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Through this session, I think it's important to remember that individuals with LTC's are still individual's who deserve the right to have independence, choice and respect/dignity. Something that John reminded us of within this session. It is something I think about regularly while on placement and also at home having a child with an LTC, remembering to promote the independence of these individuals and ensure they are getting the most from the lives and also that they are involved with their care and this is definitely something I will continue to try and do going through my studies and nursing career. I like how John used comedy to talk about his experiences and also how he seemed so positive but real in describing the moments where he doesn't feel so good, i.e feeling like a burden toward his family sometimes.

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Hearing all about his personal experience with his LTC was interesting. The way he has been coping with Parkinson's disease in his way shows that we can be very resilient.  His relationship with his family, the support he gives and gets, his humor, and his coping strategies made this story even more interesting especially for me as a future nurse as it is inspirational. He was very open about how he is coping on a good and bad day, about what makes it  worse and better. 

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Hearing all about his personal experience with his LTC was interesting. The way he has been coping with Parkinson's disease in his way shows that we can be very resilient.  His relationship with his family, the support he gives and gets, his humor, and his coping strategies made this story even more interesting especially for me as a future nurse as it is inspirational. He was very open about how he is coping on a good and bad day, about what makes it  worse and better. 

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Patient Experience of Living with a Long Term Condition - Parkinson's Disease

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Patient Experience of Living with a Long Term Condition - Parkinson's Disease

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Meeting John it was important to learning how he is dealing with his long term condition. How his reaction when is body did not cooperate with his mind. How he feels the medication interacting with his body. His frustrations.  His relationship with his wife and sons.  It was amazing to see a nice positive person, managing the negative part of the disease. His enthusiasm and sense of humour, when talking about his experiences and his feelings, made me reflect on how I could help others. It was important to know that he could have a normal life.

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How hearing about John's experience of living with Parkinson's Disease has impacted your learning and role as a student nurse

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How hearing about John's experience of living with Parkinson's Disease has impacted your learning and role as a student nurse

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John’s experience during the informal session was a fresh and firsthand information. During the session, John was very open and explained every experience he had in the past. After diagnosing Parkinson’s, John was worried about his family. Even though he was a strong guy, he realised that there was a change in his capabilities after Parkinson’s. John was a fighter, and he was able to cop the first three months. John also talked about the limitations and difficulties he faced within the healthcare.

As a student nurse, I was fascinated by his coping techniques. He looked very positive even though he had lots of challenges in his life. His determination and the support from other resources helped him to cop his LTC. Thanks again for sharing his amazing journey experience.

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I found the chat with John very eye opening. he showed us that just because he has Parkinson's doesn't mean he has lost who he is. I like how he use comedy and humility to talk about his experience. he also talked about the nurses who helped him. he sometimes feels that he has burdened his family. He told us that stress affects his Parkinson's more but doesn't let it stop him. he goes to a support group which he finds very useful to just talk. on day he finds it harder he tries to be active like going on walks, swimming and feels as though this helps him. As a student nurse this helps me to look more at the person rather than the disease and see them for who they are and encourage them to be active if they feel like it or try to get them to talk about how they feel to me or even to someone else.

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I really enjoyed meeting John, listening to his story and experience of diagnosis, living with and managing Parkinsons was interesting and eye opening. I loved that he dealt with it through humour and humility and honesty, it was hard to hear that his songs cannot speak to him about it but he finds strength through his wife and daughter. I think his outlook is really positive, he researches and stays open to new medicines and drug trials and finds comfort with people experiencing the same disease. Hearing him speak about the state of the NHS and how he is cared for at a local level compared to the care and treatment from specialists and nursing staff within the hospital was telling. Going forward as a student nurse and hopefully a registered nurse in the future drives home how important person centred care is for patients and that our knowledge and skills will affect patients in both positive and negative ways...treat people how we would wish to be treated, seeing them as a person and not their diagnosis. I really enjoyed meeting John and hope to hear from more patients experiences going forward.

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I enjoyed listening to the session with John, he was so willing to answer everyone's questions and gave great insight into his life with a LTC.

His positive attitude was infectious. It also showed how he self manages his condition and daily life. His support group seems to have a very positive effect on his life.

John also addressed those around him being unable to discuss his condition and how that has affected him.

I have learnt a great deal about the effect Parkinsons has on someones life and thank John for discussing it with us all.

Whilst in nursing I will carry forward the ability to look at the bigger picture and think of how we can support those with LTC's but also how they can empower themselves.

