Being told you are a person with Parkinson’s.

The first point of transition focussed on the time of diagnosis when participants were told they have a chronic neurodegenerative disease; marking a period of becoming a person with Parkinson’s. This was where presenting symptoms were managed, future implications considered, and the process of adjustment began. The sub-themes within this theme are receiving and accepting a diagnosis; and navigating reactions.

Receiving and accepting a diagnosis.

Participants with a range of disease durations recalled receiving a diagnosis of Parkinson’s as both as an internal process and as externally in the world involving noticing symptoms, going to the GP and subsequent referrals to specialists:

“I was under the doctor for various things. And when I started my hand shaking, my common sense told me that it was the start of something. And I did research on it with the internet. And the word ‘Parkinson’s’ kept coming up. […] So I went to my GP and he diagnosed, he diagnosed–there was a letter where he [specialist] agrees with my doctor.” (06P. Male, Diagnosed < 1 year)

Family members recalled greater perceived shock in the person with Parkinson’s when the diagnosis was unexpected or sudden, for example when admitted to hospital for an unrelated matter or being told directly by a GP based on observations without investigations or specialist referral:

“She took herself up the doctor’s, and he said, ‘hold your hands up’. […] he said you’ve got Parkinson’s, so that was the diagnosis. Next door here, there’s [name], he’s only 58 […] he’s just been diagnosed as well. But he had a proper test at the hospital, some sort of brain scan I believe.” (14C. Son of female diagnosed 14 years)

Reassurance was gained from the chance to ask questions and undergo what were perceived as thorough investigations, and by empathetic experts:

“He (doctor) was very warm. He was understanding. He had a lot of empathy with what [name] was going through. He’s seeing it every day, but to us it was like he understood totally and was able to reassure us.” (06C. Wife of male, diagnosed < 1 year)

For some younger participants or those who were at an earlier stage of family life with young children, without suspicions of having Parkinson’s, reaching a diagnosis took longer, became more of a shock, and acceptance and adjustment were less straightforward:

“It was sort of out of the blue, because I was initially diagnosed as having arthritis. And I was being treated for arthritis, but eventually they said I had Parkinson’s, young onset Parkinson’s. Well I thought I didn’t, because I was quite healthy enough and everything, except for some joint pains. But slowly, gradually, the condition started sinking in.” (01P. Male, Diagnosed 8 years)

Navigating reactions.

There were many accounts from those across ages, genders and disease durations of concerns around telling family members, friends and employers about their diagnosis. Others’ ignorance was felt a potential risk due to being perceived as different, impaired, incompetent or unreliable:

"… nervous about telling others about it for what the other people might think, because there’s generally a lot of ignorance about Parkinson’s in society.” (16P. Male, Diagnosed 3 years)

Participants had chosen to tell others about their diagnosis in various ways, and being open was seen as a positive way of helping people understand Parkinson’s, particularly when symptoms began to affect normal activities:

“I decided we would never tried [try] to conceal it. We decided to just be very upfront with it. And that worked, seems to have worked for us.” (12P Male, Diagnosed 3 years)

However, others chose to keep their diagnosis hidden, either because of reluctance to accept the diagnosis or because of stigma:

“And there is a stigma attached to the condition back home, where I come from (India). […] So nobody would like, even my family wouldn’t like to tell anybody else that I’m having this condition. So it’s better off taking me as a drunk, rather than a PD patient.” (01P male, Diagnosed 8 years)

There was particular reluctance to share the diagnosis when in paid employment. Fear of being misunderstood, with Parkinson’s seen as an older person’s condition, caused worry that ability and competence could be questioned. The potential risk of losing employment brought both short- and long-term implications for sense of identity and economic security:

“My workplace doesn’t know that I’m having this condition. […] as long as I am working, as long as I can work, I’ll keep on going until then, unless I really feel the need to tell them about it.” (01P. Male, Diagnosed 8 years)

Changing social interactions and maintaining sense of self.

Despite the strategies to manage others’ reactions and to overcome growing social isolation, a gradual reduction in social activities and relationships was described, in part attributed to the impact of Parkinson’s symptoms influencing how people felt about themselves in social situations.

