tag:blogger.com,1999:blog-65127074028270813782024-03-21T08:30:07.172-07:00My journey of Music and DisabilityA blog about how I have overcome many of my own disabilities and still manage to play instruments and sing. Also about my journey trying to set up an ensemble for people with disabilities to play viola and violin (and hopefully) perform in and about teaching them as well.Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-6512707402827081378.post-15078847443389478742018-08-12T05:11:00.002-07:002018-08-12T05:11:53.543-07:00Music update!So I havent written in quite some time but have periods of both being busy and also being unwell which kinda comes with the territory of having a disability/chronic illness.<br />
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This post is a short update about my musical endeavours. As I said in my last post my friend suggested that I needed music in my life and well i started playing the treble/alto recorder and to a limited extent the decant/soprano one as well! Well since then I have acquired a teacher who is absolutely fantastic and I certainly wouldnt have come this far without her help and guidance!<br />
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My main focus is the treble/alto recorder and I like the sound of it a lot more than the descant recorder and can hear it better cos its at a lower pitch, its a challenge reaching (and remembering) all the fingerings for all the notes, recorder is under no circumstances an "easy" instrument and why it is marketed in primary schools as such I have no real idea! i dont think ANY musical instrument is easy! But with the recorder you have all different combinations of fingerings you have different fingerings for the top and bottom octave but to make it confusing this is not always the case AND to make it even more harder there are even alternate fingers sheesh I found it hard enough to learn it first time but to do trills and things you really do need these alternate fingerings without them its just impossible!<br />
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I have learnt some duets, some solo music and I am hoping that when my friends fiance (by then they will be married) comes over to Australia again I will be able to play some music with the piano! We have moved the piano into the guesst bedroom known as the green room (to do with paint colour) and I am able to be moved in my bed into this room so I can play with the piano. And i am hoping when Liz comes down next I will get to play piano with her too.<br />
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My husband learnt descant recorder when he was a child like i did and so I have also got some trios and quartets and ensemble stuff and since a couple of friends play I am hoping i will (eventually) be able to get all of us together on the same day. This is not an easy task whatsoever but hopefully it will happen after my friend gets married next month!<br />
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I have really been enjoying it and my teacher thinks I am improving too so that is good sign. I will try to get some videos and put them up here the next time I post so you can have a listen!<br />
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thats all for this post...hopefully it wont be so long between this and next one!Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-20280241688543437212017-03-04T23:22:00.000-08:002018-08-13T03:40:59.371-07:00Exciting news on the music and the disability front!I havent written on this blog for such a long time because its whole purpose was to tell my story of music AND disability. well ive mostly had the disability part for such a long time and I have some extremely exciting news to share on BOTH fronts.<br />
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Before i get started with the music and disability updates i wanted to share the link to my new blog called erinscards and crafts this is mostly a how-to make a card blog showing photos and/or you tube videos of me doing craft. So please follow this new blog if you are interested.<br />
<a href="http://www.erinscardsandcrafts.blogspot.com/">www.erinscardsandcrafts.blogspot.com</a><br />
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First the music side of things:<br />
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around a year or so ago a very good friend of mine said that I should have music in my life and that it was awful that i was unable to participate in choir orchestra or play viola or violin or anything due to being bedridden!!!<br />
She suggested recorder. I know what most of you are thinking shrill recorder noises made by young children that generally sound awful!!!<br />
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Well I know that noise because I was 8 years old when i learnt the descant recorder and what i did not know is that there is a whole family of recorders and they dont all have that terrible shrill noise!<br />
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So although i was reluctant at first she said she would come over on the weekend and that I could have a go at the treble (alto) and the tenor recorder too. We discovered that tenor was too heavy for me and i didnt have a big enough stretch either. I loved the tone and pitch of the treble recorder! It was amazing. I also remembered some of the notes of the descant recorder as well so this helped somewhat. I had a bit of a go and actually enjoyed it!<br />
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So she was going away near my birthday and although it was like 3 or 4 months early she decided to give me most of my present early - my very own treble recorder and a book with a CD to go with it!! Well after 1 or 2 lessons from her i could play a few notes and i started learning the book doing only 5 or 10 mins a couple of times a week whether i can play or not depends how well i am really!<br />
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So before i kmew it a number of months had passed and i was up to learning up the octave with the pinched thumb i found this incredibly difficult and it took hours and hours for me to do it but one day i finally managed to get it to work!!! I still find changing from thumb hole covered to thumb hole pinched really quite hard!!<br />
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I asked her if she could find another book something to work along side the one i had because it taught a note did 1 maybe 2 songs and that was it so i got the recorder from the beginning (treble) book and i loved it.<br />
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Christmas came and we both gave each other recorder books. I have a solo book and a duet book and donna has a duet book and a book that she requested for technique<br />
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During my recent stay at highgate park which is only a 5 minute drive from my friends house she came a few times a week and we played the new duets and had a look at the solo book and even her partner who was over from the US had a go too! We serenaded the ward many times during my stay and even had one of the residents pop in to my room to listen!<br />
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I will definitely keep you updated about how the recorder is going i can play both the descant i have since found my actual descant recorder which i used when i was 8 and also the treble as well so it means we can swap parts sometimes!<br />
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I will now go onto the disability news....<br />
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Over the past 15 or so months we have been renovating it started with a friend saying could you knock a wall down and now we are within a couple of weeks of it being totally finished. The renovation is why i had to go to highgate park for those who dont know this is an institution for people with disabilies who are unable to live at home who need 24/7 care I was there for 5 weeks.<br />
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I never thought half of what we have achieved is possible but from the moment the Government Occupational therapist said we can only renovate an exisiting bathroom or wet area we cant build one on but if YOU pay for it to be renovated we will give you the "blue bath" this is a shower trolley basically a waterproof bed which means i can have a shower horizontally lying down which is the only position i can be in.<br />
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So that same day i rang the home-loan bank we are with and they told me that yes we would be eligible for a home equity loan (cos our mortgage was alnost paid off) and then we started the building process very very long and tedious going through getting drawings made quotes and council approval right to the actual building process itself which is almost finished we are about a week or two out from everything being done.<br />
