Parkinson’s - what it is like to live with and know what the symptoms are
Parkinson’s is the fastest growing neurological condition in the world and there is currently no cure.
In the UK in 2020 there were 145,000 people living with the condition, according to estimates from charity Parkinson’s UK.
The three main symptoms of Parkinson’s are tremor, stiffness and slowness of movement.
Sheila Richardson, 83, lives in Bexhill and was diagnosed five and a half years ago.
She said: “Everyone who gets it is different. Symptoms are many and varied. They include mobility problems, swallowing problems, hallucination, balance causing falls, anxiety and memory problems.
“None of these happens to everyone as everyone’s journey is different.
“In my case it is my mobility which is most affected, going from being very physically active to becoming more dependent is hard to deal with. It is progressive which means I am deteriorating all the time now.
“Slowly it chips away at the person who can no longer be as they were.”
Sheila is a member of the Bexhill, Hastings and Rother Parkinson’s group, which supports people with the condition and their families.
She said: “We have been unable to meet for over a year due to government restrictions. There are nine committee members who have met regularly via Zoom during this time.
“Some of the committee have Parkinson’s, some care for partners with it , others have lost partners for whom they cared.”
Geoff and Kathy Wheeler have been members of the group for four and a half years when Geoff was diagnosed aged 65.
Kathy said: “Looking back now we saw possible signs 15 years previous with anxiety on writing his signature which continued to manifest into illegible handwriting by 2016.
“The signs were beginning to unfold be it slight but tangible enough to know something was amiss.
“A noticeable hand tremor, lack of movement of his right arm, stooped posture, shuffling of gait and a noticeable slowness in movement for a man of his age. Four years on all this is now affecting his balance.”
There are more than 40 potential symptoms of Parkinson’s, and it affects each person differently.
People are more familiar with the physical symptoms of the tremors, the stiffness and slowness of movement, but people with the condition can also experience other symptoms like problems with sleep and memory and mental health issues.
For someone with Parkinson’s everyday tasks become harder as a person’s mobility slows down.
Valerie Box, 73 from Fernhurst, West Sussex was diagnosed in 2015.
Her mother had Parkinson’s and when Valerie started to have tremors in her right arm she visited the doctor. She was told to come back in six months to see if it was a essential tremor or Parkinson’s.
She said: “I was devastated when I got my diagnosis.
“I would say to anyone who thinks they could have it go and see your GP.
“Once diagnosed you will be disappointed and probably go into denial for about a year or so but try to get over that quickly and access the support of your local Parkinson’s charity branch, they are a great.”
During the Covid pandemic many of the support groups have had to move online but its support is vital to those that access it.
Valerie said: “The support you get from the local branch is invaluable as you can talk to people who have the condition.”
At the moment there is no cure for Parkinson’s, as further research is needed, this is something the charity uses donations for.
Kathy said: “There is no known cure but only with making awareness of how it affects people’s everyday lives do we hope for a breakthrough.”
The three main treatments to help manage Parkinson’s are medication, exercise and therapies.
Valerie said: “We hold a warrior exercise class which has been shown to slow down the progression which no drug can do.
“We also have a choir which is great for facial mobility.”
The condition develops when nerve cells that are responsible for producing a chemical called dopamine die.
Dopamine allows messages to be sent to the parts of the brain that coordinate movement. With the loss of dopamine-producing nerve cells, these parts of the brain are unable to work normally, causing symptoms of Parkinson’s to appear.
Charity Parkinson’s UK states that one in 37 people alive today will be diagnosed with the condition in their lifetime.
With population growth and ageing, this is likely to increase by a fifth, to around 172,000 people in the UK, by 2030.
Julie White, 72, lives in Ninfield. She also attends the Bexhill, Hastings and Rother Parkinson’s group.
She said: “It affects all parts of your body inside and out but people only see the tremor and think if you haven’t got that you can’t be that bad. Far from the truth.
“As it progresses it affects more parts of your body , too many to list here.
“It’s important to raise awareness because sufferers can feel quite poorly when out and about but it doesn’t show.
“Some symptoms give the impression that the person is drunk, a common misconception.
“We need to educate more people about this quiet but very common condition.”
Parkinson’s UK says that every hour two more people are diagnosed that’s the same as 18,000 people every year.
The number of people with Parkinson’s under the age of 50 is 1,752, 1.2 per cent of people with a diagnosis of Parkinson’s are under the age of 50.
The number of people aged 50 to 59 with the condition is 8,889; the largest number of people with the condition is aged 70 to 79 years old - 60,083.
And more men than women get Parkinson’s.
The charity says: “We don’t know why men are more likely to develop the condition than women, but it may be due to a combination of biological factors (such as hormones or genetics) and lifestyle factors (such as exposure to chemicals).”
As well as the national charity there is also a number of local support groups.
Valerie said: “Local fund raising manager Leigh Beth Stroud ([email protected]) can arrange for a speaker to talk to any club or group who would like to know more about the condition.
“It is not a terminal diagnosis, you don’t die of Parkinson’s you die with it and I think people need to realise that.”
For more information on the charity, visit parkinsons.org.uk where you can also find information about local support.