EXCLUSIVE I am blind and my dad was diagnosed with Parkinson's at 37 - the comments we receive can be exhausting
Speaking to The Apple & The Tree, Hannah, 27, described her difficult childhood – from losing her vision at 7, to learning her father had been diagnosed with Parkinson's disease when she was just 12.
Hannah appeared on the podcast with Brett, 50, who revealed his fear of deteriorating and no longer being able to support his family.
The Apple & The Tree, hosted by the Reverend Richard Coles, brings together parents and their adult children to answer questions about their shared family history.
'When you were first diagnosed, I was really young – it felt overwhelming', Hannah told her father.
'We didn't know much then – about Parkinson's and what the prognosis was like moving forwards.
'I guess it's similar to my condition: someone else who has it might have a completely different experience.'
Hannah, 27, described her difficult childhood – from losing her vision at 7, to learning her father had been diagnosed with Parkinson's disease when she was just 12
'The symptoms are so variable', Brett replied.
'It's hard to take on board what other people with the disease are experiencing. It's not necessarily what I am going through, day to day.
'When the symptoms really kick in and I am having a bad time with it – I do wonder how my family is going to cope.'
The father-of-three's worries are intensified by the fact that he's still raising two young boys, aged 9 and 12.
Both father and daughter spoke about the exhausting impact of strangers' insensitive comments.
'I get silly questions from people all the time', Brett revealed.
'When I am shaking, someone will ask me whether I am cold. Some people assume I am drunk – that happens quite often.
'Knowing it will get worse is hard – I am someone who keeps my fears bottled up inside.
'I had a woman see me shaking at work the other day. She asked why - and my colleague told her I had Parkinson's.
'She had been in the day before and said – I was here yesterday, and he didn't have it then.
'That's the sort of level of ridiculous comments you get.'
Hannah is albino and her progressive loss of sight stems from a rare side effect of the genetic condition.
She also shared her frustration at how the world perceives her disability.
Hannah remarked: 'I know people on the street are staring at me. I worry about my kids getting grief at school for having a mum that's disabled.
'It is exhausting. When I meet new people, I feel like I have to explain myself all the time – it's knackering.
'My eyesight is complicated. I haven't got twenty minutes to give someone a bloody science lesson every time they ask about it.
'We live in a culture where everyone feels they deserve to know everything about you.'
When asked by his daughter what his greatest fear is surrounding his condition, Brett described his worry at eventually not being able to provide for his family.
'My biggest worry is how long I will be able to work for', he revealed.
'How long I can support my family before I have to pack it all in and they have to support me.
To listen to the full discussion, where father and daughter exchange their experiences of disability, search for The Apple & The Tree now, wherever you get your podcasts.
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