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We are eager to learn more about why you are passionate about helping people live well with multiple sclerosis. Each story, no matter how long or short, would be a wonderful addition to Multiple Sclerosis Limited's stories collection.
I have been volunteering with the MS Community Visitor Scheme at Princess Court Homes, Mildura since the 25th August 2016. I have had the pleasure of regularly visiting an older couple for the last four years. My role is to visit them for friendship and companionship. Unfortunately, the husband has passed away, but I still continue to visit and see his wife/widow.
I found myself in a deep depression wanting to end my life. I had enough of being sick and enough of the multiple sclerosis. I called MS CONNECT and three words saved my life ARE YOU OK?.
After my darkest day, I made it a personal promise to give back to Multiple Sclerosis Limited whatever I could to help stop newly diagnosed people with MS not go to where I did. I entered the 2017 MS Sydney to Gong ride. I’m still a little nervous about my future with multiple sclerosis but I know no matter what happens MSL have my and my family’s back.
My husband was diagnosed with Muscular Dystrophy (MD) before our marriage in 1972. At that stage there was no MD Association in Victoria. His cousin who is a General Practitioner advised some Physiotherapy. Since there was no help from MD then — the only one was in WA — we then sought help from Multiple Sclerosis Limited (MS); then known as MS Society. We were at your centre a couple of times and one of your staff came to our house and looked it over to see what support we would need later, as his condition deteriorated.
Thanks to your organisation, I have two rails at the front of the house and two at the back. I have a bar in the shower and one in the bath which certainly helped (when I could use the bath). Now I don’t know what I would do without the bar in the shower and a pole just outside the shower to grasp as I get out.
My husband died in 1984 and he was 48. Thanks to Multiple Sclerosis Limited I have these bars that help improve my quality of life in my older age. I have contributed and supported Multiple Sclerosis Limited financially for many years because they had no reason to help but they did just because they are helpful people.
I have found the most important part of my journey with MS is having the full support of my wife, Its important your partner can be with you every step of the way as they are the ones you spend your most time with. Bearing that in mind as my wife has to take on more functions than before, I have to be considerate not to over burden her and wear her out. The NDIS has played an important role in assisting both of us in these areas such as domestic help, lawn mowing, Frozen meals and a driver to get me to the Neuro Moves gym twice a week, Attending the gym is vital in helping me to reach my goals of having a better life with MS by slowing down and stabilising the progression of my MS. I first became involved with MS Limited immediately after my confirmed diagnosis because I wanted to know what was out there that could help me with my future with MS. My hopes for people living with MS in the future are that 1) a cure is found soon. 2) all neurologists are kept up to date with information as to whats next after diagnosis so they arent in my case with PPMS given the diagnosis and told not much we can do for you and come back and see me in 6 months and 3) that everyone diagnosed with MS have partners, carers and peers around them to be able to support them throughout there journey with MS
Robert lives in Tasmania. He is a person living with MS and is passionate about searching beyond his physical limitations for meaning and satisfaction. His interests are wide and varied and this year, he will take part in the MS Virtual Challenge on his recumbent bike. Here, he shares the story of his journey with MS and some words of inspiration for anyone who is looking at ways to reach beyond physical limitations.
I had a background in architecture and art prior to the onset of MS at the age of 28 and had commenced a career in teaching while constantly practising and applying my skills in drawing and painting.
Although the devastating effects of MS flawed everything for me and left me legless in body and collapsed in mind and spirit, something inside of me said, “fight every inch of the way.”
I had extraordinary support and needed encouragement from many sources. My list of references would be one hundred years long, ten thousand people wide and as deep as an ocean filled to capacity with friendship and love.
The one thing I adamantly have to recommend to my fellow persons with MS – develop a passion. Not just an interest, but something which truly is far above the ordinary, and beyond the restricted life imposed upon your present being. Fight every inch of the way.
I try to find a level higher than the everyday, constantly probing life in every way, trying always to find more, thinking and searching beyond the pain of a disabled body.
I have an interest in collecting. This interest is wide-ranging and without doubt, excessive. From classical music and a library full of art books, to unusual objects from the past – their reach beyond the mediocre renders them priceless to me, even though they have no monetary value.
I have many aspects to my life with MS – recumbent cycling is my other passion. I discovered recumbent tricycles about 30 years ago and I ride on a daily basis. From a slow start, about 3 kilometres distance at first, I am now able to cycle up to 40 kilometres a day. You have to be able to get down into the low seat and stand up from this position, which is actually very difficult for me and requires arm strength.
