helping him  to learn new skills and become part of the world again?

Stuck in a nursing home, with no positive support, 

is hell on earth.

Perhaps he had received all the physical and emotional support he needed, if he did that is good, but in the media it was not mentioned, only that he was a quad, and could do nothing for himself.

Of course the public are going to think that acquiring, or having  a disability means your life is not worth much at all.

I love life,certainly it is different to what it was ten years ago,

the challenges are different to what they might have been, 

but the sun still shines and my dog still kisses me!!!

Well that was a rant!

Now I will have to move, as my big boy has woken up and is starting to pile everything on my tray,

his way of saying "lets go out"!

Until next time --- keep fighting!!

A new experience

Chris often talks about the sport of agility,

 So when she said there was going to be a competition at Moorabbin

I decided to go and check it out.

Gabe was to take Middi in the car and Jess and I would go by train and then walk.

The weather was perfect --- blue sky and no wind.

Agility shows the bond between dog and handler.

The only controls you have are your voice, and hand signals.

The dog must follow a course, over hurdles, through tunnels,

up and down an "A frame",

across a dog walk, [which is a very high bridge],

over more jumps and through a hoop,

all this is done at top speed, so the handler needs to be as agile as the dog!

Here is Jess's photo of one course.

I forgot, the dog also must weave very quickly through a series of poles.

Unfortunately the picture is not very clear, so you need to look carefully.  :-))

Jess was in charge of the camera for the day, that meant most of the photos were of Kimmy and Jai!

I noticed Kimmy spent a lot of time enjoying Indie's lap.

But then again, Jai liked my tray, easy to see mum,

when you are up high!

One of the reasons we went to the trials,   

was to mingle with a lot of very energetic dogs,

and to see how Middi behaved, when taken from me.

The next pictures show him interacting with Sarah,

[ mum of the whippets -- Banjo and Spice]

As you can see, there were no separation problems.

Another task completed for Middi's 

"Public Access Assessment"

Last picture -------

See, I can manage all the dogs!!

It was a wonderful day,so many friendly people, 

all interested in the progress of a 

BIG BLACK POODLE BOY.

Thanks Chris, for making the day so enjoyable for all of us.

A sunny winters day.

 Friday turned out to be one of those balmy winter days,

that pop up unexpectedly in Melbourne.

Niki and I had the Moira bus,

so we decided to pay a surprise visit to Gabe,

at "Hausfrau" in Albert Park.

Midnight's new "Assistance dog" coat had just arrived and I wanted to show him off in it.

Isn't he handsome, now he is colour coordinated,

his collar and coat are both purple.

Albert Park is a very interesting suburb, 

it has both mansions and tiny "workers cottages", all of which are very expensive to buy!!!

We parked in St Vincents Place, 

a street of magnificent Victorian mansions,

built by miners who made their fortunes in the gold rush.

Look at this --------

and this ---

Nik and I felt a little out of place, and under dressed!!!

Lunch at Hausfrau was lovely,

we sat outside in the sun and watched the people go by.

Not a good photo of my assistance dog,

he should have been sleeping much closer to me.

I know I was slack, but I wanted him to have some of the sunshine too.

Middi looked wonderful today, 

I am sure he knew that everyone was looking at him because he walked with his head and tail up right by my side.

He can be a great ambassador for assistance dogs, when he is concentrating.

The last photo shows how we both felt at the end of the day,

very tired!!!!!!

Until next time ------ enjoy the sun!

An Interesting project

Tonight I received an email from Indie's friend Annie,

she is doing an interview for a journalism award,

these are the questions she has sent me, remember she is only in grade six! 

Questions for Anne:

1.      What difficulties do you face?

2.      How did you end up in the position you are in now?

3.      How old were you when you were disabled?

4.      What do you think is the most difficult about having a disability?

5.      Have you achieved anything in your years in your chair(medals, trophies e.t.c)? What are/were they?

6.      What are some of your goals for the future?

7.      If you met a Genie and they granted you 3 wishes, what would the wishes be?

8.      Have you gotten better over the years? How?

9.      Tell me a bit about your disability

   How did your life change at first?

A very interesting set of questions, I have been asked to answer them in depth, perhaps my answers might be too deep for an eleven year old.

Incidentally, she had to pick someone she thought was inspirational!

