Sharon Kirkwood lives in Canberra with her husband and two young boys. For the last five years she has also lived with motor neurone disease. This is her story of the ups and downs over the five years since her diagnosis.
I made it! On the 27th of April 2023 I reached 5 years since I received my MND diagnosis.
Double the average life expectancy that people with MND are given. A time that only 10% of people with MND will reach.
This was always my aim and in the first post I shared on this page I said that I planned to be in that 10%. But of course I couldn't have known for sure and it's scary to think that I might not still be here now.
Did anyone else love going in the Maths, Science and English competitions when you were at school? I was a bit of a nerd and loved going in them each year.
I got a high distinction a few times which I think was the top 10%. Similar to reaching the five year mark (top 10% of survival) I think they have both happened partly luck/genes and part what I do.
No one can know or predict how fast MND will progress and how long someone will live for. I know people who were diagnosed before me that are still alive with some less affected and some more affected than me.
I also know so many people that were diagnosed after me, including young people, that only lived for a year or two. It's just awful for us who have the disease and awful for our loved ones to watch the disease taking over.
What I believe may be assisting my survival is my positive attitude, my sons keeping me busy living, my being proactive in getting equipment and interventions and the two experimental drugs I have been taking for the disease.
The two drugs have been used in clinical trials and showed some positive results. Neither are on the pbs so they are fairly expensive and one of them I have to source from Japan. Despite not knowing for sure if they are helping I will continue taking them.
I think of MND as affecting five main areas of the body. Lower limbs, upper limbs, speech, swallowing and breathing.
By early 2019 all of these areas had started to become affected for me. I'm now at the point where the first four are having a significant impact on my everyday life.
However I have managed to plateau my breathing. Early 2019 when I last had my lung function tested it was down to 38% and I had started to get a bipap machine set up ready to use. Somehow, four years later I am still not having to use this. I can't know for sure but I suspect the medicine I get from Japan is helping in this regard.
To mark five years I thought I would share a summary of my journey and I will start at August 2017, a month or two before my first symptoms and eight months before my diagnosis.
Had a work trip to Adelaide. Played indoor netball (looking back I do remember feeling just a little bit more unco than normal - kind of like my body couldn't quite make the move that my brain was trying to make)
Started noticing a slight limp and other minor issues with my right leg/foot
Had weekend trips away to Newcastle and Melbourne where I noticed the limp more and I began to struggle to keep my thong on my right foot. I went to a doctor (but not my regular GP) who gave me a referral for a scan but life was busy and I didn't end up having one.
When school holidays began I went to my regular GP and then had scans which were mainly checking for MS and brain tumor. On Christmas eve I went and got the results that the scans were clear and my GP referred me to a neurologist.
Due to Christmas and the holidays it was late January before I saw the neurologist. He sent me for more scans so I took myself off to Bowral (cheaper there) on the first day of the new school year.
Went back to the neurologist and again scans were clear. Testing in his office also revealed for the first time that I also had weakness in my arms. When I realised this I actually started crying in his office because it kind of made me finally go "shit, something is definitely wrong".
Anyway after the two visits to him and the tests he had done he gave me his opinion that there was nothing physically wrong with me and it was psychosomatic. He told me I should do yoga and try and relax more.
I had even asked if it could be MND and he laughed in my face telling me I was a spring chicken, he's seen MND before and I definitely don't have it. I walked away from that appointment wanting to believe that I just had to relax and everything would be ok.
Deep down though I think I knew that it wasn't that simple and this was reaffirmed the following week when I went to a physio and my GP and they both knew I needed a second opinion. I then went to a second neurologist who was extremely thorough.
I had EMGs, nerve conduction, lumber puncture and went to a session where I was basically a case study with a room full of students who discussed what could be wrong with me. I had started to become a bit anxious by this stage but overall I was doing OK and going to all these appointments myself.
I was lucky to have a very supportive deputy and principal during this time which made things a lot easier in terms of having flexibility going to appointments and having support in trying to still do my head teacher role.
A few weeks after first seeing the second neurologist he concluded that he suspected I had one of two conditions that predominantly were from upper motor neurones. One of those was PLS; a rarer and slower progressing form of MND.
So initially this gave me some hope but as time passed in March and April I started having fasciculations (constant twitching of my muscles) which I knew were a bad sign and left me feeling sick with worry as I waited for my appointment with the MND specialist in Sydney.
I tried to stay busy throughout this month, firstly at work and in the holidays family time in Wollongong and Parkes.
I hadn't told many people what was going on and only our immediate families knew what day we were going to the MND specialist. So now it was time.
Adam and I travelled to Wollongong the night before and then drove up to Sydney the next morning. We were there for probably four or five hours doing a heap of talking and testing before we were given the diagnosis I was expecting but had been hoping wouldn't come.
I returned to Sydney and underwent procedures to assess my eligibility to enrol in a clinical trial. I then participated in this trial for the next 9 months. I'm pretty sure I was on the placebo and I recently found the results of the trial and they didn't find anything of significance in terms of positive effects.
