Walk in my Wheels

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Filtering by Tag: spinal cord injury

Bugger! Infection and Hospital

The past few weeks have gone pear shaped to say the least.

I got sick in the outback while driving back from a trip to Victoria and by the time I made it to the Royal Darwin Hospital they told me the skin and tissue around my bum was infected and needed to be cut out.

Waking up from surgery they told me they’re had to remove part of my rectum and some tissue… but it got worse… two days later I was back in theatre and more was cut out… the next day I was informed that if the infection continued to spread I’d need to have my legs amputated. I seriously thought I was a gonner.

We had family and our church and beyond praying for me and in the next surgery the doctors were blown away that the infection had stopped! I’m calling that one a miracle. Still, I’d had my rectum, anus, and lots of tissue, muscle, and skin removed in an area measuring 14x14x9cm over my bottom and extending down my left thigh.

It hasn’t been an easy road since then. Having a C5/6 spinal cord injury means when my body experiences pain it throws me into Autonomic Dysreflexia - in basic terms I start to drip sweat and my blood pressure goes haywire - my body systems go into overdrive and it’s super dangerous. There’s been a LOT of that happening despite maxing out pain meds.

Royal Darwin Hospital was fantastic but the plastics team felt like the reconstruction surgeries were beyond them so I fought for a transfer to the Austin Hospital in Melbourne. I’m now in the Spinal Ward which has made a world of difference as they ‘get’ SCI, just yesterday one of the nurses saved me from a bad AD episode.

The plan at this stage is to let my wound start to heal - that requires 3 packing/dressing changes per day which are bloody awful - but at least I don’t need to go into theatre each time as I did in Darwin. It’s important that all traces of the infection have gone before the reconstructive surgeries begin. They’ve still got me on powerful antibiotics and on infectious diseases control as they work to identify the specific bug I have.

The main stress for me during this time is seeing the impact of my wife Jess and daughter Eleven. It rips me apart to see how hard it is on them. We’re in the process of getting them settled somewhere for the next couple of months here in Melbourne. Thankfully my beautiful adult daughter Courtney lives here and has been a generous hostess while they find something a little more permanent and it’s been heart warming seeing photos of her and Eleven together.

Then I’m already planning to get an apartment for all of us when I’m able to be discharged (hopefully early in the new year). Although I’ll be on bedrest still and likely need to go back to the Austin three times a week for dressing changes, I desperately want to get back to family life ‘as usual’.

Money. We both have lost our incomes. Our emergency fund has already been depleted. Although there is a small amount of financial support available it will be nowhere near enough to pay for an apartment in Melbourne that is close enough to the Austin for regular trips back but also has a good view (because I need to see out - I’ve already had enough of staring at plaster walls!) We still have mortgage payments to make and all those usual day-to-day expenses.

It’s not my usual thing to ask for help. The fact I agreed to let my sister Karen set up a Go Fund Me campaign is surprising to me… but as she pointed out… how else am I going to raise the funds to pay for my family to stay with me for the next 9-12 months? Having them around is the only thing giving me any sort of joy and strength right now.

So as much as it pains me to ask, I’m asking… please help me to keep my family together. If you are not in a position to give please share with your networks www.gofundme.com/f/eleven-needs-her-dad

A massive thankyou to all who have already supported the campaign. It’s truly blown me away and given me so much hope for the future.

Keep up the prayers and messages of support, they give me strength. I’m not up for visitors just yet, and likely won’t be for a few more weeks but I hope to touch base a bit on here and social media.

Me Ol' Mate Jamie - 20 years on

I recently had the pleasure of spending some quality time with me ol' mate and his family in his home town of Launceston... we met in the spinal rehab 20 years ago... but here I'll let him tell his own story:


My typical day starts about 6 am rising up out of bed ready for a days work on a construction site as a carpenter, pushing my body and brain to the best of its capabilities like any 22 year old healthy male's body is designed for. On weekdays after work depending on what day of the week or what time of the year it is, I would do what most guys would do which was hang out with mates, and have a drink at the pub after work meet my girlfriend or depending on the time of year during summer cricket training, during winter boxing and running. Weekends play or watch sport, mow my lawns and my father's as he relies on me as he is older now an unable to or take my dog for a walk go fishing.

A simple but happy every day life, not complicated but what I felt was the life for me. Many other people would probably agree - a job, steady income, girlfriend, mans best friend a dog, mates, a roof over my head, and fantastic health - it seems perfect life on track really AND THEN THAT'S WHEN IT HAPPENED.

Let me introduce myself my name is Jamie Kelly from Tasmania, and on the 29th of October 1995 at the age of 22 I became part of a group that I knew nothing about, that is a spinal cord injury (SCI) or in my case a T-6 Complete paraplegic. I woke up not knowing where I was or what was going on and very groggy not being able to move to be told eventually when I could understand things that I was involved in a motor bike accident and have broken my back and would be staying in Melbourne for 6 months or more for rehabilitation at the Royal Talbot along with other injuries such as loss of sight in my right eye, breakayl plexus in my right arm, jaw rewired with missing teeth a loss of over 20 kilos a trachy in so I cannot even communicate back to ask questions all I can do is listen as a doctor just keeps telling me what is in store for me. Face reconstruction when I saw myself in the mirror I could hardly believe the reflection to see that I was actually looking at myself and not someone else.

When I was told my back was broken I knew that meant I could not walk again, which a lot of people knew from common sense or word of mouth about that injury - but was I shocked to find out the other symptoms that go along with a SCI such as no feeling from level of break, spasms, hyperreflexia (also known as autonomic dysreflexia), loss of bowel and bladder control, bladder infections, pressure sores, and if that wasn't enough then the rush of other things started to enter my thoughts like where am I going to live? My place is not wheelchair accessible it has stairs, a bath, tight corridors and there goes sport and what about an income because there goes my job.  Will I be able to drive again? What world am I living in now, can I cope and am I strong enough to do this? Have I really got friends or people just hanging around and relationship wow that's friggin scary to even think about, and can I still have kids? So many questions and things to organise and yet I'm supposed to concentrate on getting healthy and strong again just to sit up so I can start rehab.

