Living with deafness and Parkinson's - Carole's story
Carole lost her hearing when she was a baby and was diagnosed with Parkinson’s a year ago. She shares her story.
My name is Carole and I am 69 years old. I live alone in Herne Bay, Kent in a lovely flat. I have a close family although they don’t live nearby, apart from my sister, Janet, who helps me with hospital appointments.
When I was 12 weeks old I got whooping cough, which led to me losing my hearing. A year ago, I was diagnosed with Parkinson’s.
Diagnosis
I had been experiencing motor symptoms for a while. I had an arm tremor and my walking pace had slowed. I also had a general lack of coordination.
Accessing healthcare as a Deaf person is a nightmare and was particularly difficult in the pandemic. I was having to rely on a friend to try and get me an appointment with my GP. It meant I was really struggling but I didn’t want to keep bothering my friend.
After many cancelled appointments, I eventually got told I had Parkinson’s via a specialist at the hospital. That’s been followed up by appointments with Parkinson’s nurse.
I had a little knowledge of Parkinson’s because my uncle had it. I was shocked when I found out that I had it too, but it answered a lot of my struggles which had included me having to stop driving.
Medication has improved my symptoms considerably. I sleep much better now, my tremors are less and my walking and concentration is much improved.
An interpreter...is vital for me to fully understand what is going on. But it can make the appointment more pressurised as I often forget some of the topics that I need to discuss.
Challenges
What challenges do I face as a Deaf person living with Parkinson’s? I can lip-read, but learned British Sign Language (BSL) when I was 16 to help me improve communication. This means I can’t have idle conversations with medical professionals or specialist support. All my conversations have to be structured and a BSL interpreter booked in advance.
Even the tick box exercise I have to complete at appointments must be translated before I can answer truthfully and with clarity.
An interpreter then, is vital for me to fully understand what is going on. But it can make the appointment more pressurised as I often forget some of the topics that I need to discuss. Janet has also stepped up to be at all my appointments, which has been invaluable.
I rely on writing but now I have Parkinson’s, it takes me much longer to write something. I do use a smartphone and a computer, but sometimes even managing my phone can be an issue especially because of my tremor.
Of course I worry about the impact of these barriers as my cognition has slowed . I was once able to look at a message and understand it. Now I need time to consider what it means and how I need to respond.
The challenges then are many, but not always so different to others living with Parkinson’s. My diagnosis has taught me to slow down and stay calm, not to take too much on and pace myself.