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We have built on two new rooms a bathroom the size of a decent main bedroom to fit the "blue bath" in it and also a guest bedroom since this cut out the carport we needed a new one of those and a new driveway also. We also built a patio out the back and this entire new area is bed accessible meaning i can be pushed in my hospital bed out the front or the back of our house i can have a shower or i can go into the guest bedroom which will act as a sort of second lounge room. All of this area has a wheelchair accesssible door width PLUS a small door as well which is common in nursing homes and hospitals as well to allow the bed to go through<br />
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As well as the building part of it we also had to knock down the wall which was 2 built in wardrobes - one was on our bedroom side and the other on the spare bedroom side so we lost all of our cupboard space this has opened up our bedroom into ONE big room the three existing bedrooms have all been painted and they have new flooring -tiles were the only thing i wasnt allergic to as i have severe multiple chemical sensitivity the hallway also has new tiles too. The carpet was about 40 years old and had to go.<br />
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I wanted to tell you that this has all come from what the bank allowed us to borrow-which was the max allowed and we have used a considerable amount of savings as well to cover the shortfall and we started a gofundme page dedicated to try and purchase some of the things on the list (which is on the gofundme page) We have raised quite a bit of money however I am hoping this blog might target a different group of people. Even $2 will make a difference and if you cant donate then please share on facebook and twitter<br />
<a href="https://www.blogger.com/goog_1740842875"><br /></a>
<a href="https://www.gofundme.com/erin-needs-accessible-bathroom">https://www.gofundme.com/erin-needs-accessible-bathroom</a> is the link to the gofundme page thank you so much to everyone who has already donated and please share the link to your networks,<br />
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I am sure there will be more disability music and renovation news coming really soon.<br />
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<br />Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-47314903891637881202013-10-01T01:11:00.001-07:002017-03-08T01:53:06.949-08:00long time no hear from me<span style="font-size: large;">I haven't written in this blog for ages because my disability has gotten in the way of the music so to speak. I got stuck in hospital for 10 months between July 2012 and may 2013 after going on an interstate holiday and becoming inpatient in a hospital interstate.</span><br />
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<span style="font-size: large;">The TTG thing never happened because I was going to contact them when i got back but that never happened because I was in hospital for so long and also became bedridden when I got sick! I am still bedridden and are just trying to survive day to day.</span><br />
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<span style="font-size: large;">That said I have put my talents to good use because I am raising money for a charity called Mito wish upon a star. I am sure I would have mentioned that the doctors think I may have a type of muscular dystrophy called Mitochondrial disease or just Mito for short and this charity helps children worldwide by getting sponsors to send them a gift or gifts for Christmas. They have in the past also ran a birthday card sponsor thing and an adult christmas card exchange. Its all very good to support research but there isn't much for the actual people with this disease and because medical costs can be so high with it a lot of kids miss out at Christmas because their families struggle to pay for anything.</span><br />
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<span style="font-size: large;">I sponsored a child in Christmas 2011 and I gave him few things that I had crocheted and on Christmas morning all the parents put up photos on facebook of their kids opening the presents from the sponsors when I saw how happy he was it just made me feel so good! So I also had started making zebras for mito wish upon a star but now I also have 3d cards paper tole and pyramid cards, crocheted items like hats scarves fingerless gloves toys (other than zebras) christmas decorations and also bookmarks.</span><br />
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<span style="font-size: large;">So I am writing just to let you know why I haven't written in so long and also to promote my other blog in the hopes that some of you may be interested in purchasing these items for mito wish upon a star.</span><br />
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<span style="font-size: large;">The web address is www.erinscraftprojects.blogspot.com.au</span><br />
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<span style="font-size: large;">I hope you like them and hopefully I will be back to music soon. I have only played my viola a couple of times in the past 12-18 months and that was in bed which is a bit tricky and I am not able to attend choir at the moment.</span><br />
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<span style="font-size: large;">Hopefully someday my dream of having an ensemble will come true!</span><br />
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<span style="font-size: large;"><br /></span>Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-47455533744510348222012-03-02T23:03:00.001-08:002012-03-02T23:04:00.028-08:00Tea tree gully council - maybe my ensemble will become a reality!Its been a super long time since i have written in this blog because i tend to write in my personal journal rather than making my medical problems on a public blog. However i have some news about my musical pursuits and wanted to share them with you all that is predominantly what i started this blog for anyway to write about all the musical stuff and how i manage to do it all despite multiple disabilities.
Last year I joined the Tea Tree Gully Council (thats my local gov council) disability discrimination act (DDA) reference group. For those of you reading this from overseas Australia's parliamentary system basically works with three layers theres the federal (or national) government based in the capital of australia, Canberra. Then there is the state government (my state is South australia) and then there is the local council area which is tea tree gully. Without going into how it all works (cause i am positive i will tell you the wrong thing) thats basically how it works and tea tree gully is the local area that i live in.
So anyways i joined the reference group and its made up of community members with a disability/carer of people with a disability/people from agencies that help people with disabilities and also members of the actual council as well called the internal group. In any case what we do is we are writing a action access plan for the next 4 years and it includes our input and input from the public and the document lists all the achievements in the area of disability access in the council (for eg better footpaths, ramps into shopping centres, council website being accessible for people with visual impairments, making sure the council can provide information in other formats such as braille or audio tape for events held in the council area in a timely manner before the event happens etc etc) and anyways its been a fantastic experience, all voluntary. My husband saw the advertisement in the local paper (the messenger) and told me that i should apply well i did and i got the job i had to have an interview and stuff.
So anyways thats what we do and last week I went to a public consultation forum run by access consultants and one thing that happened at the meeting was that people who work in the council got up and spoke about all the achievements that had occured in the past 4 years (cause the plan is redone every 4 years) and one person was from the councils arts team and they have an interest in making the Golden Grove recreation and arts centre accessible for everyone and said they are always looking for more people to play/hold concerts etc because its all accessible. So I took that as the key and in the break i spoke to the lady and told her of my idea to teach viola/violin to people with disabilities and then form a group and play in an ensemble. She said it was a great idea but understood how i would need other people to become involved to make it happen and she also said she was willing and able to help me find and apply for funding as well. This may include funding for a support worker for me and the other participants, a mentor to make it happen, and all things in between. One day we may even be able to perform in the theatre at golden grove (about 10 min drive from my house!)
On top of that she mentioned that sometimes they have visual arts exhibitions and often they want musicians to play at these exhibitions as background music provided its not too long I would LOVE to do this so much. She told me it would definately be a possibility in the second part of 2012 so stay tuned!!!! I was so excited about it all it was the first good thing thats happened to me in a super long time.