Well you too may have these thoughts and the answer is yes you can have these things and after rehabilitation you can adapt and continue on. I'm now 41 and married from a new relationship since my accident with children and yes we can learn to drive with hand controls. You will find your friends will stand by you and help when needed after all that's why you can call them your friend.

You will learn to LIVE in a different way but it's still worth living so don't give up, it's just a new chapter to your life.

Like any injury it will test your spirit and who you are as a person, but at the end of the day you are still you - just not walking - so keep on "fighting" for you and your family.

Tasmania Travels - getting lucky in Hobart

Our final days in Hobart consisted of enjoying the harbour views, solid time with the bennies and Peg (an upright mate I used to play footy with in Waaia in Victoria) and his missus Chrissie before heading to Launceston to see some old mates from rehab.

Peg, me, and Boof in front of the Grand Chancellor Hobart

Peg, me, and Boof in front of the Grand Chancellor Hobart

We stayed at the Grand Chancellor in Hobart for three nights, lapping up the 5 star luxury, which ended up being paid for in the winnings off the roulette wheel at the Casino - my numbers 33 and 35 came through for me again. For the full report on the hotel room take a look at the review blog post... did I mention it had an AAAAAAAMMMAAYYZZZIIINNNGG view over the harbour... you'd pay 4 figures a night in Sydney for a view like that!

Whilst there we visited the Tasmanian Museum and Art Gallery which was right across the road - check out the pics below of the pretty groovy sculptural ramp come courtyard seating. We didn't have enough time to have a good look around but what we saw was really interesting.

We also called into the Maritime Museum of Tasmania where we were greeted by ol' mate x 3 - they finished off our look around with some entertaining stories (even if they did have a tendency of repeating themselves!). Fantastic access here and a lift is going in to open up the second level of the building.

On our drive up from Hobart we stopped into say goodbye to Boof and he recommended we take the turnoff to Ross for a stopover... and we were glad he did.... Ross is one lovely old town and I even bumped into my mate Bruce from the cigarette shop in Echuca there! It boasts the third oldest bridge still in use in Australia - a sandstone number constructed by the convicts in 1936.  There's many lovely old buildings down tree-lined streets- including the old barracks for the soldiers - throw in a great bakery, and a fantastic antique shop or two and this is one town I was happy to have discovered. No antique finds for me, but I enjoyed the process of looking! 

Then on up the highway to Launie...

Tasmania Travels - Triabunna Cabin Review

For our first week we stayed at the Triabunna Cabin & Caravan Park on the east coast of Tasmania, about an hours drive from Hobart. It's a lovely quiet quirky little fishing town with everything within walking (or wheeling) distance.

We enjoyed our stay at this small but busy cabin & caravan park. We had the Superior Cabin which is a new one bedroom, wheelchair accessible (level entry) cabin with a roomy lounge / dining area, and full kitchen. It suited our needs well.

The owners were friendly, they introduced themselves upon our arrival and were eager to hear our feedback and to improve things where they could.

Only things that let it down was the shower bench wasn't installed properly and thus didn't fold up as it should - I was concerned I would injure my feet on it while showering - hopefully this will be fixed. Also the bed was a little too high (we usually find them not high enough!) but the feet could've been removed if we'd wanted it lowered, other than that it was a comfortable bed with lots of room (we had it set up as a king bed, but it can be separated into two king singles).

Other notes:

  • The laundry, main toilet block (for campers), & reception office were not wheelchair accessible. 
  • My companion dog was allowed to stay, but not in the cabin. 
  • The free wi-fi service was very good - much better than the usual camping ground networks.

One of the greatest attractions in Triabunna is the ferry service to Maria Island (pronounced Mariah -  like the singer), apparently a beautiful pristine island with great walking tracks - I'll never know as this proved to be yet another ferry service that has a strange definition of wheelchair accessible. This ferry is definitely NOT wheelchair accessible - hopefully thanks to the chat I had with the booking lady, they won't be telling people from now on that it is - there's no way I could make the trip sadly.

Highlights of the town for me was watching the activity on the wharf - there were tonnes and tonnes of squid being bought in while we were there, an archaeological dig that was underway at the old Barracks next to the Spring Bay Hotel, and the friendly locals including John who kept offering us plums off his trees.

Next stop... Snug Bay Cabin & Caravan Park...

 

Ramps & Rehab in NSW

Yesterday we came across a bike shop that also does mobility equipment, with a small black portable ramp (with high vis tape across it) against the small step into the shop that ordinarily would've made it inaccessible to wheelchair and scooter users.

We had a quick chat with the business owner who has operated for 20 years and had been told he wasn't allowed to make permanent changes to the entryway... and he needs to offer access to his customers... so that's what he's gotta do. Simple. As. That. When pressed further on the legality of the ramp he explained in NSW the law allows Removable Portable Ramps as long as they were removed out of work hours.

I am.... confused. How can they be a trip hazard in QLD and not in NSW? Can anyone shed some light on the ins and outs of the laws in this state?

I also checked out the Royal Rehabilitation in North Ryde in Sydney and was pleasantly surprised at their Spinal Rehab set-up. It’s on a huge site and has lots of activities, tennis courts, a grouse garden where they eat what they grow, an obstacle course to keep your wheelchair skills up to scratch, and for chilling out a barbeque area with plenty of tables. I caught up with a few Wheelies doing their rehab and found everyone happy and positive about the future.