June 13, 2019 at 2:32 am #4557221B Baker StreetKeymaster
Say hi to the forum and tell us a bit about yourself!
June 13, 2019 at 2:32 am #4556BrankaPupovacParticipant
Hi, I’m Branka & I sustained a t10 injury 26 years ago. It feels like 10 lifetimes ago! I’ve travelled lots, played wheelchair tennis competitively for many years & am now a busy mum to a 6 year old boy. Life is never dull! I look forward to meeting others on this forum.
June 13, 2019 at 11:12 pm #4563danholtParticipant
What’s up team.
my names dan, I’m a C5/6 quad from concord. I’ve been injured now for 11+ years from a fall while living in the ski resort of whistler.
i currently work as team leader in the peers support team so if you’ve got questions you wanna ask me please don’t hesitate
June 18, 2019 at 12:23 am #4594Jess SCIAParticipant
I’m Jess. C6-T3 incomplete quad for 19 years after an MVA in 2000, with my sister. I’m a Peer and Family Supports Coordinator with SCIA. Give me a holler if you need a chat!
July 18, 2019 at 6:31 am #5702gemstonesgemologyParticipant
Hi I’m Kevin and I have C6 sensation & C7 muscle function quadriplegia which I’ve had for 40 years. I had my accident when I was 19 on the way to work. It was my first year out of high school. Since then I have completed a Diploma in Gemmology (84), certificates 1 to 4 in Welfare (94), certificate of attainment in Desktop Publishing (95) and are Degree in Social Work (99).
I had a colostomy in 2004 and tender nieces done in both hands starting in 2011. I am a dedicated evangelical Christian, married in 2005 to my very lovely wife Elizabeth where I helped raise our three boys from her previous marriage.
I ran a jewellery business during the late 80s, worked for SOCOG during the Olympics, ran the pastoral care department at my church 01-07, guest presenter at TAFE on sexuality and disabilities for three years, two stints of pastoral care at Blacktown Hospital (00-05, 08-10). Organise pastoral visits, Bible study and monthly church service at our local nursing home 02-19). Organising accessible fishing events (11-19) and currently volunteering at Ryde Rehab promoting accessible Fishing (19). I also regularly work out at a gym (09 – 19).
My interests are fishing and promoting accessible Fishing and gem cutting.
As you may gather from my profile I’m very open and happy to talk to anyone about anything to do with fishing, gemstones or any other area of life that people would like to talk about.
July 22, 2019 at 2:12 am #5710rockyParticipant
Hi I’m Mark and am a partial para. Not being able to walk I’m therefore in a wheelchair. Jess asked about the Ghan
I have traveled from Adelaide to Darwin and loved it. However I did travel in the most expensive carriage. My wheelchair is too wide so I had to use one they provided.
In May this year I flew to Venice then boarded a cruise ship and stopped at many places on the Mediterranean Sea. Cruising is ideal. You only unpack once and getting around in the ship is easy.
Again my wheelchair is too wide for the aircraft so transferring to the flight wheelchair and again in and out of the seat was not easy. This is the third cruise and have another one booked.
Happy to expand on my travel experiences if anybody is interested.
July 22, 2019 at 2:46 am #5713Amy.t3Participant
Hi all, i sustained incomplete t3/4 injury due to a massive tumour on my spinal cord. Had thoracic laminectomy July 2018 to remove the ping ping size tumour. The severe compression caused brown sequard syndrome (loss of feeling/sensation on the right side of my body and loss of function/strength on the left side of my body). I have spent the last 12 months learning to walk again, and manage my ongoing pain and fatigue issues. Despite my issues, i know how lucky i am. Had the tumour not been found when it was, i would have ended up being a quad. I think that all of you who are kicking goals in life while being wheelchair-bound are all rockstars.
July 22, 2019 at 9:09 am #5718em99Participant
Hi all, my name is Emma. Currently 20 years old. I was diagnosed in 2007 with Brain Cancer, receiving Chemo. As a side effect from the Chemo it cause weakness in my left left, as a result I was in a wheelchair for a year but was able to progress to a a frame and walking sticks and today to train for my ultimate goal of walking independently ??