Thats all my musical news for now.Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com1tag:blogger.com,1999:blog-6512707402827081378.post-69803773086798438732011-01-02T02:56:00.000-08:002011-01-02T03:12:28.115-08:00update on everythingI just thought that i would do a bit of an update since november last year!<br />The concert went extremely well and apart from having to learn how to use a new hearing aid AND a new FM system at the same time very very quickly within 2 days I thought it went quite well. Plus it was a fullhouse and totally sold out. The choir even made a profit something that hardly ever happens!<br /><br />My husband and I were involved with our churchs nativity play on christmas eve 2010. I used my stand with the viola and there weren't too many glitches in the play and it was very successful. Jeff was also a soldier in the play itself as well as singing. We are looking at writing the 2011 nativity play and hoping the worship committee pick ours!<br /><br />I am getting used to the new aids and FM system but find it has to be charged every night or else it runs out of batteries and unlike the old one it actually doesn't use AA ones so it has an internal battery however this being said it does charge rather more quickly :-) we also got a set top box for christmas and finally i have captions on some of the programs which is rather useful when the FM system decides to die quickly. Ive also discovered i can use Skype over the net by using the FM system to hear and the mic part of the headset to speak. So ive been chatting with a couple of friends from the UK rather than doing a typing chat.<br /><br />My other big news is that i have completed my TAFE certificate 3 in disability studies finally after 4 years so i am very very very glad about that!<br /><br />I am afraid health wise and services wise i am still waiting for answers and more help. We did manage to secure a respite package for my husband which is consumer directed which is fantastic but it is extremely limited and thats the point its supposed to be a break for Jeff not my primary agency but because i am still stuck with Dom Care and still do not have a diagnosis even after 2.5 years I am still not eligible for disability SA.<br /><br />I am disgusted at the way that i have been treated by this agency and i wish there was another option. i have deteriorated so badly its not funny its scary and honestly i am hoping that the geneticist who ive only seen once last year and who i see again in january WILL get to the bottom of what is going on because all the neurologists are STILL arguing about psychogenic condition and its simply ridiculous. I have started seeing a psychologist and i possibly wrote in a earlier post that she wrote a letter stating that the diagnoses of conversion disorder psychosomatic disorder and facticious disorder are not only 3 different conditions which are impossible to have at the same time but also it states in the definition of them that ALL physical conditions MUST be ruled out FIRST well ah i think my drs kinda skipped that step cause they have not done that yet. I still think Mitochondrial disease is a real possibility and the geneticist is the ONLY specialist i have who is actually taking me seriously (other than the Neurophysio who always has and the psychologist) the first thing she said to me was I am worried about the degeneration and the progressiveness ah yeah well so are we!!!!! So why does this woman listen and no one else does? I have no idea but the apmt is now only 19 days away and i look forward to finding out the results of the tests she did.<br /><br />The other thing about dom care is that I have several advocates all helping me to get what we both need so that is a really really good thing. I am hoping that this happens swiftly but somehow i doubt it. I got into the wheelchair clinic after 3 months wait and ive heard nothing. Ive heard from other PWD that it can take 2 years or more just to get a new wheelchair!!!! I really hope it is a lot sooner than that.<br /><br />I dont know how others with disabilities cope but we are both struggling at the moment. <br /><br />I will keep you updated with the progress of my disability and of my dream of teaching to PWD and forming an ensemble. Now that ive finished TAFE i will actually have more time to think about how it might happen. I do know that the first round of funding is due march 31st so im thinking of applying for the second round which is end of october there is an intermittent one so we will just have to see what happens.Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com4tag:blogger.com,1999:blog-6512707402827081378.post-20567705214062519542010-11-17T22:41:00.000-08:002010-11-17T22:53:07.913-08:00Hearing aid and FM system updateI apologise for not adding to my blog sooner but boy i have been very busy and i wanted to post about my new hearing aids and new fm system and how i came to need these in the first place<br /><br />About 6 weeks ago i went to my audiologist because there was a problem with my hearing aids they kept opening and closing and turning off and on again it was SO annoying. So anyway they sent them off interstate somewhere and i had to have a loan hearing aid only on one side without any BICROS - this means that there is a microphone transmitter hearing aid on my deaf left ear and it transfers to right one and then there is amplification and volume controls on each side. <br /><br />So for a couple of weeks i had this loan one which was frustrating but i thought oh well wont be too long before i get my old ones back again..boy was i wrong ....so anyway i rang up to say can i pick up my hearing aids and got told sorry you need an apmt because your hearing aid is broken beyond repair and you need a new one so i had an apmt about a week later and it was decided on what i would get my hearing aids are free to client they said and i would just have to cover the cost of the icom (which i'll explain later) and the Fm system i managed to get funding for which was fantastic!!!<br /><br />So anyway then comes an email from my audi saying option 1 and option 2 didn't understand what she was talking about and apparently what had occured is that the audi at unitron had given my audi the wrong information and so it was impossible to meet my needs "free to client" so i discovered i had to pay an extra $500 which apparently is the wholesale price the retail price would have been a lot more. In any case 24 hours ago i got the icom the new hearing aids AND the new FM system<br /> I have a Phonak Certerna Art with a microphone transmitter(this is the same transmitter that i used on my old aids) on the other side (to make the hearing aids BICROS) so essentially it picks sound up on the left and transfers to right and amplifies it. <br /><br />I also have an icom with an FM reciever this is a REALLY cool device it works with a digital induction loop and the sound quality is way better than anything i have ever experienced! I have managed to "bluetooth" the icom to my phone (or audi did) and basically i can hear my phone through my hearing aids when im wearing the icom and it can "bluetooth" up to 8 devices apparently. So far i haven't worked out how to do that to my PC in the hopes of listening to music through the PC however it also has an audio cable and i managed to get it to stream audio from my CD player to the icom to the hearing aid.<br /><br />As for the Fm system it is the Phonak Zoomlink and it has an external microphone which i can clip to the viola and use when singing as well in choir. it also has 3 built in microphone buttons omnidirection zoom and super zoom. <br /><br />I did have a disaster though - keep in mind ive only had these for 24 hours and not good with new technology either....<br /><br />I wanted to be prepared for my viola lesson so i charged both the icom and the zoomlink up last night and when i went to use the zoomlink it would not turn on!!!! Not on whatsoever. So i tried everything i could think of before lesson and the taxi turned up (i put the old FM system into the bag as plan B not realising that i had 3 charged and 1 uncharged battery!!! they look similar) So while in the taxi i kept reading the instruction manual but couldn't figure it out i did discover that the external microphone has an on switch but the book did not say how to turn it on my viola teacher worked that out you have to turn it!!! But i could not get the zoomlink to turn on. So i went for plan B put my hearing aids to the "telecoil + mic" setting and of course didn't realise that one battery was flat hence why i was getting no sound out of that FM system So i was VERY brave and just played the viola without the FM system it was bad because i could not hear myself properly but when i was playing with teacher i could hear what she was playing against me and tell when i was wrong actually i could often tell i was wrong just didn't know whether sharp or flat thats the difference the FM system makes. With my old aids i probably wouldn't have even managed that much! So i got home and plugged in the zoomlink thinking somehow it was not charged however there was nothing on the screen at ALL so i though oh ohh thats not good so i read and reread the instructions and found in case of error message please press all three buttons and it will reset and voila it WORKED and it turned on!!!! WHY there had been an error i have NO idea absolutely NO idea!!!! Then i started again tried plugging everything together and it all worked i got the microphone to work and everything. <br /><br />basically the icom is the reciever for the zoomlink and when you have both of them on it automatically changes the program in the hearing aid!!! makes a few beeping noises first but essentially thats what happens.