Usually I hate that word because I find it embarrassing, but I think children look at things differently to adults.

What difficulties do you face;

The biggest  difficulty I face is coming to terms with loosing my independence.

Before I became disabled I was a teacher of special children and   grandmother to Indie,

now I need someone to look after me all the time.

In the old days I could go where ever I wanted, 

now I can only go out, if I can get a carer to take me,

and if the place I want to go is accessible!

How old were you, when you became disabled;

Well, Indie was not quite 3 years old,

and I have been disabled for nine years,

so I guess I was in my middle 50's!!

Sometimes it seems such a short time ago.

 What do you think is the most difficult about having a disability?

This is such a big question, 

I think I will leave it for tomorrow night.

Until next time ---- Think about those sleeping out tonight,

It is going to be very cold!

Update.

I thought  it was time I did  an update on "puppy training", or perhaps it should be called "granny training"!

Here is Midnight after a hard day 

walking the streets of Glen Eira!!

It's a tough life isn't it?

Notice how big he is getting, 

when he climbs on the bed with me, he takes up more than half of it.

 Newest trick is to lie the length of the bed with his head on the pillow and then very quietly push his feet against the rails, next thing I know, I am squashed against the rails and he is in the middle of the bed.

Here we are out and about in our new harness,

it makes such a difference. He is now attached to my chair by a D ring on the side, no more twisted harness.

I am now looking for sheep skin seat belt covers and they seem to have disappeared from the market.

We are now walking from 2-4 k per day, 

sometimes he is brilliant and we have a great walk, 

other days nothing seems to go right.

Now we have started a daily diary, 

this will be very important when it comes time to try and get him registered.

We have learned one very important skill,

I can now clip his lead onto his collar and he knows that he must walk behind me from the house, 

through the veranda gate, down the path 

and through the very narrow front gate.

He then sits next to the chair 

so I can clip on his wheel chair lead.

I am amazed how quickly he has learned this difficult maneuver,

the path is very narrow.

He also sits beautifully,

reminds me of when I was at school and the teacher would say the person sitting up the straightest 

could go outside first. 

He pushes his little chest out just like the boys did!

We also have sort of mastered "stop",

  "Midnight walk on" and "up the hill".

Our biggest problem at present is dogs!

we don't meet enough of them, so when we do

he goes crazy and doesnot concentrate at all.

Chris, our trainer, says he must go to the dog park,

not with me, because he is too strong for my arm, 

so it will be Jessika walking him, 

and me watching.

Sometimes I get very frustrated,

I am finding it is so much harder 

to do things in my chair -- I cannot reach far, turn quickly,

or even get down on the ground and give him a cuddle'

when he has done something really clever. 

I guess we are both learning.

I think I have written enough for now, 

my boy is sleeping next to my chair waiting for a walk.

I wonder how we will go tonight?

Until next time --- hug a puppy!!

Unbelievable!

I cannot believe what happened on Thursday!

I have been a member of 

Glen Eira's Disability Reference Committee for three years, it is a state government requirement that each council 

must have a DRC.

We have a big problem with parking in our municipality,

so when I was told we were having a  council worker to speak to us about the problems  I was naturally very excited.

I have had many people ask me to see if something could be done to make parking safer 

for people with a disability and the aged.

Unfortunately we got the usual bunk about how wonderful Glen Eira Council is, we meet all the minimum requirements for parking, and actually have a couple of extra spaces!!! 

I ,and many other people rely on hoist buses for transport, they are usually Toyota or Mazda vans with a long wheel base. 

Unfortunately they do not fit into a normal "dis.parking" spot

which are usually situated behind the shopping centres.  

Even if we find two spaces, 

we have to unload into the road, 

as you can imagine this is incredibly dangerous.

When I asked if council could do anything the problem, 

I was told NO, you are registered as a bus so -----

USE THE BUS STOPS!!!!!

This is what would happen --

1: Carer stops at the bus stop, lowers the ramp.

2: Public bus pulls up behind, cant fit in because my "bus" is taking up most of the space.

3: Carer unloads me [takes about 5 mins]

Public Bus still waiting!

4:Carer now has 2 choices, she can either walk me half a block up the middle of a major road to find a cut , so she can leave me unattended on the foot path.

OR 

she can leave me on the road [at the bus stop] and go and find a place to park the bus.

Public Bus still waiting!

