Do you remember when ...

I not only remember when people did not have mobile phones but also when hardly anyone had a home phone - you used the phone box to ring the luckly ones that did - and I even remember using phones that you wound the handle and spoke to an operator. :o

I remember black and white tv. Saturday nights were spent watching Walt Disney welcoming you and seeing innocent family movies. Sunday nights was watching Molly Meldrum and countdown so you could talk about it at school the following day. Tammy, Gidget and Doris Day were our 'role models' on tv.  Who could forget the Leyland Brothers followed by Alby Mangles in later years. TV usually closed down around 11 and the Queens Christmas message would stop a nation.

The cinema showed shows like World Safari, and a trip there with school would mean watching Lord of the flies not Harry Potter. Your price also included 2 movies not 1. There were Jaffas to roll down the isle or throw over the balcony. Then came Rocky Horror, Rocky Balboa and Aliens.

Drive ins were everywhere and you could smuggle your friends in by putting them in the boot. Choc topped icecreams were the go and mattresses in the back of panel vans were the go.

10 cents worth of lollies was more than 1 lolly, hell it was more than 10 lollies. You got free milk at school. The majority, not the minority of mothers helped at the school tuckshop. Working b's meant parents turned up to help. 

Teachers smoked in the classroom, teenagers smoked in the cinema, in fact people smoked everywhere.

All kids would go out playing and come home when hungry and before dark. We would go bike riding, horse riding, yabbying, swimming and just general play.  The baker, milko, fruitman and softdrink man all came to your house. 

I remember ipods, cd's, cassettes, 45's, 33's and even 78's. Dvd's, tapes, and when your choice was Beta or VHS. 

The ensuite, the bathroom with separate toilet, the flushing toilet in a room on the verandah, the outhouse.

Milk in bottles with silver foil lids, real cream milk that you had to shake to mix before drinking. Milk in metal buckets or in the tins at the end of driveways waiting for the factory to collect it. 

Everyone played sport, everyone had a veggie garden and every child walked or got the bus to school. 

I have lived through flares, ponchos, tartan, cheesecloth, taffetta, long boots, short boots, riding boots, jesus sandals, joggers, sandshoes, stillettos, ballet shoes, thongs, minis, maxis, big hair, permed hair, short hair, straight hair and most have returned at some stage or another. 

Everyone older was Mr or Mrs or Aunt or Uncle. Every suburb had a least 1 corner store, service station, phone box and mail box.

Stores closed at midday Saturday and didn't open again until Monday. Nothing was opened on Good Friday or Christmas day. 

Trains use to have red carriages that had doors to benches that faced each other with just enough room for someone to stand on your feet in the middle at peak hour. You had nothing to hold on to and would constantly fall onto the lucky person to get a seat.

Dual lanes on the highway was when you indicated and overtook the person going slow in front of you. 

There is so much more and so many memories. 

A challenge for those strong enough to try.

Just moving some of the stuff from facebook to here that I have written.

Yesterday I had a phone call from a mum who had 2 boys with Duchenne Muscular Dystrophy - the same as Ryan. Her boys passed away over 20 years ago. We were talking about how some things hadn't changed in all this time. One of these things was understanding. How people don't seem to understand what it is like to look after someone with a physical disability.

Now this got me thinking and apart from me putting here what I do as a carer, I could get some of you to do something that Ryan's primary school use to get the kids to do.

Do this when there are 2 of you around and you can even swap roles at a later date. Now the only movement you have in your body is your hands... not your arms, just the wrists down. You can't even move your neck... but your mouth works fine. Now I can see you’re wanting to type a reply to me. You can, you just have to use the onscreen keyboard with your mouse. Don't have a mouse?? Well tough you can't reply then.

Now the other person that is there has to help you. Your leg is itchy or there is a fly on your nose - they have to scratch the spot with only you telling them exactly where it is, or they have to stay around shooing the fly away.