<br /><br />I am a bit scared cause i have a concert in TWO days time!!! a really really big one in a choir of about 80 people with orchestra and everything we doing mozart requiem and mozart vespers!!! SO i have to figure out all this again and make sure i have some idea of what to do. In concerts i give the external mic to a friend in the alto section and she literally wears the mic and cause its omnidirectional it picks up everything in the choir but the alto line the most i hope it works.<br /><br />As for health wise things have not been going brilliantly for me at all except to say that i did see the genetic metabolic dr only last friday and she is doing more tests to figure out what is wrong shes testing for rare degenerative neuromusclar conditions and if they are all negative then she will do a muscle and skin biopsy to figure out what is wrong well that is the hope anyway.<br /><br />I have a wheelchair assessment in a weeks time which i hope i will gain more info about what that actually involves and hopefully eventually i will end up with a better easier to use wheelchair.<br /><br />i have been grateful to have 4 hours a week from the respite centre and they are continuing this help for another 3 months which will go til march.<br /><br />I have finished my TAFE course practically and should recieve parchment soon.....<br /><br />And I am hoping that the music ensemble and teaching will start sometime next year.Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com7tag:blogger.com,1999:blog-6512707402827081378.post-33073566486466399302010-04-29T02:01:00.000-07:002010-04-29T02:15:18.835-07:00Update on music ensembleWell a couple of things have happened recently. I did go and see the community arts network who gave me some ideas on how to start working on teaching PWD and forming an ensemble. I have written a document on the computer on both things just a list of ideas really about what needs to happen like public liability insurance and all kinds of things. I have thought about it and I think a community centre would be the best place for the ensemble to rehearse in and that teaching at home may be a possibility depending on what disability the person has and how much room I actually need. I have also had a couple of friends say at least tentatively that they are interested in helping me with the project cause obviously there is just NO way on this earth I would be able to do it all by myself. So this is good. One thing I hope to do in the near future is contact the director of Tutti ensemble Pat rix and explain my idea and see if she has any ideas about it whether it could be a Tutti off shoot or a business in its own right or what. Hoping to be able to start something when I finish TAFE which hopefully will be around the start of July. Haven't had a good time medically with my husband having his first seizure in 8 years meaning being admitted to hospital for 3 days last week and having respite and all kinds of difficulties organising it and just being able to visit him was a nightmare. So all the medical stuff may hold up TAFE I just dont know. Actually my lecturer has not replied to half my emails yet so hoping she will tomorrow as really would like to get back into it slowly. First aid was cancelled yesterday as the other participant is sick so the trainer is hoping to be able to still do the last part of the certificate in 2 sessions instead of 3. We will have to see how we go. Another thing is that a woman who is blind joined our choir recently and when i mentioned on an email list about this idea she loved it and wants to play the viola but she lives on opposite side of Adelaide so we will see what happens with that. I eventually worked out she was actually the same person. And another thing this recent medical stuff with jeff has given me a total repeat of what happened in 2008 the social isolation (cause Jeffs drivers license has been suspended temporarily for 3 possibly 6 or maybe more months and I can only drive a short distance) factors and the depression the anxiety etc have all gone and got me again which is not nice. I am OK but not brilliant I had enough going on before without his medical issues as well that being said its highlighted to me what I have been telling dom care for the last 2 years he is not able to cope with all of the stuff they keep putting on him the stress of having to look after me plus working full time is too much!!!! But do they listen? NO!!!! Hence I have started the difficult process of switching to disability SA. Hoping this will occur sooner rather than later.<br />And another thing today I had an appointment with my neurophysio and she showed me how to use a slide board I think they are SUCH a marvellous invention and I am hoping that disability SA will think that too because it would help me to be more independant particularly in the public disabled toilet area. I actually have had rather awful continence issues going on at the moment and its not been nice. Seeing the RDNS (royal district nurses service) and also a urologist which I cannot get into til mid July!!! Anyway the continence nurse from RDNS is actually coming next week so i am glad they are involved.<br /><br />Well the microwave is beeping gotta go sort out tea<br />ErinErinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com2tag:blogger.com,1999:blog-6512707402827081378.post-80750909253910638942010-04-06T23:13:00.000-07:002010-04-07T00:16:34.616-07:00New medical informationRecently I went to a new specialist (neurologist) who after a 2 hour appointment decided that he thinks I may have a genetic mitochondrial disorder. This in his opinion would explain a lot of my symptoms including hearing loss, pain, fatigue, the dystonia - movement disorder and other problems. Basically what happens is that mitchondria are in your cells and if they are damaged by genetic defect then these mitochondrial disorders can happen.<br />There are apparently 50 different types of mito disorders and as yet they dont know what one I have or if indeed this is the problem. I believe they can also be caused virally but its more common for it to be a genetic condition. this was pretty big news for me and Jeff because the drs kept saying my condition was temporary and then all of a sudden it became possibly genetic and therefore not going to go away. I dont know much about treatment options but from what Ive read the best test is a muscle biopsy which appears to be some kind of big operation not a small needle one. This is yet to be confirmed by the doctor who that neurologist has decided to pass me onto. I see them in May. So hopefully the new neuro in May dr kimber at the RAH neurology clinic will be able to sort things out for me and give me a better idea about what is wrong why and what to do about it. Hoping it will lead to a diagnosis prognosis and also getting more home support probably from disability SA and also a better lighter wheelchair hopefully a power assist one.<br />Also seeing a physician who decided to send me for a sleep study first one was at home but the oxygen thing fell out and so it wasn't recording for most of the night so they decided to send me for one in the sleep clinic which i haven't got the results for yet. See him next week.<br />So between keeping up with TAFE trying to do first aid and all this medical stuff we have been pretty busy latelyErinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-25014328195120008402010-04-06T22:54:00.000-07:002010-04-06T23:06:08.786-07:00Studying with TAFEWhen we returned home a couple weeks later in about feb-march I resumed studying with TAFE. I am doing it externally and are doing certificate 3 in disability studies. its been on hold for 18 months while I was too sick to study. They came up with a special study plan to assist me with my studies to hopefully complete the 5 units I have to go prior to the cut off at the end of June 2010.