Tag Archives: Motor Neurone Disease

Motor Neurone Disease (MND) Awareness.

Today, I’d like to introduce you to my much loved school friend, Kirsten, who was diagnosed with Motor Neuron Disease (MND).
Having known Kirsten for much of my life, it’s hard to find the words to do her justice. So, I will hand over to her and her most recent post about the efforts of her daughter and niece, to educate and fund raise at school to support MND.
On a personal note, I live with a chronic autoimmune disease, which attacks my muscles and lungs. Prior to treatment, I was severely ill and spent around nine weeks in hospital on diagnosis. However, there was treatment, even if there was no cure. The importance of treatment is something we should never take for granted.
Now, I’ll let Kirsten speak for herself…

Best wishes,

Rowena

Kirsten Harley

My gorgeous niece Susy is in the high school leadership team that decided to organise an MND fundraiser. In lieu of me speaking – because, y’know, the whole no-larynx-bed-103 situation – Kimi and Iwrote this for Susy and her to read in assembly. To say I’m proud of these two doesn’t come close!

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We were going to ask Kirsten Harley, my auntie and Kimi’s mum, to come and talk to everyone about motor neurone disease. But in November she had her voice box removed as part of life-saving surgery to connect her to a ventilator, and she is still in hospital.

So she and my cousin Kimi have written this and weI will play some video from 2 years ago.

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Everyone, put your hands in your lap. While this is being read, imagine that even if you try your hardest, you can’t move your arms.

Now, imagine…

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Weekend Coffee Share…December 17, 2018.

Welcome to Another Weekend Coffee Share!

Being so close to Christmas, I should be able to offer you a slice of home-made Christmas cake. However, I haven’t gotten around to that yet. Or, writing more than a couple of Christmas cards. Had you popped round yesterday, you could’ve had a slice of the All Bran Cake I made, which loads of dates, apricots and pecans and is best straight out of the oven covered in lashings of butter…yum. Yet, all is not lost. I have some scorched macadamia nuts from Haigh’s Chocolate Shop in Sydney. They’re very yum!

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All Bran Cake…My Grandmother’s Recipe.

Well, there are only eight sleeps til Christmas and the last week has been hectic as expected. I think it was Tuesday night, that we attended the End of Year School concert, where our daughter was dancing with her dance class and also performed a contemporary solo, which she’d choreographed herself. Our son was also working backstage and we saw quite a lot of his black shadow lurking in the background. That was a fun night which climaxed with the teacher’s band, which was a lot of fun. Even as a parent, I find it intriguing to see teacher’s actually unwind and party.

Tuesday, I headed down to Sydney to meet up with two school friends. One of them is living with Motor Neurone Disease (MND) and is currently in intensive care after major surgery, and we wanted to touch base. I was expecting this to be a challenging visit and very confronting, although I’m quite used to the hospital environment and being the patient. The shoe was on the other foot this time, with my friend and I wanting to give our friend respect and dignity, but not too sure about what to say or how to listen given her speech difficulties. Although we all go and visit people in hospital, most of us have had no training or preparation for it and feel very much out of our comfort zones. Dread knowing what to say, even though just being there is enough. No doubt they just need to feel loved and see a familiar face.

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Elf meets pianist Michael Hope at David Jones’s Elizabeth Street Store. He even got to have a turn.

On my way home, I stopped off at the Gordon Violin Centre looking for a new bow for my violin. Replacing your bow is a major decision for even an amateur violinist and there’s a lot to think about in terms of the weight of the bow. Do you prefer a light or relatively heavy bow? Well, I thought I’d go in there and try a few out. This was quite a big step for me, representing a transition from mediocre violinist, to someone progressing and taking their instrument more seriously. However, I wasn’t quite prepared for what a leap this would be. As I walked up the stairs, I found a metal security door with a violin shaped into the framework. You had to press a buzzer to get in, which seemed rather formal and I had a feel I was about to step into very expensive, upmarket territory way beyond the $100 mark I was thinking of spending on my bow. Life at our place gets rather crazy and bows do get sat on. I’m not quite at the point of making a big investment. Not yet, anyway. So, you’ll understand that I was feeling rather sheepish when the door answered and I entered into this incredible salon environment which could’ve been in Paris, London, New York. There were rows of cellos and the decor was antique and 1920s-1940s and my grandparents’ era. I was spellbound. Yet, the best was yet to come. There was a room within the room, which was absolutely immaculate and there was a chaise longue and an upright piano inside. It could well have been a practice room or recording studio. I was in love! Meanwhile, I’ve found an $85.00 bow and he recommended I brought my violin in and tried it out. Ouch! I was left stammering but grateful I’d moved on from the $50.00 violin I’d first bought on eBay and at least had a Stentor. I’ll have to keep you posted on that in the New Year.

