Hidden symptoms of Parkinson's: Q and A

Claire Stevens, whose husband Kenny has Parkinson’s with Lewy body dementia, which can cause thinking and memory changes:

“When I thrashed Kenny at a game of Scrabble, I knew something was seriously wrong: that had never happened before in our 30-odd years of being married. We shouldn't be afraid to talk about dementia and Parkinson's. We can bring the elephant out of its corner and further into the room if we do it with kindness and sensitivity.”

Emma Edwards, specialist Parkinson’s mental health nurse:

“We know that mental health and physical health are intrinsically linked. I'm sure many of you will know that when you get anxious or stressed, your tremor or dyskinesia might increase, so it's helpful for us as clinicians to find out how your mental health is affecting your Parkinson's.”

Dr Robin Fackrell, Parkinson’s consultant:

“We see patients with tremor, rigidity and all of those movement symptoms, but we can't see anxiety or depression. I can't tell by looking at a patient that he's badly constipated, or having difficulty passing urine, or not sleeping well. But all of those things could be impacting his quality of life even more than his tremor.”

Q and A

Dr Robin Fackrell: Let us know - I've been having this problem. As my medications wear off, I start to really need the loo, or whatever. 

If you raise it as something that you're worried about, I'm worried about it too because it's affecting your quality of life.

Your Parkinson's nurse can advise in between your consultant appointments. And the advisers on the Parkinson's UK helpline can listen and guide you too.

Dr Robin Fackrell: No, is the quick answer! Often we'd like to minimise the number of medications that patients have to take. So say your blood pressure drops when you stand up.

First of all, we normally ask: Are you drinking enough water? If that doesn’t work, we think about salt or caffeine. 

We’ll ask you to put some compression socks on and might also change the medications that you're taking for other conditions. If you've still got a blood pressure drop, then we’ll think about medication.

Emma Edwards: Monitoring your own symptoms is really helpful for us as well to get a bigger picture. 

It’s really helpful for a patient to say: I've been looking at this for the last few weeks and I notice that I get this symptom when this particular thing happens.

Claire Stevens: Kenny has quite significant communication problems and in an appointment with his GP or with the Parkinson's nurse, he needs to feel like it's his appointment. 

But at the same time it's very frustrating if we come away not having explained everything that's going on. 

Typically I would say: Kenny, is it all right if I tell the doctor? Or: Kenny, would you like me to say a bit more about this?

Emma Edwards: The first thing, if you are struggling mentally, is to discuss it. Depression often creeps up on us quite innocuously. 

Contact your Parkinson's nurse if you're struggling and you feel that your mood is really low. It’s so important to tackle it as early as possible.

Dr Robin Fackrell: If you sleep poorly, your resilience the next day is lower. And if that happens over a long period of time, it can start to affect your thinking and movement.

There are many reasons people don't sleep well - it could be anxiety, stiffness, not enough dopamine going in at night… So we need to work out why you're not sleeping and treat that symptom first.

Hear more from the experts at Par-Con 2025 

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