July 23, 2019 at 2:35 am #5720caterae1Participant
Hi, I’m Catherine or Cate. I am a T9/10 complete Para. I live in rural NSW. I grew up on a property and rode horses from age 2. Most of my social and sporting life have revolved around horses. I completed in Campdrafting from age 11 and started playing Polocrosse (not Polo that the Royals play) aged 18. I had a fall from a balcony at 38 when my life took an dramatic change. I still try to attend Polocrosse carnivals through our winter months when I can, my nephew and friends play and I like to support them. I now take my camera and take photos from the sideline in my 4WD power wheelchair. This keeps me involved in the sport. Travelling in rural areas is difficult as accessible motels are sometimes difficult to find or non-existent, but you either don’t go or you adapt.
I travelled to Perth last year by air. I have to transfer to the isle chair to board the plane but I find if you leave yourself plenty of time the staff have been fantastic and help as much as possible.
Happy to chat about anything really. cheers
July 24, 2019 at 11:10 pm #5746nath91Participant
Hi All, I’m Nath. I was actually born with a congenital condition affecting my spinal chord but I was walking until I sustained an L4/L5 injury late last year. I’ve been using a wheelchair ever since. It’s been an interesting transition, a little overwhelming to say the least. Reading the posts on here has really helped and I look forward to reading your posts and interacting with you all.
July 25, 2019 at 6:56 am #5752Shirley CarpenterParticipant
Hi My name is Shirley and I’m the Librarian and General Organiser of Information and Knowledge here at SCIA. We have lots of information about all kinds of things here – on our website, in the Resource Library, in peoples heads and if we don’t have it we will go and find it. I’ll be hanging around the forum to help out, adding my contribution where I can and generally trying to be helpful.
July 31, 2019 at 4:19 am #5846EUGENEParticipant
Hi, my name is Eugene, and I am a paraplegic, C5/6, but incomplete. I have been in a wheelchair since my accident during a visit to the UK in June 2014. Due to my age at the time, I cannot apply for assistance under the NDIS, but I have a MyAgedCare package.
My wife Helen is a trained nurse, and we have written a book about our experiences with the accident, 3 months in a specialist UK Spinal, 4 months in the Prince of Wales Sydney, and one month in Canberra Hospital, followed by care at home.
I was an aircraft engineer for 50 years, and have an interest in military history, and I guide at the Australian War Memorial.
Before my accident my wife an I travelled a lot, and we hope to travel more in the future.
August 8, 2019 at 12:26 pm #5908DavidHamParticipant
My name is David Ham and I am a 58 years old Wool Grower and Sheep Farmer from Oberne Creek in Southern NSW. I sustained a spinal cord injury as a result of a cycling accident at C3/C4 two years and a half years ago. The accident occurred near Wagga Wagga and I was taken by ambulance to the Base Hospital there. Later that night I was flown by fixed wing ambulance plane to Sydney and was admitted to the Prince of Wales Hospital spinal care unit . I was paralyzed from the neck down and had decompression surgery the next day less than 24 hours after the accident occured. No bones broken but the disk between C3and C4 had shattered and fragments had crushed my spinal cord .
With the successful decompression my rehabilitation began with intensive physiotherapy and a very steep learning curve, something many reading this will be familiar with. Undoubtedly the biggest challenge I have ever had in my life but hey what a team at POW ! The surgeon ,the physician , the nurses ,physiotherapists ,the OT’s ,the dressers and the social workers , I will never forget them all , they were fantastic . I also want to thank my partner Sarah for her tireless and often tough love , extra physio homework and endless patience at a difficult time . My children have been fantastic , with regular visits , help on the farm and great communication. I also made friends with a whole lot of other patients that I would never have met in normal circumstances and you all inspired me , we had some great times and we laughed and we cried , there is a very strong bond created going through this experience .
Well I was very fortunate and I was able to learn to walk again and walked out of the hospital after 7 weeks , my hands are affected but they are pretty good. My bowels and my bladder are functional but not perfect either and I have significant nerve pain in my arms and legs but i’m learning to live with this and have dramatically reduced my medications for pain relief. My balance is also still pretty bad and prefer to use walking poles (recommended by spinal outreach physiotherapy) to assist with my stability although I can walk without them .
