Trev shifts, The Oil's and a New Set up
Trevs blog
Hi again my trusty blog readers it’s been a little while since my last post so I thought another update was in order..
Its been an interesting and challenging few months as expected but I’ve had a few wins amongst my ongoing MND challenges. One of the more significant wins has been my living arrangements. After being on a waiting list for the last year and a half ive finally scored a new MND friendly rental. When I first got the news about the new pad my son Lee was also set to move out of the old place so timing couldn’t have been better. This new place is a fully accessible front unit with a view of the park across the road. It’s perfect for the care support workers, very close to the freeway entry/exit and is set up with plenty of space inside for the mobility challenged lifestyle I now found myself in. Carers, family and friends can now assist me in ways that were becoming increasingly difficult in my old place. Sharon (queen of carers) has continued to be great and has given the new place her tick of approval, it’s wonderful to have Sharon back after her recent trip home to Scotland for the last month or so. Sharon’s amazing with me, not only does she share a wealth of first hand experience in caring for MND patients but always seems to go above and beyond in terms of caring which I think makes her a true professional and an extraordinary human being. I really do feel cared for when she’s around, many thanks Sharon. Mia has also been excellent along with Rinzin who’ve both really stepped up in Sharon’s absence. Lately my energy hasn’t been the best so unfortunately a big portion of the day is spent in bed (half the day) the rest is often spent in my trusty recliner unless an outing is on the cards. The outings are definitely less frequent these days so it’s always great to have friends and family make the effort to come and see me. It might be a chore for them at times but it means the world to me.
One recent outing that I’m still buzzed about was a night out to see Midnght oil when they toured Perth recently. The Oils are definitely one of my all time favourite bands so I couldn’t resist the temptation to get head out and get amongst the crowd. Seeing the band play meant more to me than just going to see a good band, it was also a decent trip down memory lane. The Oil’s music has been engrained into my soul over the decades now, countless times I would have found myself listening to them all over Australia and even while travelling to different parts of the world, live or recorded their music always pulls at the heart strings while also inspiring feelings of strength and unity, influences that we can all use at times right? Not only have I always craved their music but I’ve also enjoyed covering most of my all time favourite songs while drumming in different bands over the years. Redneck Wonderland, Dead Heart, US Forces, King of the Mountain, Beds are Burning and Blue Sky Mine just to mention a few. The band didn’t disappoint and rocked the audience from start to finish. So timeless are the songs that im certain they’ll never grow old. This timelessness is just one of the many beautiful gifts that great music has to offer the world. Steve, one of the previous art director’s at Xpress magazine (where I had once had the privilege of working) came along with me to the gig. Steve had tickets to see the Oil’s in Adelaide but couldn’t use them due to a move back to Perth, so with this in mind I thought I’d shout him and another old mate from Xpress Rob tickets to the gig. With this, the wolf pack was complete and the night was always set to be a good one. Thanks for the help on the night too boys.
On the topic of good lads I want to take this opportunity to thank some of the other good ones. In the last few months the need for 24hr care has been a necessity. My mind is still as sharp as a razor but my body has become completely lazy. I now need help with pretty much everything except for music reviews and Dad jokes. This help is not always glamorous as you can imagine but a few loyal friends have stepped up along with the family to rotate weekly. These guys don’t miss a week and each of them stay the entire night to help with anything and everything. There are no words to express what this means to me, I’m sure some people go there whole lives not knowing the level of friendship and loyalty that these guys have shown so to Jonesy, Sean, Eugene, Marcus and the rest of my family that have been helping out, thank you from the bottom of my heart. If you’ve never had a mate look you in the eye and tell you he loves you then you’re missing out. It’s not only the act of kindness that I appreciate but the type of company these guys offer in my condition is unique and quite extraordinary. It always puts a smile on my face to hear these guys say that the time we spend together is mutually beneficial. One of the boys even thanked me and said that when we’re together it feels like the busy and often superficial world outside these walls seems to stop for him just long enough to find a bit of peace. He said the conversation was always rich, meaningful and that it was rare that any mention of greed or anything materialistic was made. It’s a definitely a blessing to hear I can still be useful.. you’re very welcome lads, now can you get my bottle please I need to take a $&SS :-)
In other news I have a new head operated button courtesy of MND’s IT Dept. I can use it to work the TV, answer my phone, write messages and even scratch my head, although I’ve got to be careful not to combine any of those things. More time on the V pap machine (positive pressure breathing) has also helped me get energised and soldier on to each new day.
MNDAWA continue to offer much needed support with things like the V PAP, air conditioning and ongoing care so thank you MNDAWA.
Anyway that’s about it from me for now please stay tuned for another update in the near future and thanks for reading. Remember to always keep smiling and love one another, please feel free to pop by and say hi.
Trev