Mom Recently Diagnosed 😢 Wondering about Speech Cloning/Voice Banking

[ThankfulFish]

Hello everyone. My mom was diagnosed with PSP on May 31st of this year but has been experiencing symptoms for about two and a half years now. She is only 56 and this disease feels unbearable in its cruelty and its early onset. We have been very lucky so far that she still has her speech and personality, and some mobility with a walker. My dad, myself, and my two siblings are all providing care along with home health aids that we started last week as someone needs to be with her at all times to help her if she falls or get her water. She has specialists and regular therapy as well. It has been incredibly hard for us all to learn about the prognosis of the disease. Its too soon to lose her, and this is no way to die. The tragedy can feel crushing sometimes. She is a really wonderful mom.

I just found this forum and it is comforting to see that we are not alone, helpful to see so many experienced recommendations, and depressing to realize the reality of what progression is going to look like. Thank you for your company and advice.

I am sure I will have more questions in the future but my question now is: do any of you or your loved ones use voice banking, AI voice cloning, speech replacement software, etc to communicate as speech has become more difficult? What program or tool do you use, how did you get started, and does it work well for you?

I really want to help her start voice banking now so that she can still communicate with us in her own voice in the future, and I have read about Representative Jennifer Wexton of Virginia who also has PSP and has been able to "clone" her voice with AI technology so that she can give speeches on the House floor again.

It would be so amazing to help my mom with something like that. However, I am also concerned that her fine motor skills will decline enough that she won't be able to type (which she already struggles with) so I was wondering if anyone has ideas or experience with ways their loved ones with PSP can still use alternative communication technology to speak without declining motor control. I know that it is often the fate of this disease to be silenced or locked in by the end and I desperately do not want that for her.

Any advice would be wonderful. Thank you so much and God bless you all.

[Bergenser]

Hi ThankfulFish

I’m sorry to hear your mom has PSP - and at such a young age. She is lucky to be surrounded by family to help and support her.

The loss of speech is a very cruel aspect of the condition.

My husband banked his voice with Speak Unique - sponsored by the PSPA (in the UK). It sounds like you are in a different part of the world - the Speech and Language therapists should be able to signpost the best route to voice banking for your mom.

You are right to worry that the “text to speech” applications become hard to use with a loss of dexterity. Still, many regret missing out on doing voice banking while the voice is still there; I strongly believe it is worthwhile.

You can see some replies in a previous post healthunlocked.com/psp/post...

hope and hugs, Bergenser 🌻🤗

[Pspuser]

Hi ThankfulFish,

I suspect you live on the otherside of the pond to me (UK).

As Bergenser mentioned, in the UK ‘SpeakUnique’ is paid for by the PSPA, I suspect, but don’t know, that this is only for UK residents.

We have banked my wife’s voice, I didn’t think the ‘repaired’ voice was much better than her own voice at the moment, but it could be useful if her voice gets much worse.

We haven’t used it much, we are waiting for an appointment with a trained therapist to demonstrate devices to use it with. However, SpeakUnique have an app that lets you set up sentences and phases that can be put together with a few touches.

If you have any voice recordings then you can enter them in the app, and it will use words from there, rather than the repaired ones.

I hope this helps

[LARWLSN]

Hello,

There are several programs easily found by searching online - I spent time digging around but realized teaching my mom how to use it, even at that stage, was going to be too hard and frustrating for her. If your mom is good with techy stuff, I encourage you to voice bank and do it as soon as you can. The part about this disease you will hear over and over is, the situation changes often and without warning. There are so many things I tried to do to help my mom, but by the time we got going, it was no longer useful.

[messier]

I certainly wouldn't discourage you from doing this. But be aware that while it is great for some, others are not able to use it when their voice goes. The problem is that progression is very variable. If the voice goes early while fine motor skills or eye movement are OK so the machine can be controlled then it can be good. For others the eye movements and fine motor control are lost before the voice. Then when the voice goes there is no way for the person to control it. Also the brain's ability to find the right word can go. My mum could speak quietly until just a couple of weeks before she died. But she often said the wrong word for something and I had to help her out, or it took her a long time to formulate what she wanted to say. There no way her brain could have retained that long enough to instruct a machine too - it's called loss of executive function. If I was out of ear shot and asked her to repeat something when I turned back moments later she often forgot (while still remembering all sorts of details from the previous day, week or years). She lost ability to control her eye movement early, and for most of the time could only just about press a large buzzer. There are many things with this disease that you just have to experiment. There are many times where I bought something that I thought would help but just didn't work for her, or I searched and searched and eventually found the right thing only for it to no longer be useful after a few weeks or months as her symptoms progressed.

[timbowPSP]

Hello and welcome good swimmer! yes, this whole thing is a bugger and sure keeps me on me toes. Am male 82, diag 6 yrs ago, and still pretty active and able. Have made regular Updates of info, news feelings and advice. Happy to send you a copy, but need ur pers email, as latest 6 pages to bulky to send on this method. Hope you OK with that? est wishes, and 'Please Stay Positive' = PSP. All best TimbowPSP

[Richard33]

ThankfulFish,

I think Messier's sensible reply above shows the problems ahead and why technology may or may not help. Ruth did a LSVT speech course with the SALT - daily sessions and then weekly - to build up the volume and clearness of the speech. It definitely helped for a year or so.

On a general note, Ruth was diagnosed at 57 in 2016 and is still with us today and has reasonable quality of life still. It may be too late, but do go on all the holidays you can afford now and enjoy the moment. We did 6 all -inclusive holidays after she was diagnosed, even though she was in a wheelchair. But otherwise just AirBnb's - just checking for steps etc...