Thursday, I headed back down to Sydney for a lung function test and appointment with my lung specialist. This was just a routine thing, and I did a brief post showing some of the lengths staff have gone to spread some Christmas cheer: Hospital Cheer: Thursday Doors.

Whenever I have these medical appointments, I usually go on a little detour afterwards as a pick-me-up. After my appointments on Thursday, I headed into the city and ended up walking up to David Jones and checking out their Christmas windows, which have a Nutcracker theme. I had the elf with me and photographed him in the Queen Victoria Building and various other locations. However, he really had his real moment of fame when he played the piano alongside pianist Michael Hope at David Jones’s Elizabeth Street store. They’ve had a pianist in there as long as I can remember, and it’s just another reflection of the store’s prestige and tradition. Anyway, I asked Michael if I could take his photo, and he invited me to sit alongside him and we passed my phone onto a total stranger to film me “playing” beside him. Then, I produced elf and Michael played with him. It was the sweetest thing. By the way, Elf is slowly heading towards Afghanistan where my cousin is currently serving in the Australian army but I have ordered some reinforcements. We’ve become rather attached.

Family zoom

Friday, we were back at the school to attend our son’s Year 9 Graduation. This is a celebration, which is quite unique to our school as Year 10 and Year 12 are when students actually leave school, and in this instance, the kids are simply moving from the junior campus to the senior campus which is about a five minute drive down the road. Yet, it does mean leaving their teachers and siblings and friends in the junior years behind. So, it did get a bit emotional. It was also another reminder that our son is rapidly growing up and about to get into the serious end of school. Next year, he’ll need to knuckle down. _DSC7837

Friday night, a huge storm hit. Geoff rang me and said they were expecting hail so I decided to take the car to the local shopping centre and park it undercover. AS it turned out, there was no hail, but the shops had no power and the water was pretty deep. Should’ve stayed home, although I did manage to buy a scrumptious berry cheesecake.

Saturday night, we all headed off to the sailing club for the annual Christmas party. That was when a second storm hit. No hail, but heavy rain and flashes of lightening which I didn’t even try to photograph for some strange reason, but I did photograph the sunset afterwards. The air felt so crisp, clean and refreshing and I was stoked with the photos. It looks like the sky is on fire. However, we arrived home to find another blackout and they couldn’t say when the power was coming back on. Naturally, that was alarming and there have been local black outs (thankfully not at our place) that have gone on for a few days. My parents and aunty visiting from Western Australia were coming over on Sunday and the house was suffering from dreadful neglect. So, I needed this blackout like a hole in the head. It’s not easy trying to clean the house by candle and torch light. The power came back on about 11.00pm and By the time they’d arrive lunchtime Sunday, I’d baked a cake, set up my vintage chine tea set and given up on the rest of the house. That’s what doors are for. We had a great visit with my aunt, and I must tell you that I actually played Danny Boy and O Holy Night on my violin for them, which was a first. I call myself “The Closet Violinist” for good reason. Either I’m playing behind closed doors, or the door’s being shut to block the noise. However, I’ve been practicing a lot more lately and really getting into a rhythm and went for it. I was pleasantly surprised and my mother even said I had good legato. So, it looks like I might not be staying in the closet anymore.

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By the way, before I head off, I wanted to share a stroke of good luck we had tonight. We’ve been needing a new lounge suite for about the last five years. However, we haven’t found anything we liked and finances have also been tight. A few years ago, we found a lounge suite at the op shop which had two manual recliners. We bought this as a stop-gap measure. However, these had become stained and the springs had worn out. I’d thrown covers over them but they really needed to go. Then, our stoke of good luck. Our son and I were out walking the dogs when we spotted a blue leather suite with two single recliners beside the road. We dashed home and fetched my husband and the car and then I was left sitting beside the road minding our stash while they drove back and forwards. The old one is now out the front but will need to wait a week for collection. We’re stoked. We’re planning to replace the flooring in January so this was a great morale boost. My Dad also won a leg of ham at golf today, which he’s sending our way. So, that’s meals for January taken care of.

It’s funny how things work out. I’d been planning to have a garage sale for some time and have had loads of stuff stockpiled ready to go only I haven’t been able to get my head around holding on. I’ve no doubt complicated things way too much in my head. However, it’s been looking like it’s not going to happen and so I dropped a few large bags of clothes at the charity shop. I thought I’d go with more of a spirit of generosity, rather than holding onto things and more than likely applying a false economy. There are probably much better ways of making money than a garage sale. So, from where I’m sitting, it looks like a case of clothes out, lounge and ham in. Not bad!

What have you been up to lately? How are your Christmas preparations going? Hopefully better than mine!

Anyway, I’d better get to bed. I hope you’ve had a great week. This has been another Weekend Coffee Share, hosted by Eclectic Alli.

Best wishes,

Rowena