Breathing Check, Australind Escape & Recognition

Firstly to my health. I had a checkup with my Neurologist Dr Edis a couple weeks ago & he suggested a Gastrostomy operation (feeding tube) should be done in the next month or so as a backup option for my weakening throat muscles. He needed me to have a respiratory test to check if I was healthy enough to undergo the procedure. Fortunately I blew good results, a little weaker than previous but still ok. I'm just waiting now for a date then I'll get it done & be in hospital for a few days. Not looking forward to that at all. anyway...

Travelling has become a little harder once again with needing care & proper facilities wherever I stay. I found out MSWA have a respite home in Australind also available to MND patients with everything I need. I went there last week with my sisters & Mum to see what it was like. Situated in 'Treendale' there was a nice lake nearby for a scoot around & a shopping centre across the road for groceries. The friendly staff were fantastic in assisting me with my personal care &  made it very easy for my family to relax. I'll definitely be going back there again in the near future.

Treendale Restbite Unit

I had a present surprise in the post this month too from MNDAWA, a recognition certificate of my fundraising & awareness effort for Trevsfest. I've always believed in life that if you try hard enough you can turn a negative thing into something positive. This certificate confirmed my belief & I feel very proud of myself for achieving this.

That's about it for the moment, I have a few other things happening in the next few weeks but I'll keep you all posted. . Hey there's been another Trevsfest Tee Celeb siting. Legendary Australian big wave surfer Ross Clarke-Jones with my mate Steve in Sydney. What a champ!!

Ross Clarke-Jones & Steve Castle

T2 Delivers...

The last few weeks have been hectic leading up to Trevsfest 2 with organising the licence, marketing, venue setup, bands, merchandise, donations, volunteers etc.. My stepbrother Gary a journalist from the Sunday Times approached me not long ago about how he could help. I said maybe we do a story & plug the fundraiser that was coming up. He did a great job with a 2 page spread that painted a picture of my life before MND & what it was like living life now. He also setup a radio interview on 6PR for Trevsfest Coordinator Steven (Seve) DesChamp to spread the word some more. Thanks for the support Gary, I reckon we got some more heads in the door that day because of it plus great awareness.

Adam, Me, Cara (MNDAWA) & Seve

We didn't involve MNDAWA last year but this Trevsfest I really wanted them to be a part of it. Their little merchandise stand did well with The Donatos selling most of what they brought followed by a speech by Cara from MNDAWA explaining some facts about the disease then thanking everyone for attending & donating. We had 320 payers through the door & half the ticket sales went to MNDAWA. A fantastic result to what was an awesome day. Thanks especially goes though to my Surfing WA family who volunteered to help setup, run the door, lifeguard & even play in some acts. Love yas..

My 50th birthday the next day was spent quietly with my family which was perfect after Trevsfest.. my throat was pretty sore from trying to talk most of the day & my body wasn't gonna move much at all, in fact most of the day was spent on my recliner!

In between all the festivities my mate Seve had uploaded a song he wrote for me whilst holidaying on Lembongan Island a couple of years ago titled   'The Tide is Rolling In' (Trev's Song) it's available on iTunes with all proceeds going to MNDAWA. Search his act 'From Worlds Away' & download this amazing song. The boys actually performed the tune live at Trevsfest & included my son Lee on percussion which was pretty special.

Always a big blog this one, thanks everyone from the bottom of my heart again for attending Trevsfest, I'll see you all soon or maybe you'll see me? a reality tv show? hint.. hint stay tuned...

Trev

Ramp Bowling, Homecare update, Trevsfest 2

Well here we are in 2017. I hope everyone had a great Christmas. I enjoyed the Surfing WA Xmas Party at Warwick Superbowl & did surprising well using the bowl ramp, I was consistently knocking down 9 pins at a time. Some of the staff said I should be drug tested !!! It was a great time. 

Homecare is going well thanks to Sharon Howie at MSWA who is my fulltime carer. She has been one step ahead with equipment & care as my disease progresses. Also dropping by for a visit was my new MNDAWA Advisor Sara Duque who will be handling my other affairs associated with MND & sitting in on my Doctor appointments at the WANRI clinic.

       Me & Sharon (Left)  Me & Sara (Right)

Trevsfest 2 is coming together well with only a few weeks away now. I've been busy liasing with volunteers, donators, merchandising, bands etc. Hopefully we get a nice summer Sunday afternoon & it'll be a cracker of a day!

Surfing WA crew volunteering for Trevsfest duties..

I look forward to seeing you all then.

Trev

Trevsfest 2 Confirmed as Motor Function takes another hit...

Me & Emma Donato / MNDAWA Van

Accompanied by my good friend Emma we headed out to Sir Charles Gardner Hospital this morning in the MNDAWA Van for my 3 monthly checkup. Dr Edis examined me & noticed unfortunately the disease is progressing through my right side now & is gradually decreasing motor function of my right leg & arm. Obviously when I cannot stand or grip anything anymore this will be a big game changer in my care but one thing at a time. Positive feedback from my Speech Pathologist though as I'm still maintaining weight with my diet, I'll take the good with the bad for now.