Richard🙂

[LuisRodicioRodicio]

Hi Thankfulfish!!

Communication:

One of the symptoms of PSP is that its speech becomes slower and more difficult to

understand but generally its intelligence remains. I reproduce some reflections of Kevin_1:

-As the illness develops their mental processing becomes slower. That is they think slower,

but they still think as adults and draw on a lifetime of experience and most likely using all of

that wisdom which comes with it. So the way to speak is in a straight forward manner, not

fast, simple language, but not slow as if talking to an idiot as in a movie, and to give them

time. Ask them of they understand if it is complicated and if they want you to clarify anything.

This is basic good communications practice. It works.-

For a time we attended sessions with a speech therapist until the disease progressed and no

advantage was obtained.

On our case, we intend an App but It was not possible to use it for more than few months. As

her dexterity deteriorated, she had problems placing her finger on the appropriate word or

letter and we were able to buy a plastic screen cover that had an opening for each key on it;

this helped to direct her finger and keep it one the right letter. Another problem she

developed was the inability to tap her finger in a key or letter, and as such she would often

have several letters in a row. For example if she tried to tap the letter A, it would show as

AAAAA because she could not get her finger off the letter A quickly enough.

Some have successfully used for some time a cheap iPad plus free software text-to-talk

program called Claro (claro.com) with a BigKeys keyboard that attaches to the iPad through

an Apple device that is used for connecting to camera to an iPad . A voice comes from the

Claro program. It is like a GPS voice.

Zerachiel contributed this idea:

“It might seem a little odd but did your mum enjoy singing in the past? If so have a try at

getting her to sing what she wants to say, like in a musical; Because it is not automatic

speech it can work as it engages a different part of the brain.”

ncgardener799 contributed this alternative:

“We have made basic sentences on strips of paper and laminated which we punched holes in

and attached to a large key ring. We used large bold print. Things like, I´m Hot, I´m cold, I´m

hungry, I need to be changed, I need to drink. I´m tired, I´m in pain, etc.”

When verbal communication becomes impossible and even gestures of affirmation or denial

with the hands, tongue, etc. represent a remarkable effort on the part of the patient and the

caregiver, a remarkable range of groans and moans have appeared that the patient emits

with great frequency and persistence, even in dreams during the night.

On our case we have used a plastic laminated A3 sheet with the alphabet in large letters

(40x40 mm) supported on a music stand at the height of the patient´s eyes. She points to the

letters and another person writes on a blackboard the letters that patient indicated.

Chart 1

You can also prepare “communication panels” with the alphabet and some pictograms that

patient can be marked with a pointer. Up to the present time it is the best system we could

find. Over time the pictograms become useless and it is necessary to use only letters, as

large as possible.

Chart 2

Speak to the PSP patient as you would anyone else. When it comes time to ask a question

try framing it to a yes or no response. It´s not that the question is hard to understand but

forming/finding the words for an answer may be difficult.

The communication with a patient of PSP is one of the most difficult problems to overcome.

When the patient can still verbalize it is important to know that saying NO requires less

muscular effort than saying YES.

When verbalizing is almost imposible and the “communication panels” don´t work, to say

YES by showing the thumb from the fist and saying NO by hitting the fist on a surface could

be a solution. Alternatively taking the ”more active” patient´s hand and establishing that a

squeeze is YES and no squeeze is NO.

There will come a time when the answers are slow and even erratic. In this case, it may be

better to prepare the patient and tell that you are going to ask for a response later to a

question that you are verbalizing at that moment. When the disease progresses, the

response is slower, until making a thumb gesture or squeeze your hand may need at least 20

seconds.

To write down a big YES, NO on a sheet of paper and the patient could point to the correct

one seems to be a good alternative.

“Doingwhatican” proposes a simple method of communication:

“Hand-squeeze and other techniques can be developed by people with PSP and carers

working together to develop a system that suits them. In its simplest form the carer goes

through the letters of the alphabet and the person with PSP squeezes his/her hand at the

right letter. A more sophisticated version can be used, where a double squeeze takes you

into code where one squeeze in each letter of the alphabet has a meaning such as “I am

hungry”, “I am tired”, “Shut up”; or other simple phrases that may be helpful…”

When all fails, sticking out the tongue to indicate “YES” can be a solution.

Recently there has been an information related to ALS: Voice “Message Banking” (Susan

Mast ALS Foundation) that may be applied to patients with PSP.

youtube.com/watch?v=WCkjbiD...(Not working as expected?)

La “Salle IRF” and “wobblybee” reports about a voice treatment fot PD (Parkinson Disease):

Lee Silverman Voice Treatment (LSVT LOUD®) is a popular voice therapy that has been

shown to improve voice loudness in people with PD for up to two years after treatment.

karger.com/Article/FullText...

Loss or deformation of the voice. Golden 63 points out this alternative in anticipation of a

loss or deformation of the voice:

“I saved my voice using Speech Unique. I had a total of 300 words and phrases to read. If I

Wasn´t happy with them, I could go back and redo them. It was exhausting but I completed

the task. Once I downloaded the app on my phone, I Within a few days it was up and

running. This was 100% funded through the PSPA and my speech therapist had to authorize

my request. I use it when I meet new people, you can save phrases, which is useful and

saves time. My only regret is Not having saved my voice before because it doesn´t sound like me, but it´s better than nothing.

I hope to be useful

Hug and luck.

Luis

Note.- We have a part-time hired person to perform exercises, personal hygiene and dressing.

Another person lives with us. Those two people help me a lot regularly and the children help

whenever they can. Also we have some collaboration from close friends.