From my primary research, I have decided to aim my project at the younger people living with the disease. I will now be researching further into this area and exploring the support and publicity it gets at the moment to find out what more I can do with my work.
The diagnosis of young-onset Parkinson's disease is the same as idiopathic, or typical, Parkinson's disease except for the age of the patient. The average age of diagnosis is around 62. When an individual is diagnosed with PD before the age of 50, the disorder is called young-onset Parkinson's disease.
First, people who are affected by Parkinson's at a younger age experience the disease differently – they may be parents of young children, they may be at a different stage of their career and less able to deal with the challenges of a disabling condition, and they often have less time to engage in their own care. If you develop Parkinson's under age 50, your peers are more likely to be healthy and may struggle to deal with your illness more than an older group. Also, your doctor might not be familiar with Parkinson's.
Second, younger people are different from a medical and scientific perspective. The younger you are, the more likely it is that your disease is genetic or caused by exposure to a specific toxin. Younger people have younger brains; if you have young-onset Parkinson's, your brain may be more responsive to exercise or other treatments that rely on your brain's ability to adapt to change – what scientists call "neuroplasticity."
Because of these issues, different scientists will refer to young-onset Parkinson's as starting at 40, 50 or even 55. Scientists focused on the social aspects of Parkinson's – dealing with job stress and families – may use 50 or 55. Scientists focused on genetic Parkinson's often use a younger age as the cut-off, typically 40. A group of patients who had onset before 40 is very likely to include people with genetic Parkinson's.
Key points from research:
- Young-onset refer to people in their 40's and early 50's
- The focus is on balancing life with the condition. e.g. work and family
- Young-onset people will have more going on in their life, more responsibilities
- less able to deal with the disability condition because of those reasons
- Have less time to deal with their own care
Social Media Presence
Parkinson's UK alone have a page on all the major social media sites such as Facebook, Instagram and Twitter. This helps younger people to engage with one another.
Below are some screen shots of the Parkinson's UK Facebook page. At a first glance, it is obvious that the emphasis is aimed at older people. This is evidenced in the photographs as they mainly feature older people.
The banners below are part of a campaign that has recently been running on their social media. The slogan of the campaign is to 'make history together' however in my opinion the tone of voice is all wrong. The images almost make you feel sorry for the people featured in them as they look depressed and down. I think this needs a lot of improving as the images should be about hope and togetherness. The average age of the people featured isn't too old but they should feature at least one younger person to lower the average and represent the younger people living with the disease.
Images such as the one below are a lot better as they communicate positivity and progress as opposed to making the viewer feel sorry for them. This is something I want to achieve through my own investigations.
The cover image is an example of some of the worst graphic design I have ever seen and it only emphasises the neglect that the disease gets in some aspects such as social media.
Below is a T-shirt that is sold on the Facebook page that says 'I wear grey for Parkinson's aware'. Despite the awful design and misspelling of a word, the fact that the colour they chose was grey is beyond me.
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