Intro - Caregiver

[SligoBoy]

I know your emotions are on a spin cycle right now, but it does calm down, or you kind of just get used to it...

Thanks so much Ellie for sharing this part of your experience. It definitely helps knowing this.

[SligoBoy]

Thanks to everyone for the kind words, advice, and friendly welcome. Glad this forum is here.

[Bowler]

I had plans for my wife and I to go to Ireland and to revisit Wales in a year or two but I guess that's probably not going to happen now with my wife falling ill with ALS.

MND/ ALS doesn’t always mean the end of travel dreams. We continued to drive to Spain for about 3 years after my wife’s diagnosis. If your wife wants to particularly go or do something and your funds allow I say go now and don’t worry about the medical people . They will still be there when you get back.

[matthew55]

Just concentrate on the good things. Bad things happen but shouldn't be considered. Stay Strong

[Barry52]

Hello and welcome SligoBoy.

I’m sorry to hear that your wife has succumbed to this disease and as others have said you will find advice and support here. In your introduction you mentioned the foundation of the site so I offer you a history tour. The link below shows the foundation of a support group over 40 years ago. One of the founder members is still active in her role as Association Volunteer and committee member of the regional branch in Nottingham. I am proud to work with the committee along side of her. I consider myself fortunate to have a slow variant of MND which allows me to help others less fortunate. The Forum was introduced in 2010 and I think it is safe to say that users find it a lifeline from isolation.
https://www.mndassociation.org/about...y/our-history/

You mentioned about your wife’s speech and I like a few others on here have banked our voice. Initially I used an American based company called Modeltalker with a speech app named Predictable but I have recently changed to a UK based system as the app is more user friendly.

Best wishes,
Barry

[richard]

Hello and welcome SligoBoy.

Initially I used an American based company called Modeltalker with a speech app named Predictable but I have recently changed to a UK based system as the app is more user friendly.

Best wishes,
Barry

Which company do you use Barry?

RICHARD

[Barry52]

Which company do you use Barry?

RICHARD

Richard I now use Speakunique.

[SligoBoy]

Hello and welcome SligoBoy.
You mentioned about your wife’s speech and I like a few others on here have banked our voice. Initially I used an American based company called Modeltalker with a speech app named Predictable but I have recently changed to a UK based system as the app is more user friendly.

We have yet to talk to any therapists so I'm not familiar with the equipment & apps needed. I take it that the voice banking is so that it can be used in place of a computerized voice synthesizer like that used by Steven Hawking?

Is the app based system any better than a hardware device that does the same thing?

[Barry52]

We have yet to talk to any therapists so I'm not familiar with the equipment & apps needed. I take it that the voice banking is so that it can be used in place of a computerized voice synthesizer like that used by Steven Hawking?

Is the app based system any better than a hardware device that does the same thing?

The app system is compatible with iOS and android devices and if you capture your voice by banking it then it feels more personal when using it. If your wife has lost her speech then often a family member who sounds similar can bank on her behalf. There are many bespoke voices and accents available with speech apps.