All you need to know about Parkinson's ...
Hugh Robinson shared his inspirational personal journey with Parkinson's at a talk in our Home Instead Horsforth office.
Experience and expertise shared to support others with Parkinson's by Hugh Robinson
Parkinson’s is a progressive neurological condition. This means that it causes problems in the brain and gets worse over time.
60 year old Hugh Robinson has kindly shared his personal experience of living with Parkinson’s with Home Instead at the Horsforth Office in West Leeds. He is inspirational in his fundraising and fearlessness in the face of his diagnosis.
What symptoms did you first notice physically that others could look out for?
Hugh’s personal symptoms:
• Producing excess saliva
• Shaking: Left arm shook
• Poor posture – sense of stooping
• Loss of movement: Left arm stopped swinging
• Fatigue
There are up to 40 symptoms of Parkinson’s and the rate at which they develop will vary from person to person, however, the most important thing if you are worried that you have Parkinson’s is to speak to your GP.
For more information on symptoms follow the link HERE:
What was the process prior to diagnosis?
• GP visit in 2019 when the symptoms had become more noticeable.
• Check up to find out if symptoms were muscular or neurological.
• Neurological diagnosis was established by physio and then further tests with a specialist to check if Parkinson’s.
• On diagnosis medication was established to relieve symptoms and to slow down progression.
What exercises do you recommend to help people maintain strength, mobility and mental health?
Hugh has a busy schedule of activities which are low cost or free since his diagnosis in 2019.
We’ve included the classes below which Hugh has joined where they have specialist support for those with Parkinson’s:
• Pilates
• Nordic Walking
• Boxing
• Tennis
Pure gym providing free membership in 2024 to members with Parkinson’s.
What would you say was the most valuable advice you’ve received?
Hugh’s advice:
• Get Positive: Positive Mental Attitude from yourself and support system is needed to move forwards once a diagnosis is received.
• Get financial advice and support: Contact Cate Scally, Parkinson’s Leeds for help with this. Apply for a Personal Independence Payment (PIP). You can receive reduced Council Tax and your carer may be entitled to carers allowance once PIP is established.
• Get Professional advice: sign up to online and in-person Parkinson’s support. We have included some useful numbers in the summary.
• Get the Parkinson’s ‘ON APP’: other apps available.
• Get active: The key to Hugh’s physical and mental coping strategy.
The immense Power of Positive Thinking ....
Over the last 5 years Hugh has challenged himself to achieve many fundraising milestones, raising over £5000 through the following activities: skydive, three trek’s up Ben Nevis in Snowdonia, walking with Llamas in Nidderdale and dry stone walling in Otley.
When asked about his fundraising achievements Hugh said: “I’ve got Parkinson’s, but Parkinson’s hasn’t got me”.
What else can you suggest from your experience to support others in their daily lives?
There are simple things like lego, jigsaws and listening to podcasts to relax and stimulate. Hugh recommends the Movers and Shakers Podcast which is both funny and emotive. Definitely worth a watch: Movers and Shakers: a podcast about life with Parkinson’s on Apple Podcasts.
Movers and Shakers finds six friends – Rory Cellan-Jones, Gillian Lacey-Solymar, Mark Mardell, Paul Mayhew-Archer, Sir Nicholas Mostyn, and Jeremy Paxman – gathered in a Notting Hill pub to discuss the realities of life with Parkinson’s and maybe find a few silver linings!
Where would you sign post someone with the early signs of Parkinson’s locally?
Hugh suggested the following places to find out more and get support and advice.
Cate Scally for Finance advice: 0344 225 3766 (Leeds)
Parkinson’s Leeds Branch Chair: Carol Cook: 01943 513607 Email: [email protected] (Leeds)
National website: Parkinsons.org.uk
Facebook: Parkinson’s Leeds Support Group