I have been back on my farm for a two years now after further rehab in Wagga Wagga and farming for me has never looked better . Job access has enabled me to purchase some new machinery enabling me to work with my disability for which I am also very grateful . My goal is to have suitable accommodation on my farm for people with spinal cord injury ( inspired by Sargood on Colaroy) so that you can come ,have enjoy a farm experience and visit me !
December 3, 2020 at 1:35 pm #9404Jess SCIAParticipant
I grew up around Wagga, and had my injury on the farm driveway 20 years ago. I’ll be back in Wagga for Xmas and would LOVE to connect with you 🙂 As we have a few different country folks who wish to go back to farming post injury, would love to get your info around how it went for you, mate.
August 12, 2019 at 9:23 am #5950
My name is Jason and I’m a T12 para since 2001 after a MVA.
I’ve recently moved to the Central Coast with my partner of 2 years from Tweed Heads.
I have a really successful married daughter who runs her own business and who I am very proud of and delighted that she’s just given birth to my first grandchild, a beautiful baby girl.
My interests include deep sea fishing, sailing and photography.
I like all sports in general.
I recently spent a fortnight at Sargood on Colloroy and cannot speak highly enough of it and recommend it to everybody.
I learnt a lot there and found interests which I previously didn’t know about.
Pre accident I loved scuba diving and discovered that the team at Sargood puts together scuba diving courses there on a couple occasions each year.
I hope to do a refreher course in scuba diving there in the near future.
I also enjoyed hand cycling with mountain bikes through the national parks nearby as well as testing out the X8’s which are electric wheel chairs that are all terrain access chairs that handle the sand on the beautiful Colloroy beach with ease.
They have plenty of courses and activities there which are well worth exploring.
I’m hoping to meet new friends and to participate in this forum.
Thanks for taking the time to read my introduction!
September 9, 2019 at 12:22 am #6123timhParticipant
My name is Tim and I’m a C 5/6 Quad living on the Central Coast. In 2013 I was a pedestrian hit by a motor vehicle. Since that time I have been very fortunate in how my body has recovered functionally. I had a lot of great support around me during my inpatient stay and still do to this day.
I’ve been to a few of the BBQ’s at Sargood and enjoy catching up with people and meeting new people also.
If anyone has a question they want to ask me please don’t hesitate.
September 16, 2019 at 6:32 am #6298taliatsourouParticipant
My name is Talia and I am part of the Customer Connect team at Spinal Cord Injuries Australia 🙂
I have only been a part of the team for the past 2 months but I am loving every bit of it and meeting new people!
September 16, 2019 at 11:07 pm #6299
I’m Gnome! (actual name is Chris) but prefer Gnome as I answer to it more than my name.
I had a fall on the 28th July 2019 when heading to the outside toilet which resulted in me being transported to John Hunter Hospital and having emergency surgery on 29th July 2019 on my L4/5 of which a Discectomy and Laminectomy were performed due to loss of feeling in my left leg and severe numbness and some loss of feeling in my right leg, still very early into recovery (6 weeks yesterday) but able to walk most days without pain and am forever grateful to the neurosurgeon’s, nursing staff and physio’s since. Still adjusting to feelings coming back, the numbness is going but returns in my feet quickly after walking for around five minutes.
I’m a full time carer for our son who has Landau Kleffner Syndrome and have been his carer now for the past 17 years. I go hunting with my daughter and friends once or twice a year, would be more if possible. Retired firearms instructor and range officer but still keep in touch with the sports as often as possible, enjoy a little fishing and always love a swim in the river’s or dams during the warmer months. I go on regular long bush walks with our dog who also enjoys a good free run.
I hope to contribute to the forums as often as possible and thank you for reading and sharing my experience.
May 4, 2020 at 3:04 pm #8346
Thanks for introducing yourself to SCIA Forum.
I have a question or two regarding shooting as a sport for the disabled.
Do you know of any shooting ranges or clubs who run target shooting as a sport, either rifles or pistols, and allow disabled people to participate around the Newcastle to Sydney areas?
Also, are there any prerequisites or licensing requirements to participate?
July 2, 2020 at 1:55 pm #8585
G’day Jason ?
Sorry for the very late reply as I’ve been busy with moving forward with life!