May to September 2018
These next few months were pretty full on as I juggled HSC teaching, leading my faculty, attending MND clinics and support groups locally, travelling to Sydney for the required check ups for the clinical trial, meeting with allied health professionals, getting prepared for my initial NDIS planning meeting, being on the parish council at my church on top of being a Mum and wife.
I honestly look back and wonder how on earth I did it! It's certainly a world away from my day to day life now.
In June we also had the first Walk to D'feet MND in Canberra. I got such an amazing buzz from having so much support so soon after my diagnosis. I was told at the time that it was the largest team and the most funds raised from a team that they've had.
We went on a wonderful four week holiday to Canada and America. This was a holiday that Adam and I had always planned to do this year to celebrate my 40th. Even though the boys were probably too young to fully appreciate it, I'm so glad that I was able to do it with them.
Had my NDIS meeting and was blessed to find an amazing support worker as my first one (Hi Ana!).
We went for my first appointment with a new specialist in Sydney, Dominic Rowe. I was still going to the initial one just to finish the trial but I had been so disappointed with the way that the diagnosis had been delivered and the minimal access (eg none) to the main neurologist. In comparison Dominic actually meets with his patients and I liked his empathetic, humorous but real approach.
Whilst I was overseas I had started to notice slight changes in my speech so I spent a fair few hours undertaking voice banking. This then gave a synthesised version of my voice which I have on speaking programs on my phone and computer. It's ok but definitely sounds synthesised.
After becoming more and more unstable on my feet I now started using a walker for short distances and the scooter for longer distances whenever I was outside
I had three falls in a week, one of which was on the road in front of daycare while trying to get my walker from the boot. After these falls, I started to use my walker indoors and I had to have someone get the walker out of the boot when I reached my destination.
I could still get in and out of the car by myself at home by using garage shelves and the car to support myself as I moved, keeping my walker at the garage door. I was still driving.
The new school year brought some changes to my daily life.
My speech and writing were now obviously affected (though probably more obvious to me than others). I was also struggling towards the end of the previous year in effectively being a faculty head teacher.
Although I was still typing it was a slow and tiring process so along with the writing and speaking difficulties it was getting really hard to teach students via distance education, let alone support and lead other teachers. It was a big year for the school as a whole as the distance education part of the school where I worked was separating from Karabar HS and becoming a stand alone school with a purpose built building.
Thankfully the new principal was also very supportive of me and I was able to drop down to three days a week in a secondary studies head teacher role. This allowed me to still contribute to the school but without the day to day pressure of teaching and leading a faculty. The other big change was that Harrison started kindergarten!
So basically my week consisted of two days a week off with one on my own and one with Hayden. These days allowed me to go to appointments, go to a hydro pool, have physio at home and rest. On these days plus two of the days I worked I still had to get the boys to day care and school (and before/after care).
Occasionally I would have a support worker here but generally I would drive to the school and daycare and a support worker or my brother would meet us there and take boys in. The day care staff also tried to help by taking or bringing Hayden out to the car. When I would arrive at work I would call a colleague who would come out and get my walker from the boot and bring it around to me, and then the reverse in the afternoon.
Looking back it was exhausting. I mostly kept a positive face during the day but there was many an afternoon or evening where I would get in the car or shower and just cry. From exhaustion, frustration, sadness.
I had a wonderful event organised in my honour and to raise money for my family. Women supporting women.
The main organisers were two ladies from work and two ladies from netball and it brought together so many women from those two Queanbeyan communities, other areas of my life and people I didn't even know. My whole family then went to my sister's in Mackay for Easter and to celebrate my Dad's 70th birthday.
We travelled up to Newcastle to attend our first Hunter MND walk. It was wonderful to be joined by people from almost all parts of my life. From our time in Muswellbrook we had friends and colleagues from my work and Adam's work, netball friends, students, relatives as well as friends from Parkes, Uni and Queanbeyan who now lived in the Hunter.
I also had a sleep study to assess my breathing at night time. Although I'm pretty sure that you actually need to fall asleep to get results!
We had always planned to go to New Zealand for Adam's 40th birthday but we decided it would be too much. The next best thing was Tasmania so the four of us took the overnight ferry from Melbourne and spent some time in Launceston, Hobart and St Helens. I discovered that it is difficult to keep your balance with a walker on a moving ship!
We then returned to Canberra in time for our second FREEZING Canberra MND walk. Thankfully after this one they stopped having the Canberra walk in Winter! Side note - this year's Canberra walk is being held in October.
I went and got a peg tube put in. As my swallowing and hand/arm strength weakened I found that I wasn't eating as much and I knew it was important not to loose too much weight. It's also encouraged to get it put in sooner rather than later because as a person's breathing deteriorates it becomes riskier to be put to sleep to have the procedure.
Around this time I also made the progression from the walker/scooter to a wheelchair. I had already been using a loan one when outside because the effort of reaching out to control the scooter was becoming too much.