5: Carer walks me down the centre of the road for half a block, looking for a cut so I can get on to the foot path!

Public Bus is now running 10 minutes late!!!

And remember --

We have to go through it all again 

to get me back in the bus!

This is Glen Eira Council's solution, and they keep saying they are very disability friendly!!!!

Do I have ANOTHER fight on my hands?

Until next time -- Keep Happy

A surprise!!

 In case you haven't noticed,I have a great regard for Yooralla,

they support around 30,000 people in Victoria,

who live with a disability.

Gradually over the years I have used more and more of their services and now I feel that I am part of Yooralla.

This year, when asked if I would help with publicity 

I agreed.

I am sure that surprised a lot of people!

For the last few years I have been happy 

to give talks to people about living with my disability,

but I have always refused to have my picture taken.

I think it probably has something to do with being labeled as "the poor old crock in the wheel chair".

At last I don't care what people say,

I know I am not a poor old thing!

That is what all this preamble is leading up to!!!

I was asked if my picture could be taken and used in 

the Yooralla Annual Report, 

"probably as part of a collage about people who use Yooralla services."

This is what I saw when I opened the envelope!

I am on the FRONT COVER!

Yooralla has  a 65 year old grandmother 

as their cover girl.

What a positive image, 

usually disability is represented by a lovely 

little disabled child. 

Yes, it pulls at the heart strings,

but it is negative 

and portrays us as "poor" people. 

We are not, we have to be strong

to fight discrimination and ignorance.

How I wish we were always portrayed 

in a positive light.

News papers are the worst, 

as I have said many times ,

I may be stuck in my bed, 

but I am not confined to a wheel chair!!

        Incidentally, I am amazed at the comments I have had about, - how good it is to see some one 

obviously enjoying life!!!  Ha!

Until next time  ----  wear a happy Hat!

PS: I am trying to get used to the new 

colour of Yooralla !

A new addition to the family!

Can you see what is in the picture above?

Not Nacho, not the potting mix,

the little black hairy thing!

Its my new puppy, he is only 13 weeks old.

have a look at him.

Isn't he enormous!

His name is Midnight, for obvious reasons

and he is a large Standard Poodle.

I was expecting to take him for his first visit to the vet,

riding on my tray, but I think he will be walking.

This is a picture of him when he first arrived, Jess bought him the green toy, it is now his absolute favourite,

I hear it squeaking in the middle of the night.

This is us on our first solo outing, 

he is so intelligent that it is easy to forget he is only a baby.

He is learning to walk by my side without me touching his lead. I am finding this very difficult because I am scared of running over his paws.

Everyone keeps telling me that he will learn very quickly, but that does not make it any easier for me.

He wears a red body harness instead of a collar, this makes it easier for him to walk next to the wheel chair, and will not damage his neck.

Look at that face and those eyes!

Now look at the next picture,

 another set of beautiful eyes.

Now I am going to have to train him, 

it will be a interesting experience for both of us.

I have no idea how to do it in a chair.

Fortunately big poodles are very placid dogs,

I have already noticed how calm  and gentle he is.

I am very relieved that he and Nacho get along, she is definitely the boss [because she is a girl],

but he is happy and so is she!

I guess it is early days yet, so we shall see.

At present, they are both lying on the floor near my chair, chewing on a puppy bone, 

now if they would always be like that,

life would be soooo easy.

Until next time --- Happy Days!

NO GO!

Well it is all over!

I will not be running the half marathon this year.

The excuse given -- too dangerous, tight turns, 

difficult roads and any other excuse they can think up.

If I can run the Childrens Hospital Fun Run,

with 29,999 other people over rough roads, 

 very tight turns and even a U-turn on half a road,

without causing an accident,

why cant I do the same thing in the half marathon?

All I am being offered, is the untimed 4k.

I am not even allowed to run the timed 5.7k.

which I could do with my eyes closed!

At present I am feeling very hurt.

I have been amazed at all the wonderful support I have received during the past few months, 

and I would like to thank you all

for having faith in me.

This is not the end of my fight for equality!!

I am going to do the long run for the RCH in April next year.

I will run through the tunnel and over the Bolte Bridge, almost 15 k. and probably harder for me

than the marathon.

I hope everyone will continue to suport me in my fight for disability

and for the kids hospital.

Until next time -- Keep Happy!