Losing voice

[Mary C]

Hi ,
My voice is much weaker now so heading towards loss of speech.I have The Predictable App on my phone.Wondering how other members coped when in this position.?
Its fairly daunting to know that the time will come that I can’t join in easily unless using text to speech app.
Since diagnosis over a year ago I have had visitors most days as enjoy company .It will also be hard for friends etc to cope when I have no speech.
Hoping to learn from other members going through this now or have lost their speech already .
Best wishes
Mary

[Suefromwakey]

Hello Mary, I feel for you to say the least,

My husband is not there yet and quite clearly doesn't think he will be as he is refusing to get his voice banked - its all organised but he wont do it, have you done yours?

Sue

[Ellie]

Dear Mary, it breaks my heart to read your post. Losing the ability to speak is the worst aspect of MNDs and I always say that I'd happily live with my profound disabilities, but give me back my speech!!

I'll let others comment on how they coped (you've heard enough from me 😉) but I want to give you a ginormous hug and smoochie 🤗😘

[aussiegirl]

I'm in the same boat Mary, my voice is very soft and low, and I have already noticed by not having a strong voice, you get overrun by the others conversation. I find it hard to get the words out sometimes in a timely manner and you just get left behind. Something we have to get used to, I guess. I didn't voice bank, as that is not something I wanted to do. Be interested too to hear how others have coped. Feeling for you........

[matthew55]

I lost my voice a while ago and I use a boogie board as my fingers move by themselves which makes txt to speech very time consuming.

[Mary C]

Hi Suefromwakey...I did bank my voice banking early after diagnosis a year ago and it’s now on the predictable app.The. Grandchildren said I sound foreign,bit like a Dalek and a bit like me.I am still able to talk but with effort and it’s weaker and slower.
Like Ellie said losing the ability to speak is the most horrible thing to face with MND.Some people have years of no speech and it must be depressing.
Well today I can still speak so will enjoy it while I can.Thank goodness I have a strong faith to help me ride the storm.
Best wishes to you all.
Mary

[Deb]

Just to say my heart goes out to you Mary and all our friends who have lost the ability to speak. It must be the hardest thing to face. Although MND can't take our personality it must feel like it is doing that at the time.

I have been warned to bank my voice but find it really emotional knowing why I'm doing it. You've inspired me into action!

Love and big hugs to you,😘❤🤗
Debbie xxx

[LindaB]

Hi Mary C it's a terrible loss indeed. I'm still able to talk but in a slow way with some words proving more difficult than others. What I've found is my perception of myself is really tied up in my communication. I've always been quick to add a joke or humour and talked probably incessantly. Always singing (love a choir)or chatting.... singing now a thing of the past. Some might say a bit 'sharp tongued' at times. Never🙈🙉🙊

I'm cautious about how much I'll be expected to speak...anxious about being understood. I'm still working but trying to limit conversations....not easy in my job. I've been honest with colleagues but ultimately it will be this that decides my retirement or not. Love my job....so again will be a loss. I'm keeping dialogue as short as possible & delegate where I can

MNDA sent me a lap top and I've got the Acapela app on there I've completed the phrases....I think it only sounds vaguely like me and I'm still not sure how it works in practice. SALT visiting Monday I hope they can help with the practicalities.

One thing for sure being without my voice means I will need to stick to my guns about choices going forward and while my voice may be somewhat dimmed my minds is sharp and I WILL make my views known.
I'm glad you have a strong faith Mary that must be such a comfort to you and that's what we all need. 🤗😘

[denise]

Now I feel terrible. Stephen always had a loud voice and used to talk a lot. He doesn't speak much now. In fact all I tend to hear from early morning is "can you roll me a fag", occasionally "you making coffee" and that's it. He rarely says much else. Sometimes, I have to say, I'm far from polite. Usually when I've just rolled a fag and he wants another. I just wish he'd say more and not what he always says. There are periods when he is agitated and it's all about what time we are leaving, how we getting there, it's very repetitive and again makes us both stressed. I suppose when he can't speak I will wish it could be otherwise but this repetition is horrible. I told him this morning if we had a parrot it would have more communication skills. He thought that was really funny. 😟