Your thirsty and hungry - they have to get you a drink and give it to you.... use a straw otherwise it will go all over you when they tip it. They have to cut your food, listen to you tell them how you want it and what order and when you’re ready for you next bite. Now let’s hope they get all the crumbs off of you and especially that one that went down your top and is annoying the hell out of you. 

Your arm is uncomfortable where it is, get them to move it back, out, over so it’s in a better position for you. I hope you haven't moved your legs yet, because where they are is where they are staying until someone helps you to shift them. And it better not be hot where you are. It is getting them to lean you forward so they can fan your top so it stops sticking to your body. 

Oh look there is a message on your phone... hold on, you can't look at it. You need someone to get your phone, hold it up in front of you so that you can read it. The same if you want to view a paper or book - someone has to hold it up for you and turn the pages. Hate what’s on TV or the radio atm, tough!! Unless someone comes to change it, it’s stuck there. 

Want to go to the toilet? Don't ever leave it until the last moment or try hanging on. You have to allow time to call out to someone and them to come, get bottle or hoist (depending on what you’re doing), move/remove clothing then you and go. Same with shower. You will get hoisted onto bed, clothing removed and then transferred to shower chair, wheeled in, washed by someone else, dried, hoisted back to bed to get dressed. If you then stay in bed you can't move. You have to get the other person to move your arms, legs, head etc to a comfy position. Then if you want to roll onto your side or back, you have to get them to do that as well. 

When going out you have to have someone with you all the time. You would never want to have any issues with privacy, because whoever is with you is going to know your pin number because you can't key it in and it’s ok to say you will use cash, but how are you going to get it without someone to do that for you either. 

Now if you can do even some of this with another person for an hour or 2, I can almost guarantee that by the end of that time you will have yelled at them for not moving something right or not being quick enough. But chances are you moved to do it yourself or show them and this isn't an option for someone with a physical disability. 

Then if you really want to get a good handle on things, set your alarm for every hour. Hop out of bed and walk to your spare bedroom or kid’s bedroom and then back to bed. That’s 1 night, try and see how many nights in a row you can go and still function the next day. 

Everything you do and every move you make during the day and night is something that Ryan and boys like him can't do. Everything you do and every move you make during the day and night is something that parents/carers have to do for them as well as their own movements and activities. 

Physical disability does not mean intellectual disability. 

Another thing I would like to add - If you see me (or any other parent/carer) and I am grumpy or unsociable. Its not because of something you've done. Its more likely that I am tired or worn out. I normally have 1 day a week  when Ryan goes out or weekends  and I can do things on that day which normally include such things as hairdressers, donating blood, catching up with friends, drs apts etc. Every time he goes into respite I end up spending the week doing the things I can't get done in that one day instead of resting. Peter is fantastic and helps heaps but also has his jobs to do, so can't be here all the time.

flying high

Wow!! That is how my last week has been. Nothing really explains it, except Wow.

It started with the girls coming over, the cruise being booked, another cooking class and then a phone call to say I had won a competition to cook with Jamie Oliver.

It didn't matter that I am to have more root canal and dental work done and it took my mind off worrying about Peter and his upcoming tests. Life just couldn't get better than this week.

I have felt like I was literally walking on air. At one point, Ryan even caught me skipping around the house, singing 'I won, I won, I won'. Yes I know, not a very good visual haha. But you know what ...... I don't care lol.

You know when you read a book or watch a movie and it says about everything looking different? Well for the first time in my life, that is how things are looking right this minute for me. The sun is shining brighter, colours are fresher and life in itself, seems lighter.

If you couldn't tell - and most friends could - I have really been struggling the past few months with coping. I had gotten to the point of wondering, how much longer can I cope with this. Yes I have been jealous of others my age and the freedom they have. I get to leave the house twice, sometimes 3 times a week, when Ryan is home (that includes grocery shopping). The constant demand of someone needing you 24 hours a day, is not something you can explain and unless people have been through it, they have no idea (and lets be honest. Most people in society don't want to understand).

