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MSWA Bulletin Magazine Spring 2019

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MSWA MEMBER MS NO OBSTACLE TO ACHIEVING GOALS Jo Penkin was diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS) at the age of 24 when she was living an exciting life in Greece. Life was very full and fun at the time and there was no way she was going to let this condition stop her from getting the most out of life. “I was a qualified BOT yacht skipper when the left side of my body stopped working properly,” Jo said. “I realised I would no longer be able to go to sea, but it wasn’t going to prevent me from achieving other things and having a great life.” “In fact, after the initial shock, I felt relieved to be able to put a name to it; that it wasn’t all in my head.” With characteristic zeal and positivity, Jo joined her husband, a seasoned runner, in the 1991 London Marathon and then went on to complete a total of nine marathons, including five in London, two in Dorset, one in Dublin and one in Oxford. As if having MS wasn’t testing enough, she completed the marathons in various costumes, including a tin of baked beans, Carmen Miranda, Thomas the Tank Engine and a pantomime horse. Jo moved to Perth and still enjoyed a very active lifestyle. It was only in 2013, when she had a relapse, that participating in marathons was no longer possible. Now 56, Jo has found an inspiring way to participate in marathons by walking on her treadmill at home and using YouTube to log her kilometres. Despite weakness in her legs, balance issues, paralysed toes, a sensitivity to light and vision problems, Jo has completed the Paris and New York Marathons at home, the Chevron City to Surf and most recently, the Australian Outback Marathon in July. She walks 42 kilometres in 42 days with organisers collecting her data to ensure she’s completed the required distance. “Being on my treadmill is the happiest time of day for me. I listen to the music and audio books of the city in which I’m walking virtually, and I can look online to see where I’ve been and where I’m going as if I was actually there,” Jo said. “For the Perth and Outback marathons, I went to each location and walked the last kilometre using my Veloped, collecting my medal with all the other participants.” “The exercising is so important and has helped combat the fatigue usually associated with MS.” Jo reached out to MSWA in 2013 and has been working with NDIS Client Relationship Coordinator Christine Richards to get help with her NDIS plan. She accesses a range of services at MSWA’s Beechboro Services Centre and at home. Jo finishes the Australian Outback Marathon in July 2019. “MSWA has been absolutely wonderful.” “I look forward to catching up with others in my sessions; they are a great bunch of girls to have a cup of tea and a chat with.” Jo also receives domestic support from MSWA once a week. “Thursdays are wonderful because I know that help will arrive and assist me with all the chores I struggle with, help take the dogs to the park and do the shopping, all with a friendly smile and a chat.” This adds a huge element to my life.” Jo is now gearing up for the Boston and Rottnest marathons and has plans to start fundraising for MSWA. “I try to take one marathon at a time, but with self-discipline and by keeping positive, I know I can do it.” 20

MSWA MEMBER THAT’S LIFE WITH NARELLE I come back home after my Mind you, residents here have so usual morning of action-packed little need to rearrange, remove excitement, attending physiotherapy or implement anything. Staff sessions or ‘culture vulture-ing’ at members are obliging and caring, some gallery or other which I have and management regards all usually enjoyed just as much as one should, to find that someone has done my housework. The cleaning, residents as earnest and reasonable. Residents are comfortable. Now in the winter of my own life, the tidying, the cooking, the washing I’m comfortable too, observing and all the other tiresome chores that I had to stop doing when MS took hold, has been done. It doesn’t worry me though. I have even decided that I’m glad the staff has done it all and I don’t spend a moment wishing I still the other residents here as they are dealing with the probability of running out of time. Using the example they set, I am able to resist adopting regret and other useless, depressive feelings. had to do it. Leaving my house and moving in I’m now even a member of this Aged Care facility’s Residents’ Committee. The committee makes suggestions here has been a wise tactic. Being house-proud has been such a waste of my time in the past and now to management that could improve is something I never do and this facility and hence, the quality mercifully don’t need to do. of the lives of the residents. I was offered the position of Madam Chairwoman of that committee and although it is an impressive title, let’s face it, the Chair of any committee is constrained, and I feel that I’m more effective throwing grenades from My house is now rented out and the wheelchair-bound tenant says she’s happy living there. Her spouse, children and drop-in carers must help with the housework so I guess she and her family are comfy too. I hardly ever worry about them. the peanut gallery. My sister came across the continent to celebrate the very important occasion of my birthday. I have reached such a grand age that history will not be able to say that I died young. Because of that both of us behave as if we were away from home and invincible. Fatigue management was overlooked and now, three weeks rested, it may be that we will both be well enough to do it again next year. It was great fun. My youngest daughter Bree, with her husband and children, moved back from sub-tropical Queensland, to their original home here in Perth. It’s so nice to have all three of my daughters and their families nearby. I am fortunate. My daughters come to visit me, and ‘take me out’ frequently. I don’t sit wallowing in loneliness. Some residents seem to have been almost forsaken by their families and in lieu of that happening to me, I will maintain my correspondence with movie stars and successful sportsmen, just in case. NARELLE TAYLOR MSWA MEMBER FEEDBACK IS THE BREAKFAST OF CHAMPIONS! Your feedback, whether it be compliments or complaints, is important to us! MSWA is committed to ensuring our Customers receive outstanding quality services and care. On occasions, like most organisations, we don’t quite meet expectations or we exceed them, and we really want to hear when this occurs. We encourage you to share both positive and negative feedback and our promise to you is that we will listen, and your feedback will be taken seriously. The purpose of our feedback and complaint process is to understand what we are doing well and congratulate our staff on a job well done and where we need to make improvements so we can learn and make the changes needed. We assure you that your feedback and complaints are dealt with respectfully and in a timely manner. First port of call is with either the relevant coordinator or manager, giving them the opportunity to investigate the issue and resolve it promptly. If you are not satisfied with the outcome or prefer to contact me directly, I will chat with you about your concerns, explain our process, review the concerns with the team involved, and work with you to achieve a positive outcome. Complaints are handled quickly, objectively and respectfully, and of course won’t be held against you for expressing your concerns or views. How can you provide a compliment, complaint or suggestion? / Contact your MSWA Program OR Coordinator or Manager / Telephone Liz Stewart on 6454 3173 or 0458 060 566 / Email feedback@mswa.org.au / Write to Quality and Compliance Locked Bag 2 BENTLEY DC 6983 LIZ STEWART MANAGER QUALITY AND COMPLIANCE 21