[Mary C]

Just to add to my previous post.I am so glad I had forethought to make voice recordings for my 7 grandchildren before my voice became weaker.I also did our eldest granddaughteraged 20) video recordings .Thought these would be nice to leave to them for the future.Now my daughter wants a video recoding for her so need to crack on and do that next.

I still have speech but it’s weaker and slower.Got friends coming for chat and drinks this evening.I really appreciate these occasions so much more.My diary since diagnosis has been full as I am lucky enough to have a lot of friends and family locally.They laugh as have to book in with me now.
My GP asked a few weeks ago if he could send medical students around to chat about life with MND ..I did chuckle as on the date he wanted I was fully booked😂 (Thats often what you get when trying to get in at doctors)

My advise would be get voice recordings done ASAP and video or audio recordings done too..you can always update them as time goes on.As so many members say too I try and enjoy each day.
When first diagnosed I read an article by a Christian man who was totally paralysed due to MND and he was stating that he was still enjoying his now changed life .Albeit in a different way.
So pleased I found this forum as it’s good to share experiences and offer and receive support.
Best wishes
Mary

[John D]

Have lost my voice. It can be dispiriting to lose spontaneity especially when with people you don’t know that well. I banked my voice 2 years ago when I had started to slur. Don’t delay if your voice is fading. It only gets harder to get the voice right. I use Acapela and the Predictable app via an iPad. I also used Speech Unique to try to improve it but mainly use Predictable. It does sound like me although a bit robotic hence Robot Grandad to grandchildren! Of course, you don’t need to use your own voice. There are TTS apps with various voices to choose from.

My SALT is excellent and the MNDA was very helpful with advice and equipment.

Fortunately, I am in touch with 3 others in the area who have also lost their voices through Bulbar palsy. We meet regularly and email to share experience and support each other. It can be amusing when we are all using different devices and apps and the occasional grunt.

There are other ways to communicate. Boogie boards are invaluable in the right circumstances as is the chat function in Zoom calls and the like.

Please post any questions. I’m sure there others on here who will be happy to share knowledge and experience.

[Ellie]

Denise honey, I love you but please be mindful of a thread's context before you post - I'm trying to be polite and tactful saying this to you 😏😘😘

[denise]

Honestly I want him to talk. I want him to communicate but he doesn't. I want to know why. Its hard to help someone if they won't speak to you. If he wont talk to me now while he can how will i be able to help when he cant.

there are problems that should have been investigated sometime ago hopefully now we are here we might get help.

I asked over and over about there be something else going on. Not just mnd but dementia. I'm sorry if I've offended anyone but I've been trying so hard to get help for one thing or another for more than 3 years and not getting anywhere.

[Ellie]

I understand Denise but this thread is about the truly awful prospect, and reality, of losing one's voice, its consequences and coping mechanisms.

You can always start a thread about reluctance to speak but, at any any rate, push for a neuropsychology assessment for Stephen - often this can be done by the MND Nurse and he can be referred to the Neuropsychologist if necessary, or you can asked to be referred directly to a Neuropsychologist (local hospital has them, I checked) xx

[PeterPan]

Mary C I’m in exactly the same situation today as you Mary, and am equally concerned. I’m very pleased you raised it. I banked my voice almost a year ago, I have the Predictable app on my phone and iPad and I’ve played around with it. My real voice is very slow and weak and I’ve always loved being spontaneous and quick witted. Yesterday I went out with former colleagues and one person just couldn’t understand a single word of what I was saying. That was a first for me. I know others have been through this stage but we do each face it pretty much alone. Except that now I know I’m not alone and that does help.