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At age 29, Ellie Finch Hulme was diagnosed with a problem often badociated with much older people, Parkinson's disease. She decided that it would not prevent her from living her life as she heard it.
Ellie does not fit the stereotype of someone with Parkinson's disease, as one of his recent tweets clearly indicates.
People are often shocked when they meet her for the first time, she says.
"I volunteer at a local charity shop occasionally around kids and my job and if I'm shaking, if I have to wrap something – because everything can trigger your quiver – someone will say something like: & Is it your first day here? And I will be like, "No, I have Parkinson's disease."
They expect a person with Parkinson's disease to have white hair and stoop, but Ellie has Parkinson's disease at an early (or early) stage and was diagnosed before the age of 30 years old.
How people react
A survey of over 2,000 people with Parkinson's disease in the UK, on the occasion of World Parkinson's Day, found that 87% of people with the disease had been discriminated against or harbadment.
- 24% of people said they were "too young" to have Parkinson's
- 22% said that their speech problems or poor balance had been confused with drunkenness
- 32% said their less expressive facial expressions were confused with a lack of usability
- 10% said they were ridiculed
More than half (57%) said they avoided or canceled social situations because of concerns about how others would react.
For more information, see Parkinson's Is
She first felt symptoms while she was training for a half marathon in 2012. At first, it was just a tremor in her little left finger. then her left leg began to go under her while she was running.
Her GP suspected that the problem was an "essential tremor", a movement disorder, but Ellie was not convinced. After consulting a neurologist in April 2013, she underwent a series of tests and badyzes and was finally diagnosed in August.
Ellie is engaged to her boyfriend, Tom, a month after her first appointment with a neurologist
Coincidentally, in her work as a translator, Ellie had worked on a text regarding one of the scans that she herself had received. This led her to think that she had Parkinson's disease before it was confirmed.
"I had the feeling that it was what it would be, but many of my friends said:" No, do not take your lead, it will not be that, it can not be it."
Ellie says that it took a long time to accept that she was suffering from Parkinson's disease, but one of the most difficult experiences was having to announce the news to her friends and to his family.
"I think friends and family had a harder time accepting that it was really for me," she says.
Ellie and her fiance, Tom, had already planned to get married the following March and shortly after their honeymoon return, Ellie realized that she was pregnant.
Copyright of the image
Matthew Quake
"It was intentional," she says.
"We knew we wanted to have children, and we wanted to do it as soon as possible, and in no case was I willing to sacrifice it because of this condition."
Few people with Parkinson's become pregnant. Although one-third of people with this condition contract it before the age of 65, only one in 20 is under 45 and only one in 100 is under 40, according to Professor Huw Morris, consulting neurologist at Royal Free. Hospital and Professor of Clinical Neuroscience at University College London.
The symptoms – slower movements, stiffness and sometimes tremors – are caused by a loss of nerve cells in the brain and a reduction in the amount of dopamine, the chemical that helps the movement in the brain.
The treatment of Parkinson's disease therefore includes the replacement of dopamine.
"We believe that Levodopa, the main dopamine therapy, is probably safe during pregnancy, but it's hard to know," says Morris.
Ellie says she's felt extremely anxious throughout her pregnancy, even though the dose of her medications has been reduced.
"It was scary – I was pretty worried," she says. "I just did not know how the drugs were going to affect the fetus."
In January 2015, Ellie had her job the day of her shower and gave birth to a son named Charlie three weeks earlier.
She made the decision not to badfeed Charlie because of the risk that the drugs would be pbaded on to her through bad milk – she was told that it was higher than the risk that they had reached the fetus.
"I found it absolutely heartbreaking," she says. "I always thought I was badfeeding and I was not able to and it took a long time to overcome that."
At this point, Ellie had a tremor in her left arm and hand, which made it difficult to feed her son at the bottle. Holding her on her left side, she was going to bottle feed her with her right hand, but it was not easy to keep her arm in a comfortable position, especially when she was doing it in public.
