By Dr Su Winter.
We have just been informed that shortly after publishing this incredibly honest and raw piece that Su has passed away. She will be remembered at WIN as an source of inspiration, a trusted sound board for ideas and as a treasured friend and colleague.
Vale Dr. Colonel Su Winter.
Dr Su Winter is an intensivist, anaesthetist, mother, and Colonel of the Australian Army. She was recently awarded the Medal for the Order of Australia. She is also a mentor, an inspiration and a friend.
At the end of 2019, I really thought my life was sorted. My daughter had finished school with an excellent ATAR, I had a job at the Alfred, where I was the happiest I had been at work for a long time, and I had started getting fit. I remember sitting at Christmas dinner and thinking how good life was. If knew how my life would change, it may have been a different event.
The first sign of trouble occurred in Jan 2020. We were walking back from the beach and my husband commented I was limping. Being a doctor, I did an assessment and realised I had a foot drop. I wandered if I had had a stroke, so took and Aspirin and got a referral to a neurologist colleague. At the back of my brain was a nagging that perhaps, I had MND, that both my mother and grandmother had died of. Neither had had any genetic testing, but it was a bit worrying that there was a pattern.
I went and saw the neurologist on the Monday, had an MRI on the Friday and nerve conduction studies of the Monday. I must be the only person who has ever cried when they had a normal MRI.
By my review at the neurologist, the following Friday, we were both sure I had MND.
We were going to Japan on a ski holiday, the following week and my family and I decided there was no point cancelling. I thought my errant foot would be ok in a ski boot, as it was. We had a great holiday, a few days in Kyoto, then two weeks in resorts, firstly in Hakuba where we have been many times and have fond memories, and many stories, and secondly in a place called Lotte Arai. I spent my down time writing a bucket list of what I wanted to do. The mean time of life from diagnosis to death of MND is 30 to 36 months, so time is precious.
We returned to Australia on the 20th of February and things were about to change. There were rumours of a virus running wild in China, and Australia had closed its borders.
I went back to work the following week and things were starting to change. Planning for expanding the unit, training to use PP. Almost the phoney war, everyone was looking at what was happening overseas, and wandering what would happen here. Fortunately, we did not get the Tsunami that places like Italy and New York did. Public health and being an island helped.
We managed to sneak in a trip to Hobart before the first lockdown. I particularly wanted to see my 84-year-old dad and break the news of my illness to everyone. It was the last time I walked on and off a plane unassisted.
I have matched the progression of my disease to the pandemic. During the first lockdown in 2020, we were still in our house in South Yarra. It has lots of stairs, and all the bathrooms and bedrooms were up a fairly narrow staircase, but I could manage. I realised pretty early this was not going to work long term, so we decided to move into an apartment with no stairs. We looked for an apartment during the first lockdown. Meeting a masked agent downstairs and going upstairs unaccompanied was just part of what was to become a brave new world. There wasn’t a lot around, either very expensive or very small. We were getting a bit frustrated until we walked into the apartment we now live in and have subsequently purchased. There is something magical about living in an apartment that overlooks Albert Lake and the bay from a large deck. The building community have also embraced us, although we are about 20 years younger that most.
I was still working reasonably well; I used a foot raise to control my floppy foot but otherwise was completely normal. I could still function as an intensivist but not on the covid ward, the old and the infirm were sent to work on Level 3, the satellite unit. This was not a bad thing, a great group of nurses and allied staff turned out to be a great advantage as I got more disabled.
We were going to Singapore for the Rugby sevens at Easter, which was cancelled, then we decided to go to Noosa, also cancelled. Instead, we went to our beach house on the Mornington Peninsula. We had to hide out as there was active hostility to Melbournite’s who came down, probably sparked but a bunch of people who came home from Aspen and did the wrong thing. It was a great break, food, drinks, and books was easy to do.
We had a few weeks of freedom before the second lockdown in July. We went to Buller and set up our apartment, for the ski season that never happened. I meant to go to Hobart and see my family but didn’t get around to it.
The second lockdown began in July, we moved the week before. I had just started using a walking frame but was pretty mobile and only used it for long distances. I had got a wheelchair but had not used it. As the lockdown progressed so did my MND. After a bit of negotiation, the hospital said I could work in my wheelchair on the unit. I took it in and got to work each day using my walking frame and an Uber. I did Level 3 and telehealth (looking after the regional units) until late Jan 2021. My dad had a heart attack in Hobart during the lockdown and I couldn’t get an exemption to go and see him. As soon as we unlocked Maddy (my daughter), and I headed down to see everyone. No masks, no social distancing Tasmania was having a lovely time.
We spent Christmas as the beach, and I managed with a walking frame. I was pretty stable until early February when I had a fall and broke my fibula of my denervated leg. A boot, put me in a wheelchair most of the time. I had finished working on the floor late in January, so could continue to do telehealth from home until then. We had a birthday party for me in March and a week in Noosa to follow. I did lots of work to find a wheelchair friendly hotel. It was ok, but the shower was difficult, I now ask do they have a roll in shower. We went back into lockdown again shortly after.
I got a couple of trips to Hobart during the 4th and fifth lockdown. Travelling was becoming increasingly difficult, I had to use an isle chair and transfer onto a seat in a plane. My right arm was getting weak and stiff, so transferring is challenging.
I finished work officially on July 24 but was not rostered for the week before. We went to the Australia versus France on the 13thof July. We went in gate 7 but did not wait in the huge queue as we went directly via the handicapped entrance. I got a text on the Thursday that said I was a tier 2 exposure (test and isolate), negative. The lock down started that night, and we got a text on Friday night to say we were tier 1, a close exposure. I tried to ring to query it, no luck but my husband, JP had been to the toilet at gate 23 and 24 (where the positive cases had sat) so he had to quarantine, so we did it together. We did the right thing and got a day 13 test. He was cleared the following day with a phone call. I heard nothing for 48 hours, and spent eight hours on the phone, trying to contact DHHS. I finally rang a colleague, who works for DHHS, 10 minutes later I was cleared.
Lockdown five ended the day we got released. It was lovely to catch up with friends, sit in cafes, go to the NGV, then lockdown again. We are now in lockdown six. My holiday I spent hours organising, talking to hotels, and restaurants to make sure they were wheelchair compatible has all been cancelled. We had hoped to drive to North Queensland via NSW.
I am a bit sad, as I think my window for doing it has passed, due to my decreasing mobility. We may get to fly to Cairns and have a break later in September, if anything opens.
In summary, being diagnosed with MND is the pits, being diagnosed with MND as a pandemic starts is indescribable. I wrote a bucket list, with great insight, according to where I predicted my disease will be. I try to stay positive, but some days I really think the world is against me. Maybe when we get out of this lockdown, I can work on some of the bucket list.
Dr Su Winter (top left) with colleagues at Alfred Health Intensive Care Unit, September 2019
Click on the button to donate to "Fight MND" - a charity established with the purpose of finding effective treatments and ultimately a cure for Motor Neurone Disease.