SPINOCEREBELLAR ATAXIAAustralia Inc |
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Jane Tombs StoryHello everyone ! My name’s Jane Tombs Dec 2007 Firstly I am afraid I am big into Indigenous issues, so before I start I would like to acknowledge the traditional custodians of the land we meet on today – the people of the Kulin nation who have protected this land for so many thousands of generations. I pay my respects to their elders and their customs and wish to acknowledge their continuing spiritual connection to this land I would just like to thank all the people involved in getting this group off the ground and for everyone for coming, and those who are getting the information later – especially the very busy Doctors and for their invaluable personal time I must admit I am one of those people who would rather jump out of a plane than speak in public so please excuse my nerves but I was very inspired to travel heaps by the very brave Brendon Murphy who went around the world in a wheelchair alone researching Friedrich’s Ataxia, after I heard him speak here in fact. Very sadly we have just lost him - see http://www.ataxia.ie/ We thought it would be good to help others in a similar situation by sharing some of my experiences, and others, and what I have HAD to find out over the years – maybe more than most through living on my own with SCA1 a dominant inherited ataxia. In my case with an increasingly common sleep disorder diagnosed last year – although I know there are many different ataxias and they are very variable even within families. I must stress these are just my personal views and everyone’s different, I very much respect that – I just hope this can be the start of some ongoing active Ataxia support group for the whole of Australia very soon. I have printed off a sheet of my talk and all the contacts for everyone’s info – as well as those who haven’t been able to make today’s meeting themselves. I must stress that these are only suggestions and not recommendations whatsoever. Hopefully we can get a reference book and website going. I started to get more symptoms and got sick of people accusing me of being drunk so I went for the test at the Victorian Clinical Genetics Service in 2003 to make sure I hadn’t got MS or another similar condition. Through there I met and see every few months Professor Storey who specializes in my type of SCA and others I believe. I know many friends have emphasized how important it is to have good Neurologists I wish I had taken Prof Storey’s advice a long time sooner and got walking sticks because I used to get very angry and depressed about people accusing me of being drunk – but I now realize it is THEIR problem if THEY think like that !. I know I would never say such short sighted things, or think negatively of people with a walking frame, or would my good friends. This condition certainly helps you to sort out the good, caring friends with considerate personalities for sure ! Actually I wish I’d got a 2nd stick sooner because now I can go much faster, using it opposite to your step making a square – when it’s not windy and I have to use the frame. I was loathe to use a walking frame but the alternative was being so depressed when I was marooned at home for fear of falling on my sticks. So the frame is a lifesaver and keeps me able to get out and even into the car, especially down the windy beach or at night. It is great because NICE people again are all the more considerate, PLUS you can sit down anywhere. If I am going somewhere longer I have to take my wheelchair – which incidentally I got an AE and P grant to help me pay part of luckily. Also I must thank Professor Storey for a letter I carry in my car to prove to eg Police that I have a medical condition resembling drunkenness – which has been extremely useful – although now I have a yearly driving test with an Occupational Therapist. When I can no longer drive, I am going to get a part motorized and part manual tricycle – rather than a fully automated one – since I feel I would like to keep the strength in my legs going as long as possible. I grew up being used to half my father’s family getting old quickly, before it was diagnosed, but I know my father, even though he had Spina Bifida from birth which complicated his Ataxia and was often wracked in pain in bed, would work our religiously every single morning an hour for years. He was a total inspiration and always said that there was always someone worse off than you. Personally, although I would give anything to have my father back for a minute, I am SO glad that he DID have us, and I believe Ataxia made our time together of an even greater quality. It is not cancer or AIDS – I’ve had those scares and that puts Ataxia in total perspective. I know my rellies did no exercise and were shadows of my father by comparison. Personally I believe “if you don’t use it, you lose it,” and “the more you do, the more you CAN do” – within limits of course but I think it is essential to keep as fit as possible and your muscles strong to help you stop from falling – as mine often have ! and to maximize your fitness levels in case of any cure. I remember always saying to my sister, how I thought Ataxia was no big deal, but I must admit having the test really put into perspective and I desperately needed counselling. I went into a deep depression for months and totally lost my appetite and very nearly wasted away – I owe my life to a brilliant dietician who got me onto protein drinks to regain my appetite. The critical thing I think is to find yourself an excellent GP - who is a lifeline ( mine sees me every month or so as I need ) and is the key to all sorts of other allied health Support providers. She got me a disabled parking sticker which is invaluable and depending on the council, lets me park in other suburbs in a lot of other areas for