Mom insecure about her speech

[missbelle]

Hi guys. This one might be difficult to answer as it's more a mental thing, but I cannot convince my mom that her having to use an iPad to communicate is fine and normal. She's so insecure about being in public with it.

Some back story: mom recently diagnosed/confirmed ALS in October. She cannot speak well (my dad and I are the only ones who can understand her), and has difficulty swallowing, but otherwise is doing okay. She can walk fine and only had minimal weakness on one side. She's still very independent.

Anyway, I got her an iPad with a text-to-speech app. She learned how to use it quickly and is doing a great job with it! Even her social worker was impressed! She uses it all the time in front of me and my dad, and even makes little jokes on it and seems to be having fun using it!

But when she gets invited to a social event (say, a dinner or outing with friends) she is too embarrassed to have to use it, and just won't bother going. We would also like to take her away for Christmas, but she doesn't want to go anywhere because she's too ashamed. She just wants to stay at home and only talk to the 2 of us.

I was thinking maybe I could find some counselling for her, but I think she would be too embarrassed to go since she'd have a hard time communicating with someone. There are no ALS support groups in her area since she lives way out in the country. I keep telling her that everyone loves her and just wants her to be there, and no one thinks it's weird she has to communicate with an iPad, everyone thinks it's pretty cool really!

Anyway, just wondering if anyone else has gone through something similar and has any helpful suggestions? I suppose it's really just up to her and she'll maybe get more comfortable with it over time? It's just... we don't necessarily have much time. I don't want to force her to do anything she doesn't want to, but... I also want to force her to do some things that I know would end up being fun!

It's a tough situation. Thanks in advance!

 

[ckck]

Perhaps she is more comfortable typing on the iPad and then just showing the writing to another person rather than having the iPad speak. I have been without voice for about a year and typically I will type on my phone/iPad and just show it to a person and let them read it. It is easier when there is a lot of ambient noise. Conversations tend to be between individuals rather than a group, but that is the way it is.

Might be more comfortable for her to try this. I know it works well when ordering something or asking a question. Just type it, show it, people read it, and don't say anything.

Wish her the best

Ken

 

[affected]

I don't have an answer, but I can identify with your feelings.

My husband Chris was very embarrassed about his loss of speech and became very withdrawn quite quickly.

It is great she will use the ipad. Can you get people to come and visit her? Not a lot at once, but I'm wondering if that will help her get used to using her ipad in front of others?

 

[soonerwife]

My PALS can not speak at all. He has apps on his phone that do text to speech but he doesn't use them. He either writes on a notepad, dry erase board or if those aren't available, he types it as a text and lets me read it. For him, I think he finds that easier than text to speech?!

 

[starente15]

I set my dad up with the app as well and he seemed intrigued for a bit, even having me add phrases. In the end, he resorted to writing on a dry erase board. I'm not sure, but maybe using the small keyboard/stylus was challenging as he started having more problems with his hands.

 

[geoff581]

My wife is at the point where she is mostly using her iPad and iPod Touch to communicate with people. She feels uncomfortable using the text to speech apps in front of people that she doesn't know well. A couple of weeks ago, we went to banquet for our twin sons' basketball team and she was uncomfortable being introduced to other parents. I think in time she will get more comfortable. Keep encouraging your mom and have other loved ones do the same.

 

[missbelle]

Thanks so much, everyone!!!

 

[Firefighter58]

Missbelle, I am not far from you, I am on Oakville. I have always been under the care of McMaster and they steered me to an ipad that is type and speak or display. I also don't like it but it it does the job. I have a purse like thing I carry it in and just take it out when I want it, The more I use it the more I like it, the only problem is my spelling has not improved.

 

[missbelle]

Firefighter58, we are so close! My mom is going to the clinic in London, and had the second opinion done at McMaster.

I wish the voices for the text-to-speech were a bit better. They are difficult to understand sometimes, but you're right, it does do the trick. I hope she'll become more comfortable with it over time. Lucky for auto-correct and word prediction! What app are you using for yours?

 

[Firefighter58]

Good morning Missbelle, on my Ipad I use Dynavox that I find very good, It can speak about fifty different languages (not that I need them) and there are four different english versions ( two british, US, in male or female). The only problem I find is that it says what you type, which can be embarrassing when you spell like me.
Al

 

[bigmark1954]

I just read this and can relate 100% to it. I thought text to speech would take care of my inability to speak legibly. The few times I have used it, I found I had to play back the message 2-3 times.

I get really anxious when trying to communicate with people, and am very self conscious about it in public. I usually show up with a written note of what I need or want. I also use a note pad.

I find that people often think that I am def because I can't speak (they start talking very loudly). Loosing my ability to speak is the most difficult thing I face on a day to day basis. I absolutely hate it

 

[Firefighter58]

Ya Bigmark I agree, I am in the same boat but not much we can do about it. I find when I start to type on my Ipad people become very patient and will wait till I complete my statement.
Al

 

[azwxman]

i WISH people would be patient and wait for me to finish typing whatever it is that I want to say. But mostly people try to guess what the next word is going to be. Ah, well, ALS has improved my patience.!
I think you can make the tools available to her and then encourage her to go and use them but you can't force her into situations that make her uncomfortable.