My Father recently diagnosed

simon13

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Jun 11, 2022
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Loved one DX
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04/2022
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Pickering
My dad, in his late 60's, has been diagnosed with ALS. He is an active physical type so this has been devastating for him to cope with. Exercise and movement is very important to him.

He lives about a 6 hour drive away from me but I've been going back and forth to see him. This is my first real post I just wanted to post as part of the process mentally for myself. I'm unsure if I'm doing the right thing.

He is taking Riluzole but any other advice would be appreciated from a mental or physical perspective about how I can help him transition. His voice is already much affected. He was diagnosed 3 months ago.

I will use this forum as a resource looking at former posts to help guide me.

Thanks everyone.
 

affected

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Sorry to welcome you here.
We have some great resources at the top of some of the forum sections.
This one may help a little, and many will give you ideas I'm sure as this is a wonderfully supportive place.
 

Mary2

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CALS
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04/2021
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Sorry to hear about your Dad's diagnosis. The forum is a great source of information and emotional support. My husband has ALS and my son stays in touch with video calls and some Zoom. Any contact from our son, even a text with a picture of the dog, really lifts my husband's spirits.
 

lgelb

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Sorry to welcome you, Simon. Since his voice is affected, I would make sure he has a device that is easy for him to keyboard on (phone or tablet) for display text or speech on the go, as well as a laptop or whatever works best at home.

There are many text-to-speech (TTS) apps with features to reduce the effort required to generate speech, such as a core vocabulary of words, customizable phrase lists, word prediction as you have on your phone, and shortcuts for common phrases or sentences.

You may also want to see if he can work with a PT experienced in ALS who can help him evolve his regimen to keep fit as possible while not overdoing it. If/as it's difficult for him to go out, that should be part of his home health benefit, properly documented. Even tele-PT can be of great benefit in this case.

Best,
Laurie
 

simon13

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Joined
Jun 11, 2022
Messages
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Loved one DX
Diagnosis
04/2022
Country
CA
City
Pickering
Thank you to everyone for the responses. I greatly appreciate it. I think my Dad was late to be diagnosed so is likely further along than I expected.
In regards with TTS (text to speech) I've been looking at Predictable. I've been researching voice-banking to work with TTS but I'm wondering if it might be too much stress on his voice at this stage.

If anyone has any experience with the Predictable App please let me know. I'm also looking at modeltalker for the voice banking.

My Father lives in a Rural part of Quebec where getting any physical therapist in the area is unfortunately very difficult. Tele-PT is a great idea! Thanks Laurie.

Simon
 

lgelb

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If his voice is already failing, it's kind of like a battery that's running out, and I wouldn't use it for voice banking, where the results are unlikely to really transform future communication. There are plenty of existing voices for use in those apps, and I'm sure he will have a favorite.

Instead, he could record special messages for family members for the future, for example, as well as communicating in the now.
 

affected

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We used predictable back in 2013/4 and it was pretty easy to use. You can set up common phrases and stuff which is really helpful.
 

simon13

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Jun 11, 2022
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Loved one DX
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04/2022
Country
CA
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Pickering
I was thinking this as well. I don't want to waste his energy. Thanks IgelB.

I'm going to try the predictable App, has 200 dollar price tag but willing to pay for the best app for him. Thanks Tillie.
 

Firefighter58

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Jun 21, 2016
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693
Reason
PALS
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Simon I have used a free version of text to speak for about 7 years and it has served me well, and it is very easy to use.. Is your dad suffering from depression if so an antidepressant would help, it brought me back to normal much to the relief of the family.
Al
 

simon13

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Joined
Jun 11, 2022
Messages
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Reason
Loved one DX
Diagnosis
04/2022
Country
CA
City
Pickering
Hey AL, Is the app called "text to speak"? Or is there a company name that would help me search for this? There seems to be a lot of different apps.

I believe my Dad is using an antidepressant as of now. Thanks for the post Al.
 

Nikki J

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Les turner als foundation is having a webinar on communication that you might be interested in. They are going to discuss some options besides actual voice banking. I can’t link due to forum rules but dropping les turner als learning series into your search box should get you there
 

Firefighter58

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693
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PALS
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Simon, my caregiver just texted " free text to speak " and found it that way.
Al
 
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