Two years ago, in-demand musical director Kellie Dickerson realised something was wrong. Her blood pressure had been low for a while, but this was different, and it was beginning to get worse.
“First of all I noticed my balance was poor so I would stumble, and the second thing was my speech was a little slurred as if I was drunk, but of course I wasn’t. I wouldn’t drink at work,” she says.
Kellie Dickerson. Photographs supplied
“I went to a doctor and I demanded an MRI scan because I thought it was better to know than not to know, and the first one came back normal and so they said ‘you are crazy’, and I said ‘no, there is something not quite right’. Basically the last two years have been a whirlwind of doctors, with me insisting that something was not right and them saying everything was fine. And gradually the second MRI showed something not right, but it wasn’t a brain tumour, it wasn’t cancer – which is something to be grateful for – and not MS. It was this rare condition called MSA.”
MSA stands for multiple system atrophy, a progressive neurodegenerative disorder caused by a gradual loss and shrinkage of brain cells. Symptoms include dizziness, balance impairment, difficulty with movement, bladder dysfunction, palsy of the vocal cords affecting speech, and problems with blood pressure. Medication can help manage the symptoms but currently there is no cure.
It’s not the kind of diagnosis anyone wants, but Dickerson was relieved to finally have an answer. “It’s better to know. When you know [what it is] you can face something, rather not knowing,” she says, speaking to Limelight on Skype from her parents’ home in Dubbo, New South Wales.
Dickerson is a highly respected, much-loved music director. After receiving a Bachelor of Music (Honours) in Piano Performance from Sydney University, she participated in the Symphony Australia Young Conductor’s Program. She began her career as a pianist/keyboardist on productions such as The Phantom of the Opera and Miss Saigon for Cameron Mackintosh, and Turandot for Opera Australia, before building an impressive career as a musical director and conductor. Her numerous credits include the musicals Wicked, Once, Dr Zhivago, Legally Blonde, The Book of Mormon, and Charlie and the Chocolate Factory, as well as Die Fledermaus and The Merry Widow for Opera Queensland. She has also conducted the Sydney Symphony Orchestra and West Australian Symphony Orchestra.
Dickerson started the Rob Guest Endowment for young musical theatre performers, established in memory of musical theatre star Rob Guest – her partner for a decade, who died in 2008 after having a massive stroke while they were both working on Wicked.
Sadly, MSA has put paid to Dickerson’s busy career. When Charlie and the Chocolate Factory closed in Melbourne on February 2, she made the decision that the time had come to retire, and she withdrew from Frozen, scheduled at this stage to open in Sydney in July.
With the coronavirus now spreading through Australia, and her immune system down due to treatment for MSA, Dickerson has moved to her parents’ home in Dubbo for the time being.
She talks slowly, as her speech is slightly slurred – something that she addresses immediately. “Be sure to tell me if you don’t understand anything,” she says.
Dickerson is warm and generous, talking straight-forwardly about her condition, seemingly without any bitterness.
“I am very lucky. I have good friends and a family network so as much as it’s a shock to go from everything to nothing very quickly overnight, I have very good friends helping me through the process,” she says with a smile.
“I have had lovely letters from musicians around the country so it’s very nice of them to get in contact. It’s the bad luck of the draw. It’s not hereditary, I didn’t catch it from anyone, it’s just bad luck. It’s quite rare, and it’s quite unusual for a girl of my age to be affected, but there it is.”
Dickerson says that the disease first affected her piano playing. “My right hand would be slower to respond and I would wonder why it did certain things when I told it not to. The messages weren’t getting through clearly to my right hand.”
At the end of her time on The Book of Mormon, she stopped working as a pianist. As time moved on, her conducting began to be affected. “It is the right hand that is responsible for tempo. I’d know [some of my conducting] wasn’t accurate; the internal and external tempo wasn’t accurate. I could see myself on the outside not doing what I wanted to do, and wondering why. The frustration is that I know it’s incorrect but I can’t change it. So that’s why I retired at the end of Charlie before it got to the stage where it was affecting my tempo badly. I decided it was easier to stop.”
“At the moment I feel I just need to step back and deal with the health issues. In time, I hope to get strong enough to write and even teach again because I have built up a lot of knowledge over the years. I don’t think I will ever conduct professionally again but I think if I get back to teaching that would be good,” she says.
Now that she has stopped work, she has been able to start the treatment that is available in Australia. Eventually she hopes to go to the US where other forms of treatment are being developed, but that won’t be possible until the coronavirus crisis has passed.
“Basically, all the treatment is experimental so they didn’t want to try me on it until I stopped work. Now I’ve stopped work they will try different things. The first thing they will try is immunology, and that’s in Australia. And with everything going on [with the coronavirus] Australia is the only option because I can’t travel. So hopefully once this crisis is over, different treatments will be available overseas,” she says.
“Australia concentrates on immunology and stem cell research is being done in the States, so it would be stem cell research I would follow up and there are trials happening in the States. The research is quite experimental. It’s not entirely approved in Australia yet. It is still in the trial phase so the risk is mine. [In the US] there are good trials at places like Harvard but they are not approved and it will take a number of years for it to go through the approval process. The current crisis will mean that the trials will be delayed, I would assume. Hopefully this [coronavirus] will be over by the time I would be ready to travel anyway so we will see what happens.”
“If I am accepted into a trial for medication for treatment of MSA it will be a trip to Boston each month for nine months then staying there for six months –when this craziness is over, of course. I’m starting immunology treatment I hope in the meantime in Australia. I’m keen to try anything at this point.”
Friends were planning to stage a concert to help raise funds for her overseas treatment, but that is not possible at the moment. However, they have established a Go Fund Me page, details below.
Dickerson admits that it is hard to keep her spirits up, particularly with the coronavirus compounding things. “At the moment I am trying to do the exercises that have been set for me by the physiotherapist and the speech therapist, and I am keeping myself busy doing lots of practice. I am looking forward to May when the next phase of the treatment starts at Westmead Hospital, hopefully, but we will see what happens. And then the next phase after that would be overseas, later this year hopefully.”
“I miss playing; sitting down to play [the piano] for my own pleasure [is the thing I miss] most I’d say. I find that very frustrating at the moment not to be able to play,” she says wistfully.
Asked if listening to others playing the piano helps at all, she says, “I don’t really take comfort at the moment in listening, but hopefully I will in time. I only finished work on February 2 so it is still quite recent, so I need to have some time away from it so I don’t hate it, and don’t link it negatively.”
Dickerson’s symptoms are very gradually getting worse. “I think the treatment helps. It is getting worse at the moment, but very slowly,” she says. “The hope is that we will slow it down. They can’t cure it but you can live with it so it’s fine by me if they can slow it down. I think for me, getting stronger to go overseas, is a good thing for me to be doing now.”
The Go Fund Me page to support Kellie Dickerson’s treatment can be found HERE