I then received my custom made chair funded by the NDIS. It had been scripted to fit my lanky body and included features that are making things easier for me especially the ability to change heights and tilt forward. These make my transfers so much easier.
Well well, it seems we weren't satisfied with Tasmania and we ended up making a fairly last minute decision to head to New Zealand with Adam's parents. I had only been to Queenstown before so it really nice to do some driving on both islands and see the beautiful and contrasting scenery.
We got our new car! A KIA Carnival to be modified for a wheelchair. I also stopped driving at this time. Although I could still safely drive in a straight line, trying to turn at all was becoming incredibly hard. I was only driving to work, daycare and drop off/pick up at the school where I knew what turns there would be and that I could manage them.
I couldn't continue my role at work anymore so took leave and arranged to just do casual days on Tuesday and Friday working on admin tasks. Support workers or Adam/Hayden drove me over and back and a great group of colleagues continued to help me with opening doors, heating my lunch, unpacking and packing my bags etc.
I made the decision to stop working.
The physical effort of getting there and being there had just become too hard. The last straw was a practice and then a real evacuation. I just couldn't evacuate quickly because I had to try and get up from my chair and try and transfer to walker and then to my scooter and it all forever and was really stressful. It was also going to potentially put me and others in danger. It ended up being good timing because the covid lock down started shortly after.
We quite enjoyed lock down and had nice family time. We were lucky that Adam was able to work from home and I got to do some cool activities with the boys.
This month saw two things happen that really changed my quality of life.
My car had been sent to Melbourne around March/April to have the wheelchair conversion done. It was only meant to take a couple of months but covid restrictions meant that the time frame kept getting pushed out. So I was pretty much stuck at home for five months with wheelchair travels around our local area. The feeling when I finally got back was unbelievable! I remember we surprised the boys by picking them up from school and heading to a new playground they had been wanting to visit.
The other thing that happened was that I got a SPC catheter put in. This made such an unbelievable difference to my life and I would 100% recommend for anyone in a similar situation. Such freedom not having to constantly thinking about toilets, having accidents because I couldn't get there in time, getting up in the middle of the night, restricting water intake etc etc
Had our first two trips away with the new car and my catheter and it made such a difference in regards to knowing that we wouldn't have to stop while traveling for me to go to the toilet. It was also great to know that I wouldn't have to wake Adam in the middle of the night to get me up to go and when we had days out we didn't have to plan around having access to an accessible toilet.
We were able to take advantage of some relaxation of the border restrictions to have a family holiday on the far north coast and finally meet my five month old twin nephews who live in North Queensland.
The past two years really haven't seen major changes or developments.
We had a big driving holiday to Mackay in April to visit my sister and her family. My parents and brother also were there. It was a big drive and we had to break it up into four days of driving.
When we were having a half way break on the gold Coast, Brisbane went into a snap covid lock down and there was talk of that extending to the gold Coast and the border closing. We couldn't take the risk so decided to pack up and get into NSW.
We found somewhere to stay the night just north of Coffs Harbour and started travelling further south the next morning. We heard a radio update that sounded more positive and so after much deliberation we turned back around and continued our journey!
I had to have my peg tube removed and replaced with a balloon one that the community nurses can change every year at home.
You would normally be put to sleep to have this procedure with the doctor accessing the stomach through the throat. However because my lungs and breathing are affected sedation can be risky, therefore we'd decided not to sedate me and the doctor would just rip it out.
Unfortunately when he did that the circle flange that was on the inside of my tummy broke off and remained inside me. So I ended up having an unplanned sedation to remove that, which was somewhat stressful but thankfully it all went well.
The next day the ACT went back into lock down! For the most part we again enjoyed that time.
This year saw covid finally hit us with Adam testing positive. Thankfully the rest of us were able to avoid with Adam isolating in a separate room.
This experience as well as Adam having to undergo surgery and not being able to lift me for a month made us rely on other people more. So Mum got to become my sleepover buddy in my room!
We've now used that support quite a lot when Adam has experienced carer burnout or has been unwell. It has also allowed him to have a couple of trips away on his own or just with the boys and the boys and I had a few nights in Parkes without him.
The most challenging thing towards the end of last year was trying to find and then keep good support workers.
I've also had some stressful times with my condition affecting the mental health of some family members. This in turn has had some effect on my mental health as I try to support them amidst my own stresses and problems.
Highlights from the year included time with family and attending our first Big Freeze in Melbourne.
Although the issues from the end of last year are still impacting me, I'm really making an effort to enjoy life and have been able to see more of friends than I did last year and I hope to continue that. I've found a couple of great new support workers and hoping to find just one more. I'm now trying to have support most of the day between 7am-7pm so that Adam doesn't have to be my carer as much as he used to.
I'm really proud of the life I have been able to live over the past five years and am grateful for the family, friends and support workers that have helped to enable that to happen.
I'm proud of the awareness and fundraising I've been able to raise and I'm grateful to all of you that have contributed to that.
I'm proud to be alive. I'm grateful to be alive.
You can learn more about Sharon's life with MND on her Facebook page Sharon's MND Journey.