<br />I am doing two advocacy subjects, one called leisure and recreation activities and I have to do the compulsory unit participate in saftey procedures basically OHS (including manual handling which I can only do theoretically and apparently over the phone in this case) . I also am required to complete a senior first aid certificate which is big ask for someone who is a wheelchair user with all the other medical problems i have however it is a compulsory requirement. The reason I have to finish by end of June is that the government changed the course from the start of 2010 and they gave 6 months leeway for people who were continuing students if I dont complete it I have to basically start again as the units I have done except for first aid are not transferrable plus I have to pay for the whole certificate again! and I decided I didn't want to do this hence returning to comlete the certificate.<br />I have passed everything so far a few sets of questions and made a start on one project for leisure and recreation.<br />I made contact with the National Disability Coordination Officer for people who have disabilities at tertiary level and she was interested in completing first aid as well and had a friend who is a st john trainer so she very kindly said that she would help me to see if there was a way that I could manage it all including CPR and we have been doing it fortnigthly for a month so far. Next session is tonight. it just will go as long as it needs to til we complete the certificate. Last week we had a go at CPR and I can do it although only a couple rounds not like 5 like i am suposed to do. I did about 3 the first time and then Jenny had a go and then I did about 2 rounds the second time and almost collapsed from immense fatigue the second time. But it proved we could do it both of us. We did on table cause I cant get on or off the floor and cannot sit without something behind me because the dystonia starts up. its painful. I got the dystonia while I was doing the compressions which didn't work too well<br />But all in all TAFE so far has been a rather positive experience!<br />I want to use the certificate for the idea of teaching People with disabilities viola and violin and set up a group to play and perform inErinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-17798030064346517052010-02-15T23:42:00.000-08:002010-02-15T23:46:11.907-08:00TTYWell this is not an entry about music its about using TTY. as you know I am hearing impaired deaf that is and thus have trouble on the phone. So last year I decided that I would switch to using TTY. This means that I call the national relay service or NRS and then make calls thru them and the call is relayed to the TTY machine and I can read it. If people want to call me then they ring me thru the NRS as well. It only started today. Its kinda spooky but I guess I will get used to it and so will all my friends and family! Theres even a special emergency number too equivalent of 000<br />I made 4 calls today thru them and it wasn't too bad. We will see how it goes.Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com2tag:blogger.com,1999:blog-6512707402827081378.post-41732987741157653442010-02-06T23:38:00.000-08:002010-02-06T23:39:07.488-08:00Holiday to Canberra for IV and then home via Dubbo Cobar and Broken Hill. 14-30 Jan 2010We left on the 14th January 2010 and drove all the way to Hay. Unfortunately for asked we got 25 kilometres past Balranald NSW and discovered we did not have enough petrol to make it to hay so we had to go back to Balranald to get some more petrol. We arrived in the middle of the night and the next day we drove to Canberra. On the following day we went to the costume shop to pick up a Spanish costume for the party the next evening. We then drove to Birrigai which was the campsite for InterVasity (IV) choral festival the reason we came to Canberra in the first place. Birrigai is in a bushfire prone area. But we were lucky despite the hot weather. The day after we left Birrigai was a total fire ban day and if we are still been in Birrigai we would have had to evacuate.<br /><br />With the Between the 16th and be 24th of January 2010 we were involved in this festival we were at Birrigai until Wednesday morning we stayed with Jeffs parents and drove to Birrigai every morning. There was a costume party, sculling nights and and the revue which I performed telemanns Fantasia no 09 for solo viola and also helped Jeff with his act called Acts of the choristers. Written like the book Acts in bible based on the events that happen at camp at IV. There was also usual IV events of Presidents pyjamas (don't ask) and market day (where different societies get to sell their merchadise. <br />One night when Jeff was sculling I was resting in the same dormitory as the assistant conductor. We had a very interesting conversation about music and disability. I also met Milly who is an OT student. She helped me at ANU on the day when Jeff was umpiring cricket at his high-school. <br /><br />During the day there were many rehearsals for the concert that was held in Queanbeyan on the 23rd of January. Queanbeyan is on the border between New South Wales and the ACT. On the Wednesday people left Birrigai and had a publicity sing in Garema Place near the ANU (Australian National University). We didn't go to the publicity sing because it was too difficult to get there with me in the wheelchair. We met everybody for the photo. Then we had our first rehearsal at ANU. It was very difficult because I in needed to sing at the front of the lecture theatre so I could hear but the bathrooms were at the top of the lecture theatre only accessible by going outside of the lecture theatre and after an incredibly steep slope needing somebody to push me because they were only steps in the lecture theatre.<br /> On the Thursday night we had the formal academic dinner. This was very enjoyable. It was held at a function centre at a football club. On the Friday night we had a family barbecue at Jeff's parents house and the following morning we met my friend Sarah who I went to school with and her partner Alex in Queanbeyan for lunch they live in Queanbeyan. That afternoon we had the dress rehearsal in the Q performing arts Centre which was only built in 2003 that night we we went to the Leagues club for dinner before the concert. This was a huge success and everyone enjoy despite ed themselves. The Q was not particularly wheelchair accessible despite being built in 2003 dales accessed for the audience but for a performer at needing wheelchair access to the stage like Myself it was a disaster I had to go through three fire doors and then wait on the other side of the stage because I was unable to get downstairs to the backstage green room I find particularly annoying that a venue built so recently would not provide a ramp to the stage this was supposed to be there and the committee were aware of this being necessary but at least I did not get sick like I did in Hobart in July 09. It was also good being able to sing with the choir not offstage or in front or next to the choir like I have done for most of the concerts in the past 12 months with the Adelaide University choral Society (AUCS). I found an alto 2 who was happy to wear my FM system which allows me to hear the choir. It worked really well and didn't break. That evening we had the post concert party in the Leagues club<br /><br />The following morning we went to Commonwealth Park for the recovery barbecue I was intrigued by the Carillon. Apparently it's like the bell tower but instead of bells being pulled an organ is played which makes the bells ring. Unfortunately I got dust in my eye and a couple of days later I got conjunctivitis this cleared up within about a week. On We decided to go to the National Art Gallery and had a look around for a couple of hours before returning to Jeff's parents house and started to pack that night we went to a restaurant in Civic the city area of Canberra and met our friend Kendrick for dinner the next day we left for Dubbo. On the way we went via parkes and this is where the CSIRO Parkes radio telescope is located this telescope was used when man first walked on the moon in 1969. Unfortunately we missed the visitors centre but got some great photos we reached Dubbo round half-past eight and we were just about to go across the road for dinner - crossing the road in fact when the lights went out and Aporto closed we drove around looking for somewhere to eat everywhere was shut. Eventually we found a place a bit like the hogs breath cafe. It was expensive but delicious <br />the next morning we went to the Western Plains zoo and a was a two-day pass we got a lot of photos of the animals it was so big six kilometres in a circle and we had to drive around and get out and walk to see the animals around two o'clock we we had reached about half way and decided to go back to Parkes to see the radio telescope visitors centre which closed at 4:30 p.m. about hundred kilometres back towards Canberra we reached it in time and had a look through the visitors centre in saw the telescope up close. Then we went back to Dubbo and had dinner. The next morning we went back to the Western Plains zoo and saw the rest of it then we