Tuesday, October 1, 2013

long time no hear from me

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.

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.

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.

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.

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.

The web address is www.erinscraftprojects.blogspot.com.au

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.

Hopefully someday my dream of having an ensemble will come true!

Friday, March 2, 2012

Tea 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.

Sunday, January 2, 2011

update on everything

I just thought that i would do a bit of an update since november last year!
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!

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!

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.

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!

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.

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.

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.

I dont know how others with disabilities cope but we are both struggling at the moment.

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.

Wednesday, November 17, 2010

Hearing aid and FM system update

I 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

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.

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!!!

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
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.

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.

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.

I did have a disaster though - keep in mind ive only had these for 24 hours and not good with new technology either....

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.

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.

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.

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.

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.

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.

I have finished my TAFE course practically and should recieve parchment soon.....

And I am hoping that the music ensemble and teaching will start sometime next year.

Thursday, April 29, 2010

Update on music ensemble

Well 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.
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.

Well the microwave is beeping gotta go sort out tea

Tuesday, April 6, 2010

New medical information

Recently 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.
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.
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.
So between keeping up with TAFE trying to do first aid and all this medical stuff we have been pretty busy lately

Studying with TAFE

When 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.
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.
I have passed everything so far a few sets of questions and made a start on one project for leisure and recreation.
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
But all in all TAFE so far has been a rather positive experience!
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 in