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.
Penny who is divorced and was diagnosed only two years ago worries about how much help she can...
SHOW TEXT VERSION
So I think , he’s, he doesn’t want me getting into a pattern of dependency for him, so we can have a bit, we, so we do have a bit of conflict because I have an expectation that anyway as he’s a young man living at home, I don’t see why he can’t do such and such a job, but he sees it as well that’ll be, you know, me setting up an expectation that he’s there to do stuff and I’ve got to find my, my own solutions. So I think it’s been a whole level of, distress for him to deal with… and, you know, I mean he’s, he’s very supportive in his own way but, you know, you just don’t want your children to have to be dealing with that, it’s just not fair really.
Penny, diagnosed when she was 51, did not feel ready to see how Parkinson's disease could affect...
I have to admit that I’m also concerned whilst I’m happy to go onto the web forum and communicate with people who’ve, with, who have had Parkinson’s for twenty years. I’m anxious about meeting people in the flesh, I don’t want to, I don’t want to see my future. My mother had a friend who had Parkinson’s so I’m sort of familiar with what Parkinson’s in old age is like but I’m not brave enough to confront what some people’s level of Parkinson’s is in people my own age. And I suppose that that’s part of me not trying to worry about the future.
Penny was relieved when she was told that the reason exercise was not helping her was that her...
SHOW TEXT VERSION
I just get overwhelmed with tiredness just walking, quite short distances, I really miss walking you know? This last summer because I’ve had so many people telling me, “Oh you’ve got to exercise and, you know, surely if you just practise your, you know, your muscles will relax.” So I said, “Well I’ll just walk round the canal every evening.” And, you know, it was about a mile and if I do that hopefully it will start to get myself fitter and I will find it easier to walk, and I’ll be coming back and what happens is your muscles go solid like a tree trunk so you feel like you’ve got this tree attached to you, you know, this wooden thing and it, obviously is quite a lot of pain so I phoned up the Parkinson’s Disease Society and just said, “I’m trying to exercise but the more I exercise the more stiff I’m becoming, it’s clearly not working what should I do?.” and they said, “Well obviously you’re not on the right medication.” “So you need to see your consultant and you should stop doing this exercising. It’s obviously not doing you any good.” And it was such a sensible, sensible reassuring response, you know? And I thought, “yeah that’s right it’s not working it doesn’t matter what all these people I know who are into fitness think, the problem isn’t to do with my muscles the problem is to do with the message from my head to my muscles” so, you know, trying to, exhaust myself to retain my walking is not helping me at this point in time, and I think that’s when I, you start to realise that people who haven’t got Parkinson’s simply don’t understand what happens to your muscles, they don’t understand that once the message has gone to your muscle to tighten up it doesn’t relax again until you’ve gone to sleep or, you’ve, sitting down to rest doesn’t do any good you’ve got to go into proper deep relaxation and then as the messages die off I suppose the leg starts unstiffening.
Penny was introduced to a technique called Mindfulness which helps her.
SHOW TEXT VERSION
I use mindfulness, which I was recommended by a friend of mine who’s a counsellor and it’s based on the concept that you should stop worrying about what’s happened, you shouldn’t worry about what’s going to happen, you should just accept what’s happening today and make conscious choices about today, and the bit of the mindfulness mechanism I use is the body scan, so you’ve to lie down for forty-five minutes, which is quite a long time, I usually put cushions under my legs and then the CD takes me through every part of my body and the idea is not to stretch and relax like in some relaxation programmes because obviously that isn’t appropriate for me, the idea is just to accept what is happening in every part of your body to take notice just take conscious notice and accept it. And if you drift off, I mean I never, never fall asleep ever but if you drift off then it doesn’t matter because when you get to the next part of the body you feel oh no I was supposed to be concentrating on my knee, on my right knee, how does my right knee feel? And it brings you back, and it, the forty-five minutes goes, goes by really quickly and in fact, you know, you, I, I am relaxed at the end of it and the pain levels are much less. So it’s quite good.
When Penny was referred on by her GP she was expecting to discover that her symptoms were caused...