Seve Deschamp, Me & Adam Springhetti

Well it's confirmed Trevsfest 2 or 'T2' is a goer for Sunday February 12th 2017. Adam, Seve & I have started the ball rolling from our offices at Trigg Beach securing all the acts for the day & working now on some volunteers for Bbq, lifeguarding, door people, raffles etc.. hopefully it will be as successful & entertaining as the last Trevsfest. New artwork & merchandise in progress with my good mates Steve Swain & Sean Bell, event promo will be up soon.

What a year it's been with everything from Trevsfest, Thee Gooroo Cup, Rock for a Reason, MNDAWA fundraising walks, quiz nights & overall MND awareness. I actually made the cover of MNDAWA's newsletter this month that captures their year in review. Please join their mailing list & keep up to date with the fundraisers, they are doing some wonderful work out there to help sufferers like me. Go to: http://mndawa.asn.au

It's been a long time but I managed to also get myself into the ocean again with a modified wheelchair which rolled me straight down the boat ramp at Trigg Beach into the salt water, gee it felt good! Hopefully do it again soon.

Well that's it for me, thanks for your support.. 

Wishing you all an awesome Xmas & New Year!

Bring it on in 2017 I say!

Trev

Light & Shade

i've had a few appointments to attend to over the last few weeks at hospital so I thought I'd try out the MNDAWA Courtesy Van & take the pressure off my family having to take time out of work to get me there. What a great service & run by their volunteers too getting me in & out of the van with my scooter. I had a respiratory test one day & blew 84% which is pretty good still & no cause for alarm just yet. Other appointments were for nutrition & diet giving me some solutions to some of my eating problems. All in all though not bad, I got alot of positive feedback from all the therapists.

On a sad note I lost my Grandma last month just a week after I returned from Sydney. She died peacefully though with my Mum by her side on 17th October. She was 94. Unfortunately it was too hard for me to get back to Sydney for her funeral but I knew most of the family would be there. A big thank you to my cousin Philip who gave a nice speech on behalf of all the grandchildren, Grandma would of loved it.

So we go from a funeral in the family to an engagement! what a nice surprise. David popped the question over the weekend to Michelle who still can't wipe the smile off her face. Congratulations to you both! All going well the plan is for a 2017 wedding which will be a hoot!

There's been talk amongst the crew about Trevsfest 2 in 2017 with negotiations in progress with venue & a date but will keep you all informed when secured. Thanks again to those that have been paying me visits from time to time & also helping out, it means a lot.

Trev

Sun, Personal Care & Sharkies Win!

Finally some fine weather here & there to get my wheels down to Surfing WA & catchup with the Intermediate Surf Team Group. Some of these kids I used to coach a few years ago when they were little grommets! Last weekend they got some great results in the Rip Curl Grom Search at Trigg Point. So proud of how they have progressed & stuck with this great sport. 

For those close to me they know about my battle around home lately with my own personal care. Things like showering, dressing myself, meals, cleaning etc have been getting progressively harder & harder for me to do every week. It's a hard decision to make because I want to remain independent but I've had to organise professional help now. This also takes pressure off my kids that constantly worry about me, especially if I'm home alone. I've also lost a bit of weight in this time too due to not physically been able to eat enough because of my weakening throat muscles & my Doctor is now concerned that if I don't turn this around soon I may have to get a tube inserted in my stomach (P.E.G) & have fluids administered directly. Anyway one day at a time but have made changes to my diet hoping I can turn things around in the meantime.

Father's Day..

I've been using my electric wheelchair inside more for a couple of reasons.. I can't walk far, maybe 5 to 10 steps unaided before I get tired & also to feel safe. I probably average a fall every 2 to 3 weeks if I'm trying to walk everywhere. I've had no falls since using the chair which is good. To my two beautiful kids & my close family who have helped me through this particular difficult stage, thank you all so much for your support & understanding. It is really hard coming up with solutions to cope when this bloody disease is constantly changing my physical capabilities.

Matt, me & Lee.. Go Sharkies!

On a brighter note, I mentioned in my League blog that I was a Cronulla Sharks supporter & that the team were going ok this season.. well better than ok, they've won the 2016 NRL grand final! The Sharks had not won a grand final in their 50 year history. Thanks to my sister Erika who got us tickets through her friend at Channel 9 in Sydney with the NRL & made us a part of such a historic moment for the Club. Up, Up Cronulla!

Getaway...

The Whalebone Classic is an annual longboarding surf competition held in July by Surfing WA at Cottesloe Beach. Lee (my son) & I were invited to meet some of the sponsors one evening with other Surfing WA staff at The Cottesloe Hotel. The function took in a silent auction of surf memorabilia, including a signed surfboard by all the pro surfers who participated at the Margaret River Pro this year. All funds raised that night were deposited to MNDAWA. 

