Felled and frozen by a dog bone – we move on…to downstairs!

This is a title I never anticipated writing but that seems true most days these days.

When it was first suggested renovating the downstairs, I resisted – not just practically, but mentally. Deep down, I didn’t want to admit I needed it. Accepting that change felt like acknowledging a new stage in my condition, and that was hard. But now, as the project nears completion – thanks to my wife’s determination and the support of friends -I can finally start using the spare bedroom and new bathroom (whilst the new bedroom is almost finished). The timing couldn’t have been better, because the stairs have become a constant risk: sometimes easy, sometimes tricky, sometimes made worse by taking them too simply without due care, and at other times almost unsurmountable.

Freeze/F.O.G: Lessons from the Unexpected

Over the past few years, I’ve had my share of freezing episodes. For a while, they took a back seat to other challenges – falls, choking, and the slow shuffle of my movements. But recently, freezing has made a dramatic comeback. The last few days have been especially noticeable.

Yesterday, I had two freezing episodes – one before and one after a fall. The first was almost surreal: I was heading to the sofa, stepped right onto my dog’s new bone, and froze mid-stride. There I stood, foot planted, unable to move for probably only a second or two, until gravity and my balance issues took over and I tumbled to the floor in front of my mum, sister, aunt, and dog. It was at least graceful and again thankfully without injury as the floor was clear (although my mum took a tiny bit of the collateral damage of bits of furniture flying). What followed wasn’t laughter in the joyful sense, but a nervous laugh that comes when everyone is trying to mask concern.

Later, as I sat on the floor to recover – yogurt and spoon still in hand -I froze again for a couple of minutes. I was 100% conscious, 100% aware of my family and friends around me trying not to panic, but completely unable to respond or move a single limb, even as the spoon and new anti-choke diet best friend (a.k.a. Yogurt) were removed from me. It’s a strange feeling, but I’ve learned to accept it as part of my journey.

Today, feeling more than a bit weak, I froze again while chatting with people. They gently led me to a chair, where I remained frozen for the longest stretch yet – at least five minutes. Eventually, I came around, had a good nap, and felt much better and still do. It’s clear that it’s time to start using the downstairs space my wife worked so hard to create. It is also clear I need to start using the wheelchair to get around more inside now.

Adapting and Moving Forward

It feels like I’ve reached a new chapter, but we’re ready. We’re starting the process of finding a carer and almost finished making the practical changes to keep life running smoothly. Another piece of the armoury arrived today – a choking rescue device – because choking has been another real risk. These steps aren’t easy, but they make life safer and give us some peace of mind.

I could dwell on disappointment, but I’m choosing to focus on the positives. Watching my wife’s determination – and knowing I have her unwavering support – reminds me that I’m never facing this alone. My kids, sis, mother and friends are with me. Even my dog seems to know when I need a little extra comfort (or comic relief).

There are tough moments, especially seeing loved ones worry. But I’m learning to accept help, find strength in shared laughter, and celebrate small victories – like a successful move downstairs or a peaceful nap after a challenging day.

Freezing of Gait (FOG): A Quick Guide

What Is FOG?
A sudden, brief inability to move forward despite intending to walk—feet feel “glued” to the ground. Episodes usually last seconds but can extend longer.

FOG in Progressive Supranuclear Palsy (PSP)

Freezing of gait occurs in approaching 50% of PSP patients, often early in the disease. Unlike Parkinson’s disease, where freezing can respond to dopaminergic medication, FOG in PSP rarely improves with levodopa and is typically accompanied by pronounced postural instability, early backward falls, and eye movement difficulties. These differences make PSP-related freezing more resistant to drug therapy and more reliant on physiotherapy and assistive devices.

Looking Ahead

It is clearly not the best journey but I take it armed with the best team and as absurdity makes me laugh I am so rich in material – felled by a dog bone. Each day brings new challenges, but also new reasons to smile. With my team by my side, I’m gearing up for whatever comes next. The journey isn’t always easy, but it’s filled with love, laughter, and hope – and that makes all the difference.

Bottom line – the day has ended much better than the start and I have bounced back.