SHOW TEXT VERSION
I was very, very stressed and I just felt, my body just seemed to be getting more and more stiff up one side. And I went back to my doctor who had, who had been monitoring me through that period he knew I was under a lot of stress, and I just said, “Look, you know, I’m so stressed my body’s atrophying.” [Laughs] and at that point he said, “Oh, you know, I think we might need to send you to a neurologist, it probably is just stress but we need to send you just to see.” And I had no idea, I had no idea what that might mean. I still assumed that I was just so stressed because I was fighting this redundancy [tuts] so I got this, they got this appointment which did come through reasonably quickly and it was two days after the date of which I was made redundant and then redeployed [laughs], so I was really quite a shell-shocked anyway. And I just went into this consultant’s room and he said, “Oh you’ve got Park….” “Oh.” He said, “Do you want me to tell you what the matter is?” And I wasn’t expecting, I hadn’t done any background research, I’d assumed it was all connected to just being stressed because of this redundancy, so I had no reason to think that he was going to tell me anything difficult. So I said, “We, yeah there’s no-one else here so you may as well, may as well tell me because I’m here now and I’ll, I’ll worry if you don’t.” So he just said, “Oh you’ve got Parkinson’s.” And I was just absolutely dumbfounded... and I felt unable to, I wasn’t even taking the information in, I hadn’t, I’d no idea what was, what even to do about it, or what the impact would be, or anything really, and, what was interesting is I had told my manager I was going to go and see the neurologist and he obviously didn’t know what it meant either because otherwise he’d probably would have not had been able to, they would probably would’ve had to extend my redundancy date, because it’s not good practice to actually, you know, do what happened to me. So it, I suppose other people haven’t got awareness either.
Penny describes why she did not at first disclose her diagnosis at work and the supportive...
SHOW TEXT VERSION
My next few weeks were, very difficult because I didn’t, didn’t tell, I had, I was on a probationary period from having been redeployed for eight weeks and my Union, bizarrely, told me not to tell my manager, my new manager, so I was traumatised, traumatised by a preliminary diagnosis, traumatised by having lost the work I’d been spending the last thirteen years in and having to pick up a completely new field which was very challenging with a manager who didn’t want me because I’d been redeployed and I wasn’t supposed to mention that I’d got this condition, I wasn’t any better able to manage that the, you know, the condition at that stage anyway because, because obviously I wasn’t being given anything.
Things got very difficult at work because, my, the team that I was managing were obviously a bit, they, they, they, they were uncomfortable at having this manager who’d come in which they had been told had no experience in their field.
And then they were more uncomfortable when they discovered that I had, you know, some major long term illness, and that was quite difficult, and my new manager obviously felt that the team had the right not to bemanaged by someone who was ill, which was also, difficult. And, things got difficult for me at work I think, and I still didn’t have any time off sick, I was still working as full time as I could possibly manage and without, with, with very little sickness. And then eventually I think in the autumn I was so tired, trying to manage a new job, a team who were uncomfortable and a manager who was uncomfortable that I just went to see Personnel who advised me to see my Union and I basically at that point said, “I’m not quite sure about the ethics of me having been re-deployed simultaneously with receiving a neurology diagnosis, how, how am I, would have been, how have I been expected to be able to deal with all of this?.” And at that point obviously, you know, my employees are public sector so they were very concerned about what had actually happened and they immediately tried to sort out a, a more sustainable situation for me and my office was moved to a ground floor, and they moved, they, they gave me a different post so that I didn’t have to worry about managing a team, and that sort of kept me going for a little bit, it will have to be reviewed but obviously they’d felt that they hadn’t really managed things very well for me. But, if I hadn’t disclosed to everybody, you know, we wouldn’t have had that resolution I don’t think, I’d have been, I would’ve been taken down a competency route because they wouldn’t have understood that I was actually suffering from fatigue and the sort of brain, brain fog.
The occupational health department at her work provided counselling which helped Penny deal with...
...and probably most importantly I have access to the occupational health counsellor, and when I started I thought that, a couple of sessions, on we be, we’d be through. And what I have found is that the counselling sessions have been really, really helpful, I found them very, very difficult because we have talked a lot about my loss. So he has identified that I have had to deal with a lot of loss and therefore it’s made me dealing with, diagnosis and adjustment more difficult because I haven’t actually dealt with anything else so we, we do, you know, have to discuss things I don’t want to talk about which is relationship with my, husband, relationship with my, family, how I felt about my sister dying, how I feel about, the people I work with, and it, it can be quite harrowing but, but it, but it’s been very useful because it’s meant that I’ve been able to say what I’ve thought I needed to say which perhaps I can’t say to other people, and that’s been very therapeutic.