In lockdown, my partner was diagnosed with Pakinson’s Disease (PD) and that would be properly gutting, if another friend hadn’t been diagnosed with motor neurone disease at around the same time.

The peculiar thing about ageing is that there’s always someone else in a worse situation, and whilst that doesn’t make our own individual situation better, it does make it more difficult to complain, at least out loud. Motor neurone is seriously unpleasant with a short prognosis, limited life expectancy and a rapid physical decline. The woman we know has gone from full out athleticism to unable to eat or drink, slurring words in speech and now struggling to walk, all within six months. She will die soon.

Finding out that your husband has PD is bad, but not that bad. It won’t kill him (probably). It will be the shape of his old age.

What does that mean?

The PD journey is very individual, dependent in part on how deep you have dug the well of health to start with and how well you have nurtured good habits and health.

Almost everyone diagnosed has had the disease for a good ten to fifteen years before they’re diagnosed, with the weirdest possible symptom, a lack of sense of smell, arriving early in our experience. I’d been pushing for a doctor’s visit and diagnosis for a couple of years, spurred on by a seemingly gradual increase in frailty and a decline in small motor skills (crabby handwriting) but it wasn’t until lockdown that he decided to follow through on it. He’d also managed to push through the pension administration hoops and retired. Having pushed for a diagnosis, I was still gutted when it arrived.

He’s very early on in terms of symptoms and medication. He has occasional light tremors in his hands (not all do) which makes fine work with his hands more difficult. He plays tennis twice a week, has a session once a week of Pilates and another of tai-chi. The tennis is good for his cardio-vascular system and gives him lots of balance practice (lots of chop and change of direction and balance). There is strong evidence that people who work out two to three times a week have a more gentle progression of the disease. The Pilates should be good for his core strength. The tai-chi should be good for his balance and if the worst comes to the worst, should help him fall well. There is some soft evidence that people with PD who practice tai chi fall less or at least feel less at risk.

Having been put on an initial medicine, his tennis coach noticed a large difference in his physical rigidity, but the rest of us really didn’t see much everyday change.

Parkinson’s Disease cannot be cured.

When someone tells you that they have an incurable disease, do not immediately google the disease and come up with helpful new treatments. Just don’t. You will never have the expertise of people living with the problem so it just isn’t helpful. Treatments for the disease are largely centred on managing the symptoms for as long as possible whilst mitigating the side-effects of those drugs taken over the long term.

PD is a gradually progressive neurodegenerative condition. The etiology and pathogenesis remain incompletely understood. The movement disorder of PD occurs largely due to the selective loss of neurons in the substantia nigra pars compacta, with consequent depletion of dopamine in the striatum. The drugs work using a number of different methods, by being metabolized to create dopamine, or by activating the dopamine receptor in the brain, or by preventing the breakdown of endogenous dopamine. Currently my partner is being dosed with selegiline, a drug that helps prevent the breakdown of his own dopamine.

Dopamine is the happy drug in the body. It’s part of the fight or flight response as well. As a result, when the process to create and use dopamine is interrupted as with PD, the physical results can (and in our case do) include anxiety and/or depression.

My partner is routinely anxious. All day, everyday. Nothing is too trivial to worry about.

And anxiety is tiring. He’s lost weight.

My partner is also routinely glum. All day, everyday.

It’s wearing.

I have spent most of my adult life caring for my children. I had expected to have maybe a decade or so of freedom before finding myself caring for my older husband.

It’s difficult to express how very angry the diagnosis has left me feeling and almost impossible to share the frustration living with this disease second hand. My life feels wrecked, though it’s not my illness. It feels as though I’m left carrying the burden of it because he cannot, physically or mentally.

This will be the shape of our old age.