And while I am on two different anti depressants and trying to get the right balance with them, this past week has done more for me, than they could ever do.

So yes, I am going to be crowing about it for a while and enjoying this feeling for all its worth.

Technology

Isn't it funny how times change and the things you live through. No one could imagine what the future would hold.

I can always remember having a television. A black and white set, then a colour and its only been this last year, that we have had one that isn't a foot deep. Of course don't forget that the first tv's didn't have remote controls - the remote was your legs lol

Our first 'stereo' that I recall, was a huge brown thing, in sort of a tortoise shell finish. It played records in sizes of 45, 33 1/3 and 78, and we had ones in all those sizes. I think it had a radio on it as well, but don't know if this is right or not. Next was cassette tapes that everyone loved, since they didn't scratch and you could copy them for your friends. Cd's replaced records and tapes and now more popular is the ipod or mp3 players.

While on stereos it reminds me of video players. In 1984 we bought a beta video player. It would play large video cassettes. The same size cassettes were used in video recorders, which then went to super 8 tapes that were around the size of a music cassette, then they went onto internal hard drives or sd cards. Video players, turned into dvd players and now onto hard drive recorders that will also play dvd's. 

Cars also took advantage of this technology. They had no radio, to tape players, cd players and now radio/cd/ipod players. 

The first telephone I remember, was my grandmothers. It was one that you had to wind the handle on and ask the exchange for who you wanted. I think I was around 6 at this time. We didn't get a phone until I was around 12 or 13. When we did, it had a lock so we couldn't make any calls out. The first thing we did when around 14 we had one we could make calls from, was to ring the time. Who remembers ... 'On the third stroke, it will be ... o'clock'? lol 

We got our first mobile phone around 1988 or 1989. It was around 10 inches long, 2 inches wide and about an inch and a half thick. Certainly not something you could throw in your pocket haha. How many remember that you had an aerial on them, that you had to pull out to get reception? All I can say is that I am glad they got a lot smaller. 

At school we used manual typewriters that meant you had to retype any document you made a mistake on. Electric typewriters came next, and they used touch typing instead of the pounding of the older ones. They also had a built in white out, so that if you made an error you could correct it. Then came computers.

Our first computer back in 1994, was a second hand DOS that I got from a friend. You would have to enter in commands so that you could use it to type up documents. Our first computer that had Internet access was back in I think 1995 (around when I first met you Bob). They were extremely slow and not many people had it. A whole new world opened up to everyone with it. You could 'talk' via icq to people all over the world. The monitors were big like the first televisions but on a smaller scale. I loved meeting new people and still am in contact with some of the first people I met - Bob, Kathy and Chris. 

Now there are laptops and broadband and in some areas cable. You can have Internet on your phone and the world has become a much, much smaller place. From needing to have a phone, television, video player, radio, etc we now just have one device that does it all and will fit in your pocket instead of your whole house. 

Won't it be exciting and amazing to see where technology takes us next!

Friendship

Do you remember when you were a kid; people back then just use to call into visit friends and relatives. These days, that seems to be something that has died. Now it seems to be that you have to ask someone over or arrange to catch up.

I know your asking yourself, 'why is she bringing this up?'. Well let me tell you.

Last week, I had the pleasure of two lovely ladies calling in to visit me. I haven't know these women long and was so touched, that they took the time out of their lives to visit me. To be honest, I think I was more surprised than anything.

I have a couple of friends that do visit, but 99.9% of the time, its more that we have prearranged for them to visit, rather than a spur of the moment thing.

Being stuck at home with Ryan, its more a wear myself out, meeting up with people when he is out or in respite. Don't get me wrong, I love catching up with people, its just that I have less free time than someone that works full time. I can't take a sick day or 4 weeks holiday a year or any other benefits that people get these days.