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John's experience of living with Parkinson's Disease has impacted your learning and role as a student nurse:

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John's experience of living with Parkinson's Disease has impacted your learning and role as a student nurse:

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John's, self-management was empowering. His dedication to

comprehending and managing his

health demonstrated the capacity for

change that resilience and knowledge

can have on a person's journey with

Parkinson's. It acted as a reminder of

how crucial it is to create an

atmosphere where service users feel

supported and equipped with the

knowledge and tools needed to take

an active role in their healthcare.

John's narrative essentially serves as a

tribute to the resilience inherent in

self-determination, the significance of

prompt drug administration, and the

cooperative initiatives between

patients and medical professionals,

His story offers hope to everyone

showing that a happy life is still

possible even in the face of a difficult long-term illness.

long-term illness.

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John's experience with Parkinsons Disease.

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John's experience with Parkinsons Disease.

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I found the session with John really informative. It was really good to hear from his perspective the impact of this disease on him and his family. He explained it very well and in a way were I was able to think about the disease in another light. It has made me realise how much this affects others close to him in a way were they cannot talk about how it has affected them too. It was lovely to learn that he manages his his condition by focusing on keeping active and enjoying his life in a way that makes him happy even when he has down days, he explained he then just picks himself back up and gets on with things. It was very inspiring. I will remember John when working with others with Parkinsons disease and try to offer support when needed and just take time to listen to them as they may not be able to discuss their illness with their family and just be there for them.

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I really enjoyed the session on listening to John's experience of living with Parkinson's disease. It has helped me greatly with how important it is in healthcare to see the person not the illness. Many people can likely hold there hands up and say they have only seen a patient because of their illness or long-term condition. John reminded all of us of how vital it is to see the individual and the positive effect that can have individual.

It was great to see how much of a positive attitude has towards his LTC and how he tries his best not to let it hinder his life.

It did find it a bit upsetting to see the struggles John is facing with his sons coming to terms with his diagnosis and how much he would love to sit and chat to them about it. He made a very valid point on how he needs to respect his sons wishes about not discussing it. I feel this is very relatable to us as healthcare professionals, we need to respect individuals at all times and not let your own person judgement or feelings get in the way of that.

I know it not always be possible to arrange sessions like this, however, I feel I benefitted a great deal more with that real-life interaction of an individual with a long-term condition. It would be great if live sessions like Johns story could be incorporated more within our learning.

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I really enjoyed the session we had with John on Monday afternoon. Hearing John's story directly is invaluable learning and makes a much bigger impact than reading a story in a text book or on a canvas page. I found John's sense of humour and candor very impressive and heartening. Personally, this type of learning is most meaningful to me and I take a lot from it. A key message I took from John was that he is John with Parkinson's disease, not the Parkinson's disease patient and I will remember that going forward. You cannot get better than first hand experience. Thank you John, and thank you Ellie and the university for facilitating this talk.

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I found John's enthusiasm for life and self management of his LTC empowering and inspirational. It was really beneficial hearing his personal experiences and encounters with the NHS throughout his journey from diagnosis to treatment. I learned how important it is to ensure service users who have Parkinson's receive their Parkinson's medication at the correct time, as in John's case it was crucial for maintaining his quality of life.

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I really enjoyed the session with John, his willingness to answer any questions we had was helpful and much appreciated! One part that particularly saddened me was when John spoke about his sons not speaking about the topic of his Parkinson’s disease- to which he understood but due to this felt isolated. He seemed to enjoy attending the support group he has joined and how he could be himself there! It was a touching session and certainly one that has given me more knowledge on Parkinson’s disease. His sense of humour was lovely to see as well! Being able to understand that even through his struggles he tries his best to always remain positive was amazing to see.

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Johns experience with parkinsons disease.

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Johns experience with parkinsons disease.

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Meeting john was a pleasure, it's nice to see someone with a positive outlook on life when they are living with a LTC. As a student nurse I feel like having an experience with john has severly opened my eyes. It was heartbreaking to hear he felt like he was a burden to his family but this is a normal thing for people who do suffer with these types of conditions. Just hearing about the difference he made within other people journey by staying positive has pushed me to become a more positive person both in my day to day life and with personal interactions with anyone. I would like to thank John for being so open and honest with us and telling us his experience with his diagnosis and his journey with parkinsons. He had definitely pushed me to do some more reading about LTC especially parkinson and other types of dementia.