Hi, my mum was diagnosed with PSP last summer but was having symptoms for around 2 years previously. When we got the diagnosis everything made sense. I had never heard of PSP before then.
I just wanted to ask if anyone had gone down the route of voice banking and is its a useful thing to do? Do all with PSP eventually lose their voice? Thanks
For my husband, the symptom that made him agree to see a doctor, was that his speech was slurred. This was Spring 2021 where despite COVID vaccines appearing, we were not socialising much and the speech issues seemed to progress very quickly. We were helped by the PSPA and the Hertfordshire SALT team to do the voice banking summer 2022 and the "Speak Unique" software was able to repair the voice better than I expected.
He has "played with" the app but not been able to use the app for conversations, because his word finding and typing skills have dwindled. I still imagine it being useful in future with some set phrases.
Meanwhile we are still going the "use it or lose it" route with the LOUD exercises to keep his voice audible - it works in good hours and much of the time we use hand signals and lipreading and there is frustration and shouting.
So - voice banking won't do miracles but it's worth doing; the loss of voice is such a profound loss.
I am really thankful that we have the voice banking so I can be reminded what my husband's voice sounds like.
Have all the conversations you need to have as soon as possible - some PSP patients keep their voice but I believe it is the exception.
Best wishes, hope and strength 🍀🌻🤞
Hi Bergenser,
Thank you so much for your detailed reply - I truly appreciate it - I don"t what to expect so that really helps. I was wondering if it would be needed but now think I should ensure we get this sorted out while we can. She is getting pretty apathetic now and has to be pushed to make conversation but she can.
Once again, thank you so much
Best wishes and lots of strength to you too ❤️
Hi, like Bergenser, my wifes first symptoms included soft/slurred speech around 2020, her voice has now all but gone. She uses a smartbox device to talk and we have to make do with one of the generic voices which work for communication but are nothing like her natural voice; we wish we had banked her voice but didn't find out about it until it was too late.
Hi Zerachiel,
Thank you for replying and sharing your knowledge with me. I really appreciate it as this all still feels very new to us as a family. I will definitely get this done.
Wishing you lots of strength ❤️
hello, we left it too late so the sampling sentences for speak unique were too complex for my husband to read, understand and then speak. We will be using a generic voice. However we have recorded a few snippets of his own voice saying his common phrases, calling the dog, asking for a pint, suggesting coffee and a piece of something evil. At least I have a few reminders of what he sounded like.
Good luck, do it NOW!
HiMy voice was one of the symptoms of my diagnosis of PSP. I have never been 'loud' but it was becoming so soft along with the stuttering of certain words. I did have speech therapists and they helped initially but then they accepted that maybe voice banking was the way forward. I banked my voice using Speech Unique. I had a total of 300 words and phrases to read out. If I wasn't happy with them I could go back and redo . It was tiring but I completed the task. Once I downloaded the app on my phone within days it was up and running. This was funded 100% through the PSPA and my speech therapist had to authorise my application. I do use it when meeting new people , you can save phrases which is useful and does save time. My only regret is that I didn't bank my voice earlier as it doesn't sound quite like me but it is better than nothing.
My mom's first symptom was her speech deteriorating. It started end of 2019, by 2021, it was totally gone. By the time we realized this symptom was PSP, it was too late to bank anything. I wish we had done that, but i am not sure how long it would have been useful, as her motility was also going at the same time. It never occurred to us there would be a time, and, quite a long time, that she wouldn't be able to point to what she wanted or do a thumbs up. Using a communication device is impossible, and has been for well over a year.
Yes this was the he same for my husband. SALT visited us and noted his speech was effortful and hesitant but she never mentioned technology. I think she felt he was past the point of being able to voice bank. She gave us a plastic a4 laminated sheet like a
Keyboard so he could spell. He couldn’t use a phone or keyboard due to eyes movement issues and dexterity as his fingers were already losing sensation. I wish I had more videos of him talking on my iPhone. My husband’s speech dried up a few months later and now can barely hold his thumb up for yes 😢
What an excellent post! Yes, Yes, YES!!! My husband, John, passed three years ago. Afterward, a number of people posted that they wished they had made videos and recordings of their LO, etc. I had plenty of videos but never thought of recording his voice. I had a landline for years, and in the end, I kept it specifically for hospice, caregivers, and doctors to use. After John's passing, I planned on getting rid of my landline. Combing through my account, I discovered ten VM from John, pre-PSP. What a wonderful treasure!!! It was him. Articulate, the quick cadence of his voice, and him telling me how much he loved me. I just sat there and cried. I have paid that $10/mo. fee only because I have not found a good medium to transfer these priceless treasures. Someone just recently suggested that I transfer the VMs to a voice-recorded Build-a-Bear. Open to other ideas.
We did all the speech therapy, and that ultimately helped with swallowing in the later stages. John never lost his voice until the end, but his speech was slow, slurred, and whisper-like. The treasure trove of discovered VM's is the most priceless thing I own.
Wishing you strength and courage on your journey. Alice♥️
Not the best way, maybe, but I recorded the landline message onto my cell phone, just through the camera app, before the kids wiped it. (I try to keep everything. They are surely wiser.)
I'll give it a shot! Thanks!! Hope you're doing well.
Hi Alice, thank you so much for your message and sharing your experience. I am definitely going to do my best to capture what I can - the thought of not hearing her voice is quite sad and I don't want to take it for granted. I really appreciate your time. Thank you ❤️
PSP Awareness... long winded
My Mum, Me and PSP
Delayed psp diagnosis 
Clinical trials for PSP
Zolpidem for PSP