Nusa Lembongan Island has been one of my favourite getaways for a few years now & this month I managed to get back there with a few of my friends. I walked laps of the pool pretty much everyday whilst the others went surfing etc. The warmer weather is definitely better for me, especially for my feet! I want to thank Seve, Teele, Casey, Putu & staff at Villa Panorama for all their help in making me feel safe & relaxed so I could enjoy myself. I wont forget it..

Seve DesChamp, Me (with Casey's handbag) Teele DesChamp & Casey Sparks.. Thank you.

Lembongan... boat transfer, no job too big for Rocky Crew, Putu & Me poolside, Villa view..

This month also marks one year with my website! I can't believe how much has happened in this time.. from the highs of Fundraising Events & Awareness to the lows of battling this disease. Thankyou to all that have been part of my journey..

Family is everything... My nephew Luke & myself having a walk with a few laughs as usual.

Winter ..

Have to be honest I have really been struggling with the cold this winter, even getting chilblains on my feet somedays but that's also a combination of poor circulation from not walking as much. I'm toughing it out though with spring weather just another month away. I've received yet another set of wheels! An Electric Wheelchair this time supplied by The MS Society. I'm registered with their Neurodegenerative Conditions Coordinated Care Program (NCCCP) which gives me home care aids & support which has been really helpful. I've got the chair down to Trigg Beach a couple of times now to check out surf, see the gang at Surfing WA & breathe in the salt air.. I absolutely love it!

Giving back when I can, I attended the MNDAWA's Quiz Night with my kids & family friends last Friday night. We had a heaps of laughs, learnt alot too! haha.. $8000 was raised that evening for care & support for sufferers like me in WA. 

Meanwhile in Indo... Surfing WA Coach Billy Hangan has been ripping & spreading the word in his Trevsfest Tee! yew.. thanks Bill!

Me & League..

A lot of people know I spent many years drumming professionally in bands & instructing surfing but maybe don't realise that Rugby League has been another big passion of mine. Growing up in the inner suburbs of Sydney I went to Holy Cross College in Ryde where I first learned to play the game. This school produced some great Australian Kangaroos & NSW State of Origin legends like Benny Elias, Paul Sironen & Mark Riddell. The school was really dedicated to fielding good teams & had the support from the rest of the students especially at 'The Amco Shield' competition. This was a mid week competition that was running at the time whereby we all wore our uniforms after school to the games & supported our school team. I played for the Holy Cross College team in the Balmain District & we did really well with a grand final win at Leichardt Oval in 1978. I had the current record for a 100 metre sprint for my age so the coach played me on the wing.

In 1979 the family moved to Perth, not a big Rugby League state but I managed to find a Club close to where I lived. I played a few seasons with Sorrento Rugby League Club & enjoyed playing five eighth most of the time for the team as well as goal kicking duties.

As I approached 17 the usual things happened with work commitments, girlfriend, parties etc.. plus I had started at a print factory (pre-xpress magazine) & was finding myself going out & supporting live bands as well as learning the drums secretly in a spare room for a year or so before I started to play my own gigs. I thought I was done with Rugby League.

North's Rep Team 2004 - First Rugby League game played at NIB Stadium.  Coach: Tony Spence / Manager: Trevor Newby

It was my son Lee who was now 8 years old that was playing Soccer at the time & wasn't really enjoying it so I scouted around & found the Joondalup Giants Rugby League Club nearby. Lee & I went to a game in Fremantle & watched the team play & after met the Under 8's Coach Tony Spence. Lee got a run the following weekend & was hooked! We saw the rest of the season out & it was awesome to be around the game once again.

The following year I put my hand up for some Assistant Coaching & Managing, then proceeded as a coach for the Club for 8 years! Coaching boys was always going to be challenging especially through their teens but I enjoyed being a mentor, teacher & friend not only on the field but in life too. 

In 2007 I managed to get the Under 16's to a grand final & win it! a very big highlight of my life. I then coached the following year before finishing up in 2008 & concentrated on my Surf Instructing where I found I was using some of my coaching / working with children skills that I had learnt over the years in Rugby League & that really helped.

Lee in Sydney for Origin Game 2004

Over these years I got to a few NRL grand finals & State of Origin games, Lee & I enjoyed a Blues series victory in 2004. I am a Cronulla Sharks supporter & have been for years. Currently they are having a good run & I'm hoping they get to the grand final this year, that would be all time!

My next mission is to work with my good friend Tony Spence to get some MND Awareness into the Rugby League community of Perth. We are throwing some ideas around at the moment, with meetings organised in the next few weeks. If not this season maybe the next one, see how we go.. One last thing I have to say about Rugby League is if you have ever played it is that it teaches you a little bit about life too.. When you find yourself behind in the game, fatigued, everything hurts & you feel you have nothing left in the tank - Dig deep! Get up! play the ball if your tackled & get on with it! I do it everyday..