Support to keep working: Santo’s story

The help Santo has received from MS Plus’ Employment Support Service has helped to keep him in work, three decades after he was diagnosed with MS.

“MS is unpredictable and as the years have gone by, my physical functional impacts have deteriorated and the hidden symptoms of cognitive functioning and fatigue have had a huge impact,” he says.

“I’ve been involved with MS Plus’ Employment Support Service for around 15 years and the help I’ve received has been exceptional. Not a week goes by when my occupational therapist Stephanie misses reaching out to me by a phone call, email, or text message.”

Employment Support Service supports clients with MS and other neurological conditions to navigate every stage of their working life, with available help ranging from the design and implementation of strategies to better manage symptoms through to access to equipment and external supports.

For Santo, that support has been constant through the good times, and the challenging times.

“Stephanie has supported me in my workplace with workplace visits and meeting with my managers and team leaders. She’s provided me with funding for ergonomic equipment like a specialised computer mouse, and special seating because my right-hand side is physically weaker than my left,” he says.

“I’m a bit of a perfectionist at work, but I’ve had periods where I struggle, forgetting things and that has led to inconsistent productivity and quality outcomes. Stephanie has given me all sorts of advice and strategies and organised meetings with managers where we can work out a program to get me back on my feet. 

“That can look like designing checklists or refining procedures, as well as support to manage cognitive functionality, emotional functionality and fatigue… which all adds up to help maintain my ability to keep my job.”

Santo says the service has also helped him access a range of wellbeing supports.

“My right hand is weaker than it used to be, and I used to be a musician, so experiencing this weakness had a significant impact on my emotional wellbeing. I’ve been provided referrals to and funding for psychological and mental health supports as well as a physiotherapist that specialises in dealing with people with MS.

“All of these things have had a role in helping me maintain my independence.”

Santo splits his work week between working from home and a day or two in the office. Help to learn how to manage his physical symptoms, and communicating his needs with his employer, have been two of the biggest benefits he’s received from Employment Support Service.

“I experience severe restless leg syndrome and sometimes get neuropathic pain during the day, and if I have a disturbed sleep it is more challenging for me to be up in the morning.

“Stephanie’s helped with suggestions and strategies, which might be justification for why I need a 20-minute break instead of a five-minute break in the morning, or an extended lunch break. She’s gone above and beyond to get on top of things before it’s too late.

“Over the years, as my circumstances and functionality changes, my neurologist, health team and support team like Steph have a major ability on my ability to keep going. I want to continue working for as long as I can, like a lot of people I’ve got a mortgage and bills to pay, so having this support to keep on top of things is just exceptional.”