When I was a kid - yes, back in the dark ages. Most people didn't have phones in their home, mobiles weren't invented and neither was email, messenger or any other form of electronic communication. So if you were going to visit someone, you had the choice of dropping in, or writing a letter and posting it, to say you were visiting.

Due to this technology, people now stay in touch by sms, email, phone etc. The art of seeing people face to face, is becoming a dying skill.

I suppose the other thing that went through my mind, was that I didn't think I was that nice to want to go out of their way to visit. I don't mean not nice as in nasty, but more that I get carried away when I see people and just talk and talk and talk and forget to let others talk as well. I think its the craving for adult company that sends me that way.

So to these women I say "Thank you!" What you did that day - even though it might have only been a small thing to you - made me feel extremely special. To know that I had only known you for a short time, but that you took the time for me, really mad my day.

People get out and visit your friends, don't tell them you are coming (or do), but think of someone in your life, who may be home with children, parents or illness. Get out and see them, and make them feel as special as I did.

Policies

Today my mission is to decide which of the fools running for the State election deserves my vote. So in saying that, I have sent the following email to them...

Hi,

With all the crap going on in Federal politics, the Qld election is getting a bit lost. I am wanting to know, what policies you will look to bring into place to help carers?

As a background –

We have a 23 year old son with Duchenne Muscular Dystrophy. The only movement in his whole body is very small moves of his hands. This means he can drive his electric chair and use the computer, using the on screen keyboard. His mind and speech are the same as any young man his age.

We do not have any hour of the day or night that we don’t need to do something for him. If he wants to be fed, toileted, arms or legs moved, scratched etc, we have to do it. On a good night, he will get rolled every hour, on a bad night, it can be every 20mins.

What we receive is 2 hours personal care 4 nights a week, 1 day of 7 hours, that Ryan uses to go out with a carer to see friends, job search etc, and we have 2 nights that we have carers come in from 11pm to 6am so we can get some sleep and this we contribute out of our pockets to.

So out of 168 hours a week that we have to give care, we get 29 hours help. Not much is it?

We are getting older, having trouble keeping up care and everywhere we turn for help, we are told they don’t have enough funding.

So my question is, what are you going to do, to help carers like us?

Thank you

Kerrie Czernia

Lets see who replies and what the response is. I am sick of ringing up and being told 'No, we can't help'. It's not even much we have been asking for - 2 hours a fortnight. 

The older we get, the less help we get and the harder it gets. 

It is time they started to look after carers, who for many documented years, have problems with back, arthritis, depression and a whole host of conditions. For the sake of an extra couple of thousand a year, they could save thousands through Medicare on carer illness. 

I want to pinch myself.

I am sitting here and my inside feel like they won't stay still and there is just so much nervous energy flowing through my body. My whole body - legs, arms, chest and stomach is like this. I just want to pinch myself to make sure it hurts and is real.

Why? Because one of my dreams is coming true. Let me start at this morning.

Today started off as a pretty shitty type of day. I had an argument with Foxtel, was tired and cranky. I then received a phone call from Montrose, saying that due to Ryan going in there in April and the following week being ANZAC day, that they would let the boys stay in over the weekend until the Tuesday the following week.

As soon as we heard that, we rang MDAQ and asked about them helping with the cruise we had spoken to them about. They confirmed they could get someone to look after Ryan on the Sunday until he went into Montrose on the Monday.

We then rang the travel agent and asked about the cruise that week. There was 1 cabin left on the outside and it was reduced in price and a $200 onboard credit. We grabbed it. Ryan's carers worked out and once paid for, the excitement has set in.

We haven't had a holiday away with just the two of us, for over 20 years. We have had the once a year night or two down the coast, but nothing like this. I just feel that this is going to be a year to remember.

This will cross off another thing on my list and the week we get back will cross off another when I attend a dawn service.

Life might begin at 40, but for this little black duck its 50!!!