2022 Winter Newsletter

In his early 30s, Rod Miller had just about given up on the dating scene when his flatmate organised a dinner party for six. It was there he met a jolly, lively brunette called Lynette Leber, and he was smitten. To his delight, so was she.

When they got married in 1993, the future looked bright. The couple looked forward to setting up a home together in Queensland after months of commuting between Brisbane, where Rod worked in IT, and Melbourne, Lynette’s hometown.

But three years into the marriage, Rod was worried about his wife. Lynette, a highly qualified accountant, kept getting fired from jobs. She said Queensland was the problem and insisted they move to Sydney for a fresh start. Rod, wanting her to be happy, agreed.

Met with a wall of silence

But things didn’t get better for Lynette in Sydney.

“She would go in, do a great interview, get the job. She’d do a day’s work; then, on day two, they’d let her go. No one would say why — there was a wall of silence. Because she was so likeable and good on paper, she’d get another role. But it would happen again. It was devastating for us,” Rod recalled.

“She would cut out job ads and have them lying all over the floor. She kept trying.”

Rod noticed Lynette was “going haywire” at home too. She’d forget the groceries, lose house keys, had trouble with stairs.

He often had to dash back from his IT job in Parramatta to the flat in North Sydney to sort out the latest crisis.

Another time he noticed she gripped a handrail as she tried to walk down two steps at a hotel. He remembered thinking this was odd. Friends reported she fell over while bushwalking, which they found strange as she was a confident hiker.

But another set of friends told Lynette it was other people being awful, and there was nothing wrong with her. Reassured, she didn’t see a doctor.

Once lively and fun-loving, Lynette sank into a depression. Rod wondered if she had a mental health issue brewing. She ended up seeing four psychiatrists in quick succession. One suggested the couple split up as they were “clearly not compatible.”

“That was not right at all, and it hurt us,” said Rod.

The couple did split up briefly, and Lynette moved back to Melbourne. But they soon reconciled, with Rod regularly commuting to Victoria so they could work on the marriage.

Fired from 17 jobs

In Melbourne, the job woes continued. A friend who’d arranged a bookkeeping job for Lynette told Rod she’d been fired for incompetence. The friend said he couldn’t believe it. It wasn’t the Lynette he knew.

All up, Lynette got fired from 17 jobs. Unemployed and unemployable, she had a nervous breakdown.

While hospitalised, she saw a neurologist who suspected Lynette might have multiple sclerosis. An MRI found lesions and damage to parts of her brain. It was an immune system attack, consistent with MS.

After three stressful years, they knew why Lynette was having cognitive issues. But other challenges awaited.

“We had no idea Lynette had MS. Her presentation was unusual. Often, it attacks the legs first. But she had cognitive impairment,” said Rod.

“I didn’t know much about MS,” he admitted.

“We missed clues like when she was having trouble with the steps at the hotel or when she fell over bushwalking. We realise now these were balance issues, a common MS symptom.”

He is still angry at the friends who said there was nothing wrong with Lynette.

“We wasted precious time. The earlier you start treatment, the better your chance of slowing the disease’s progression,” he said.

Getting help

Besides getting Lynette the medical help she needed, the neurologist put the couple in touch with MS Plus (formerly MS Ltd).

“We went to their presentations and events. The staff were so compassionate,” he said.

The couple benefitted from many of the services MS Plus provides. They received emotional support and expert advice on living with the condition. Later, Lynette would live in one of their residences.

Fortunately, Lynette had income protection insurance. Once she was diagnosed with MS, her insurance firm paid up, and she didn’t have to try to work. Rod had a good job as a trainer with IBM, so there were no financial worries.

Lynette and Rod decided to live for the moment. They went to South Africa, travelling the famous Garden Route and going on safari. They often visited friends and family in Queensland and Western Australia.

They saw plays and movies, enjoyed dinners out, went on picnics with friends. Rod kept a list going back 20 years of all the fun things they did together as a reminder to both of them of the good things in life.

Bought a house on the same street as the MS residence

But two years after her diagnosis, Lynette developed epilepsy, which sometimes happens with MS. The seizures resulted in Todd’s paresis, a syndrome associated with weakness or paralysis in part or all of the body. Lynette had to stay in a rehab hospital for a week each time to recover.

