Parkinson's disease

Penny - Interview 17

Female
Age at interview: 53
Age at diagnosis: 51

Brief outline: Although she was advised not to mention her newly diagnosed Parkinson's disease when she had to change her job she has found that disclosure was necessary. As a divorced woman she can't help worrying about who will care for her in future if her condition deteriorates.

Background: Divorced, 1 adult son lives with her, Currently working in management, strategic planner.

Audio & video

For several years Penny had been concerned about tiredness but this was always put down to stress. Then a friend noticed she wasn’t using one of her feel properly. Her GP gave her iron tablets. Around this time she had also noticed that it was difficult to see in poor light. When she was given an antidepressant she became unable to focus at all. When she was made redundant this seemed to coincide with further stiffening up but this time her GP suggested getting a neurological opinion. She had no idea what this could mean didn’t even understand the difference between a neurologist and a psychiatrist. She was totally unprepared for the diagnosis of PD. The consultant suggested she contact the PD society but didn’t give her any further information himself except that the had no PD nurse. He also said her GP would prescribe for her. She was shocked that there was no-one to offer her support when she was given the diagnosis. Instead she was sent off to have some blood tests.

 

She looked up the PD society on the internet. It said little about fatigue which was still her most worrying symptom. She wanted to know what to expect, the implications of her relatively early onset. She found out that no two cases are the same.

 

She waited 3 months for an MRI only to be told that its results were irrelevant to the diagnosis. She asked to be referred to a hospital with an interest in research. Most of the hospitals she would have liked to go to were out of the question. She settled for one in a different PCT but the same RHA. The referral it took 5months. She is not allowed to use this hospital’s PD nurse but has to use the one in her PCT who doesn’t have her notes. The local physios say they can’t deal with long term health problems but she has had physio through the OT at her work. She sees a chiropractor, a Reiki practitioner and an aromatherapist. She tried to force herself to do exercise but found herself getting increasingly exhausted and stiff. PD society suggested her medication should be changed. She was helped by a form of relaxation called ‘mindfullness’ She has found various relaxation schedules through the internet. One from the University of Massachusetts another called the Expert Management Programme. This has helped her understand that she doesn’t have to push herself even if people try to make her.

 

Though she told her son the day she received her diagnosis she was advised not to tell her work as she had just been redeployed to a new job. However this became a problem and once she did tell her union they were helpful in making sure that the work was appropriate for her. She has been able to reinstate an employee disability forum at her work. She feels that if your disability is likely to be noticeable it is best to tell people about it first. She visited a former colleague who had MS and was impressed by her determination to be able to continue doing the things she was good at.

 

She has taken up the tenor horn, and goes to a painting class and is in a choir. She has found it helpful to tell people there about her condition. Some of her old friends have not been able to cope with her being ill. They can’t understand her preoccupation with PD. Others understand and are supportive.

 

She has found a PD forum where people can share their experiences very helpful. She’s less eager to meet other patients in the flesh, not wanting to confront what might be her future.

 

Living on her own and with failing eyesight she has many worries about her future, her work, income, care, where she should live. She’s anxious about having nothing to do and having all her options limited by her PD.

 

She takes Rasagiline, and Ropinerole and an antinausea pill and Sopiclone to sleep and occasional Diazepam. She also takes a supplement Q10 but has difficulty swallowing the recommended dose. The Rasagiline removed her ‘brain fog’ but is perhaps responsible for a constant buzzing in her head. The Ropinerole makes her profoundly sleepy but makes her movements much more co-ordinated and more motivated. She thinks it also makes her impulsive.

 

Her son can be very helpful but both of them want to avoid her becoming dependent on him. With her 89 year old mother it is difficult to explain her situation without letting on just how bad things are, at the same time trying to be sure that her brothers don’t assume that she has exaggerated her problem. Also she envies her mother for being fitter than her.

 

She speculates on the problem of entering a new relationship and has no idea how she would react to the physical side of it. She wonders whether the developing PD contributed to the failure of her marriage.

 

She has had valuable help from the occupational health counsellor and feels that she has learnt that by being ‘selfish’ she is actually doing other people a favour as she will find it easier to cope with her situation.

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