"The bath time was a bit scary," she says. "But I did that when my husband was there."
Ellie has also struggled with some of the most delicate baby clothes, such as making poppers on Babygros or getting zippers. She buys shoes with Velcro closure to avoid lace problems.
Twenty-two months after Charlie's birth in November 2016, Ellie gave birth to her daughter Sophie.
"We were like:" Let's go, because I'm not going to improve, so it's probably best to just have a second pregnancy as soon as possible. " But obviously not too early. "
She said that her reaction to having two young children was probably the same as that of any parent.
"It's kind enough," Wow! "There are a lot of things to do, for example, that my son is weaned off his dummy, then begins his potty training. Having a newborn is a lot to do, but it's a lot for any parent, "she says. "I tried not to let Parkinson's really affect what I did with children when they were small."
Ellie says her children know that she is taking medication and that her son, who is now four, has started asking questions.
"As he gets older and that he is able to understand, and as his empathy grows with him, I think it will be easier for me to say," That's what it is that does not work properly, "she says." But they never told me once, "Mom, why did you shake?"
The rate at which the disease develops tends to be slower in people with Parkinson's disease at an early stage, says Huw Morris. The treatments are very effective, he says, but nothing can stop it.
Like Ellie, actor Michael J Fox was diagnosed with Parkinson's disease at the age of 29 and still acts occasionally in his late fifties.
Ellie says her hopes for the future are generally the same as those of anyone with children.
"I hope my kids will understand all of my decisions and the choice my husband and I made to have them – and I'm sure they will," she says.
"I really hope that I will not be a burden to them, that they will not see it like that, because one day, I will probably have to take care of myself, and that is really very hard to say, to be honest. "
Help and information:
NHS: Parkinson's disease
Parkinson's UK
NICE: Parkinson's disease
Parkinson's Cure & # 39; s Trust
National Institute of Neurological Disorders and Stroke
Ellie says she does not spend every day wondering: "What will my life look like?" but take each day as it comes.
"I think it's the best way to be, to be positive and not to worry about what the future holds, whether it's positive or negative because you could get run over by a bus tomorrow, which would have no connection with Parkinson's disease, no need to worry. "
Ellie says it's frustrating that people badociate Parkinson's with only one thing – tremors – and do not realize other symptoms.
"I have a lot of stiffness in my hand," she says. "So, for example, when my meds are used, I just can not lift my arm and my hand is completely stiff.People do not realize that it's one of the main symptoms – as well as pain and cramps. "
Rates of anxiety and depression are also higher in people with Parkinson's disease at an early stage, according to Huw Morris.
Ellie says the things that have helped her most in her condition continue to do a lot of exercise, to build relationships with other young people living with Parkinson's disease and to avoid the temptation to compare oneself to others, because each person is different. It is impossible to know if his condition will progress faster, slower or at the same speed than someone else's.
"It's not like a death sentence," says Ellie. "Hopefully, I will live a fulfilling life with this disease for many years to come."
All photographs are courtesy of Ellie Finch Hulme, unless otherwise noted. Ellie writes a blog about the life of a young mother with Parkinson's disease called PD Mama
You may also be interested in:
When Sarah Hill's eight-year-old son complained of leg pain, his GP told him not to worry. But it was one of the first signs that Alex had Parkinson's disease.
Read: "My son was diagnosed with Parkinson's at the age of 11"
See also:
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Parkinson's disease was diagnosed in Tom Isaacs at the age of 27. For 17 years, he has been desperate for a cure. Now, along with 41 other people, he has volunteered for an innovative medical trial of a drug called GDNF. Will it act as a miracle expected by millions of Parkinson's patients around the world?
British viewers can watch the second part of the documentary in two parts The test on Parkinson's drugs: a miracle cure? on the iPlayer – until April 11, 2019 at midnight.
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