03 Mar Multiple Sclerosis | The private fight of a public face
The St Patricks Day fires in March 2018 changed a lot of lives forever. Among them, was the then Corangamite Shire Mayor, Jo Beard – the face of the community-led recovery.
It was an awful time – a time of great pain. Cr Beard’s emotional pain was easy to see – this was her community and it was hurting. The stress and anxiety was raw – it still is.
Cr Beard’s physical pain however was something few knew about. That’s how she wanted it for another eight months. Then she would step down as Mayor and make her MS fight public.
The 41-year-old mother of two agreed to tell her story in TDHS’s Autumn Quarterly to mark World MS Day on May 30 and to provide an insight for others into the life of someone living with a chronic illness.
Jo Beard is no stranger to doctors and hospitals – she has a heart condition, has a history of kidney stones and now speaks openly about her struggles with mental health.
It was these, and other, pre-existing issues that hid her ultimate MS diagnosis. Symptoms that would have rung alarm bells for other people were not new to Cr Beard, were easily rationalised in her mind and, in some cases, by specialists.
“For me incontinence wasn’t abnormal. I’ve always had trouble with kidney stones and always had really low regularity bowel movements,” she said.
“For someone who had never wet themselves before, what started happening would have really stood out as a real problem, but I rationalised it with my history.
“My eyesight was declining as well, but dad was diagnosed with glaucoma and it’s hereditary so we were going down the wrong path with that as well.”
Cr Beard was someone who would walk, run, ride or go to the gym every day and ultimately it was issues with her left leg that pointed her towards a bigger problem.
“With my running and playing sport, there were times when the leg just wouldn’t work and I’d trip over. Or I’d just miss a step and stumble – it was worsening…at times it felt like I was lifting bricks attached to my leg just to walk,” she said.
“We thought I might have had nerve damage in the leg and then just before Christmas in 2017 my urologist ordered an MRI of my brain and spine.
“Within 24 hours he rang and said the scan had found demyelination…I said what does that mean and he said I’m so sorry, but unfortunately it means MS.
“I remember almost feeling relieved that they had found something and we now had a possible explanations for why my body was doing certain things. The news could have been so much worse, it still can, I still feel like that – I’m pretty positive.”
One lesion caused by MS can have an impact on part of the body. Cr Beard was diagnosed with 13 and significant demyelination.
“It’s explained to me like an electrical wire. The plastic sheath is stripped away by the lesion and the wires are exposed which makes it harder for the messages to get through the nerves to the rest of the body, and that causes the fatigue because your brain and body has to work much harder,” she said.
Cr Beard, her husband Daniel and their two sons Jordan and Cooper had a “pretty normal” Christmas weeks later. Her immediate family were the only other people she told.
“We wanted to wait until we saw the specialist and thankfully that happened quickly in the new year. I went to a specialist in Geelong, Professor Cameron Shaw, for another MRI and formal diagnosis. I got lucky with him, we felt comfortable and knew he was my person.
“I have Primary Progressing Multiple Sclerosis (PPMS), which is less common. It’s what they call ‘steady worsening MS’.
“Relapsing forms of MS are more common. It’s when sufferers have attacks and then improve and then potentially have another attack. It’s more up and down, whereas mine is steady and worsening. PPMS represents about 10 percent of all those with MS.”
Cr Beard said with careful management she can have periods where it is more stable, but ultimately she had to live with the frustration that it was progressive.
“There is no cure and not many treatment options. Luckily Ocrevus was new on the Pharmaceutical Benefits Scheme – it’s delivered by IV every six months.
“Nothing reverses the damage to my nerves – it’s an antibody therapy. It tries to stop the immune system attacking the nervous system and wipes out the immune system to do it.
“I had my first treatment two days before the St Patrick’s Day fires. The first treatment is split in half two weeks apart so that they can carefully monitor side effects and make sure it’s safe.”
Cr Beard said she was recovering from that first treatment on the evening of March 17 when her phone started ‘pinging madly’ with news of the fire event developing.
“It was adrenalin I suppose – I went into fight mode and went straight to the CFA station in the singlet and shorts I’d been sleeping in,” she said.
“I was still there, still in those clothes the next day when I addressed the public meeting – almost no one knew about the MS let alone my first treatment two days earlier.
“My MS was totally shelved. Those at the Council who knew were wonderful and my family knew I was exhausted, but I didn’t care. I had the public role and I needed to step up.”
Cr Beard said that first night was heart wrenching and as the scale of the event grew she let her guard down ever so briefly.
“I remember Daniel came to see what I needed and to make sure I was okay and I fell into his arms…the firefighters that were coming back…what they were describing – I said to Daniel ‘we’re going to lose lives tonight’.
“The impacted people were people I knew – it was personal. What I was going through was nothing compared to them. But here I was with no immune system hugging people and hosting the Prime Minister, the Premier and doing national media. It was surreal in every way.”
The peat fire went for 53 days, and Cr Beard lived and worked the fires and community recovery for many months after that. The only time she slipped away was two weeks after St Patrick’s day for the second half of her treatment in Geelong.
She said her dear friend and fellow MS sufferer Cathy Merrett had been a big support.
“Cathy has lived with MS for nearly three decades and she’s an inspiration. She mentors me through it and helps me understand what’s happening with my body, as well as the social aspects that MS throws at you. Life does change, but it doesn’t have to define you…we think the same. Cathy and her husband Herbie, continue to be incredible and supportive friends to both Daniel and I.
“Science has come so far and I’m fortunate to be diagnosed in this day and age and to have access to treatment.
“I’m still coming to grips with having a walking stick and I’m probably guilty of not using it publicly as much as I should. I’ll work on that.
“My mind is fine, I still love being a Councillor and until I think I can’t contribute to public life I’ll keep putting my hand up.
“Memory loss is part of it, but I manage that by writing things down. I still have purpose and drive for life and I want to give a good example to our boys around resilience.”
Cr Beard said she was learning to give into her body at times, to be less stubborn, to rest and recharge when required and to accept help.
“The progression of the symptoms is frustrating, but it’s teaching me that I can manage that. I have my moments though – of course I do.
“I was a gym junkie and I resent that being taken away, I get angry that my body won’t do things I want it to and that it impacts family life. We had plans – now they’re different.
“It’s painful, debilitating and depressing. Daniel, the boys and our family have been incredibly supportive – it’s life changing for all of us. But I’m positive, I’m still me and I have plenty to give.”
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