drove on to Cobar. Both of the days in Dubbo were 43° Celsius <br />The following morning we went to the Cobar quilting shop. They were having a sale and had lots of cat and music fabric. After that we drove onto Broken Hill. <br />Coming into Broken Hill we drove through a dust storm we thought it was big but apparently they have had worse. The next morning we went to the Broken Hill visitors centre through recommended numerous places to go that were wheelchair accessible the first place we went to was the train hospital and migration Museum it had lots of photos and various pieces of equipment and old telephone is typewriters and old hospital equipment from Broken Hill's first hospital then we went to an Art Gallery which has Ando's Big picture it's painted in a circle and its the largest picture painted by one person hundred metres round. The Gallery had other paintings and things look at also sheep ant and cats made from metal which you could buy and other souvenirs. Then we went to the Royal flying Doctor service visitors centre located at the airport in Broken Hill this is open to the public you can go on a tour and see the Planes and people working also a video is shown and there is a Museum and souvenirs then we went to all parts which had the Titanic memorial in it. There were band people who played on the Titanic when its sank. They all people in Broken Hill who wanted to put up a memorial dedicated to these people. That night we went to musicians club for dinner. The next morning we went to a above ground wheelchair accessible house that had been turned into a mine it showed equipment from the past and present use in the mines in Broken Hill. They also showed a video of the history of mining in Broken Hill they were paintings made from the minerals from the mines in Broken Hill for sale there was also a room filled with dolls and teddies about 800. Then we left for home - Adelaide. We arrived around half-past seven that night. Overall we had a really good time and I am glad this time and was able to sing with the choir and didn't get sick unlike Hobart IV where I became very ill and missed singing in three concerts.Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-83352787548640365752010-01-04T00:18:00.000-08:002010-01-04T00:38:28.837-08:00Photos of standing frame<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGEY9zVWZbuPVvQstkURFTCyBR8MYijkiDG89fzARsbQ8nfJlDP87-MetCreI3HRVy41dcXYxYY-6ZtOqQTSdp-QaGXC-S6gA4OMBm7-RU0abyE1201Fypw3S99anMLP4eu2MsbVr9CDaR/s1600-h/P1010286.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGEY9zVWZbuPVvQstkURFTCyBR8MYijkiDG89fzARsbQ8nfJlDP87-MetCreI3HRVy41dcXYxYY-6ZtOqQTSdp-QaGXC-S6gA4OMBm7-RU0abyE1201Fypw3S99anMLP4eu2MsbVr9CDaR/s320/P1010286.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5422798137036857666" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinRcrVHzU_r0k5uk7rGBF2gB9Sw7ltxahsPpJE3NBntyaTg4hYkxGUIiSK-11k1LYrro3ZQlVo1ojnS-kCOFiJo8aMnDKyObKZJ-i7lKV4XqsGEqUXmsKe3WRSLbnFLTuW1rVVzhhN07-q/s1600-h/P1010285.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinRcrVHzU_r0k5uk7rGBF2gB9Sw7ltxahsPpJE3NBntyaTg4hYkxGUIiSK-11k1LYrro3ZQlVo1ojnS-kCOFiJo8aMnDKyObKZJ-i7lKV4XqsGEqUXmsKe3WRSLbnFLTuW1rVVzhhN07-q/s320/P1010285.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5422798132478737010" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTr6FNlzuvGrU5jpKZYTZeK7QU0IDhi8Ik15_Qo47bv160Aus5I4FRwobf4rdtL5766pIHD9ywHueotrmuv4yJRjytVxX6ElkkGLiu6MrwYvabNuvq6FlPpooz66IjTMLLQs-yiA6xaP6M/s1600-h/P1010284.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTr6FNlzuvGrU5jpKZYTZeK7QU0IDhi8Ik15_Qo47bv160Aus5I4FRwobf4rdtL5766pIHD9ywHueotrmuv4yJRjytVxX6ElkkGLiu6MrwYvabNuvq6FlPpooz66IjTMLLQs-yiA6xaP6M/s320/P1010284.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5422798122410998034" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB9hqWTHC4hqYY50Yi4_1fe1EMTmrLoDzxU4N8vq2pJUf16q_h6SfGkvpzBoViu9tn_1n2WjJFKj76GHZdvsJ-JwScRNibvmBssC5vuKCU9Vwj6govV2zLoMqdjzUMxrJ5c-gtjk9L4Z3s/s1600-h/P1010283.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB9hqWTHC4hqYY50Yi4_1fe1EMTmrLoDzxU4N8vq2pJUf16q_h6SfGkvpzBoViu9tn_1n2WjJFKj76GHZdvsJ-JwScRNibvmBssC5vuKCU9Vwj6govV2zLoMqdjzUMxrJ5c-gtjk9L4Z3s/s320/P1010283.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5422798120418168994" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSL06s_NPhaDYkdD67dOOLg88wFApcmKmqtWi_-vsID3QJiWaUcb0heBGcwcTBIHUGs77Dori0OY2rVynZrZY7uUVCgRJonWLRoxFMd_R2yAqN_EZbEqY-pTbAdgVEoag_sC2cX3QSGrs9/s1600-h/P1010282.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSL06s_NPhaDYkdD67dOOLg88wFApcmKmqtWi_-vsID3QJiWaUcb0heBGcwcTBIHUGs77Dori0OY2rVynZrZY7uUVCgRJonWLRoxFMd_R2yAqN_EZbEqY-pTbAdgVEoag_sC2cX3QSGrs9/s320/P1010282.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5422798116038880242" /></a><br /><br /><br /><br /><br />To the left are 5 photos of me and the standing frame that TAD made me. The two in the wheelchair were taken about 1 or 2 days out of hospital between christmas 2008 and new year 2009 and the 3 ones of me standing were taken straight after it was made in about september 2008.Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-39524160817108167572010-01-03T23:47:00.000-08:002010-01-04T00:12:11.386-08:00drivingWe take driving for granted we just do, you don't know what you have until you lose it!!<br /><br />Around february-March 2009 I asked my neuro-physio whether she thought I would ever be able to drive a car again She said YES!!! Maybe not right away she said but she thought it would be possible. I left it another couple of months and asked her again (i really hadn't improved but I was very keen to get the ball rolling with driving again thought would be simple) BOY was I WRONG!!!! She said to me that she thought it would be the best idea to have an assessment done by a driver clinic OT (Occupational therapist) So she wrote the referral and I rang up to find out what I had to do. First there was a 3 month wait. Second we had to go to the repatriation hospital which is over an hours drive TWICE as it was the only place we could do the assessment because of the type of disability I have!! The first part of the assessment was at the clinic they ask a bucket load of questions about your medical conditions find everything that could possibly be wrong or hard with driving and then find a way to solve all these problems. Trouble is the treating dr HAS to fill in a form to the department of transport and there is no option on this form for this kind of assessment it is dumb the OTs are trying to change it. They even got me to write a letter to the Member of Parliament involved to try and change the form. Also the final decision is not made my the OT doing the assessment but by the dr this is also dumb as the dr has had nothing to do with the assessment the OT has. In other states of Australia the OTs do get a say in what the final decision is. In SA they can only recommend. Anyway so they decided that I had to go back to the eye specialist something was wrong in the assessment they thought could interfere with driving so that was another appointment the tests came back fine! The second part of the assessment was with a driving instructor with the OT in the back. This was difficult as the instructor made a big deal out of a minor thing that I did wrong and did not explain how I could fix this issue. Anyway it was decided that I would need 3 1 hour lessons with a driving instructor trained in rehab and this was done over 4 lessons 2 half hour and 2 1 hour lessons. All in all these assessments cost over $700 AUS with no rebate or anything (something else I put in the letter). It also was recommended that the only way I could drive was with the use of a WYMO. Basically a hydraulic lifting device that puts the wheelchair on the roof of car at the touch of a button at the cost of about $4000AUS. There were a couple other minor recommendations. <br /><br />Well I knew we could not afford a WYMO so I asked my service provider who gives me personal care twice a week and various equipment and they said NO. Then for reasons I wont go into a few months later (after our trip to Tasmania for the choral festival) I asked to have a new service coordinator and in the meantime I spoke to the supervisor about all the difficulties I was having. Well she told me that my origial service coordinator apologises because he made a mistake the WYMO WAS available since the equipment service is for ALL PWD in two different agencies!!!! So a WYMO was once NOT available to domicilary Care clients but now was. The way this service works is that it is totally funded by the government and is serviced and maintained by the equipment service so you dont pay when it breaks down!! BUT the downside is that they often don't have enough money and I believe the main reason why they managed to get me this equipment was because a they made a mistake originally and b I complained about needing it. People who ask and ask often recieve. I had to go through an assessment to see if I qualified and I did and a few weeks later it was approved and installed before christmas. Fantastic!!! I was able to drive independently for the first time in 18 months. Downside is that I can only drive when I am not too tired and only short distances like 10-15 km at a time and only once or twice a week BUT it is starting point and one can assume it will only get better. The second advantage was that my husband did no longer have to haul the wheelchair in and out the car and its 25kg!!!