Throat issue's

[Stevedp]

I'm 6 months post diagnosis with limb onset als. My left foot doesn't work but other than a general tiredness and muscle weakness not to bad. Over the last week or so I've felt like my throat is closing up my voice is still okay which I'm in the process of banking, it's like I need to clear my throat but nothing comes up. My tongue is still flexible and I can push it against all sides of my mouth with force. When I sleep on my side I feel that my shoulder muscles and fat are pressing that side of my throat. When I lie on my back and tilt my head forwards the back of my throat feels like it's closing up. Any ideas people should I be doing anything different or booking an appointment with speech and laugauge or breathing depts. All the best for now Steve

[Ellie]

Stevedp Definitely start with an SLT appointment, Steve, and not a video assessment - you need the SLT to physically feel your throat - if the SLT feels it's respiratory related, you can be referred on.

It may not be ALS related at all.

In bed, I need to have my neck supported by my pillow, or I run into issues. xx

[Piglet]

Stevedp as Ellie has said you need a Speech and language therapist ( SLT) assessment.(just in case you didn’t know what SLT was) xx

[Christopher]

Stevedp
My speech therapist was very helpful in giving on tips on aiding swallowing.
If you do have MND then you are being sensible in voice banking now while your voice is unaffected.
Due to my diagnostic process my voice has changed so much in the last year that there is hardly any of it left and it is such an effort to get words out.

The positive is that the squeaks and crooks I make do make my youngest son burst out laughing as he thinks I’m going through puberty.

I am plucking up courage to do voice banking. But when I do it, it will be an admission that something is wrong.

[Heather R]

Christopher. Go for it, otherwise you’ll be left with an off the shelf voice like me x

[Ellie]

... otherwise you’ll be left with an off the shelf voice like me

Not that there's anything wrong with that...

PS. A relative or friend can 'donate' their voice.

[Christopher]

Speech therapist came for her regular visit today.
Talked about voice banking again.

The MND information sheet offers lots of alternatives, but its all a bit overwhelming with the choice.

My speech therapist said that Speak Unique is very good, then when I looked on the MND site there were a whole list.

Just really need someone to say, "Christopher use this one".

Background - it takes alot of effort to gets words out, so sometimes they are squeaks or whispers. Sometimes when rested I can get two words out that sound like me.

Ellie Heather R MNDConnect

[Heather R]

Christopher I banked my voice with SpeakUnique at a cost of £250 which Mnda kindly paid, but the result was quiet and not very clear, so I found that people were struggling to understand. It was early days for Speak unique and they were trying to improve with feedback. So now I use speech assistant (£19) with an off the shelf voice (Kate) that’s very clear and only occasionally drops a clanger with pronunciation.

[Christopher]

Heather R thankyou.

[Madge]

Christopher I hear how you feel about banking your voice but if you do it now whilst you can then you don’t have to think about it again. I hope you never have to use it. It took me a long time to do but I have and it’s done and dusted now and just think of the nice cake you can treat yourself to afterwards 🍰

[Madge]

Christopher I used “I will always be me” to record my voice. My speech therapist came to my home and sat with me whilst I recorded my voice. Check it out and if you need help ask the SLT team.

[Ellie]

My speech therapist said that Speak Unique is very good

Each product has a minimum number of phrases to be recorded, so hopefully that played into your SLT's recommendation.

Acapela's My Own Voice has a minimum 30 phrases V Speak Unique's 150/reading the 'I will always be me' ebook, and the end product depends very much on the quality of the recordings.

You don't have any voice recordings, do you?

[Hope]

I banked my voice with SpeakUnique using their voice repair. The voice is robotic and like HeatherR I found it was too quiet. I contacted SpeakUnique who increased the volume but I find people have trouble hearing it. I also find the words suddenly end before they finish speaking. I am looking at other apps now and will choose a generic voice.

[Christopher]

Ellie I was about to say that I don't have any voice recordings. But at some stage at the start of COVID I did post a video which had me talking in a very relaxed way. I presume I must have recorded it on my phone. So would that be useful?

Thank you Madge my speech therapist is certainly very caring. She spends most of her time suggesting easier things to eat.

The "I will always be me" looks amazing. Sat here and cried watching it as I cant speak that well. Made me feel more sorry for myself as they all had family around and I haven't really said to anyone what is going on.

Pull my socks up and thank you again for your advice. Big hugs to you all.

[SAMMY88]

I must be the only one who's definitely isn't interested in using my own voice. Being a cockney I'm gonna go for a posh sounding voice.