Andrew Doller

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Nat and I - a journey through MND

Hi All,

Many of you have only heard a little about how Nat and I came to find out that she had MND, and probably even less know about how we went through our journey with it, so I thought I’d add a bit of the story here before I start my challenge.

Very early on in my relationship with Nat I found that she was very prone to aches, pains and unusual symptoms. Due to Nat’s history and past trauma she was very quick to assume the worst,  and would catastrophize that this was the end of her. Stomach pains became cancer, small spots on the lip meant skin cancer, a cyst on the eye became another life threatening disease. So I’d become accustomed to calming her down, and we’d begin treating the issue and of course they’d go away.

So in April 2023 when she messaged me from work that she wanted to see the Dr as she just had a weakness in her left hand and that it caused her to drop some gowns she was carrying, and that it was just weak and unable to grip and hold things,  I’ve assumed that there’d be some action we could take, some treatment to follow, and she’d be back to her normal self. Well, in this case it seems I was wrong.

We headed to the Dr with the first symptom, and the first causes were either a nerve issue in the wrist/arm/shoulder or perhaps carpal tunnel or similar. We continued to try to find the cause and solution, and never really got to the bottom of it. MRI, Xrays, PT, splints, massage, Nurofen gel… none of them either provided a solution or gave much more than a passing relief to her symptoms. At this time she was working as much as she could (her fear was that if she couldn’t work she’d lose her house was a major driving factor) but it was a daily struggle and she’d barely be able to work 3-4 days a week and then try to recover on her days off.

This went on for a few months. At that time I was still in the midst of my settlement issues, trying to figure out if I had to sell my house, where I would move to if I did sell etc. I was only able to be with her for a couple days at a time at best. I was not there for her as much as I desperately wanted to be – and she’d let me know about it. I’d head to her place after work, spend the night (often in the back room as I disturbed her much needed sleep) maybe work from her place the next day while she went to work, and look after her after work until I had to go back home again. The symptoms kept evolving at this time – issues with the right hand began, complete loss of strength in the pincer grip, nerve pains up the arm, in the shoulders, across the back. Nothing we did really helped, and no-one seemed to have a definitive answer. It might be this or maybe that…  nothing entirely fit.

Her Dr gave us a referral to see a neurologist for a nerve conduction test in August, and we booked it in ASAP for end Sept. While waiting to get in for the test, her feet began to show signs that something was happening there – tingling and numbness, similar to her hands at the start.

Along comes the afternoon of the NCT 22/9/23. I watch her as the tech puts electrodes in various positions of her left arm and watch as she gets the shocks, her arms contracting. She also does a few in the leg. The tech seems worried, and there seems to be lots of mmms. At the end she says that she wants us to see the neurologist ASAP and makes the appointment for the following Tues.  That can’t be good… We try to put it out of our minds as we drive home, and I try to distract her with dinner at Bam Bams in Avonsleigh – a restaurant she loved and I’d promised to take her back to for a dinner.

So Tuesday comes along, and as is the way of specialists she’s running late and we are her last appointment – after 4pm. Specialists – not generally known for the bedside manner or breaking the news gently. She basically blurts out you have MND, here’s the details for Calvary Bethlehem, get in touch with them ASAP to get things started. Needless to say we both felt like we’d been hit by a ton of bricks. We were both numb the rest of that night as we tried to take it in. Denial sets in and we both feel that surely it’s something else – it can’t be MND. Unfortunately, the next morning I’ve had to go back home/to work at 5am and leave her to her thoughts. I hated leaving her that day – and I’d hate it every single time I had to leave her from that point onwards.

My plan was originally to get out of my house ASAP and move to a rental to be nearer to her, but by the start of October I knew I had to be with her as much as possible so my thoughts changed to trying to move in with her. I knew this would be a big thing for her – she hadn’t lived with someone for a very, very long time, and her home was her safe place, so having someone in her house full time would be a challenge for her.  As October went on, we kept being in denial about the Beast, preferring to look up all sorts of other problems it could be, but none ever seemed to fit. By November though, I think we’d accepted our fate. I can’t remember the discussion but I must have said that I have to be with her – there’s no point in me finding another place. She agreed, and from then I began to call her place home.

In November her symptoms kept getting worse, minimal arm/hand strength, legs weakening.
She had a few falling events where her legs or balance would just give way. Once she knocked her head causing a bruise to the eye, and another event she fell on her hip causing massive bruising to her buttocks. I couldn’t be there all the time still – so every time I went out I’d worry that she’d have a major incident and I wouldn’t know about it. It was now that we also began telling people about our diagnosis. Cue much tears.

December came along , and I think we almost hibernated for most of it. We couldn’t deny the fact that we were dealing with the Beast, but we weren’t ready to begin to face it. We tried to do the things we loved. We went to concerts, we still made it to the Boxing day test one more time, tried to have our first real Christmas together - but the overhanging doom made things very difficult for us to enjoy much.

