Parkinson’s local advisers can offer practical and emotional support to you if you’re living or caring for someone with the condition. Here, we meet Sarah, who talks about the support she and her husband John* have had.
John was diagnosed with Parkinson’s in 2018. In some ways getting the diagnosis was a relief for us both, after not knowing what the symptoms were for a long time. We joined a Parkinson’s UK local group shortly after, where we met Cate, a Parkinson’s local adviser. She gave us some information to read and sent more out to us.
Things were difficult at home. I felt like I’d been catapulted into a new way of life that I wasn’t prepared for. I was frustrated with John – I was willing him to do more, whether it was join an exercise class or contact his friends more. But we both had different approaches and it started to affect our relationship.
John found it a lot easier to accept ideas and try things out when not coming from me. I’d probably been nagging him a bit too much!
Cate suggested a home visit, to talk to us both about the condition more and see if she could offer any further support.
She came to see us for an hour and she was fantastic. She was so friendly and had a great sense of humour, which really put us at ease. Having her in our home helped us open up to her. She went through our questions and gave advice and tips on everything, from driving right through to diet.
Cate recommended a singing class for John. He found it a lot easier to accept ideas and try things out when not coming from me. I’d probably been nagging him a bit too much! The classes helped him get out and about, and he still does them now over Zoom.
Cate helped us realise that a lot of the problems we were going through were normal and that things can change in a relationship when something like Parkinson’s happens.
Following the visit, Cate offered us emotional support over the phone. She helped us realise that a lot of the problems we were going through were normal and that things can change in a relationship when something like
Parkinson’s happens. Since meeting her we’ve had relationship counselling through Relate, which was another one of her suggestions.
Cate also talked to us about welfare benefits, and helped us find out what we were entitled to. This included Attendance Allowance, a benefit that helps pay for your personal care if you’ve reached State Pension age and have a disability.
She’s really helped us to think of and try new things that we just wouldn’t have done otherwise. It has been a brilliant help and we would encourage others to get support from their local adviser if possible.
Cate Scally explains more about the local adviser service:
Parkinson’s local advisers have a wide range of knowledge and expertise about Parkinson’s. We can offer both emotional and practical support.
Maybe you’ve just been diagnosed and are looking for advice and information, or you’d like tips on how to deal with the day-to-day impact of Parkinson’s. Perhaps you need support for caring for your partner or family member.
Whatever aspect of living with Parkinson’s you need support with, we can try to help. If you need support, please contact our helpline. Our helpline advisers may be able to help in the first instance, or put you in touch with one of our specialist teams, including a Parkinson’s local adviser. Call us on 0808 800 0303 or email [email protected]
*Names changed to protect privacy.