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
Erin
Thursday, April 29, 2010
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
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
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
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