The back of my bike has a carrier attached and an ordinary handlebar bracketed onto this carrier. Strong rear lights are kept on all the time when I am on the road. My trike is actually the same height as the white posts and when I receive a disparaging comment, I point this out. For someone such as me with weak legs, the easy spinning solves the problem of steep hills. I carry two bottles attached to the bike – one for essential water and the other for body fluids to be emptied at the side of the road.
Whilst it’s very important that anyone whose thinking of trying recumbent cycling obtain the essential information first, I do think that this adventure may be a possibility for others with MS. My walking has not improved in any way. However, I am filled with a wonderful sense of normality as I slowly speed along the road.
I have recently registered for the Virtual Gong Ride; my team name is Chariots of Fire. I have set a project distance of 750 kilometres for the month and nothing will stop me from doing my very best to honour the commitment. It’s going to be great fun!!!
For 39 years, tens of thousands of cyclists have hit the road in the MS Gong Ride from Sydney to Wollongong to raise funds for people living with multiple sclerosis. Even though this much-loved event had to be postponed until next year due to COVID-19, we innovated and found another way. This year, the Gong Ride is going virtual, which means that not only can you still ride for MS, but you can take part wherever you are.
If you would like to find out how you too can get involved in the Virtual Gong Ride and help MSL raise much-needed funds for people living with MS, check our event page here
MS joined our family when my sister Cathy was diagnosed with the condition in her early 30’s. It saddened and frustrated my father to watch the impact of the disease on her. This was especially true in the last few years of his life as her condition has become more active.
Cathy has lived the 25 plus years post diagnosis with the mindset of “MS does not define me”. She has raised two gorgeous young people, worked as a midwife and now in antenatal care. She has consistently sought out fun and adventure despite the limitations that the condition brings with it.
Fiercely independent, my sister was reluctant to accept too many financial offers over the years from Dad. She preferred him joining her adventures and spending time together to material contribution.
It is fitting that he has been able to contribute, if not directly to my sister, to an association that helps people like her, live the best possible life they can, with a disease that affects far too many people.
MS MY WAY – by Michael Stanley Watts
I was a civil engineer with the RMS (RTA) in Tamworth, NSW.
One morning in April 2011, I woke up, swung my legs out of bed, when I attempted to stand, I thought I drunk, although I hadn’t touched a drop the previous night!
After consulting Dr. Google, I summated that I was suffering from an ear infection. Knowing how to cure all ailments, I proceeded to the service station, bought ear drops and job done, problem solved! However…………………………………………………… nothing changed. Perhaps I’m not that brilliant at self-diagnosis after all.
I tolerated the deficiency in stability and lethargy for 8 months until I sought QUALIFIED medical assistance! After consulting my GP, I was referred to a neurologist in Newcastle, who I saw in January 2012. After monthly reviews and tests, I was diagnosed with MS in March of that year. Three months later, the form of MS was determined to be Primary Progressive.
In September, I was told I was no longer fit to work and my career and driving of vehicles ceased immediately. Consequently, I sold my house in Tamworth and moved in with my parents in Lemon Tree Passage, and continued treatment.
The next month, I commenced Tysabri infusions which I still have today every 28 days.
In June of 2014, my life sort of turned on its ear! My best mate Pat turned up at Mum and Dad’s place after tracking me down. I hadn’t seen him for 21 years! At the time, I was walking with a cane when but came up with a proposal. He asked me, “Do you want to go to Queensland?”
“Oh yeah, when do you want to go?” I replied.
So the next morning, we headed off to the Gold Coast, where 2 other mates were, one who lived there and another from Melbourne. This trip, which was the catalyst for many others, including Las Vegas for my 50th birthday, changed my life.
I bought and moved into my townhouse on Newcastle Harbour in November 2017. This place has enabled me to remain independent, within better proximity to John Hunter Hospital for my infusions, access the community and meet many people and develop solid friendships.
The progression of my MS now requires me to leave the apartment in wheelchair as I am only capable of standing for 5 minutes and negotiating myself around my apartment. However, I don’t view this negatively, only as a positive because it enables me to remain actively involved in the things I enjoy, see friend and family and maintain my independence within my limitation. My chair has also enable me to develop another recreational hobby; cruisin’ in these limos commonly referred to as maxi-taxis!
I’m philosophical about my MS. It doesn’t control me, I control it. I can’t do anything about it, so I meet the challenge head on and my though processes are such that I have a disABILITY!