I’m aware of two ranges in the Newcastle/Hunter region that one should be able to access in a chair and accommodate. Cessnock pistol club is very well set up and access is pretty good with ramps. The only down side is getting from the car park which is all dirt so wet days would be a bit tricky.
Seaham range is the other and like cessnock pistol the car park is dirt unless changed as its been a while since being to both.
Only prerequisites is for gun license, the mandatory knowledge test and NO criminal record for 10 years or longer. All info can be found here https://www.police.nsw.gov.au/online_services/firearms
Hope this helps.
September 19, 2019 at 1:11 am #6317Davey GParticipant
My name is dave and i am originally from Narrabri where i was born in 1963,was diagnosed Spina Bifida at 7 weeks premature. Live in Sydney for 30 years and have been part of SCIA for most of that time. My interests are Nrl dragons Drag Racing and being involved in Disabled Surfers Australia for last 15 years with my wife Tannia whom i have been married for 25 years. My motto in life is No Pain No Gain so we work on things that are not comfortable in life and just keep on going.A lot of people with Spinal Issues/Trauma injuries have discomfort to deal with as they get older and i am just one of those dealing with pain management and recently diabetes as well as depression issues due not dealing with things that happened a long time ago.
November 26, 2019 at 10:42 am #7183elizabethjthomasParticipant
Hello I’m Liz
I wondered if there are any people with an invisible disability diagnosed as an incomplete SCI as you are still walking and which dr diagnosed you?
October 13, 2020 at 3:02 pm #9142
Are you refering to AIS B level or damage to the Cauda Equina resulting in Cauda Equina Syndrome?
February 28, 2020 at 3:06 pm #7835celestejacquesParticipant
My partner had a C3-4 spinal cord injury a week ago today . He has no movement from his neck down and is having difficulty breathing . It’s a very traumatic time and we are wanting to connect with people with similar injuries .
May 4, 2020 at 3:16 pm #8347
I,m very sorry for the trauma that you and your partner would be going through at this early stage of his injury.
I recommend that you get in touch with the SCIA Peer and Family Support Team.
There are members of this team who have high level quadraplegic injuries as well as lower paraplegic injuries all of whom have a vast knowledge of SCI due to their lived experiences.
I am a member of this team so feel free to contact me and I can help with all the information you may need at this time.
March 6, 2020 at 9:04 am #7868GilParticipant
Geez not sure what to say so here goes.
I’m Gil (short for Gilford), live in Canberra and I’m 58. I’m an incomplete quad from fracturing c5&c6 after being pushed into a lake in 1979. Had c5, c6 and c7 fused. Spent 3 months in Prince Henry Hospital in Sydney, then a further 9 months as an outpatient and Canberra Hospital Rehab. I lost movement in left leg, both arms and hands, lost sensation right side from chest down. Regained partial movement in left leg enough for me to walk but with a limp. Also regained movement in arms and partial in hands. Unable to straighten fingers left hand and little, ring and middle finger on right hand (right hand index finger and thumb have full movement but lost sensation.
Worked for 30 years in the public service and was retired on invalidity in 2010.
Have lived a full and happy life with disabilities but now I’m getting older things are slowing down and getting more and more difficult with day to day living. From 1980 to 2005 had no issues, no pain.
Now I’m suffering from back, hip and knee pain. Plus nerve pain right side of body. Also having spasms left leg and left side of back.
Just got approved to the NDIS so hoping things are going to get better with treatment.
May 2, 2020 at 8:02 pm #8345tonyhousden-com-auParticipant
Hi folks, I am Tony from Tamworth, I have an Incomplete SCI following a cycling accident early in 2017 at age 54.
After a few weeks in Royal North Shore and then rehab I walked out, no spinal surgery (yet) Crushed L1 with SC impact, C4,C5,C6 Fractures plus a handful of other bits and pieces.
Major facial reconstructive surgery, brain injury, most people have no idea though apart from some minor facial scarring and a wobbly gait. Like everyone else here, nobody but my wife and myself see what it takes to prepare for and get through the day. Neuropathic pain, bladder and bowel function issues and Sleep apnoea issues make my life interesting.
I work in sales, but only 3 days/week post accident, fatigue is my biggest issue, both physical and mental, both of which lead to significant pain.