<br /><br />Unfortunately my husband had a little accident with the WYMO about a week ago it was not all the way down and he backed out the driveway and hit the downpipe causing the arm of the WYMO to bend thus tripping the switch too soon and also dislodging the roof rack it sits on making it a little unsafe and totally unusuable. Because it was between christmas and new year the equipment service that the repairs have to go through and the place that fixes them were both closed and luckily the guy who put it on the car has a mobile ph we just smsed him and set up the date to be fixed as the 6th January and rang the equipment service so I am excited that it will be fixed soon!Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-63134144459729809362010-01-03T23:28:00.000-08:002010-01-03T23:47:06.688-08:00TAFE qualifications in disabilityAs I said in an earlier post I originally was working as a support worker for PWD but had to resign as a consequence of that work and because the Australian Government brought in legislation stating that all support workers had to have min qualifications (certificate 3 in disability studies) to do that work I decided to study through TAFE to get this qualification. This was started in 2007, I decided to do it externally because the nearest campus offering the course was an hours drive and although I could drive that distance it wasn't easy to even at that point. So Mt Gambier a regional campus in SE of SA became my campus of TAFE. I orignally went to videoconferences but also did some subjects completely from home. They send a workbook for each subject with basic information and practice questions which you can do only if you want to because they are not marked then there are short answer questions and usually a longer "project" or 2 to complete. Now this study got put on hold for 18 months and I kept in contact with my lecturer she told me once that the course was changing and that if I wanted to complete the current course of which I have about 3 subjects plus a first aid course to complete then I would have to do it by the end of June 2010. Otherwise I would be forced to redo about 14/16 subjects again AND I would have to pay again as well (about $2000AUS) and thats the concessions rate. Anyway so we started discussions about how TAFE would be able to accomodate my numerous disabilities and whether it would be possible in the first semester of 2010 to complete the certificate. I have had contact with an amazing lady who runs senior first aid courses who has offered to do it at my own home with just me and one other person. She has been fantastic and we are hoping to find a way of completing the course the biggest prob is CPR. I have since discovered that TAFE will allow me to have a modified assessment where I am allowed to do the CPR with the manikin on a table which is rather helpful and prob the only way CPR would be possible. TAFE shut down before all this was completely sorted out and my guess is that they will reopen while I am interstate but that being said the plan has been written to make sure that everything in TAFES power is done for me to get my parchment in 6 months time!!!!<br /><br />Now obviously since I resigned from a support working job and because of my own disabilities I wont be able to shower and dress other people but once I did resign I talked to my lecturer and it was her idea to go to tutti and from there I worked on the idea of teaching viola and violin to PWD and setting up an ensemble to play in together so this is what I will use this certificate for which although not what its usually meant for what people use for is not set in concrete!!!<br /><br />The only downside is that first aid is compulsory for this certificate but for the new certificate 3 in disability it is a requirement for a job but not part of the actual certificate this would make completing the certificate tons easier and I know with the ensemble I would need "able bodied" support worker or two involved who would have first aid anyway.<br /><br />Will keep you up to date with progress with TAFEErinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-8063716997164742892010-01-03T23:13:00.000-08:002010-01-03T23:28:38.084-08:00Viola lessonsFor the seven months between July 08 and Feb 09 I was unable to go to viola lessons it was so heartbreaking not being able to play for any length of time during this period let alone go to a viola lesson. So once TAD had built the stand for me (and I returned home from a month of hospitalisation between november 08 and december 24th 08) and school resumed because the lessons ran on school terms I was able to once again return to my viola lessons. This actually presented me with a number of problems. First I had to be able to play for around half an hour (prior to getting sick in July 08 my lessons were longer 45 mins once a week AND I was able to play for much longer than that with breaks if I wanted to), I had to travel about 10km to my teachers house in an access taxi and then return home this way too. I decided that fortnightly was best because at least it was having SOME viola lessons even though if I wasn't as sick I would have preferred once a week. Well probably the hardest thing was dealing with the taxis (and not only to viola lessons) I was once able to jump in the car and drive pretty much as far as I needed to. I mean I went to Brighton once a week and that was a 70 min drive participated in Tutti from 2pm-730pm and then drove home. It was hard but I managed. When I started lessons again a whole year ago now, I had to start using taxis even going to my GP or dentist 3km from my house. This caused SO many problems I mean they dont turn up they come late occasionally they come early too. Since you have to book them well in advance in case they come late if they then come earlier than the booked time you have to wait even longer. But the problem with viola lessons unlike a drs appointment is that it interrupts the students before your lesson and after your lesson which is embarrasing for me and a bit annoying too but theres nothing we can do about it. My teacher has been extroidinarily supportive and kind and also understanding because there's nothing either of us can do. <br /><br />Despite the difficulties with the taxis once I got there I thoroughly enjoyed my lessons as always and learned quite a few new pieces of music. In July when we went to Hobart for a choral festival at the revue (basically a talent show within the festival) I managed to perform with a pianist who was at the choral festival too two movements from the Eccels viola sonata. This was amazing as it was the first performance I had done since becoming ill in July 08. I also intend to perform in January 2010 at the choral festival in Canberra in a couple weeks.<br /><br />It has taken a number of months but because of my viola lessons I have been able to get used to using my standing frame that TAD made me. Recently a ball and socket part of the frame has broken and so it is in for repairs as we speak in the hope it will be ready to take to Canberra or it will be fixed when we get back.<br /><br />Thats all for this post..Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com2tag:blogger.com,1999:blog-6512707402827081378.post-10948716604575456272009-11-18T20:35:00.000-08:002009-11-18T20:38:22.419-08:00AbbreviationsFor anyone reading I am sorry if I have used Abbreviations in my blog without clarifying what they mean<br /><br />PWD = People with disabilities saves typing it out all the time<br />TAFE = I honestly can't remember what it stands for but it is a tertiary institution within Australia which I am a student at.<br />SA = South Australia this is the state of Australia that I live in, Adelaide is the capital of SA<br /><br />Well can't think of anymore at the moment but there's probably a way of adding to this list later on.....Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com1tag:blogger.com,1999:blog-6512707402827081378.post-69602755083444410562009-11-18T18:43:00.000-08:002009-11-18T19:43:42.377-08:00The Tutti Ensembleso I joined the Tutti ensemble. I should mention for those of you who don't know that the word "Tutti" is Italian and it means "everybody" usually used in music in orchestral music to indicate that the solo part has finished and everyone can not join in again. First I joined the choir. I participated in a production called Curfew. It was a lot of hard work but a lot of fun at the same time. I think you was about May 2008 on where at a started going to the Wednesday afternoon session of Tutti. I should mention and that Tutti is a day options program for people with intellectual disabilities. they do performing, visual and dramatic arts depending on their abilities and interests. They also perform in concerts or productions and sometimes there artworks are displayed for the public to see them. This group of people are called Tutti arts.