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. The 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.
For more information on Parkinson’s and preparing for end-of-life, please visit the EPDA website.
This month’s top Parkinson’s news stories from around the globe
23 hours ago
Sir Billy Connolly: Parkinson’s disease is “like a strange animal”
Scottish comedian, actor and musician Sir Billy Connolly has recently discussed his experience of Parkinson’s disease while promoting his new autobiography, ‘Windswept & Interesting’. In an appearance on UK talk show, ‘The Graham Norton Show’, the comedian explained that he had lost the ability to write. He said: “It breaks my heart as I used to love writing letters to people.” Speaking to UK newspaper The Guardian, Connolly added that he thinks the condition is “like a strange animal. One that sits beside you and says, ‘How will you get on without this?’ – before it takes away something else.” Despite these adjustments, Connolly told Norton he has “good days and bad days” with the condition. “It’s creeping up on me and it never lets go,” he said. “I walk like a drunk man and have to have help. So, life is different, but it is good.” Lead image credit:…
New insights on immune cell process and Parkinson’s disease
Insoluble clumps of the protein alpha-synuclein, which can cause damage to brain cells, have been previously linked to Parkinson’s. Now, scientists in Germany, France and the US have uncovered new details on how brain cells respond to these clusters. The researchers discovered that the brain’s immune cells may be able to join together to break down the protein clumps. According to a press release, this was previously unknown. They also found that these neighbouring cells share mitochondria – structures that generate energy for chemical reactions – to help one another. In certain mutations associated with Parkinson’s, this process may be impaired. The researchers hope this insight could inform the development of new therapies. “We have opened the door to a field that will certainly engage researchers for many years to come,” said Professor Dr Michael Heneka, director of the Department of Neurodegenerative Diseases and Geriatric Psychiatry at the University Hospital…
Could analysing skin oil help diagnose Parkinson’s disease?
Parkinson’s disease patients tend to have high levels of oil, known as sebum, on their skin’s surface. Now, a study has suggested that analysing this substance may help when diagnosing the condition. The study revealed that sebum contains significant amounts of genetic material, specifically the molecule ribonucleic acid (RNA). Analysis of RNA contained in sebum – that is, skin surface lipids RNA, or SSL-RNA – could offer insights into a person’s health. Researchers in Japan examined SSL-RNA in men and women with and without Parkinson’s. The results suggested that the SSL-RNA profiles of those with Parkinson’s had “different characteristics” than those without. The researchers then tested whether examining these profiles with machine learning could reveal those who had Parkinson’s – and who didn’t. The team’s algorithm indicated a “relatively robust discriminatory ability,” supporting the further use of SSL-RNA as part of a future “non-invasive” method for diagnosis.