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MSWA Bulletin Magazine Autumn 2019

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NDIS update | 2019 camps | Health education and peer support groups | Fundraising news

2019

2019 CAMPS SUMIT SANDHU, MSWA COORDINATOR OF CAMPS AND RECREATION WHERE DOES COURAGE COME FROM..? MIKE CLARK, CARER Venues are booked and the dates are fixed! I am so excited and looking forward to seeing our regular Members and hoping to get a few newcomers at our retreats this year. Here are the dates and venues for our carers’ retreats and Member getaways: 1. Carers’ retreat at Rottnest Island Monday, 29 April to Thursday, 2 May 2019 This year our first carers’ retreat is at my favourite place. Superior ocean view bungalows, dining out at the best restaurants, fun indoor and outdoor activities – a few things to look forward to. Feel free to contact me if you are a family carer and want to enjoy this fantastic retreat. I encourage our Members to convince their loved ones to attend these retreats as a little treat on your behalf, I assure you they will be well looked after. 2. Members’ getaway Guilderton Monday, 27 May to Thursday, 30 May 2019 The first Members’ getaway for the year is organised at Tuppin house in Guilderton. Guilderton is a nature-based tourist town, which lies approximately 100km north of Perth. With the stunning views of Moore river from the accommodation, it makes a perfect venue for our Members with only one hour 15 minutes’ drive from Perth. If you have not attended Moore River camp before, give it a go this year. You will be amazed to see how much fun we have on these getaways. 3. Carers’ retreat at Kilmolee at Safety Bay Group 1 – Monday, 19 August to Thursday, 22 August 2019 Group 2 – Monday, 26 August to Thursday, 29 August 2019 This retreat is for our family carers who simply want to relax in a very peaceful setup. Kilmolee offers spectacular ocean views, splendid sunrises, glorious sunsets, beach walks and amazing wildlife that will ensure your stay is a unique and memorable one. In total, nine ensuite are rooms are booked for each group and all meals are catered by a professional cook. Activities are organised after consultation with the participants so that we can structure the retreat according to the interests and comfort of our family carers. 4. Members’ getaway at Woodman Point Monday, 2 September to Thursday, 5 September 2019 This year we are back to Woodman Point for our second Members’ getaway. I am hoping that you can join us this year if you missed out on Rottnest camp last year due to limited accessibility. If you are interested in art and craft, archery, beach activities, quiz nights, and lots of fun activities and competitions, this is the getaway you don’t want to miss. As it is so close to Perth you are welcome to join us for the day activities if you like the comfort of your bed to sleep at night. 5. Family camp at Woodman Point Monday, 7 October to Thursday, 10 October 2019 For Members with primary school aged children, this is the camp where you can enjoy some quality time with your family. The Department of Sports and Recreation organise activities such as archery, flying fox, rock climbing, high ropes, beach activities for children. Parents are welcome to attend and we also run structured indoor activities. All families get their own room with bunk beds and most of the rooms have enough lower bunks for adults and younger children. Feel free to contact me for further information. 6. Southwest Members’ Getaway Denmark Monday, 28 October to Thursday, 31 October 2019 For our Members in the southwest we have a special getaway for you. The Cove in Denmark offers open plan building with a 25-seater table and a large open fire. Accessible bathrooms and toilets and flexibility in sleeping arrangements in the charm of the A-Frame. Meals catered by award winning Mrs Jones café, outings, dining out, indoor activities are few of the amazing things to look forward to if you are thinking about attending. We would like to acknowledge the support of Lotterywest; their funding allows MSWA to provide these camps to our Members and their carers at minimal cost. For further information and to register your interest please contact: Sumit Sandhu on 9365 4843 or email sumit.sandhu@mswa.org.au I’m writing this from a carer’s perspective. Although I don’t have MS myself I’ve learned to live with it all the same. I manage that better some days than others, but for the most part I do okay. I have other interests, and even though I’m 63 years old I stay active. Our story is not unique, but then again, MS affects everyone in a unique way, so I guess I might be wrong about that. Still, ever since my wife Kathy found herself on the wrong end of its affection we’ve had a ‘third party’ living with us; an unwanted guest that comes and goes whenever it pleases. It all began with a general feeling Kathy had that something wasn’t quite right. For several years’ doctors said the ‘trapped nerve’ in her fingers, the two separate episodes of Bell’s Palsy, and my personal favourite, ‘burning the candle at both ends’, didn’t seem impossible. Except the ‘burning candle’ explanation ... we didn’t own any candles! Needless to say, the initial indifference we encountered did little to help Kathy, herself a nurse, deal with the early signs of MS. She did have a couple of CT scans, but they proved inconclusive. Time passed and Kathy learned to live with the increasing number of symptoms she was experiencing, but as they had no collective name at this point MS wasn’t a concern for us. Not until the day I found her slumped over, head down, her left arm lying awkwardly on her lap, a profound weakness down her left side, slurred speech, and an inability to select the appropriate word. Kathy was presenting for all the world like she’d had a stroke. That’s when we took ourselves off to the local hospital. The neurologist in Emergency wasn’t convinced it was a stroke but arranged for an MRI just to be certain. The result of that scan came as a shock; 32 separate lesions in Kathy’s brain. Shortly afterwards a consultant introduced us to our unwanted guest by name ... multiple sclerosis. The diagnosis, although upsetting, fearful even, brought us both some level of relief; now at least we had a name for what was happening, we knew who our unwanted guest was and could tackle our intruder head on. Kathy’s been living with MS for over 20 years now, and it’s been a difficult path to walk at times. I often ask myself if I could maintain her happy disposition if I’d had a continuous (7 out of 10) headache for the past two decades. If I had to come to terms with stopping the work I loved because of short-term memory loss, fatigue, and increased cognitive dysfunction. I wonder how I’d cope with looking okay on the outside while crumbling away on the inside, and having to listen to people tell me over and over again how well I looked. I doubt I’d handle the constant numbness in my fingers and feet very well either, or the double incontinence, the years of injections and infusions, the shingles, or feeling like my energy was draining away every afternoon, whether I was having a good day or not. Kathy’s okay with me writing about this, if she wasn’t I wouldn’t do it. But her courage of late has been truly amazing. At the beginning of October 2018, Kathy had a call back following her annual mammogram and this led to a number of biopsies. The following day she received the news no woman wants to hear ... “we’ve found cancer”. Kathy had the all clear just twelve months earlier so this came completely out of the blue; three tumours in her left breast, each one aggressive and invasive, the only option surgery. That news pushed our worries of living with MS completely off the table. The following week we met with the surgeon. The mastectomy took place three days later. Unfortunately, cancer cells were also found in one of the lymph nodes removed during the surgery, and that meant most of the nodes had to go too. Kathy has made a remarkable recovery from her surgery. She’s still coming to terms with the changes to her body, but she’s focused on her new challenge; six months of chemotherapy with radiation treatment to follow. She’s going to lose her beautiful long hair, but she’s discovered she can donate it to a charity making wigs for burns victims and people with cancer; a thin silver lining to an otherwise miserably dark cloud. Kathy is strong in a quiet way, she’s accepting in an intelligent way, and she is determined to get past this latest intrusion into her otherwise happy life. By mid-August, we should be able to say, “Kathy had cancer” and not, “Kathy has cancer”, that’s the plan. Life often knocks you down, but it’s what happens next that matters ... stay down or get back up? Kathy has always chosen to stand. I don’t have MS, but I care for a woman who does. Actually no, I don’t just care for her, I love her, completely, unreservedly. Her daily display of courage is something I can only aspire to. MSWA have been incredibly supportive, not just with Kathy, but with me too. I’ve taken the opportunity to talk with a counsellor on a number of occasions and understand that MSWA is there for me too. With ongoing support life looks good for Kathy and me regardless of what may come in the future. In truth, I’d have to say it’s not always easy being a carer, but it is always an honour. I’m not sure where Kathy’s courage comes from, but it’s been a rare privilege to bear witness to it every day. 18 | MSWA BULLETIN AUTUMN 2019 MSWA BULLETIN AUTUMN 2019 | 19