Parkinson's disease

Work, career, benefits

For someone in their forties or fifties (and some were even younger than that) who is given the diagnosis of Parkinson’s disease, although the immediate and long term outcomes may at the time be uncertain, one concern dominates - what will happen in the future? Will it possible to work up to retirement age? Will there be a big drop in income? Will increasing dependency add considerable costs?

Some people had already had to take time off work before they got their diagnosis, but many were still quite fit and could continue to work. Many faced a difficult decision whether they should tell their employers about the diagnosis. Rafa decided not to tell anyone whom he was not legally obliged to tell because the diagnosis had come very early in the course of the illness. He had so far no idea how fast his symptoms were likely to develop and he and his partner had decided not to tell their children as they didn’t want them worrying about things that they really didn’t need to worry about before they happened. Over the course of 18 months since the diagnosis his condition has hardly deteriorated, so for him this was a wise decision.
 
Others, like Helen, had already told their manager that they were going for tests or to see a consultant, so their colleagues were to some extent forewarned and waiting to find out about the diagnosis. For some the decision whether to tell was more difficult.
Several other people encountered similarly sympathetic reactions when they informed their managers. Employers in the public sector were sometimes particularly understanding and willing to adapt. Helen, a nursery nurse for the local council, was found a job where she would not be directly responsible for babies. Elaine who worked for the NHS had so far been allowed over a year on sick pay before her diagnosis was made and was expecting to be able to return to work with reduced hours now that her treatment had greatly improved her condition. When Karen had difficulty keeping up with the targets required in her work she was found another job where targets were not required and she could go at her own pace.
 
Ann’s husband worked in the private sector and was pleased that their initial apprehension about revealing the diagnosis was unfounded: changes to his work and environment were made including a new computer screen and more space around his desk. New computer technology also helped some people to continue to work – both Humphrey and Geraldine had used voice recognition software.

Unfortunately not everyone was so lucky. Judie had to take her organisation to a tribunal (they settled out of court) and Sharon regretted that the teaching profession was insufficiently adaptable to allow her to continue to use her skills in a more flexible way.

Many people could not continue their work as their symptoms became more intrusive. Some could continue part-time (Ruth could not manage full-time but could do 20 hours a week), others had to change their work entirely. Steve was taken off his work in a car factory and put on sweeping instead. Fortunately he was offered redundancy on medical grounds, got a decent pay off and found a part-time job which he enjoyed. Neil continued to work as a long distance lorry driver until his diagnosis was confirmed, at which point he lost his HGV licence and had to give up. Gaynor realised she could no longer guarantee her efficiency as a social worker because things like keeping proper records were taking her much longer to do. Realising that she risked becoming unsafe she reluctantly decided to seek early retirement.
Some people have found a way to maintain a working life, in a new and more flexible occupation. Sharon knew she had to give up the teaching job she loved but when she started a cake baking business that gave her both satisfaction and flexibility. 
 
Geraldine continues to work part time to keep her brain stimulated but always has a contingency plan in case she can’t turn up at a meeting. She finds that people in the voluntary health and government sectors are generally understanding. Several people found employment, interest and satisfaction in fields where their experience of Parkinson’s disease was particularly valuable. 
Rex took early retirement, his wife also retired on health grounds, and the two of them have been enjoying the closeness this has allowed them. Though most of the people who did retire from work felt that their decision had been appropriate and inevitable, they were not always prepared for the social implications of no longer being in work. Joe, an actor, had managed to continue working in theatre and radio for 12 years after his diagnosis but had eventually had to retire – which was a difficult adjustment since as he said actors tend to keep working ‘until they drop’.
Most people did not complain about the financial implications of early retirement. Several had received a lump sum payment when they left work.
State Benefits
Several people mentioned the helpful advice on benefits that they had received from the Parkinson’s UK, Parkinson’s nurses and the Expert Patients Programme which runs courses which inform people about key benefits. Gaynor mentioned how unfair it seemed that while her husband could have free prescriptions because he suffered from diabetes there was no such arrangement for people with Parkinson’s disease. One person had taken out critical illness insurance five years before the onset of her Parkinson’s disease and had received a substantial payment from this. She had also taken out mortgage repayment insurance and was hoping that she would get help with this as well.
For the latest information on benefits see GOV.UK's website.

Last reviewed May 2017.
Last updated May 2017.

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