Writer Tim Carroll discusses the issues encountered by people diagnosed with ‘young-onset’ Parkinson’s. Tim himself was diagnosed with the progressive neurological condition in his early fifties.
An estimated 127,000 people in the UK, or around one in 500 of the population, have Parkinson’s (NHS Choices, 2018), and the number is on the rise. While there are treatments available to help manage the condition, there is still no cure. Parkinson’s generally strikes when people are in their sixties or seventies and well on their way to retirement. But about 5% of people diagnosed are younger than 40 and still in the middle of their working careers and/or bringing up children (NHS Choices, 2018). The problems they face are significantly different to those of the older generation.
What are the problems?
Being told you have Parkinson’s is bad enough in your twilight years, when you are wearily resigned to the limitations and infirmities of looming old age. But getting a diagnosis when you are still immersed in the daily struggle of full-time employment and the demands of being a parent presents a more challenging set of difficulties.
First and foremost for many will be the prospect of losing their job. The impact on their partner and children will be a major consideration. For some young couples, Parkinson’s poses the heartbreaking dilemma of whether or not they should begin a family in the first place.
Coping with these issues might be complicated by the fact that the worst symptoms of Parkinson’s are often not immediately obvious. It can be many years before Parkinson’s begins to take its toll. Even when the symptoms take hold, the medication can be extraordinarily effective in disguising the condition. So much so that it is quite common for people to kid themselves into thinking that they don’t really have a problem, or that somehow they will prove to be the exception to the rule.
Inevitably, however, there will come a time when they wonder whether they should tell their employer. Are they legally required to do so? Must they inform a potential employer of their condition? What if they become too incapacitated to work, or they decide to give up work? Are there any benefits they can apply for? Will they be able to draw on their pension?
There is so much that is simply not known about Parkinson’s, and the condition afflicts people in so many different ways with multiple degrees of severity. Community practitioners can help by having a basic knowledge of the support available for clients with Parkinson’s.
Being diagnosed with Parkinson’s does not mean giving up work. It is possible, depending on the extent of symptoms and the success with which they are managed, that a person with Parkinson’s could continue to work for many years. And people are not required to inform their manager that they have Parkinson’s unless it is likely to cause health and safety issues or it will require adjustments to the way they work (Parkinson’s UK, 2018). If a person does tell them, their right to confidentiality is protected by the Data Protection Act and its successor from 25 May, General Data Protection Regulation. The manager must not tell anyone else without specific permission.
When a person has Parkinson’s, they will probably qualify as being disabled under the Equality Act (2010) – or the Disability Discrimination Act in Northern Ireland (1995) – meaning it is illegal to discriminate against someone because of their condition. It takes into account the fluctuating nature of Parkinson’s and provides protection even on days when the person is feeling fine.
However, people with Parkinson’s may need to change the way in which they work. The law makes the employer legally responsible for what are termed ‘reasonable adjustments’ to the person’s work practices and/or workplace. People can arrive at a ‘workplace adjustment agreement’ with their employer that will cover the difficulties they might encounter because of Parkinson’s: for instance, walking, concentrating on work, or holding telephone conversations.
There are numerous possible provisions. A person might be allowed to work from home on some days for instance. The company might be legally required to make physical alterations to buildings or provide special equipment, such as a large-buttoned telephone.
For those who work for a small firm that cannot afford such alterations, it might be possible to get a grant from a government scheme called Access to Work. If it is impossible to make the reasonable adjustments that they need to continue in their job, their employer is required to offer ‘redeployment’ in a role that they are capable of fulfilling.
It’s best to first raise the issue with a manager and discuss matters informally. If he or she does not have the power or inclination to act on their behalf, it is important to bring the matter to the attention of HR. They can consult occupational health specialists who will be able to provide the company with an independent and impartial assessment of the person’s needs.
How else can you help?
Community practitioners should put clients in touch with the charity Parkinson’s UK, which is particularly helpful with emotional concerns in the family. It has put together four books for younger children, as well as a guide for teenagers.
Dozens of groups throughout the UK also cater for the requirements of young people with Parkinson’s. The South London Younger Parkinson’s Network (SLYPN), for instance, organises social events and fundraisers for Parkinson’s UK (see graphic, left).
What about starting a family?
There are so few cases of women with Parkinson’s becoming pregnant that no reliable figures exist. There is a limited evidence suggesting certain drugs should be avoided. And some doctors are inclined to advise that no Parkinson’s medication should be taken at all. But of those births that have been documented, the vast majority end up in successful, full-term delivery of healthy babies. It’s probably best before becoming pregnant for women to consult their neurologist, obstetrician and Parkinson’s nurse.
Tim Carroll is an author and travel writer. He lives in London with his wife Linda and their two children.