Parkinson’s and end-of-life: “I’m not afraid of dying”
Author: Saskia MairPublished: 13 February 2020
Prep: Cook: Serves:
We hear from Eleonor Högström, president of the Swedish Parkinson’s Disease Association and a former nurse, about making end-of-life preparations while living with Parkinson’s, why she’s “not afraid of dying” – and the importance of finding someone to talk with
Hi Eleonor. Can you tell our readers a bit about yourself?
I was diagnosed with Parkinson’s in 2006,
at the age of 60 when I was a registered nurse working in primary healthcare.
I didn’t expect it. I had some muscular
tension in my neck and shoulders and thought I had been writing on my computer
too much so I went to the doctor, thinking he would send me to a
physiotherapist or for some ultrasonic treatment and that’s it. It didn’t turn
out that way.
I was transferred to a neurologist
instead who immediately saw that it was Parkinson’s.
Did you know much about Parkinson’s
before you were diagnosed?
You would think I would because I had
been working with older people as a nurse but actually, I knew very little.
The image I had of a person with
Parkinson’s was somebody sitting in a wheelchair, tucked up, hanging to one
side, nearly sliding down to the floor, dribbling, and with no way of connecting.
And it was very hard to say, ‘Is this going to be me?’ It was very difficult to
adopt the idea that I had this degenerative disease.
How did you overcome your first
Actually, by chance, I happened to see a programme for a support group for women with Parkinson’s. I said, ‘Well that’s me’, and I joined this group. It was arranged by the Swedish Parkinson’s Disease Association and through it I got in contact with people who understood everything –and it mattered a lot to me at that time. It was important because it took some time to accept that I had Parkinson’s. Parkinson’s association is like gold to us.
When did you start thinking about end-of-life preparations and what made you think about it?
I’m getting old – and I’ve seen people
who have not been able to take care of themselves.
Not being able to speak for yourself, that’s the most horrifying future I think and that comes with end-of-life. It’s essential for your wellbeing to be able to be calm, not to have pain, to be well medicated and taken care of. There are so few places where you can get real treatment and care.
I’m afraid I will be left with someone
who doesn’t understand. I’m not afraid of dying but I am afraid of not being
able to communicate with my carer – if I get to the stage where I need a carer.
And if I can’t, that makes me very worried.
Do you feel like you have someone you
can talk to about these worries?
I can talk to my husband. He is one year
older than me and he has no obvious illnesses. It’s very difficult to find someone
that you really trust in to be able to discuss it with on an equal level.
Are there ways that you and your
family have been preparing – emotionally or financially?
The only thing we have done is move home. My husband and I said that we would move while we could decide ourselves where we wanted to live. It’s really perfect for us. Our flat is designed with a special big bathroom, wider doors and so on – so we could have a carer come here.
In what other ways do you think people
with Parkinson’s can prepare?
It’s difficult to give advice but I would
say talk about it. Don’t keep it inside you, find someone to talk with.
Making a will
Making a will ensures that your belongings will be distributed according to your wishes when you die. Documents available at stationery shops and online, which you can fill out yourself, may provide a simple solution.
Power of attorney
Assigning a ‘power of attorney’ to a friend, relative or solicitor gives them power to act on your behalf, if you are no longer able to do so. You should establish their responsibilities in a legal document. You may also wish to write a ‘living will’, which sets out your wishes, if in the future you are no longer be able to make decisions yourself.
Discussing your wishes
Help next of kin by writing a list of where they can find important documents and communicate if and how you would like a funeral to be arranged. Likewise, it is important to discuss your emotions to family and friends, reaffirm your feelings, resolve disagreements and say goodbyes.
Counsellors may be a useful resource for people making end-of-life preparations, providing confidential support. Others find comfort from religious or spiritual beliefs and may choose to talk to a spiritual leader or chaplain about their experiences.
This month’s top Parkinson’s news stories from around the globe
4 weeks ago
Parkinson’s Europe co-founder Lizzie Graham wins World Parkinson Coalition award
Parkinson’s Europe co-founder Lizzie Graham has won a World Parkinson Coalition (WPC) award for her contribution to the Parkinson’s community. Lizzie is one of four people set to receive the Robin Elliott Award – which is given out every three years to individuals whose efforts best embody the goals and ethos of the WPC. She will be presented with the award in a ceremony at the World Parkinson’s Congress, which will be held in Barcelona later this year. Commenting on the news of Lizzie’s award, Parkinson’s Europe President, Veronica Clark, said: “Lizzie is Lizzie, and we love her for who she is and what she has done for us all – for people with Parkinson’s past and present and, I’m sure, future.” Lizzie co-founded the European Parkinson’s Disease Association (renamed Parkinson’s Europe last year) in 1992. She has since held several roles within the organisation – including secretary general and…
Study explores predictors of cognitive impairment in Parkinson’s disease
Cognitive impairment can affect some people with Parkinson’s – and may greatly impact their quality of life. Now, researchers in China have examined the possible risk factors for cognitive impairment in those with the condition. The study analysed data from 409 people with Parkinson’s within two years of their involvement in the Parkinson’s Progression Markers Initiative (PPMI) – an international study that follows people with and without the condition over time. The participants, who were newly diagnosed and experiencing normal cognitive function at the start of the research, were studied for at least five years. Published in ‘Frontiers in Aging Neuroscience’, the results indicate that older age at onset, high blood pressure and worse baseline motor symptoms may be among factors that could contribute to an increased risk of developing cognitive impairment. The researchers cautioned that “a larger sample and much more comprehensive assessment, and prolonged follow-up, will be required”.
Could frailty be a potential risk factor for Parkinson’s disease?
Frailty can refer to a reduction in physical function, and its attributes – including a slow walking speed and weak grip – are commonly experienced by people with Parkinson’s. Until now, there has been limited insight into the link between frailty and the risk of developing the condition over time. This is what led researchers at the Huazhong University of Science and Technology in China to analyse data from a large UK study, which was gathered over a 12-year period. Published in JAMA Neurology, the analysis found that frailty may be linked to an 87% higher risk of developing the condition. Commenting on the results, the researchers said: “These findings indicate that physical frailty is a potential risk factor for [Parkinson’s], and the assessment and management of frailty might have clinical significance in the at-risk population.”