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mik
20th March 2015, 23:44
Hi all,
I know some of you guys have lost your voices and i think mine is starting to go. I am scared of this happening more than i was of losing any limb. After 6 years its the only thing thats not been affected until now. I was hoping someone who has lost their voice might share what happened when it started.
thank you,
mik

Candle
20th March 2015, 23:55
Sorry to read this Mik. I know you already have more than enough to cope with. Mum's voice changed before we even realised there was anything wrong with her - she sounded like she had mouth ulcers. This progressed to difficult to understand but being able to make the right mouth movements, before even that went. I know a gentleman with MND who just got quieter and it was only close family who knew what he was saying.

I'm sure Joyce and a few of the others will be along with their experience, although I think it may be different for you as it is presenting later than it did for them.

The only reassurance I can give from our experience is that we were able to communicate either through software or speak book. I don't know if you have eye gaze but there's quite a lot of technology out there.

willsandco
21st March 2015, 00:08
My voice started going slurry, Mik. I couldn't seem to get the air to finish sentences, It sounded more nasal and, on several occasions, people thought I was drunk because they thought I was inebriated. I started seeing SALT in January 2014 and it was starting to play up then. When I got married in April, I could still say my vows. By October it had gone completely. If you are concerned about it and your wife agrees with you that there has been a change, no matter how small, think about voice banking. I know barry52 has just been up to Edinburgh to do that very thing so if you pm him I am sure he will give you details. I hope, for your sake, you aren't right. If you want to pm me, please do. I have kept a comprehensive daily blog since November 2014 and written updates for SALT before every appointment so I have more information at hand - if you want it! Much love. Joycie xx

Ciaramcmc
21st March 2015, 01:05
Joe's voice has also started to go. He chatted to the consultant last Friday and told her it seems much lower. I added that words are also slurred/unclear and he was quite shocked. He hadn't noticed. What is voice banking??
CiaraX

Jock
21st March 2015, 08:54
Mik - I've still got some voice, but not a great deal. You may find, as I do, speaking slower and more deliberately helpful in terms of being understood.

willsandco
21st March 2015, 09:03
Hello Clara. Voice banking is when you record your own voice - if it is danger of disappearing. Then you can record all manner of normal phrases to put on whatever application you have for text to speech. I did sit last year and record some funny stories for the family for posterity on a dictaphone but by the time I got my predictable by therapy app, it was too late. So if you are thinking about it, make an appointment with a speech therapist, sooner rather than later. You could always contact barry52 who has just recorded his voice in Edinburgh. I am sure he will advise you. Worth looking into perhaps for Joe. Pm me if you want more information. Love. Joycie xx

Bilando
21st March 2015, 09:46
Hi Mik, Model Talker is an American University project where you record approx 1600 short phrases at home over a period of days. There is no charge but they appreciate a donation of $ 20 - 100. The support re questions is quick by email and the resulting voice is good. If you decide to do it your can start very quickly. Once you have recorded your voice you can download it as often as you wish onto new tech ology as you need it.
I also suggest that you ask your SALT to refer you for an anticipatory assessment provided by your regional AT & AAC centre. New service started JAN 2015 with £ 15 million to spend each year going forward. The hardware is progressive ie touch (for those that can), then switches or head mouse to control your tablet then eye gaze if necessary. The correct hardware from the onset allows you to learn then retain all the software that can provide you with Internet & social media, mobile & land line answering, TV and environmental controls, Windows 8 if you want it etc etc. You could even paint with Eyegaze as the lovely Sarah Ezekiel does ! PM me if you need more.
AT - Assistive Technology, AAC alternative & augmentative communication. Keep, strong ! Ian

willsandco
21st March 2015, 09:48
Hello Ian. Thanks so much. That is really useful information for us all. Hope you are doing ok. Love. Joycie x

GrannieAnnie
21st March 2015, 09:50
I agree with Joycie, I did not think about voice banking and now can't remember how I used to sound. I know somewhere on our holiday videos there will be odd comments but I cannot remember how I sounded in conversation, so even if you don't voice bank for use on text activated speech , it would probably be nice to hear yourself talking occasionally. My voice was the first to go and I miss the conversation dreadfully, feel robbed of my personality but that's no good, it has to be upwards and onwards and the apps that convert text to speech are a saving grace. Sometimes life is a hoot when there are typos, suddenly the machine is saying things you did not intend!!! I wish you all well and send love and best wishes xxx

GrannieAnnie
21st March 2015, 09:57
Ian, that is amazing information so for all those who have yet to lose a voice it should be highly recommended. I have no voice and believe me it is a great loss had I been quick witted enough before it was gone I would have at least recorded it. Thanks for the post. Ann E x

Trevorhb
21st March 2015, 11:12
Is your swallowing also effected Mik, the two normally go together.