free too Officially there are no drugs as yet but I live in hope because there is loads of research going on worldwide, plus Ataxias seem very similar to a lot of other more common conditions I have what’s called a regular Medicare “Care plan” which is reviewed every few months. Even though there is no cure this plan co-ordinates all the various services we have managed over the years to get: ie Counselling, Occupational Therapy, Speech therapy who also monitor my swallowing. Swallowing and infections on the lung are the big weakness with many ataxias and for that reason anaesthetics are a real hazard which other Drs need to be aware of eg in casualty where I have had some nightmare experiences – a big reason I think we should carry health cards mentioning these risks. I can also highly recommend Physio and especially pilates and every morning I do a set of stretches for a few minutes to get me going. A brilliant physio recommended Pilates ie core strength exercises which improved me back to how I was years before I started them. Tips that physio told me were to walk barefoot and with my toes up ( although you may need to put felt around any furniture you run into) and also have fitness balls to sit on at my computer and also whilst watching tv – helps your core strength without you realizing. I try to use a step and exercise bike too. I used to choose a course of Physiotherapy for free in the Care Plan but now I have ongoing counselling which my GP and I feel is essential. Also I can recommend, my local Community Health Centre which has many classes you can join very cheaply and even a discount scheme for gym They put me on all sorts of waiting lists eg for a case manager from Inner South Health Area – another essential – who is an ongoing social worker who helps me with everything from Centrelink (who are a nightmare for many people I have learnt ). Also with my local council and paperwork – since I can’t write, meals on wheels etc. You can also get a case manager apparently even if you have a carer even ie to help co-ordinate your care My case manager has waitlisted me for various Gove packages eg Homecare and Linkages – the 2nd has just come through and they help me with most of my council help and even taxi vouchers for medical appointments I get help from my local council most days eg homecare ie cleaning, shopping, taking me to hydrotherapy and gym, home maintenance and meals on wheels. I think you need to get assessed by your local council for this, but my Case Manager has helped me to get more hours and even negotiated the price for me. I am lucky I think to be in a quite progressive council area of Port Philip – we even have Disability Forums to give them feedback every few years I wanted ongoing physio so I got on the waitlist to be referred to Bethlehem hospital – but now I get to see another Neurologist there Dr Andrew Churchyard too, who were particularly helpful when I had to stay for back disc problems but they also specialize in many chronic conditions too. I also get Speech Therapy there including swallowing studies. Good tips I have learnt are not to talk whilst eating, tip your head down when swallowing and always to carry water with me and try to drink Bethlehem’s other services include: Occupational Therapy, Counselling, Music Therapy, Pastoral Visits and Community Nursing Phone calls or visits, and I visit their Day Centre fortnightly. The Day Centre provides nursing and allied health services in addition to social activities and interaction between patients – some even in the hospital wards. I must admit going to the Bethlehem and also Friedrich’s Ataxia events – which is a much more severe form of Ataxia where kids are in wheelchairs and there are far more worse complications – makes me realize there are far more people worse off – and anything could happen tomorrow The Bethlehem Occupational Therapist has managed to get me a disabled parking space in front of my house – even though they wouldn’t let me before because I have already got a carspace at the back but it is difficult because of steps. I have got the number of the inspectors, who I now know some, and am always ringing up and reporting fit drivers who often nick it ! and ones in the city too ! The OT has also got me grab rails at my front door and around the bath, and a ramp at the front door which my local council Aged and Disability Maintenance chap built very reasonably for me, although I believe that there are Aids and Equipment grants for home improvements for several thousand dollars as well as equipment ones. There may be a waiting list but some companies hire equipment too. In fact my Linkages package paid for my walking frame – which as I said is a lifesaver because I got very depressed when I was scared of going out in the wind and getting blown over ! Oh yes I started to get home visits and help from the Library then – another service which you might not be aware exists Other modifications I have made in the home are using a thermal cup with a lid if I want to carry a drink anywhere. Also to move my microwave next to the sink so I don’t have to carry boiling food from the microwave a long way to cool down. I’ve got a tray for food and drinks on my walker too. When I fell and broke my hand I got a Mepacs alarm – which is essential to raise my friends if I fall or when my back discs went and I couldn’t move I get all my alternative therapies very cheaply at Sacred Heart Mission Clinic, St Kilda even Dental and Optical Therapy too ! Having grown up on an organic farm, I am a vegetarian and try to be organic – which I know helps MS sufferers enormously too. I get help on most days and the others I try to keep active and volunteer – as Dr Churchyard said, and research has proved, it is so important to keep mentally active and have interests and outings as much as possible. I can’t promise