Soon, she couldn’t live at home anymore. At 40, she moved into MS Plus’ long-term care residence in Williamstown, a seaside suburb of Melbourne. Now 62, she’s been there for 22 years.

To keep close to Lynette, Rod bought a house on the same street. He now runs a software consulting firm from home and visits Lynette every day.

Once a week, Lynette comes over for dinner, and they watch TV together.

For many years, Lynette learned piano and took part in other programs offered by MS. She used to help in Rod’s garden, looking after the profusion of white roses that bloomed there every year. She also worked in the MS residence garden.

But sadly, she can’t garden anymore. She has developed dementia, type one diabetes, and neuralgia in recent years, making her health care needs more complicated. Her balance has deteriorated, and she uses a walker to get around.

“Lynette’s resistant to the wheelchair because she knows it’s better to keep walking. She also works hard to feed herself because she wants to maintain some independence,” said Rod.

The couple never had children. So, when Rod, now 72, started thinking about his Will, he decided 50 per cent of his estate would go to their respective nieces and nephews. MS Ltd. (now MS Plus) would get the other half as a symbol of the couple’s gratitude.

He is happy for his gift to go to research or enhanced support services, wherever it can be helpful.

“I would like to contribute to the future of the organisation. MS’s work is vital to help people like Lynette have a better quality of life. They help partners and families too,” he said.

He remains optimistic about the future.

“One day, there will be a cure, I’m sure of it. In the meantime, I’m happy to leave MS Plus a legacy so they can continue their work and help others,” he said.

Rod said he’d like other people to have an easier time than they did — especially to know more about MS and what signs to look for.

While life hasn’t dealt Lynette a great hand, Rod said she’ll always have his love and support and that of friends and family.

“Some people in the home don’t have family and friends coming to visit, which is sad. Fortunately for Lynette, friends and family visit often, so she’s not lonely.”

“For me, she’s my reason for living, and we’re closer than ever,” he said.

Your Will says a lot about you and how you can leave your mark on the world. Could you be like Rod and help people with multiple sclerosis to lead better lives? Any gift, big or small, can help.

Contact MS Plus for more information. You will discover how easy it is to leave a gift in your Will and what a difference it can make to your life and those living with multiple sclerosis.

You might also consider joining the MS Callistemon League, a group of remarkable people who want to ensure that people living with MS are not alone.

Want to know more? MS offers a Gift Planning Program. Talk to Laura or Rebecca on 1800 443 867, email Futureplanning@ms.org.au, or visit mymslegacy.org.au.

We are here, so no one needs to face MS alone, now or in the future.

“MS is something so incredibly close to my heart. I’ve been involved with raising money for MS for close to 20 years. It was something I decided to do when my Mum was diagnosed. At that time, there was so little known about the disease.

Back then, there were no treatments available for MS. Not one. People like my Mum Jude were simply told they’d have to let the disease run its course.

For me, that simply wasn’t good enough. I became a passionate volunteer and began fundraising for MS research.

I wanted to do as much as I could. I have volunteered in both Tassie and Qld over the years. I volunteered at the MS Nursing Home in Brisbane for four years and sadly lost a very close client to MS during that period, Rowe, a beautiful Mum with two young boys. I also participated in several events to raise funds for MS including the MS Moon Walk, MS Mud Runs and the Point to Pinnacle – to name just a few! I also do individual fundraising events every year for World MS Month in May and have my own MS Page on Facebook.

I’ve also previously had the pleasure of running the MS Peer Support Group in Hobart South and met some truly amazing people.

I have seen great progress in care and treatment for people with MS and I want that to continue – for the sake of people like my beautiful mum.”

Join Bek in Making a Difference

Over the last 20 years, donations from people like Bek have funded breakthrough research and helped improve the quality of life for Australians with MS. It’s working! A person diagnosed with MS today has access to more and better treatments than Bek’s mum did. There is also more support for carers and families.

But the job is far from done, and Bek is determined to keep pushing. She continues to raise money for MS in honour of her mum. She wants to see a future where MS no longer has power over people’s lives. Where nobody has anything to fear from an MS diagnosis.