Night walker
21st March 2015, 11:43
Hi Mik
Hubby's voice is changing, he sounds drunk, moreso when he is tired or anxious. I have trouble understanding him on the phone some days and he tends to shout if you ask him to repeat himself as it's frustrating him. He is under SALT and we are looking at android/samsung apps if anyone knows of any it would help me search.
He takes all meals and snack at the table now to ensure his posture is upright as I think his swallow is very slightly affected now. His arm strength is not what it was and there us some muscle atrophy in his palms and his bear like chubby fingers are thinning. He uses a Nippy3 every-night, he cannot lay flat at all, so no recline for him.
This time last year all he had was foot drop in one leg. We were told he is at the slow end of progression. I am not sure if he remains slow as a lot has changed in a year, it seems incessant at the moment, every day something new, changed,different I hate this disease so much.

He's really happy today, he's off to see the Spurs play. Season ticket holder and tottenham disabled services have been more than fab.
He has disabled seating and a glorious view. I am starting on decorating the hall (wish me luck with that) and rearranging the front room to accommodate his new rise and recline chair that our lively OT sorted out for him, desperately needs the rise. So loads to do today.
So Mik were you limb onset or respiratory? Do you have a PEG too?
So grateful to the services we have access to and hope you get them too.

Hugs
Sylv

willsandco
21st March 2015, 11:56
Sylv. I have Predictable by Therapy. We bought the IPAD and SALT paid for the text to speech application which a lovely man came and demonstrated for us. It is my lifeline. Joycie x

Terry
21st March 2015, 12:36
Hi Sylv;

If your under Addenbrocks, get in contact with Victoria Speech therapist there.

What tablets do you have and what are their operating systems?

Love Terry

Barry52
21st March 2015, 13:19
Hi all.
As Joycie has mentioned, I did record my voice at the Univerity Hospital in Edinburgh. This was late January and as yet I am still awaiting the recording. I am reluctant to quote the details of this scheme as I would not wish to raise anyone's hopes but if I get my recording then I will share the information. I have also registered with Model Talker like Ian and I am slowly putting together the 1600 phrases.

It was my slurred speech that prompted me to investigate, resulting in the PLS diagnosis. At that time I had no other symptoms although the loss of balance and swallowing problems occurred shortly afterwards. As has been said many times this disease has no pattern so it is difficult to compare progression in individual cases.

If anyone wan'ts the details of the Edinburgh project please send me a pm.
Best wishes
Barry

Ellie
21st March 2015, 14:56
Hi Mik,
It took about 2 years for my speech to go, it just gradually got weaker. I didn’t have slurred speech or sound drunk, perhaps because I wasn’t Bulbar onset?? (no idea why)
It can be very much linked to breathing, so I don’t know what difference, if any, being ventilated would make. I can still just about manage some single syllable words, though a stranger wouldn’t understand me, and I can spell out most letters. FWIW, my children are the best at understanding me! I have my PC for communication, but I don’t have it on 24/7.
Losing one’s voice is very, very difficult indeed and I, with hindsight, would “happily” accept my other disabilities, if only I could talk.
Love Ellie.

Night walker
21st March 2015, 17:52
Hi Sylv;

If your under Addenbrocks, get in contact with Victoria Speech therapist there.

What tablets do you have and what are their operating systems?

Love Terry

Hi Terry,
he has the samsung tablet android version 4.4.2. Xxx be good if you have any idea. I am looking for an app the you can store and easily retrieve several common sentences we all say without knowing. I am getting confused with TTL and stuff.
Fanx Sylv x

miranda
21st March 2015, 20:33
I have several short phrases saved on the Speak It on my iPad. I've also saved longer 'speeches' when needed. My speech slowly deteriorated over several years (a comment from a nephew asking his mum if I was drunk prompted me to go to my GP)and now most people can't understand me, others say they need to 'tune in' to me. Next were problems chewing and moving food in my mouth. Now I manage on a soft food diet. I don't think voice banking was available when I started to loose my speech.