Reduced mobility, risk of falls, regularly needing to use the toilet, and freezing where movement of a part of the body is impossible for a short time, made going out of the home more problematic. Similarly, changes in memory, mood and speech affected interactions. Over-salivating, difficulties with dexterity or swallowing, for example, meant some were concerned with social dignity leading to greater self-consciousness both for the person with Parkinson’s and those accompanying them:

“It’s not easy to socialise in that situation and I’m very conscious as well. You know, when we go out, I’ve got to help her cut her food up and, yes, avoid spillages and things like that.” (10C. Husband of female, Diagnosed 2 years)

Additionally, fatigue, unpredictable symptoms, and the necessity of carefully timed medication to manage fluctuation of symptoms, and ‘on’/‘off’ periods, made it both difficult to be spontaneous or to plan:

“It’s very difficult to make an appointment in the morning at the moment because I know that at some point I’m likely to be shaky.” (17P Female, Diagnosed 15 years)

Despite the challenges of maintaining social contact and activities, the desire to feel ‘normal’, with a sense of purpose and satisfaction, and not defined by the condition, was demonstrated though the interactive hobbies and activities still undertaken, and sometimes adapted, such as exercise classes. For some, new social networks emerged from Parkinson’s or carers’ groups, but generally pre-existing friendships helped maintain a sense of connection. For others, faith communities were important and modifications helped maintain existing connections and attachments:

“I don’t socially go out as much as what I used to. Well, I get visits from people. The band, being in the [church] band, they’re a very caring band. And most recently, one Sunday morning, I was sitting here and I heard the band outside the window. The band had come to visit me.” (6P. 75 year old male, recently diagnosed)

Information: Wanting to know, but not wanting to know.

Many participants, across ages, genders and duration of Parkinson’s, valued information about the condition and practicalities such as managing finances. However, views were mixed as how to best access information, whether directly from healthcare professionals as experts, or sourcing information themselves. Some felt some information provided at the time of diagnosis was deliberately restricted to protect the person with Parkinson’s or was inadequate:

“I think if GPs could be more aware or if the Parkinson’s nurse or, I don’t know. I think if they could all just be aware that one might need just a little bit more help in understanding. Understanding what one can do and can’t do and what the medication will do, what the side effects could be.” (12C. wife of male, Diagnosed 3 years)

In contrast, others found information from a range of sources was supportive and empowering:

“Our knowledge of Parkinson’s was virtually nilch [nothing]. […]. There’s a lot of support around, lots of help and guidance, […]. So, between us all, we can make a fair fist of it.” (13P. Male, Diagnosed 6 years)

Many successfully sought information themselves, through books, hospital leaflets, personal recommendations, charities, and online. The latter was often initiated and supported by extended family members, including grandchildren, which sometimes revealed a difference in desire for knowledge between family members:

“Well, they’re [children and grandchildren] always looking on, on the line, on this iPad, getting things to say. But it goes on. Frighten the life out of you. Read this, read that. […] Since they knew I had Parkinson’s, they all went up like an army. One’s looking at this book, one’s reading that one, one’s…” (15P. Male, Diagnosed 10 years)

Despite family members often seeking more information some acknowledged that explicit information could be upsetting to the person with Parkinson’s:

“Yes, information yes, but I don’t suppose he’d want to talk about that, because it will only upset him, won’t it?” (04C. Son of male)

There were not only some different desires for information between the person with Parkinson’s and their family members but the views of people with Parkinson’s also differed, particularly whether information should focus on current symptoms alone or include the future. Some took the approach of “the less I know sometimes, the less the better, I think” (11P. Female, Diagnosed 6 years), meaning support groups were avoided out of fear of being exposed to people with advanced symptoms. For others, awareness of future possibilities helped:

“You need to, somebody to tell you and to explain things to you before they get bad and before they’re not–which is the things would be more helpful.” (3P. Female, Diagnosed 8 years)

Participants more commonly described wanting practical and positive information to help manage day-to-day matters and to respond to arising symptoms or situations. Discussions about future long-term care or end of life decisions were not reflected in the interviews, and coping appeared to be enabled by focusing on what it was possible to control:

“Other people, they don’t realise sometimes how you don’t want to hear, like, people will say, ‘oh, what will you do when it gets to this?’ […] I know you’ve got to make precautions for the future, but ….” (06C. Daughter of male, Diagnosed < 1 year)

Finding a place in the healthcare system.

Symptom progression meant increased reliance on healthcare providers, at which point some participants felt that they did not fit into the healthcare system, as Parkinson’s was not always understood by the healthcare providers they interacted with. Many considered greater continuity of care and understanding of Parkinson’s were required in primary and secondary healthcare and social care:

“You can go to the doctor’s on four different occasions and see four different doctors. So, we would like to think we have some sort of priority, it’s nice to know you’re going to be met by somebody you have some confidence in.” (13P Male, Diagnosed 6 years)

Admission to hospital following acute episodes, or a care home for respite, occurred when symptoms became more complex, often accompanied by a marked deterioration and difficulty coping at home. When moving from home to hospital people described feeling that their Parkinson’s specific needs were not fully met:

“We told this staff nurse that your regime of four times a day with tablets is no good for my mum, it’s six times a day, or in actual fact, seven. That didn’t happen at all.” (14C. Son of female, Diagnosed 14 years]

Similarly, there were complaints that despite the creation of individual care plans by nursing and care staff there was limited understanding of the fluctuations of Parkinson’s symptoms by non-specialist staff working in non-specialist environments:

“People don’t understand the Parkinson’s at all, especially normal wards [general medical wards]. […] You know they fill out these questionnaires and they say what you can do for yourself. And, you know, I’ve ticked like, ‘going to the bathroom, I may need help, getting dressed, I need help.’ […] the nurses will see that you’re young and you look fine, so you don’t need any help. There will be times where they’ll leave the lunch there, but sometimes you can’t cut the food up yourself.” [03P. Female, Diagnosed 8 years]

With progression of symptoms participants spoke of the increasing benefit from specialist advice, including neurologists, Parkinson’s nurses, physiotherapists and speech and language therapists. The perceived variation in provision and access to specialist services was however criticised:

“But the main problem is the diversity of what’s out there and putting it all together. I mean, I’ve spoken to people who’ve never had any contact with physiotherapy, who’ve never had any contact from occupational therapists. I mean, I didn’t have contact from occupational therapists until I’d been assessed for medical retirement, which was nine years in.” (05P. Male, Diagnosed 18 years)

Increasing dependency.

The final transition identified was as symptoms increased and participants experienced a significant decline in functional ability. It was identified as: changes in roles and relationships and becoming increasingly dependent.

Changes in roles and relationships.

As symptoms increased participants spoke about reduced independence, subsequent role changes and increasing reliance on others for practical support, facilitation of social activities and assistance with health and care, with co-resident spouses and family members invariably taking on more responsibility. Transition within roles and renegotiation started with supervising, monitoring and supporting activities:

“And she watches me while I’m getting out of the bath and getting into the bath, to make sure that I don’t fall down.” (06P. Male, Diagnosed < 1 year)

Renegotiation also took place through a process of sharing activities, where the person with Parkinson’s continued to contribute in ways that were still possible alongside existing support:

“If she was on her own, she’d struggle to cook the sort of meal that she would like […] So now she sits out there on a stool and says, ‘Right you set that timer for that time and this timer for that time and this and that.’” (07C. Husband of 74 year old female, diagnosed 8 years)

However, over time, physical and cognitive decline meant tasks were relinquished, such as managing medications or finances:

“I just do the housework or sort out the house, talk to the insurance assessor, talk to these people, those people, or make his appointments and remind him of the appointments. […] The total burden of running the house is on me.” (18C. Wife of male, Diagnosed 5 years)

As attention increasingly focussed on the needs of the person with Parkinson’s, spouses often surrendered their own needs to accommodate reduced ability or to capitalise on good periods. They also became conscious of the transition from ‘spouse’ to ‘carer’, exacerbated by symptoms such as nocturia and sleep disturbance often leading to sleeping in separate rooms, resulting in loss of intimacy:

“I just do feel like ‘the carer’ […]. Well, we’re not really physically intimate now, I think. He probably just sees me more as his carer.” (05C. Wife of male, Diagnosed 18 years)

Although co-resident family members such as spouses provided substantial care and support, there were also instances where role transitions occurred to provide further support from non-resident family members:

“My granddaughter comes in once a fortnight and cleans the house from top to bottom for me.” (04P. 71 year old male)

Increasingly dependent.

Declining abilities gradually limited independence, with activities and routine tasks taking longer and requiring careful use of energy:

“For a normal person, they have their energy and use it everywhere. With Parkinson’s, I use my energy wisely. I think to myself, what’s more important for me to do today. And I’ll put my energies there.” (03P. Female, Diagnosed 8 years)

Several participants spoke knowledgably and insightfully about the debilitating symptoms leading to their dependence. They described increasing unpredictability of symptoms and ‘on’/ ‘off’ periods, when medications became less effective and resulted in tiredness, slowness and impossibility of doing things and therefore increased reliance on others:

“I run out of dopamine. And once you run out of dopamine, the whole thing goes haywire. It’s very difficult to do anything then. […] So from 3 o’clock onwards, we’re on a downward slope to bedtime which is at 10 or 11 o’clock at night.” (12P male, Diagnosed 3 years)

Although many changes took place over time, a diagnosis of dementia or discharge from hospital could highlight the extent of increasing difficulty and decline. At such times increased recognition of the need for additional support often triggered the involvement of services such as home care, and members of the multi-disciplinary team:

“It’s progressively got more challenging with her deteriorating condition, which is now Parkinson’s dementia as well […] that’s when I think it really hit home because she was, I think, a bit in denial up until then. And then shortly after that, we were seen, or she was seen by a mental health nurse, a dementia nurse.” (10C. Husband to female, Diagnosed 2 years)

Although increasingly less able and dependent on family members and external support agencies participants described thinking optimistically, not worrying about the unknown, gratitude for the past, acknowledging positive aspects of life, taking one day at a time, and making the most of the good days as ways of coping with worsening symptoms:

“I’ve been very lucky. I had a lovely wife, I’ve got lovely children. I’ve got lovely friends. What more can you want? I’ve got a lovely flat.” (8P. Male Diagnosed 18 months)