<br /><br />There is also the Tutti ensemble. This is the community choir based at Minda in Brighton in Adelaide's South. Tutti arts join in with the Tutti ensemble as well is performing on their own. Since I was interested in teaching people with disabilities how to play the violin and viola and there was a participant of Tutti arts whp had a violin and wanted to learn how to play it, it was arranged that after I had been involved with Tutti arts for a few weeks I would teach her how to play the violin as part of my volunteer work with Tutti. Unfortunately for both her and myself I ended up becoming illl one week before this was set to happen in July 2008. I have only been able to return to Tutti Inc once in the last 18 months. I am hoping to return before Christmas 2009 and I'm also hoping to attend their concert in December. I really enjoyed volunteering for Tutti and I have made many friends through Tutti as well. We still keep in contact<br /><br />What was disappointing though was the fact that once I became ill from the medications interacting I was no longer able to drive not leave the house unless I took a taxi or my husband was able to drive me. Since he works 6 days a week that is a bit difficult. So I was no longer able to participate in the Tutti Ensemble nor volunteer with Tutti Arts. To this day I miss Tutti so much and I can't wait to be better enough to be able to return their on a regular basis. However this got me thinking about being socially isolated and what I could too to fix that. I thought people with disabilities in the north of Adelaide would benefit from the Tutti ensemble or something similar to the Tutti ensemble and I thought what could I do to set it up. Since I wanted to teach people with disabilities the violin and viola I thought rather than having a choir I would set up a string ensemble from my students. Perhaps people without disabilities could also join in and sit next to the people with disabilities like a mentor arrangement. At least it gave me something to think about while I was doing rehab!<br /><br />18 months on I am still too ill to set this up but I have managed to meet a person who works for the community arts network or CAN who said when you are well enough it is my job as project officer to apply for funding and help you to find students and a venue to set this up!Erinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0tag:blogger.com,1999:blog-6512707402827081378.post-14290684115400671292009-11-17T21:32:00.000-08:002009-11-17T22:10:51.834-08:00How my journey startedI decided to write a blog about my journey as a musician with disabilities<br /><br />I am 28 years old, married for 6.5 years with no children, but two cats.<br /><br />I play mostly viola sometimes the violin and I also sing in the Adelaide University Choral Society. I was also involved with the Tutti Ensemble and various other orchestras and choirs.<br /><br />My journey first started when I became partially deaf (no hearing in one ear and some in the other) in 2006. As a string player I guess most people would have given up at this point. I already had chronic pain and at least some fatigue but these were somewhat overcome because I wanted to be involved with music so much. I had to wait til my Disability support pension was approved to get hearing aids as we could not afford them. In the meantime I went to a place called Hearing Solutions where they showed me all manner of devices that could help (most at a large cost too). The one I fell in love with was an FM system which basically consists of 2 boxes, one a receiver the other a transmitter. The transmitter has a microphone which picks up the sound from the TV, radio, a person or a viola or choir and then sends it wirelessly to the receiver which sends the sound to my hearing aid (HA) through the telecoil program and induction loop. I remember saying to the person helping me at hearing solutions when they showed it to me "Do you think this could work with the viola?" and she replied "the only way is to try. Its meant for communication generally but I can't see why it wouldn't work. We can let you borrow the equipment for a week and see if it helps you for free of course" So I took it home and tried. Well for the first time in I don't remember how long I could hear again. Not only the viola but the TV, my husband, CDs etc. It was wonderful. I took it to my lesson and my teacher was impressed with it cause it helped me so much and my intonation improved as well. I was more confident and honestly I didn't feel like a beginner anymore. I had to use headphones at that stage because I hadn't got my HAs yet. They came almost a year later. Of course this experience at that point was short lived because I was only borrowing it so I had to find a more permanent solution. Unfortunately these devices cost (currently and a different model cause they dont make the phonic ear one anymore) about $2000 Australian. I can't exactly remember when but eventually I was able to borrow a system from TAFE SA (a tertiary education institution) because I was (And currently are) a TAFE student and I needed it (at the time for videoconferences). They have been so good to me. Letting me borrow and use it for such a long time. Eventually I used the system all the time every day for hours and hours and it pretty much solved my hearing difficulties and playing the viola, and singing too. I put it in front of the choir near my section (alto) and it picks up and I know what i am doing more or less. I use it with my hearing aids now because I have them and also because in 2008 my hearing deteriorated further and so I can no longer hear through headphones anymore. Perhaps if they were really powerful it might be possible but I prefer to hear through my HAs.<br /><br />As if that wasn't enough problems as it was I then was diagnosed officially in 2007 with Fibromyalgia (a chronic pain syndrome). This led to various medication trials and eventually my dr prescribed two medications which interacted with each other causing me to be extremely ill unable to even hold up my viola or get it out of my case. Again most people at this point probably would have given up. A number of people suggested to me couldn't a stand be made to hold up the viola? I told it was a great idea and a friend of mine told me about a group called TAD (Technical Aid for the disabled) They are retired engineers who volunteer their time to make things for people with disabilities (PWD) which are otherwise not able to be bought. Labour and time are free and you just pay for materials. So we designed what I call the "holding up device". I am totally new to blogging so when I work out how to put a picure here I will post it. It basically straps around my middle and has metal adjustable poles which also rotate 360 degrees. There is then a "bridge piece" which attaches to the viola (and a separate one for the violin) which clips onto the main frame of the device. As far as I am aware it is the only one of its type in the whole world. This has meant that I can put the instrument onto the stand and the weight is taken by the stand, not me. It has taken a lot of getting used to and I will write more about it later. The stand was completed at the end of 2008 with further changes made to the bridge piece in early 2009.<br /><br />I want to go back a bit to early 2008. I was doing certificate 3 in disability studies at TAFE SA externally and my lecturer was talking about how I could use my certificate in work. Usually the certificate is used for people who want to become qualified as a support worker for PWD in the sense of personal care and that sort of thing but really it can be used for anything in disability. I originally was a support worker but it became too difficult trying to do the transfers and things I had to resign in early 2008 and find a different way of using the certificate. Anyway I was talking to my lecturer who knew that I was interested in music and teaching viola and violin to PWD and she knew that I would love to join the two areas together. She suggested contacting the Tutti ensemble. I had honestly never heard of them but I rang them up and it was arranged that I would join the choir and become a volunteer person. Unfortunately for me they are a 70 min drive from where I live. At the time this was OK because I was able to drive myself there and back, later this became an issue.<br /><br />I will leave it here for now and write more about it later onErinhttp://www.blogger.com/profile/13046735304257600621noreply@blogger.com0