New Years Eve came along, and we were lucky enough to be invited to a great location to view the fireworks across the city. There was something important that I needed to do. As the fireworks ended I hugged her tightly, turned her to face me and said something like “so, are you going to marry me?” I think I caught her by surprise! Her face beamed as she said yes. Early in our relationship I said that I was not opposed to getting married again, though at that time I was thinking sometime after we’d been together for a few years. I knew it was a lifelong dream of hers, and I knew things were only going to get worse, and that we needed to be quick if we wanted her to be able to walk down that aisle and say those words. There was no time to waste.

Early in Jan I finally had the contract signed for my place, and I could finally officially move in with her – though by that time I was well and truly at home with her 99% of the time. Thank God for Covid and working from home. We made contact with Calvary and began to receive some of the much needed assistance that we required. Wedding plans were in full swing which provided us with much needed distraction and purpose. We also had to call time on her working - she couldn't drive, and had no chance of performing her duties there.

Feb was a blur – most of it consumed by the need to organise the wedding which kept her very busy. Her walking was beginning to struggle, so the wheelchair I bought in Jan came to be her main way to get around. I needed to hold her to transfer to the toilet, bed, chair. I began to change her as she could no longer move her arms to do it. I was feeding her as she could no longer hold spoons or cups. Straws were our saviour for drinks – I could at least place it in front of her to drink at her own pace. I’ll forever be thankful to Deb and Kim for taking her out and helping her find the dress of her dreams.

March 3^rd – Our wedding day! The most memorable day of our lives. So much love from so many people. Watching her come down that aisle is the memory that will live in my mind forever. Such a wonderful day and night.  I could go on about that day for hours, but this story is about the Beast.

From that point on, we were focused on taking the beast on daily. I was lucky enough to have a very understanding work place, so I could be at home 24/7 and look after her. We managed to get to 2 more footy games, including the Anzac day game, and a few other events but we knew that was going to end soon. I could still transfer her to and from our car, but it was getting much harder to manually transfer her myself, and more painful for her. I remember one time after the football, I was  trying to manoeuvre her into the car seat, and she was screaming in pain from her shoulders while in the carpark at Spencer St DFO. There were a few times when we’d both almost given up as I struggled to move her around, once even having her on the toilet seat for an hour as we both got the strength to stand her up so I could move her to the wheelchair. Somehow I managed to get her to where she had to go. Bathing went from standing her in the shower on her own and keeping an eye on her, to me squeezing in with her in the shower trying to wash her (it had been one of my wishes to be in the shower with her, but the reality now was not as “interesting” as it once was) to having a shower chair and hand washing her with face washers.  It began to be too much for one person.

In May she decided that we should get a dog (I know it was more for me to have once she was gone – she was always thinking about me) and so we got our little Archie boy. The next week though, we needed to have her feeding tube inserted so we spent 9 days in hospital. She was still OK to eat at this time as long as I was feeding her, though the food was having to be cut into small bits as swallowing was becoming harder. Her many daily tablets were having to be crushed up and fed with strawberry jam in small doses, so having the tube made giving her her meds soooo much easier. We didn’t resort to feeding via the tube until the end of the year – she was still able to enjoy the tastes of life for the rest of the year thank goodness.

Once back home from the PEG procedure, we worked on getting more equipment. We got a motorised recliner as we found she slept well in that. That was her bed from that point onwards – she never slept in a bed again. We got a motorised chair – so much easier to mover around. Unfortunately the freedom the chair provided wasn’t enough to convince her to go out into the world – we would only ever make a few more trips outside the house. A mobile hoist came to our rescue – I could now lift her by myself from recliner to toilet to bed to chair. It came in very handy the one time I left her alone leaning forwards on the toilet and she decided to keep going forwards onto the bathroom floor! Thankfully I caught her as she was about to hit the ground. I learnt a valuable lesson that day – don’t leave her in a bad position anywhere at anytime!

July saw us finally get some personal assistance – thank God for Steph! She was just what we needed to get through. We quickly developed a daily routine which barely changed from then to the day of her passing nearly a year later. Late in the year we got access to an eyegaze device (think tablet with eye tracking for communication) which while it was rather temperamental was the only way she was able to communicate on her own, as the only other method was manually using a letter chart with her. We even added her synthesised voice to it, which was funny when we’d get it to say swear words, or Go Tigers, or I love you.  It was a shame it was so fussy with her though – I always feel that I never quite had all her thoughts from the point when she could no longer talk. The eyegaze at least let her write some of her thoughts though, and she was able to write her final goodbyes to all using it.

And so it was for basically the final year of her life. Everything was so very much by routine, and so very painful watching the beast take her away from us bit by bit. Thankfully she was able to avoid the worst of it and was able to take control of her life when she decided it was the right time.

I miss you babe. 

Doing it for Nat - 5 days to go!

Doing it for Nat