Have travelled in Australia and overseas since the accident, as well as pre accident as well.
My philosophy in life revolves around the simple fact that “If my eyelids open in the morning and my pulse rate is above zero, it is a spectacular day!”
All any of us can do is to make the best of what we are each dealing with.
May 20, 2020 at 2:01 pm #8386annecurrieParticipant
Hi, my name is Anne, and I am one of the new Peer and Family Support workers in WA. My story is, I sustained a C6 C7 incomplete SCI while out training on my road bike for my first 1/2 Ironman Triathlon at the age of 50. I have always been an exercise addict, so it was an interesting process going from, being a busy mum of 3 and busy husband and training 4-5 days a week, to a wheel chair lifestyle. My motto was to remain as Physically active as possible and if you don’t use it, you will lose it. So, Neuromoves became a big part of my daily activities.
I am really enjoying being part of the SCIA family and if anyone is looking to come and stay in Perth, our CHOICES house is waiting for you.
November 19, 2020 at 11:48 am #9274FionaJ20Participant
Hi, my name is Fiona and I live in Melbourne with my dog Maggie. I have a spinal cord injury T8-T12 following the rare diagnosis of a spinal dural arteriovenous fistula in February 2019. I collapsed on my way to work, it was the first day of a new job. Last year was all about acute hospital stays (I was a frequent flyer at RMH emergency department, rehab stays (all long and lengthy) and home rehab which is on going. Life is a lot quieter since this happened but I am very thankful for my neurosurgeon. I work part-time in Emergency Medicine
Dealing with a lot of pain and fatigue but still getting up in the morning and trying my best
December 1, 2020 at 3:37 pm #9341annecurrieParticipant
Anne here from Perth. Just wondering if our Perth wheelies were aware of the new accessible beach mat that is in place 24/7 down at City Beach. It will be there for the next 12 to 18 mths. Spinal Life, in conjunction with the Town of Cambridge are also introducing their Sand cruiser Beach Wheelchairs for hire. If you need further info, you can contact the Town of Cambridge on 089 347 6000. There’s info on the Spinal Life Facebook site as well.
I haven’t had the opportunity to try it out yet, but hope to get down there soon.!
February 14, 2021 at 7:28 am #9920charlie 05Participant
Hi my name is vicki, 4 yrs ago I had a horse riding accident. From the moment I was made to stand and walk to ambulance I knew something was dreadful wrong the pain running down my leg was intense . Although I dragged myself to the ambulance I kept telling them at hospital I was numb in hip they xrays my hip said nothing g was broken and just bruised. Needing help to get to bathroom I kept looking for what I believed was going to be massive bruising but nothing ever showed up. I had other injuries from accident broken collarbone 6 ribs. Upon discharge my walking was getting worse. Returning to outpatient clinic unable to walk they decided maybe I suffered from a spinal injury. This went on for 18mths when a diagnosis was made I had
Gluteal aponeurotic and proximal It Band Tears And traumatic Spondylolisthesis L4-5 (the tears are very rare and the professor I saw believes the tears to be extensive as usually they would not show up on a mri). The tears to the itband I was told was impossible unless you took to it with a chainsaw, yet there I was with a diagnosis. So 2yrs after my accident I was told ‘unfortunately this is inoperable and more than likely a permanent injury that will deteriorate.
My symptoms are numbness from my hip to groin ( which got worse after physio treatment), inability to walk properly, feels like a tourniquet wrapped around my thigh the more I try to drag myself around the more pain I get. incontinence is also an issue from moment I was injured yet I didn’t understand it was a symptom thinking it was old age and pain. And my good leg is suffering from the way I drag myself around too now.
I’ve been living on painkillers for the last 4yrs as I try to be as normal as I can, still do as many normal things as possible work,horseride,gym most activities I feel like vomiting but I keep going.
I use crutches if I have to go to shops but they don’t help only make me faster. I’m in that much physical pain I break out in a lather of sweat just wanting to go home. I have just qualified for ndis and have been given a wheelchair the more I use the chair the less pain I get. My body is silent I long and dream for that feeling. I am constantly fighting myself and don’t use the chair popping yet more pills feeling so fraudulent and well the Old saying if you don’t use it you loose it. Being such a rare injury no one can tell me what to do I feel so alone. Using a wheelchair I feel like such a fraud. I watched a YouTube wheels to walking the gentleman explained how he could still walk but caused pain and used a wheelchair it felt like I wrote the script.
im after advise should I pop pills (if I can get them doctors are not keen prescribing )or use a chair? For some I’m sure it’s a nobrainer but I just don’t know what todo.
