Ten Years On (And Off)

Our CEO reflects on a decade since her diagnosis.

One YOPDer’s reflection on a decade of dopamine depreciation.

IN the last ten years I have thrown around 22 000 pills down my throat… an average of six a day (currently on 11 a day), mostly pale pink. In prescription charges that has cost me over a grand – even using an NHS discount payment card. My earnings have, in the meantime, plummeted – hitting an all-time desperate low during lockdown as I waited for someone with very limited knowledge of Young Onset Parkinson’s to ask me how long it takes me to peel a carrot. The question all the more bizarre – following on from ‘had I ever considered taking an overdose’.

I can’t remember how I answered the carrot question. I had not warmed to my telephone interrogator and suspect I made a snippy comment about having better things to do than prepare root veg or time myself doing it. In hindsight I realise the correct answer would be ‘how big is the carrot?’

I answered ‘no’ to the overdose question – although I had considered it pre-diagnosis. Depression, apathy and insomnia are prodromal symptoms of YOPD – meaning they are often the advance party pre-diagnosis.

By the time I was diagnosed I hadn’t had a good night’s sleep for four years. I had sleeping pills but my GP had been very clear on instructions to use them sparingly.

I had also been put on antidepressants a few months earlier but they had never kicked in. I had non-Parkie friends on the same prescription so was aware of the expected timeframe of when I could expect to feel better.

I understand that some YOPDers did and do find them effective even many years post diagnosis. But that’s one thing we know for sure, there is very little consistency to this condition. What works for one may not work for another. “Suck it and see”… or perhaps “swallow it and see”… is the trial and error approach many of us follow.

Parkinson’s has rightly been dubbed ‘the most complicated neurological condition’.

To have the young onset syndrome you are more likely still to be misunderstood, misdiagnosed and misrepresented – it can take years to reach a correct YOPD diagnosis.

Many see their doctor again and again, each time with a different symptom, some invisible like anxiety and insomnia, others more obvious like frozen shoulder or an occasional limp.

It’s a variable condition with motor and non-motor symptoms that come and go throughout the day. The lucky ones, correctly diagnosed, will respond well to the gold standard treatment of l-dopa for the first few years – the honeymoon period. Typically this will last perhaps seven years until the law of diminishing returns causes all kinds of problems.

On an increasing number of pills taken more frequently, perhaps four or five times a day, you spend more of your day ‘wearing off’ or waiting for some ‘on’ time.

‘On’ and ‘off’ is shorthand – understood by patient and neurologist alike. ‘On’ being able to operate as close to ‘normal’ as the meds will allow. ‘Off’ being when the meds aren’t working or are yet to kick in.

There’s a temptation to say ‘on a good day’ but there are very few good days. It’s more good hours and minutes or ‘good dosing windows’. There’s a phrase that stands little chance of catching on.

These dosing windows are – in my case – every four hours. To get the best out of the day, I take my meds at 8am, 12 noon, 4pm and 8pm. A dose takes 40 minutes to kick in, last about three and a half hours before I feel some wearing off signs.

How well these meds work at any one time is impacted on by many factors including gut absorption, sleep, stress, exercise, diet and avoiding protein an hour either side of taking these meds.

Just to recap, I take my meds at breakfast time, lunch time, tea time and dinner time – but try to avoid eating at these times. Or certainly avoid protein…because basically it stops the pills from working.

Other symptoms include anxiety, fatigue, sleep issues and the ever so sexy and hugely inconvenient bladder and bowel issues.

Anyhow, that’s probably enough to put anyone off their protein-laden breakfast. Suffice to say there are some 40 identified symptoms of YOPD, including pain. Oh, and 30 percent – including me – never really have a tremor.

Sounds like a monumental arse ache I know – to mention the one symptom we don’t get (I wait to be corrected).

So what’s the solution – given when I was diagnosed we were told there would be a cure in five years.

Well that’s a subject for another blog.


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Portrait of man at home, sitting on a comfy chair, leaning forward and smiling