Baby steps not backward steps By Matt Picone

On the morning of Friday 21st of June 2019, I returned home from the surgeon’s office and took my migraine medication. I’d had a migraine for 12 days straight.  I had checked with my GP, been to Emergency twice and had a CT and a couple of MRI scans. Nothing indicated stroke and because I was so young and fit, none of the health professionals who saw me thought it a likely diagnosis. It was mentioned, but only in context of the things they like to rule out.

I set myself up on the couch to watch some telly and had a bit of a chat via text with Ellie, my fiancée. The salon where she works had an early closing that day due to a planned power cut and I was trying to encourage her to go out and enjoy some all too rare “me time”.

I felt dozy and lay on the couch for a nap. I think I was going in and out of consciousness for about 30 minutes before I properly roused myself and managed to sit up.

I’m sure her continued attempts at conversation were the reason I kept partially waking. I tried a few times to get my phone from my pocket but could not free myself from underneath the blanket. I was confused as to why it was suddenly so heavy, not realising yet I had lost control of the left side of my body. When I did finally sit up, my left side was dead weight and I fell to the floor. I dropped the phone and it fell where my feet lay. As I struggled back around to reach it, I had a pretty good idea of what was unfolding. I swiped on the missed calls and reached Ellie. 

She was home within 10 minutes and called the ambulance immediately. By now we both suspected a stroke but neither wanted to panic the other. Ellie held and reassured me before manoeuvring me to the recovery position when I lost consciousness again.

When the paramedics arrived, they performed a quick assessment, stabilised and rushed me straight to Royal Hobart Hospital. 

I was feeling pretty optimistic by this stage, I was conscious, under care and believed the worst to be behind me, all that waited would be planning for recovery I figured.

Another CT was performed, and it confirmed a double carotid dissection with a clot lodged in the right side of my brain. The neurologist said only a small area of the brain was affected, I breathed a sigh of relief before he said “but”.

A large area of my brain was at serious risk. “F#$k” I thought. I believed I’d done all the hard work already. I hadn’t saved anything to fight further complications. I’d made the seemingly Herculean effort required to raise the alarm and stay awake to welcome Ellie home so she’d not be panicked (more than necessary) when she found me. The panic sent me into shock and I lost consciousness again.

I came to surrounded by emergency staff; I could hear one sobbing and struggled to see who it was. Why was this doctor so moved? I finally moved enough to bring her into my field of vision and realised it was no doctor but Ellie. With renewed determination, I concentrated on her and our daughter’s faces in my mind.
I thought about our second baby, due in October. I willed my body to accept the medicine, to get me through to Saturday. If I could make it overnight, I was sure I’d have it in the bag.

The neurology team had administered thrombolytic medication and plans were made to fly me to Melbourne, and I was airlifted at about 9:30pm to Royal Melbourne Hospital (RMH) in case clot retrieval or a stent implant were required.

I was in the RMH Stroke Unit for 10 days, and since returning to Hobart, I have been attending the community rehabilitation unit for speech pathology, physiotherapy and occupational therapy. 

Initially I had trouble with both speech and swallowing. I had to be assisted to stand and walk. Now it’s really only my speech that needs work. My left vocal fold is paralysed so I’m quieter than I used to be and I’ve lost a lot of the expression my voice used to be able to carry. I noticed little improvement at first but Kate; my pathologist keeps recording my voice’s progress and hearing it played back motivates me to keep pushing for further recovery.

While in hospital, I decided I wanted to enter the Point to Pinnacle in Hobart in November. It’s a half marathon run or walk from Wrest Point Casino to the summit of kunanyi/Mt Wellington. I knew racing it wouldn’t be an option, so contacted the organisers and they agreed I could stage my entry over multiple days. I was determined that even if it meant 21 one kilometre walks, I’d get there.

I’m well aware my treatment hasn’t come cheaply, stays in two hospitals and flights by air ambulance to Melbourne and back as well as the ongoing therapies, scans and specialist consultations quickly add up. Throughout the event, I kept seeing resources provided by the Stroke Foundation. These provisions, combined with their commitment to research and prevention, made them an easy choice as a means to channel something back.  

Walking has proved highly beneficial to my recovery so far. Being out on the fresh air with my thoughts running free lets all the fear and pain drift away. I settle into a happy groove and just tick away. I’m up to 9km on a good day and now hope to complete the event in two halves. While other activities are quickly tiring, walking seems to restore my energy.

Generally, I still fatigue easily, my sense of taste is altered and I banged my left shoulder up pretty convincingly. Physiotherapy is retraining the muscles around the shoulder joint to support my arm properly. It’s a strange beast, I think I have about 99% of my old strength but even raising my empty hand the wrong way (or any way on a bad day), it hurts like hell.

 I am really looking forward to the day chocolate and caramel taste normal again. 

There was a lot of fear early on, especially when I first left hospital and when I had my first encounter with stressful news. I’m changed, right down to the fact that blood to my brain travels a different path as lesser arteries make up the shortfall in capacity of others. When my heart rate or blood pressure increase, I can hear my pulse chugging away like a washing machine. If I’m stressing, it thunders past my left eardrum.  At first it was cause for concern, now it’s a reassurance. I’m still here, my heart beats strongly and my body found ways to keep my brain supplied.

Now that the fear and sadness have subsided, really I’m just grateful. 

Grateful there is a future I get to share with my fiancée, our daughter and keenly anticipated baby. 

Grateful for my doctors who took me seriously, even though no signs of a dangerous problem were evident across multiple scans for two weeks.

Grateful for the paramedics, flight crews and the treating teams at Royal Melbourne and Hobart Hospitals and the Community Rehabilitation Unit. Their care, professionalism and humanity are boundless.

Grateful for our extended family at home in Tassie, who looked after our 4-year-old daughter Harriette, while Ellie and I were in Melbourne. I said goodbye to her one morning then disappeared. It gutted me to think we might have had our last goodbyes, but I am glad that Harriette didn’t see me at my worst. Since regaining the confidence that Daddy’s not going anywhere again, she talks of her time away from us as her holiday with her cousins.

I am grateful to my Dad who dropped everything to be by Ellie’s side from the ER to Melbourne and back and for my friends who gave up their days for my “buddy roster” after Ellie returned to work. Learning to trust my body again has been a tricky process for Ellie and myself, having such a generous group around me made that period infinitely easier.

Not least of all, I am grateful to Samuel Johnson for looking behind a joke on his page, learning my story and sharing it.  The generosity of the Love Your Sister Villagers transformed our efforts in a day. We have now raised over $13,000 dollars to help others face life after stroke. 

Our mantra in the hospital was “baby steps not backward steps”, now we’re rocking the hashtag #21kfor21k and hoping that’s just the beginning!

Cheers, Matt.