Every year more than 600 people are diagnosed with Multiple Sclerosis. It is a diagnosis that often hits people extremely hard. It can also be at times, devastating. No doubt, this disease presents a challenge that can feel for some, at times, unsurmountable.
It was fourteen years ago when Susan had to face this stark reality. She was working at Woolworths and was looking forward to starting a family with the love of her life, Tim. However, the reality of her health situation somewhat changed this course.
Susan has always been known to be full of life, infectious laughter and joy for life. It did not take her long to evaluate how she could best face this new challenge, with the help of her family, friends and MS (Multiple Sclerosis Limited).
As the disease progressed, she had to abandon her job at Woolworths. However, she was determined to continue to be ‘independent and useful’. As well as her dream of a family. This came through in 2009 when Rowan, her son, was born.
Susan was on a courageous and determined path. She dedicated herself to learn more about MS and how she could help others in a similar situation to herself. “I find that in life if you help others you get much more returned to you.” Thus, Susan became a proud MS Peer Support Volunteer.
Having recently completed an 8-week course: Women with a Disability, she is looking forward to doing a “Certificate III in Community Care”.
Nowadays Susan must rely 80% of her time on the use of a wheelchair, as her physical ability is limited. ‘However, I can use my voice to help others and with the training I am doing, I should be able to further this help.”
Susan tells us that she has benefitted from many of the services that MS provides. She has accessed expert advice and support for herself and her family. Additionally, the opportunity that MS offers to help others is something that empowers her and keeps her strong.
“I don’t feel alone… I know MS and my family are behind me all the way.”
Susan is indefatigable: she has instigated local events and has participated in many others. Events such as the famous Melbourne Walk Fun Run to the Melbourne Cycle, the Mega Swim and Gift Wrapping.
“I used to be an ‘MS Angel” too for the MS Readathon, so I was delighted when I was able to support its re-launch last year.”
“I have an extremely supportive group of family (especially my husband Tim and my son Rowan) and many dear friends that come from afar to participate in fundraising activities with me. They are my rock.
My family and I have attended a couple of MS family camps. This is the kind of support that makes a great difference to our lives.
Some time ago I decided to leave a legacy of love in my Will to Multiple Sclerosis Limited.
I wanted to be part of the future of MS and contribute so they will have the resources to continue to help and support people with MS. I believe it is very important that ‘no one has to face MS alone, now or in the future’.
I am thrilled that I am giving my money to a worthy cause and leaving a legacy that will help others with MS. This was a very easy decision as it is one more way that I can be useful and give back to my community.
I would encourage others to do so. I personally believe in doing what you can to help others. It is my life quest to provide support where I can especially in relation to MS which is a life changing illness.”
‘John, my first husband was diagnosed with multiple sclerosis in the 1960’s… I did not receive any financial help or other assistance, though I wish I had. That was government policy at the time.’ Those were very, very tough times for John and Marjorie.
‘In the 60’s the role of the then Multiple Sclerosis Society of NSW was not so well known, and we had little contact. However, family and friends were of tremendous help. Eventually I was able to take six months long service leave to be with him. I am so grateful that at was with him at the time of his death in 1972.’
Living through that difficult time gave Marjorie a first-hand understanding of the challenges people living with multiple sclerosis face. ‘I learnt how informed, caring and expert support can make a huge difference to the whole family.’
Marjorie has seen the impact that multiple sclerosis has on everyone. As a social worker, she also saw it with her clients. This personal experience aided her decision to support Multiple Sclerosis Limited (MS). She decided to help now and for well into the future.
She has joined the ‘MS Callistemon League’. She is leaving a legacy of her love via a gift in her Will to Multiple Sclerosis Limited.
“I have lived through it.. so MS is a cause close to my heart.”
Marjorie comments on how critical support from MS also extends into regional areas. As it is the case with Marjorie’s niece, who lives in Armidale. She has multiple sclerosis and is benefitting from the services that MS offers.
Marjorie’s decision to leave a legacy gift is a very strong statement of her values. She supports the rights of those facing health and other challenges. Marjorie stands for human rights for all. She doesn’t want anyone to face MS alone.
Marjorie’s legacy will serve as an example for her stepchildren and step-grandchildren. Encouraging them to also live by these caring and supportive values.
She tells us: ‘I have lived through it… so MS is a cause close to my heart”.
Marjorie encourages others to join her in her quest to ensure ‘no one needs to face MS alone.’