Dad has ALS... ideas needed

[corbster98]

Hey all,

I have been reading these forums since Mother's Day, when I found out my Dad has ALS. Though I have found these forums to be incredibly helpful and educational, this is the first time I have posted. It just took me several months to "digest" and come to some sort of acceptance of this horrible diagnosis.

My question is... Dad has limb onset and his arms are pretty much useless and his hand strength is becoming non-existant. We talk often through typing/email and it is becoming very tiring and difficult for his hands. Can you all give me some suggestions on what we can buy or use to allow us to still email or type to one another? We live in different states right now.

Thank you for any suggestions you have
Allison

 

[Katie C]

Can he still speak? If so, there are several types of voice activated software you could use though I know there are others here that are more knowledgeable about what programs work best.

 

[Magpuff]

Go to the "Computer Aids" post. All kinds of options there.

 

[10steps]

My husband uses the dynavox system with eyegaze. We had looked at voice activated software but really as your voice changes it affects the software and becomes frustrating so we were steered to the dynavox by the speech therapist. Ours was covered by insurance but only as a communication device. you will need to purchase the internet access for $55 from the company.

 

[corbster98]

Yes Dad can still speak just fine. He is only currently having issues in both of his arms/hands.

 

[corbster98]

Went to to the "Computer aids" post that was recommended. Fantastic! Researching those options now... thank you

 

[brooksea]

Sorry about your dad, Allison. I hope you can find a viable solution so that you and he can still communicate.

I hope you will find lost of help and support here on the forum.

 

[corbster98]

Brooksea... thank you. I know that we will find a way. I do intend to move back to NC soon to be closer to him, but right now we are living in KS (my husband is active duty Army) and it is really hard to be away from Dad. He has always been my "hero" and I have always and still am Daddy's little girl.

Allison

 

[KKay]

Mu husband used "DragonSpeak" for awhile and he really liked it. I think one trick is to get a really good headset and microphone.

 

[rcharlton]

I have lost the use of my hands for a while.

How are your dad's feet?

I use a wireless mouse ($20) with my foot and on onscreen keyboard with word prediction (Wivik).

It was a bit slow going until I adapted to using my foot, but now I navigate around as quickly as I did with my hands.

You'll need bare feet.

Avoid mice with overly contoured buttons.

Might work well in conjunction with Dragon Speak.

At $20 for most wireless mice, you might want to give it a try before investing in more expensive options.

Here is my hands free reading set up for when I'm lying on my side.

I have my laptop set up on a bed side table above my bipap - best if it is higher than your head. Change the screen view from landscape to portrait (there is a free program called iRotate which simplifies the process). I have a convertible laptop/tablet which works especially well but any laptop or monitor will work.

I then have an external usb trackpad placed by my feet at the foot of my bed. I operate the trackpad using my big toe with minimal effort.

I velcroed the trackpad to a rubber mouse pad to keep it from slipping around in my bed.

Kindle, Nook and Kobo all have free PC applications which will sync with your mobile device.

eReader is a good hands free ereading program as it has an auto scroll feature - touch to start and touch to stop - so all you have to do is lie there and the text moves automatically.

manybooks.net is a great source for free legal ebooks formatted for all programs.

Calibre is a free ebook manager which will convert pretty much every non-drm ebook file to any other format.

Good luck.

 

[corbster98]

Rcharlton...

Thank you for the specific example of what works for you. I greatly appreciate the time you took to respond. Dad's legs and feet are really strong at this point. The ALS seems to only be affecting his arms/hands currently. He was diagnosed in late 2010 and I am trying to give him information and ideas to help him... I currently live in another state but my husband is working on trying to get a "compassionate" reassignment (he is Army) back to NC so we can be closer and I can help my Mom/Dad as this progresses. Until then, I fly home to visit for a few weeks every few months. I homeschool our 2 boys, so I can work in a pretty flexible schedule for us

 

[gotverve]

Based at Ft. Riley I assume? I live south of Lawrence, KS. We've lost my mom, 2 uncles & one cousin to ALS. I don't have have much to offer right now but wanted you to know I have several friends in NC if they wish to connect with some of the other PALS there. I have a large network via Facebook.....Sending you my prayers!