Then I have the problem if I use the chair how do I come out of the closet after 4 yrs people are not going to believe me.
May 20, 2021 at 3:18 pm #10481Chan1804Participant
I am really happy to be part of the forum and have already gained a lot from reading previous forum topics. I wanted to introduce myself as a tenant journey specialist in the SDA space. I love walking alongside people through the SDA journey and supporting with my previously specialist support coordination experience (really passionate about accommodation).
I also wanted to let you all know about our upcoming SDA opportunities with my amazing organisation – please reach out if I can offer any assistance with anything SDA related.
COOMERA & PALLARA!!
Brand new 3 bedroom (+On-site Overnight Assistance) SDA house built to High Physical Support SDA standards but can also support people with Fully Accessible SDA funding. Home located in both Pallara and Coomera and are ready for Transition July 2021.
Contact me on 0431 099 564 or via email at firstname.lastname@example.org
Can’t wait to speak with you!!
October 14, 2021 at 7:17 pm #11087Anonymous
Hello, my name Jhonny Scechk, i am live at europe and i am student LPM
April 30, 2022 at 5:41 pm #12397dawnParticipant
Hi My name is Dawn.
I have a Spinal Cord Injury as a result of radiation treatment for cancer (Cancer is in remission). I live in Berowra, Sydney. I am C2 C incomplete, with no sensation or control below T6. Good to meet you all!
I have a question that I am having trouble getting an answer…I am doing physio, and practicing moving myself along the bed/plinth (learning to do manual transfers) and my pants keep sticking to the bed and my wheelchair seat. This is making it very difficult to move my butt! I’ve tried different pants, and I cannot work out what fabrics work…some cotton is OK some synthetics work, but I can’t seem to work out what the difference is…Can anyone recommend fabric/pants that work?
…It’s a silly question, and, my physios haven’t really looked at this before…I do not have the body for lycra as day wear, so I am looking for normal clothes that will work :)…
All comments welcome!
May 1, 2022 at 2:17 pm #12398gemstonesgemologyParticipant
There is no silly questions when looking for answers to question about adapting life situations to disability, whether it is a new or established disability. The only dumb question is the one not asked. This is usually for introductions, questions are best on the forum were they will be answered.
I’m glad your cancer is in remission. I don’t know how long you have had your disability and being incomplete opens a whole lot of possibilities how the SCI may or may not effect you. If your SCI is new and relatively youthful your strength will increase and the sliding issue will eventually will not be an issue. If however your like me getting on in age and very restricted in movement why not consider a getting a hoist, but then there is still the car etc. Your location is not a very wheelchair friendly area.
A: Natural fibbers such as cotton, linen, silk and probably bamboo and rayon are best because they absorb moisture such as sweat for people who have a properly functioning autonomic system (sweating is on function). Nylon is good for sliding on transfer devices and durability of fabric. It can look cheep. Gabardine is a good blend of both synthetic and cotton/wool depending on the blend.
I hope this helps
July 14, 2022 at 3:39 pm #12830ricardonomesquiParticipant
My name is Ricardo and I am a SCI researcher at Edith Cowan University (Perth). I have always been interested in human physiology and, more specifically, in how our brain tells our muscles when and how to contract.
During my PhD, I investigated how our spinal motoneurons are able to amplify the information that comes from the brain in people without SCI. I am now running a multicentre project on neuroplasticity after SCI.
We are looking for people in Perth (WA) with an incomplete spinal cord injury to take part in a project in which we will investigate a promising therapy which may help people with incomplete spinal cord injury become stronger.
More information in the flyer below.
If you would like to receive more information and potentially participate, you can contact me at email@example.com.
Location of experiments: Edith Cowan University (Joondalup) or The University of Western Australia (Crawley). Participants will be given a $120 gift card and transport or parking will be covered.
September 26, 2022 at 7:05 pm #13250
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