you though that you’ll all meet Grant Hackett down at your local gym, but I just did, so there’s an incentive for you all ! Personally 3 things keep me going : My Church – Collins St Baptist which help the homeless and refugees – I thank God that luckily I am quite spiritual, and my family were, and I am sure that helps me to cope ! I remember them saying “There but for the grace of God, go you”, and “There is always someone worse off than you !” That is probably personally why I like being involved with the Bethlehem Hospital too as they were founded by the Little Sisters of Mary and even have a chapel and Minister and pastors who visit me. I volunteer at an Aboriginal school and their community groups, and the Greens – who I thank God for because their preferences actually got Labour in and over the 50% voters mark, plus they want to double the carers’ allowance and set up a Commission for us. Also because I feel I can actually do something for the Environment rather than getting depressed. I actually studied Environmental Biology at Uni so understand maybe a little more than most in the medical articles, although there are some good medical websites and dictionaries. I have got some excellent lawyers, Maurice Blackburn – who offered to come and speak too - who are helping me to try and claim for total Permanent Disability under my Super scheme and then cash in my other supers. Actually I wish I had got their advice earlier and not tried to keep going back to work or working part time so I can recommend now that you should seek that sort of advice if you are still working. I can also highly recommend getting a Companion card which by law allows a carer or companion to accompany you to events for free and is widely accepted even by Ticketek, Ticketmaster, the Arts Centre, all my local council venues and is a God send Trance music – melodic and uplifting – not the ‘doof doof” sort is real music therapy for me and thanks to this Companion card I must admit I still go to a selected few events with my walker or wheelchair. I feel like I’m floating in heaven – as I recently admitted in a talk at my church – I can highly recommend it if anyone ever wants to listen to some or join me There are also some really good websites – but mostly based in US – although hopefully that is one of the first things I would like to hope we could organize first eg the National Ataxia Foundation which even has a chat forum – naf and internaf I believe. Other recommendations my lovely GP made for later on is “homeshare” where someone lives in and helps you for a few hours per week and “Assisted Dogs” – like guide dogs for disabled people, I personally would also like some sort of ID cards – similar to the ones we have for cars Thank you all for your time and please don’t hesitate to ask me any questions – sadly I am from England but please don’t hold that against me Also when I think I’ve got it bad I think of many of my Indigenous Primary School students. But on a more positive note I don’t know how many of you saw a great film “My brother Vinnie” about another good Aboriginal friend of mine Vinnie ? ( brother of the famous actor Aaron Petersen ) with Cerebral Palsy who constantly celebrates what he HAS got. I’d like to end on a positive note that there are many research centers all over the world, and many similarities between our illness and much more common ones, so we must not give up hope and try and keep as fit as possible in case of a cure ! Reference list of useful contacts
Victorian Clinical Genetics Service, Alfred Hospital, Commercial Road, Prahran, Vicc 3181 : Tel :9276 2000 / 2522 Cavalry Health Care Bethlehem Limited, 476 Kooyong Rd, Caulfield, Vic 3162 Tel : 9596 2853 www.bethlehem.org.au Melbourne Sleep Disorders Centre : Dr David Cunnington, 50/166 Gipps St, East Melbourne, Vic 3002 Tel : 9928 8658 Leki Walking Sticks : I got mine from Mountain Design approx $100 – they have sales and membership discounts too Aids and Equipment Program : for home + personal equipment grants : 1800 783 783 GP : Disabled Parking Permit, Care Plan, Medicare Counselling Scheme Vicroads : Medical Review, Information Services Dept, P O Box 2504, Kew,Vic 3101 Tel : 9854 2407 Melbourne City Parking Permits The Electric Bicycle Co P/L, Unit 15 / 91 Tulip St, CHELTENHAM VIC 3195 Tel 1300 767 134 Travellers Aid Disability Access Service Pilates incl Fitness Ball Exercises, and Hydrotherapy Local Area Community Health Centre eg Physiotherapist, Occupational Therapist, Social Worker, Dietician, Speech therapist, Dentist, Counselling, Financial Counselling, Legal Aid, Fitness groups eg Hydrotherapy, gym, falls, social etc Case Worker – Disability Linkages packages, Homefirst packages and the new "My future, My choice" program which is designed to keep young people in need of residential care out of nursing homes. Contact : Department of Families, Community Services & Iudigenous Affairs : 1800 101 888 Local council HACC (Home & Community Care) departments will know who provides services in each area Yooralla Brotherhood of St Laurence - care for the elderly and people with disabilities Mepacs, your Personal Assistance Call Service, Reply Paid 192, Mt Eliza, Vic 3930 Independent Living and Rehabilitation Equipment : Statewide Home Health Centre, 501 Nepean Highway, Vic 3186 : Tel : 9591 6234 Companion Card : 1800 650 611
Maurice Blackburn lawyers – for help with super and disability insurance : 9605 2700 Naf website Internaf Other international sites : Centrelink : Cheap chemist and for natural products : Chemist Warehouses : 1300 734 876 Homeshares : believe there are several schemes eg Assisted dogs, PO Box 455, Engadine, NSW 2233 Tel : 1800 688 364 Gorgeous melodic, uplifting trance and progressive website Other good websites – look at title for subject : Research
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