“MS is my passion. As long as I am around, I will continue to raise awareness and funds towards a cure!” says Bek.

Bek has dedicated her life to helping people with MS, and there’s a way she can continue making a powerful difference even after she’s gone – by including MS in her Will.

Gifts left in Wills will be crucial to the speed of MS research discovery, and improvements to quality of life for people who have MS.

Every gift helps bring us closer to a day where no one loses their quality of life because of MS.

Every gift helps spare loving family members like Bek from the loss of someone they love and need.

If you’d like information about including MS in your Will in honour of someone you love or want to make a difference in the lives of people living with MS, contact us.

It’s a meaningful way to remember them, and a life-changing gift to future generations.

Want to know more? MS offers a Gift Planning Program. Talk to Laura or Rebecca on 1800 443 867, email Futureplanning@ms.org.au, or visit mymslegacy.org.au.

Because of the generous legacies left by our Benefactors, those living with MS can receive vital support and assistance through our facility-based MS respite care. MS respite care is made possible in part thanks to past forward-thinking Benefactors.

Our MS Respite service is available for people living with multiple sclerosis and other neurological conditions. We offer warm and friendly respite care with our carers providing 24/7 support. They have a great understanding of multiple sclerosis – so people with MS don’t have to explain themselves.

Our respite care takes place in a purpose-designed centre where the person living with MS can visit for a set number of weeks, or for shorter periods. We now have a total of seven respite beds available at our MS Respite Short Term Accommodation service in Watsonia, freshly refurbished and ready for bookings.

Many people say the best part of coming to stay in MS Short Term Accommodation is the opportunity to socialise and connect with other people living with neurological conditions.

As Laura, a member of The Callistemon League says, “I am very proud now that I can do my part to make this a better world for those living with MS…I encourage you to think about leaving MS Plus a gift in your Will. It’s not a difficult thing to do and it will give you a deep sense of satisfaction.”

If you wish to join Laura in ensuring life-changing programs like our MS respite care continue into the future, consider establishing your own legacy with MS Plus with a gift in your Will. It’s a flexible, easy way to make a significant impact on people with MS and their families.

MS Plus Chief Executive Officer, John Blewonski, said he is pleased of the progress as, “This announcement will mean that we can move forward with confidence in terms of planning for the future of the John Studdy Centre which has served as an integral part of the MS Community in NSW for over 30 years, however, its facilities are no longer fit for purpose.”

“This heralds an exciting new phase for MS Plus and its commitment to providing services to people affected by multiple sclerosis,” Mr. Blewonski said and futher, “We look forward to involving the MS Community in the development and design of the new facilities to support the implementation of our new Operating Model”.

The redevelopment of the Lidcombe MS Studdy Centre is reaching the final stages of the design process with building works expected to begin in the middle of the year and a completion date at the end of 2023 or early 2024. The redevelopment will be located on an adjacent parcel of land to the current site which was generously provided by the New South Wales Government who are also contributing to some of the construction costs.

The replacement of the current building, which will be almost 40 years old by the end of construction, will provide a fit for purpose Wellbeing Centre for people affected by Multiple Sclerosis and other neurological conditions. The design has been developed in consultation with a variety of stakeholders including users of the current site, MS staff and health professionals. While the current building has provided an exceptional service to the MS community for a long period of time it is no longer fit for purpose and the new Wellbeing Centre has been designed to cater for the changes in services in a setting that is not clinical but rather one that is all inclusive that brings a community feel and supports social engagement opportunities.

The Wellbeing Centre itself will see an expansion in the size of the gym with assessment rooms for allied health services such as physiotherapy, occupational therapy, and nursing. There will be a multifunction space to host education workshops, staff training, community events or classes like the popular yoga and ‘dance for health’ programs. A café and adjoining courtyard will offer an ability for people living with multiple sclerosis and other neurological conditions to engage in social activities with their peers.

Finally, the addition of an adjacent building of 20 two-bedroom apartments to cater for permanent and respite accommodation will fill a gap in suitable living options available to people with multiple sclerosis and allow persons from outside of metropolitan Sydney to visit for short stays and take part in the services available, in particular expert allied health assessments and reviews and provide a level of respite for carers and other family members.