“That you can be you – and still fight this beast everyday – makes you a giant”
Author: Audrey NoblePublished: 2 June 2016
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In the run-up to Carer’s Week in the UK (6-12 June), carer Audrey Noble writes movingly about the effect her husband’s Parkinson’s diagnosis had on their family – and shares a letter she wrote in praise of his courage, in the hope that she can raise public awareness of the impact of the condition on patients, carers and relatives
Marc’s passion is golf. He plays at a high level and his handicap is four. He has always been very fit, training at the gym most of his adult life, lifting quite serious weights.
But during 2009, Marc developed a stammer and became more anxious and withdrawn. He eventually saw his GP, who referred him to a neurologist and had a CT scan. He was told there was some ‘slight right-sided weakness’ but that there was no reason for these symptoms and that nothing was really wrong.
Marc and wife Audrey
Marc continued to withdraw into himself; he became very obsessed with a number of things, mainly to do with the children and their health, cleanliness and control of money. He slowed down a lot and lost interest in his golf – only when questioned later did he admit it was because he couldn’t play well and therefore didn’t want to play at all.
“Marc was terrified of being an embarrassment to the children; he didn’t want anyone to know he had Parkinson’s”
Around this time my parents were very unwell and died. To be honest, I thought a lot of Marc’s symptoms were depression due to these deaths in the family and urged him to go to his GP, but he refused. The strain on our marriage and relationship was awful – we all felt we were ‘walking on eggshells’. I felt I had to protect the younger kids (who were only 3 and 8 at the time) from his black moods and daily life was a battle, we argued and came close to splitting up many times.
Marc and his two sons
Marc could not understand why he felt this way, that he could not feel happy about anything, even though he was very lucky to have healthy children and, a wife who loved him.
Eventually he went back to the GP as I gave him an ultimatum and was referred again to neurology. In July 2013 Marc attended the appointment and was told he had Parkinson’s disease. Marc came out the appointment and the first thing he said before breaking down was, “Am I going to die?”. He had not heard anything the clinician had said after being told he had Parkinson’s. Marc was terrified of being an embarrassment to the children; he didn’t want anyone to know he had the condition. He was terrified. We talked for hours when he came home.
“We don’t really talk about the future too much as we live for today”
Knowledge is very powerful, I advised Marc not to look on the internet for information on Parkinson’s and he was happy for me to provide him with information I was able to access through work (at pharmaceutical company UCB).
After seven weeks Marc was referred to a Parkinson’s disease nurse specialist (PDNS). Within three days of starting on treatment Marc could tie his shoelaces properly for the first time in two years and shave both sides of his face. He rejoined a gym and by the end of the first week of training, could smell the freshly cut grass and my perfume for the first time in years.
“Marc’s golf handicap has improved since diagnosis and treatment and he continues to play at least twice a week”
Marc was back to being the man I married. He was happy, singing in the car, laughing with the children – everyone noticed the difference.
Marc’s golf handicap has improved since diagnosis and treatment and he continues to play at least twice a week.
Marc Blore playing golf
There have been bumps along the way but we work through them – we don’t really talk about the future too much as we live for today. We adjust our day depending on how things are – our lives are quieter for sure but we are now much closer.
All the kids know that Marc has Parkinson’s. The two youngest know that the condition makes their dad tired which means he needs to go for a nap and that his legs can jerk and at night he might shout out. But they are growing up with it so it isn’t a big thing, that’s the way we will keep it for as long as we can.
“He was happy, singing in the car, laughing with the children – everyone noticed the difference.”
I wrote this open letter and shared it with other Parkinson’s patients we know to help them understand how I feel.
“To my husband,
I see in your eyes the worry, each time your Parkinson’s is discussed, either at your appointments or with friends, the worry that somehow you are somewhat diminished in my eyes, that this beast called Parkinson’s has taken some of you away in my heart and my mind.
I tell you, my husband, my best friend, my rock, that it is the opposite. Look into my eyes each time we visit a specialist or discuss this beast with friends or family and you will see that instead of diminished, you are magnified, like a superhero.
You are the man our sons want to grow up to be like, you are the man our daughter will look for in her future husband one day and you are the man I want to grow old with.
You are the only one who makes us all feel safe and protected. Still.
That you can be you and everything to us and still fight this beast everyday makes you a giant.”
Audrey, Marc and children celebrating a 50th birthday party
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Regular exercise may slow progression of early Parkinson’s disease symptoms
A research team in Japan has suggested that around four hours of weekly moderate exercise is associated with a better clinical course of early-stage Parkinson’s. Their study, published in ‘Neurology’, drew on data from 237 people with the condition, whose symptoms were monitored over a period of up to six years. The research showed that people who were regularly active for at least one to two hours, one or two days a week, were better able to maintain daily activities than those who exercised less – and even experienced a “slower deterioration of processing speed”. The researchers highlighted that these benefits stemmed from maintaining regular exercise over time, rather than levels of activity at the onset of the condition. They added that their findings “suggest it may never be too late for someone with Parkinson’s to start an exercise programme”.
Could traumatic brain injury accelerate the onset of Parkinson’s disease?
Undergoing a traumatic brain injury (TBI) – a sudden injury that damages the brain – may be linked to Parkinson’s onset at an earlier age, new research suggests. The study, led by researchers in the US, examined data from the National Alzheimer’s Coordinating Centre (NACC) database and assessed whether TBI was associated with age of disease onset, survival and the degeneration of dopamine-producing nerve cells in the brain. They found that while there was no significant association with age of death or greater impact on dopamine-producing nerve cells, results showed that TBI was linked to a 4.9-year earlier age of Parkinson’s onset. Reflecting on the results, the researchers wrote that traumatic brain injury “appears to accelerate Parkinson’s onset without altering age of death”. However, the researchers also cautioned that “the nature of this relationship remains unclear”.
NASA astronaut who lived with Parkinson’s disease has died
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