Terry
21st March 2015, 22:01
Hi Sylv;

Predictable is I think, available for your Samsung, I don't know how it compares with the one for the I Pad as it might be a bit older. You can view it here and watch a video:-

http://www.therapy-box.co.uk/predictable_on_android.aspx

My tablet is a Prestigio 9.7 inch Dual Core 16GB Tablet (Refurbished) running Jelly bean 4.1

I have installed “Free Speech” by Tony Atkins. It is very good as it provides buttons that are bigger so it could be used on smaller phone screens as well. It also has a normal key board input. Let me know if you have trouble finding the key board.

My older Tablet did not automatically add a space when selecting a word so I down loaded “Swift Key” and this done the trick. https://play.google.com/store/apps/d...swiftkey&hl=en

I think that Predictable costs about £110 and can store phases etc. and Free Speech cost nothing but does not store things or have any bells etc. I think that they will run on 4.42 but not certain.

Let us know how you get on.

Love Terry

mik
21st March 2015, 23:49
Hi all,
i should of said i have an eyegaze with communicator on it, i am just scared of losing my voice permanently. I kind of know what its going to be like, from 10pm til 8am every day i have an inflatable cuff on my trache that has to go up. When inflated it stop air passing over my vocal cords, which means i cant talk but it has the bonus that it gets deflated and we return to our normality. I've not been told i sound drunk or that i'm slurring yet.
trevor i cant tell if my swallows failing as i lost it last year after having the tracheostomy.
sylv i am limb onset and the limbs are useless and i had my PEG fitted 2 1/2 years ago.
thank you all,
mik

willsandco
22nd March 2015, 08:20
Hello, Mik, just wondering how you were today. You sounded really worried and scared. I know I have lost my voice but I haven't got all the other problems you have. If I have my predictable, I can cope. You are not in that situation. I hope some of the posts on here have helped you. Let us know you are. Much love Joycie.

mik
22nd March 2015, 23:36
hi joyce,
thanks for your concern, i dont know how i feel at the moment. On one hand i feel terrified that its happening and on the other hand i feel angry and pathetic that i am letting this thing make me feel this way.
Thank you all for your replies.
mik

Jock
23rd March 2015, 08:55
I've considered how losing one's voice is not life threatening. Sounding like a Dalek in itself is not the end of the world. Possibly though having to type everything we want to say adds to the overall strain. Having MND is all about adapting. We're here to help Mik. :)

willsandco
23rd March 2015, 09:22
I know, sadly, this wont be relevant to Mik, but I agree with you about the stresses and strains having to type everything out brings. I can type at 50 wpm and am really fast on Predictable because I just type and don't wait for the words to come up! I find it so wearing having to type things or write things because most times by the time you frame it, the conversation has moved on! You have to really concentrate! I was quite a witty conversationalist and I cant deliver my funny one liners now! Also, gatherings of people is stressful now because you have to really concentrate. It is not just the lack of speech which causes the problems, it is the feeling of being isolated. I was at a wedding over the weekend and couldn't join in the chatter. Couldn't bother trying to make myself understood, so just sat quiet. It just isn't my style! It is hugely frustrating. I do so hope Mik's voice doesn't go! You are in my prayers, Mik. You are such a brave, courageous guy! Much love Joycie

Jock
23rd March 2015, 09:34
Adapt as best you can and surround yourself with understanding people that love you with or without MND. Don't allow the behaviour of others to bring you down.

Terry
23rd March 2015, 12:15
Hi Joycie;

If you have trouble and have to concentrate trying to communicate, imagine how hard it is with mild dyslexic like me. Communicating in a large loud group is almost impossible but in quieter groups and meetings I manage quite well be using the bell feature when I want to talk. People soon get used to it and stop their rapid back and forth conversation and make room for me. Still, I am often on the subject before the currant one.

It's not idea but we have to make the best of what we have, Terry

willsandco
23rd March 2015, 12:59
I'm not complaining about it, chaps. I can manage with my smile and my sense of the ridiculous! It is just hard in a wedding group around a table. Peter and I didn't know any of them so it is hard with a lot of background noise to explain exactly how things are!
In a conference situation, or with loved ones, I am fine. I have a bell on my rollator now and Peter has bought me a hand bell which says "Ring for Beer" on it! Hope you both are OK today! xx

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