My dad was diagnosed with PSP in May of this year and has deteriorated quite a bit since (we live in the northeast of England) He is now in a care home, and he really struggles to speak as his voice box has deteriorated. We sometimes get a word we can hear, but more often it is a breathy whisper or no sound at all. I’ve made some cards with ‘yes’, ‘no’, I’m hot, I’m cold and other such phrases to try and help, and I was able to get him to point to letters of the alphabet to relay what he wanted to tell me. Does anyone have any advice on what else we can do to try and help him be understood please (especially on the phone).
thank you very much
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Calamity_j
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Hi, it can be very difficult with speech as the is not only the physical problems but sometimes a lack of enthusiasm to try to change.
Firstly, if you haven't already, ask to be referred to a Speech and Language Therapist, they can help with exercises to improve speech and if need be devices to assist.
Some things we have tried are listed below:
Putting on an accent or singing can help, it is using a different part of the brain to instigate the speech.
Doing a large aaahhh from the throat can help engage the voice again as many are moving their lips whilst breathing shallow.
There are personal amplifiers with a microphone and speaker but very often these amplify the breathing more than the words.
If he can still type then there are apps to speak what is typed, there are also more specialist communication aids available through SALT. My wife now uses a Grid Pad thinksmartbox.com/product/g...
As for phone calls the easiest one to do would be video calls where he can use cards or thumbs up to answer questions
Thank you for these suggestions Zerachiel, I will speak to his SALT, and I will try some of your suggestions too. Thank you for taking the time to reply
Just briefly to say that my mother was able to squeeze my hand (one squeeze for yes, two for no), when speech became difficult. It is a bit laborious (would you like a coffee, a tea, an orange juice etc) but it worked right up to the end and I was grateful to spare her the effort of speaking by using this method.
Thank you for the tip. I get my dad to do thumbs up/down, and I try to avoid asking him open ended questions, but I will try hand squeezing to see if he finds that easier than thumbs up/down. Thank you
The physiotherapists have exercises reinforcing trunk muscles to improve the cough response to choking. Engage a good speech/swallow therapist to learn swallowing techniques.
The speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).
pmcdonough1 suggest:
“My husband had PSP and when he started to aspirate when drinking his doctor prescribed Donepezil 10 mg (Donezepil is a cholinesterase inhibitor) . After just a few doses his eyes lit up like there was a light turned on in his head. His swallowing improved. After a couple years when he started aspirating again his doctor increased the dose of Donepezil to 20 mg. His speech therapist was amazed at his improvement. In the United States on the NIH website under Progressive Supranuclear Palsy it lists that ”some PSP patients” benefit from up to 20 mg of Donepezil.
Richard33 point out: “Cholinesterase inhibitors are not recommended if severe motor features are present, as any positive effects on memory may be negated by worsening of motor symptoms. That said, everyone's journey is different and it may help someone where they still have good mobility”.
Let doctor know about the article on the NIH website as a resource.“
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.”
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. LSVT LOUD therapy consists of intensive, high-effort speech exercises. LSVT LOUD involves 16 treatment sessions (four sessions per week for four weeks), as well as daily home practice. The exercises include prolonged vocal phonation with increasing volumes and changing pitch, functional words and phrases with increasing volumes. Throughout the 16 sessions, participants progress through a systematic hierarchy of speech exercises beyond words and phrases and into "outside the therapy room" conversations and transfer tasks.
Although primarily directed at loudness, there are effects on speech intelligibility, articulation, facial expression, reducing hypomimia, respiratory support, and voice quality.
In addition, LSVT also provides benefits in the safety and efficacy of swallowing, improving pharyngoesophageal swallowing function, as well as the effectiveness of involuntary coughing in people with PD.
Hi Calamity, you have raised a very important issue. We thought of cards with words and pictures too as my husband's dexterity is declining along with his speech. Zerachiel's link is very useful and I shall look into it myself. Thank you both. Hope you find a good way to communicate with your dad Calamity. x
We do find it takes him time to pick a card and sometimes it’s easier to point to a hand or do a thumbs up/down. I’ve also printed the alphabet and numbers 1-10 on a sheet for him to point to, so we can spell out a word, but as you say, with dexterity, but also missing letters out, doesn’t always work. We are waiting to hear back from the SaLT, so if she has any further suggestions to the ones Zerachial, Amanda and Luis have kindly shared on here, I will post.
And thank you, and likewise, I hope the link helps you and your husband too x
I totally understand what you are going through as I’ve been there with my mum who sadly passed a few weeks ago.
We went down thd route of pointing at letters, using cards with phrases on, using a white board and pen for her to write down letters, and the speech therapist also arranged for her to use a small microphone which clipped onto her top and was attached to a small amplifier. We thought this was really good but mum refused to use it.
