A transformative diagnosis provides quality of life

06 Jul 2022

After years of working in construction, steam train enthusiast, Richard Hayes and his wife Charmaine, were finally enjoying their retirement. Their days were filled with attending club meetings and assisting with the restoration and preservation of various model steam trains. As well as outings with their two grandchildren and the occasional cruise.

Life was pretty great until one day, four years ago, with no warning, Richard got pins and needles in hands that just wouldn’t go away!

He recalls the pins and needles were unlike anything he’d experienced previously. “I remember holding a glass and looking away for a moment, before I knew it, the glass had smashed on the floor.”

The sensation of the pins and needles then moved into his jaw area. When doing up buttons on his shirt or putting on socks became virtually impossible, Richard decided it was time to see his doctor. After a brief false start, Richard was referred to St Vincent’s Neurologist, Dr Valerie Tay.

Image credit: Richard and Charmaine with their grandchildren, Couper and Samantha.

Richard spent the next week in hospital at St Vincent’s Private in Fitzroy undergoing a wide variety of tests.

Both Charmaine and Richard recall feeling a bit overwhelmed at the beginning of the process. “Our heads were spinning when this all began because there were so many tests.”

Richard recalls spending a lot of time in the ‘donut machine’ (an MRI). He joked, “I was in there so much that week I asked the staff if they could put some icing on it so at least I could eat it!”

Charmaine credits the staff for making the process easier on them. “The St Vincent’s staff were wonderful, always checking in on us and making sure we had everything we needed.”

By the end of the week, thankfully all the tests resulted in a diagnosis. Richard has Chronic inflammatory demyelinating polyneuropathy (CIDP), a rare neurological disorder in which there is inflammation of nerve roots and peripheral nerves and destruction of the fatty protective covering (myelin sheath) of the nerve fibers.

Although the condition is incurable, Dr Tay, who Richard and Charmaine describe as ‘a brilliant doctor’, has been prescribed a blood by-product of four bottles a fortnight to manage his condition. This treatment means Richard’s disorder is being controlled with no symptoms or side-effects. 

Image credit: Richard and Charmaine with Alan Leonor, St Vincent's Private Hospital Werribee, Day Oncology Associate Nurse Unit Manager.

Both Richard and Charmaine feel very lucky that Dr Tay was not only able to find a treatment that gives Richard his life back, but that they are able to access his treatment at Werribee Private Hospital, a mere 10-minute trip from their Altona Meadows home.

Richard has spent the past four years being given fortnightly infusions at Werribee Hospital’s Day Oncology Unit. He says the hospital team have become like a second family to him. And now Charmaine has joined the team as a hospital volunteer, which she is really enjoying.

“You can’t fault them, they’re all beautiful people. What makes the staff particularly unique is that everybody - the doctors and nurses, the reception team and even the cleaners – acknowledges you and takes the time for a quick chat,” Charmaine said.

A charity ball is being held at the Italian Sports Club of Werribee Ball on 30 July to raise funds for St Vincent’s Private Hospital Werribee.

The key focus is to enable the Day Oncology Unit to be relocated to a more private and spacious area of the hospital, to allow for more of a focus on patient wellness and not just treatment.

When asked about support for the upgrade Richard said, “It can get quite cramped in the current area with extra patients having to wait in the waiting room. It will be good to be able to cater for more patients. And the addition of pods sounds good for a bit of privacy if you want it to take a nap.

“Dr Tay and Werribee Hospital have given us our life back. We will be forever grateful. We hope the event is a great success, especially because it’s for such a great cause, supporting our local hospital,” Richard said. 



St Vincent's Foundation
Ground floor
Rear, 55 Victoria Parade
Fitzroy, Victoria 3065