Living with the uncertainty of Parkinson’s
BMJ 2025; 388 doi: https://doi.org/10.1136/bmj.q2611 (Published 08 January 2025) Cite this as: BMJ 2025;388:q2611
Just over 10 years ago I was diagnosed with Parkinson’s disease. I had suffered for several years from strange bouts of cramp, stiffness, and a very painful back. A badly torn rotator cuff only confused the issue as I put much of my discomfort down to my shoulder or back problems. Before major back surgery the surgeon expressed doubts and quietly suggested a neurological rather than a musculoskeletal issue. Raising the possibility of a life changing condition with such non-alarmist tact was helpful.
A colleague along the corridor was more direct but equally careful. Not everybody would have appreciated this directness, but I was relieved. Knowing what I had gave me a better chance of dealing with it.
Facing the figures
Disease progression has been mercifully slow since my diagnosis. However, the intrinsic uncertainty in the condition breeds anxiety: another Parkinson’s gift. A thoughtless remark could cause me to lose confidence, leading to isolation and depression. I was once told that within 10 years of diagnosis I would be wheelchair bound and have dementia. This brutal generalisation could have caused some people to give up the fight. I knew that those predictions could not be made, and luckily I am right.
Receiving the most effective drugs can be a challenge; from the patient’s perspective, prescribing can look more like an art than a science. As an added complication, the patient may become less able to articulate their problems as the disease progresses. I have been very fortunate that the drugs prescribed for me work well, but this isn’t the case for everyone. Patients need support when treatments do not deliver the expected results. I am fortunate as I am functioning well and need very little help, but I still need empathy and the reassurance that my healthcare team are doing the best they can. I want to believe that they will still be working with me even with the prospect of immobility and dementia.
Building trust
Trust is a fragile creature which can be easily damaged. Parkinson’s is a team game involving carers, family, and friends, but the patient is the only one who knows how it feels. When there is mutual trust and respect it is easier to tell the truth. Goodwill and openness engender respect. This is done by listening to each other. Health professionals have a key role in building trust with someone living with Parkinson’s. Without this contact, the patient may turn to the internet or others living with Parkinson’s for help. While support is good, there is a risk these sources may deliver mis- or disinformation.
Health professionals must trust the patient to do as they advise, and the patient must believe the healthcare team is doing their best. I find sending the medical team regular updates of my symptoms helps maintain a connection, provided there is a response. This dialogue brings our different viewpoints, understanding, and experience together. Everybody will learn something about Parkinson’s while fostering mutual respect.
What you need to know
Be as honest, yet empathic as possible when delivering a life changing diagnosis
Respond to questions about disease progression with as much information as you can, but explain that predictions are never certain
Education in practice
How could you ensure you deliver a life changing diagnosis with honesty and empathy?
What information could you share with someone with Parkinson’s to support them through the uncertainty they may face?
How might you nurture a therapeutic relationship built on mutual respect?
Footnotes
Competing interests: none.