Her communication was mainly thumbs up and thumbs down when her speech went, she did use the chart with letters on for a bit but got frustrated at the length of time it took to convey what she wanted to say
We did devise a phrase book with the speech therapist but it was A4 size and not very user friendly a smaller version would have been more user friendly.
I am in Darlington and found the support from medical field very limited most of my tips and advice I got from this group as once mum was diagnosed everyone seemed to leave us to it. It was only when she needed 24/7 care and had to go into a local nursing home that the speech therapist got involved
Hope my post will be of some help to you as we felt once we got the diagnosis we were left to it - I chased for SALT input, a movement and disorder nurse we saw once but wasn’t really much help, the main person who reviewed meds was the community matron.
If I can be of any support at all please get in touch I wouldn’t want anyone to feel alone when dealing with this condition
I’m so sorry for your loss Walking18. And thank you for your advice. My dad has said he gets frustrated with not being able to communicate. I’ve got him using the alphabet sheet when he is trying to ask me to do something for him. The SALT is sending some picture cards out, so we will give them a try. We are not far from you, my dad is in Middlesbrough, I’m in Stockton. Thank you for your help x
So sorry to hear this. Sadly, my husband was diagnosed in April and his PSP is progressing rapidly. He can no longer hold an upright posture with u step Walker and assistance,his leg and arm rigidity is severe. he can barely use his fingers to use his phone and his speech is gone for a few rare occasional words. We had been using a speech pathologist and still try to do some of the drills.
A long hard Ahhhh as was suggested might limber things up. We do that about 4-5 times pausing in between to take a breath. Tell him to think he is on a stage and needs to project to the audience. If his “ahhh” sound gurgles, stop, do a few hard swallows to try to clear the phlegm and try again. Our next exercise was Mae, Me, My, Mo, Moo. Each word is done on the exhale, loud and drawn out, with a rest in between if needed. Check out the parkinson website Parkinson Voice Project. There are you tubes demonstrating this. Please don’t expect him to do what they do or as fast but it will show the two exercises to give you a better idea
As with the rigidity, you may limber things up to work movement and speech a little for a short time but the exercises will need to be repeated.
As suggested, a speech pathologist would be most helpful.
My thoughts are with you as you navigate this trying time
I’m sorry to hear that your husband’s PSP is progressing rapidly. I’ve spoken to his SALT and she is sending some cards for him; she doesn’t think an amplifier will help him. Thank you for the suggestions, I will give them a try and will look into the Parkinson’s voice project. Thank you and my thoughts are with you too. This forum is so good for offering support to each other, thank you x
Our speech therapist suggested us to try the app Let me talk. I have just started to check it out and I don’t know if my husband will use it. It is a free app. I am willing to give it a try and I thought it might help.
thank you runner333, I’ve downloaded that app on to my phone - not sure he would have the dexterity to use it, but I will give it a try, thank you and take care x
Hey. I’m sorry to hear that. My Dad (we are in West Yorkshire) recently got an iPad from the NHS with software for speaking - a bit like the flash cards you made. Preprogrammed sentences and words- I’m not sure if your Dad has the dexterity for it, but it’s helpful. We also had Dads voice “rebuilt” by SpeakUnique- you can ask for funding from the PSPA so that when they use the software it sounds like them. Dad has also been using a breath trainer to strengthen his throat.
Thank you for this Nicnic7, we are in Teesside. His dexterity isn’t great, but I will look into these suggestions to see if any would help. Thank you and take care x
Speak unique is a good organisation supported by the Pspa you bank your voice ideally at an early stage otherwise they can reconstruct it. The trouble is you have to be computer literate and practice! Also you need an iPad to use the system.
Thank you Bristolgirl, he is nearly 85 and he was able to do simple things like send a text and answer a video call, but I don’t know whether he has no interest in trying, or whether he is unable to press the buttons well enough (I often get an empty text now!). Thank you again x
My dad was helped in swallowing and speech with carbidopa/levadopa also called Sinemet - the Neuro suggested very slow dosages and increased it with time - plz do ask your doctor about it - it doesn't help everyone but it does help some patients
Thank you Tindb, my dad is in a care home now, and we try to make sure he goes to any musical activities at the home, he also has his CDs there which he listens to. I agree, I try to be patient with him and let him take as long as he needs to try and tell me something. My thoughts are with you and your wife
Thanks to you too Calamity_j. I recentely bought a Google Nest device which plays literally all music from internet by command. No more CD´s or vinyl needed which enlightens the life of being caretaker. My thoughts also with you and your your dad.
My wife has taken to listening to music alot, also humming to the tunes. We have an Amazon Echo and have light bulbs which are controlled by it too. I have added phrases to her communication device so she can turn lights on and off and choose to turn music on or radio stations.
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