Night terrors and tiny handwriting – symptoms of Parkinson’s disease you may not be aware of

April is Parkinson’s Awareness Month. ‘Awareness’ is important because it is the fastest growing neurological condition in the world, yet there is currently no test to diagnose it and no cure. Parkinson’s UK want more people to take part in their research. They are pushing to deliver a new treatment by the end of 2024, as there have been vital discoveries which have revolutionised the understanding of Parkinson’s and the brain.

Parkinson’s is diagnosed by the symptoms, but by the time the symptoms become obvious, it is usually well advanced.

How to tell if someone may have Parkinson’s

Interview with Domizia Conti, care manager for Home Instead, Chiswick

Domizia Conti, care manager for Home Instead in Chiswick, talked to The Chiswick Calendar about the signs to look out for, as they are so varied they are often missed or mistaken as signs of other illnesses.

People can have Parkinson’s in their thirties and forties, but the signs are often not visible enough to be diagnosed until they are older.

The disease affects the ability of the brain to produce dopamine, which the nervous system uses to send messages between nerve cells. The result is a progressive loss of coordination and movement problems.

Tremors

Parkinson, after whom the condition is named, was not some hapless sufferer who claimed the condition as his own, but the British doctor who first accurately described it in 1817. Before then it was known as the ‘Shaking palsy’, which described the most obvious symptom: tremors, or uncontrollable shaking.

Tremors, a sign of advanced Parkinson’s, make it difficult for people living with the condition to look after themselves, to do basic things such as putting clothes on and feeding themselves. It makes a simple task such as making a cup of tea dangerous.

“Tremors are the best known symptom but they are not the most common symptom” Domizia tells me. “They can be very extreme and can be very frustrating, but in my opinion they are not even the worst.”

Stiffness of the limbs and ‘freezing’

Stiffness of the limbs is what she considers the worst symptom. “It happens without warning, not even at times when you can prepare for it.”

The stiffness can be painful and it is a progressive symptom of the condition. “It means you will take a very long time to get out of a chair. You can find you are not able to stretch properly or not able to move at all.”

Then there is the sudden freezing of the muscles, which is something which comes and goes. One day you are able to walk fine, another you cannot get out of bed.

“You can control that with drugs, which are effective until the last stages of the condition, but Parkinson’s is something which often takes a long time to diagnose and once it is diagnosed it can take a long time to get the right combination and dosage of medication, by trial and error.”

For Domizia and her team at Home Instead this means the requirements of people they look after can change from minute to minute and they have to be flexible. While they operate a 24 hour cancellation policy, so cannot cancel carers at short notice if their clients find they do not need help, if people suddenly find they need more care than they anticipated, Home Instead will provide carers.

“If I can’t get someone else in at short notice, I will do it myself, but in ten years we have never said we can’t help.”

The importance of giving medication on time

The drugs available for Parkinson’s replace the dopamine the body is not making naturally. The dosage has to be timed precisely.

“They can have four lots of medicine during the day, and it has to be taken at the precise time. Twenty minutes makes a big difference. They will freeze and then it takes them a long time to unfreeze. If they are trying to manage their medication themselves, it’s difficult because they will take more medication to unfreeze themselves and are then unsure what dosage to take the next time, so medication management is very important.”

Because the progress of the disease is so unpredictable, families find it hard to deal with.

“Sometimes they get impatient; they say ‘you could do it yesterday, so why can’t you do it today, you are just being lazy.”

Walk the walk but don’t talk the talk at the same time

“If you are caring for someone with Parkinson’s you shouldn’t ask them to do too many things at once” says Domizia. “They can either walk, or talk, but not both. If you are talking to them and expecting them to answer while they are walking, they will fall. We normally chit chat with clients, but we have to be mindful when to shut up.

“The brain has to decide where to send the dopamine – either to the face or to the legs.”

Falling over is a given. An early sign of Parkinson’s is that instead of swinging their arms when they walk, people with the condition will keep their arms down, as the brain is using the dopamine it has available to instruct the legs. It makes it more difficult to balance. Part of the NHS treatment of Parkinson’s is to send patients to a Falls team, to teach them how to fall without hurting themselves badly.

Another thing families can find hard is the lack of facial expression.

“The brain doesn’t send the instruction to the facial muscles, so it’s like having Botox.”

Night terrors

“One terrible symptom is night terrors” says Domizia. “They are extremely vivid. People are very confused when they wake up as to whether the situation they dreamed is real or not and they wake up in a pool of sweat. They are scared.”

She gave the example of one of her clients:

“A 92 year old whose brain was so sharp, she was one of the first women to qualify as an accountant in the UK and she had no dementia [a condition often associated with Parkinson’s].

“I got a phone call from the police at 5am because she had rung them to say she was stuck on the roof and she was terrified, literally scared for her life. It took two or three hours to calm her down and for her to realise it was her Parkinson’s making her think that.”

Tiny handwriting

Speech impairment is a common problem as the condition progresses, and the ability to find the right words, but another, less known and quite bizarre symptom is tiny handwriting.

“It’s associated with the tremors. Their handwriting gets so tiny it’s impossible to read it.”

Parkinson’s is such a complex problem, caring for someone with it can make families really frustrated, says Domizia. Home Instead provide trained carers for a minimum of four hours a week.

“If they come in for an hour in the morning and an hour in the evening that may be all they need for a couple of years, but then we will notice that their food has remained in the fridge because they haven’t been able to get it out, or they haven’t got to the toilet in time. You notice the condition is progressing and things can change pretty quickly.

“Sometimes families feel they have failed if they ask for help, but it is very different to manage Parkinson’s when you have other calls on your time and the most important thing we want people to know is that there is help available.”

Home Instead is the biggest provider of home care in the UK. Its Chiswick office covers Chiswick, Hammersmith, Acton, Shepherd’s Bush, West Kensington, Baron’s Court, part of Fulham and part of Ealing.

homeinstead.co.uk/hammersmith-chiswick

This page is paid for by Home Instead. Photographs courtesy of Home Instead.

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