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Sue’s story


After being diagnosed with PSP in December 2021, Sue Connolly used the PSPA Voice Banking Funding to access SpeakUnique’s voice repair service. Here Sue shares her voice banking experience.

“I had been ill for a few years and had been back and forth to my GP a fair bit. I knew something wasn’t right but at first, I was diagnosed with stress, then depression.

I knew I wasn’t depressed but it felt like a bit of a battle to be completely heard. Walking began to make me feel like I was drunk on a boat, with the ground constantly moving. So, I persisted and kept going back until in November 2020 I was diagnosed with Parkinson’s.

As my symptoms progressed, my diagnosis was changed to PSP in December 2021. The Neuro team helpfully put me in touch with PSPA, where I joined the Newly Diagnosed Group. I also joined my local PSPA Support Group, which is where I heard about the PSPA Voice Banking Funding.

One of the carers mentioned it earlier this year. Unfortunately, her husband’s voice had deteriorated too much to access the service, but she encouraged me to look into it. Although my voice is weaker in the afternoons, I can still speak well in the mornings. I liaised with my speech and language therapist (SLT) who successfully applied for the funding on my behalf.

After I had received the funding, my SLT put things in motion with SpeakUnique and she also ordered a Smart Box (tablet type device) for me to use. When the Smart Box came, my SLT came around and set it all up for us and helped to show me how to use it.

Since February 2022, physically I have not been as strong. As well as affecting my walking and balance, I have also been unable to use my dominant right hand. I now use my left hand. I’m still quite slow typing on the Smart Box with my left hand which is really frustrating as I used to touch type.

Once I knew my way around the Smart Box I set to work with recording my voice. The process was quite easy. I recorded around 300 sentences, this was around 15 sentences a day, so overall it took a couple of months to do the whole recording process.

I purchased a set of headphones with a microphone attached to help with recording my voice. The clarity of the recordings was pretty good.

You do get a choice of books to read from. There’s a good selection, everything from Peter Rabbit and Harry Potter, to Sherlock Holmes and Jane Austen. I love Jane Austen so initially picked one of those books but the length of sentences and style of writing made it quite difficult to read aloud from so I then swapped to Peter Rabbit, which was easier to read.

Once my voice recordings were completed and ready to used I experienced mixed emotions. I know it will help in the future when my voice becomes weaker, but it is strange hearing your voice back and I don’t 100% feel it sounds completely like me. This is natural since it is a voice repair service but it is still quite strange to listen to.

I really enjoy using the emojis to have a bit of fun with the grandchildren. I also know you can record and save frequently used phrases and questions so make use easier and quicker during things like medical appointments. Although I’ve not practiced using it much yet. I’ve been quite busy with some house adaptations and family commitments, but I aim to start practising on a regular basis from May onwards.

I would definitely recommend using the PSPA Voice Banking Funding but I would advise to look into as quickly as possible after your diagnosis, as you will never know when your voice will become affected.”

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