My brother in law is in his late 50s and has lived for a number of years in Mencap supported housing, which we are really pleased with. He has recently been diagnosed with Parkinson’s and I wondered if there was anyone else out there in a similar situation? He has never been formally diagnosed with autism, but with unspecified learning difficulties when he was 5 (i.e. in 1964). He is receiving good care from the NHS but it’s difficult for him to tell us how he is feeling, whether he is in pain etc. Would just like to make contact if there are others out there in the same position. thank you Ruth Boaden
Hi @Ruthb welcome to the family hub It can be really hard when a family member is diagnosed with a condition like Parkinson’s. Combined with their long-standing learning disability it can be difficult to know how it will affect them and how they will be able to communicate what they need. How does your brother-in-law usually communicate pain/discomfort? (e.g. if he has a headache, stomach ache?).
Also - your partner may be interested in going to a sibling support group to meet others. Have a look at https://www.sibs.org.uk/support-for-adult-siblings/adult-sibling-support-groups/
Hope others on the family hub in a similar position can share their experiences.
Welcome to FamilyHub
Does your brother get any support from Parkinson’s UK? They have local support groups which might be helpful and also local advisers who may be able to offer help with specific questions you or your brother have.
Do you know if your brother sees a Parkinson’s nurse? It would be really good if he did as they know loads about Parkinson’s can build a relationship with him.
I hope other people in a similar situation get in touch
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