Can overdoing it cause permanent damage?

[pamdemonium]

Hello. This is my first post. My name is Pamela. My father-in-law was diagnosed with ALS (PBP onset), in February of this year. We are all struggling to come to terms with this. He is rapidly losing his ability to speak.

My father-in-law is well-loved and many people are coming to visit him. He really loves the company and is exhausting himself with his efforts to communicate and keep things as 'normal' as he can for his friends and family. After these visits, he is wiped out and sometimes has a couple of bad days where he seems to lose ground. Then, after some rest, he seems to bounce back.

If he keeps overdoing it, can he cause what have been temporary changes to become permanent? Could it cause the disease to move more rapidly? I love that his friends want to be with him but I am also feeling very protective of him as well.

Pamela

 

[abbas child]

Pamela, you are absolutely right. The muscles he's using in speaking do become fatigued by overuse. I'm right at that stage myself, having had an extremely talkative weekend, and I'm exhausted. The phone calls are also very tiring. As you noted there is a bounce back after the resting time. As I first lost my leg use, then torso strength, and now am losing arm as well as throat, I've been very aware that first there is a bounce back from over use. It becomes increasingly hard to bounce back, with a lowering level of the "new normal", before the muscle stops working.

I have a hard time with not wanting to hurt anyone's feelings, and feel guilty if one my more talkative friends whom I have to dampen, calls while I have another visitor ( there are a few who barely tire me). Then there is my family, all of whom have to travel to visit (this past weekend, my 85 year old father), and I simply cannot say "no".

If you or someone can step in and first talk with your father-in-law about this, then "screen" visitors and calls for him, you'd be doing him a huge service. My speech therapist at the ALS Clinic sent me a statement advising me to conserve my voice. I'm sure it would be advice given to your father-in-law.

As for causing the disease to progress more rapidly, I expect you would find varying opinions. I believe that both exhaustion from doing/talking too much as well as injuries and also mental stress probably cause the disease to hasten. I've read this and also experienced it myself.

Pamela, ultimately he has to decide which is more important to him--his friends visiting or his faster voice damage and loss. Thanks for being so involved and concerned.

Ann

 

[pamdemonium]

Ann-
Thank you for your reply. It has lots of good information for a newbie like me. I just adore my father-in-law. I simply want him to be as well as possible for as long as possible. I also do not want to limit him in anyway with my protectiveness.

The good new is that he finally allowed my husband and I to get him and ipad and load proloquo2go on it. He seems to be embracing this way of communicating.

Thanks again for responding.

 

[abbas child]

Oh, Pamela, I've just been looking at ipads at eBay. You are such a blessing to your FIL.

 

[pamdemonium]

The ipad is really cool. We are very lucky to have an Apple store right in our mall. The people there were SO helpful in helping us to decide exactly what to get.

Being a couple of computer geeks, DH and I initially thought that we would get the fully loaded model (3G, wireless and max storage) which really drove up the price. The guy at the Apple store told us that unless my father-in-law was going to be storing tons of music, movies and/or photos on his ipad, we did not need all that storage. And since the cell reception is awful where they live and he does not need to be online when he is out and about he did not need the 3G either. We went with the WiFi only with 16 Gb of storage and it saved us about $300.

 

[abbas child]

Really helpful to learn this, Pamela. Thank you! The prices were looking awful. Good to know more about it. I'm just beginning...

 

[pamdemonium]

For us, the base model ipad (WiFi only, 16 GB of storage) with tax and the proloquo2go app was under $1K total. Which is a lot more reasonable than a lot of the other solutions I had read about. Plus ipads do a lot more.

We had just bought a kindle for my FIL for Father's day. Now that he has an ipad, he can read his books on that because the kindle app for the ipad is FREE.

 

[irismarie]

I second everything Ann has said - very quietly, in a whisper, to conserve my croaking excuse of a voice.
In fact I find losing my voice worse than losing my legs. Conversation defines you. People now think I am a "weirdo "with an IQ of about 50 cos I speak like an old 78 record cracking and played way below speed.
And visits are soooooooooo tiring. I am SURE people are getting their own back and saying exasperating things just cos they know I cannot fire back now. I have a netbook and nextup thanks to the advice of Barry in particular but cannot seem to use it in earnest as one is so much SLOWER than the talkers. Barry, do you have a gap before the voice starts after you press ENTER? It really annoys me...
Love to all
and much admiration PAM FOR so helping your FIL
Irismarie

 

[abbas child]

I second everything Ann has said - very quietly, in a whisper, to conserve my croaking excuse of a voice.
In fact I find losing my voice worse than losing my legs. Conversation defines you. People now think I am a "weirdo "with an IQ of about 50 cos I speak like an old 78 record cracking and played way below speed.
And visits are soooooooooo tiring. I am SURE people are getting their own back and saying exasperating things just cos they know I cannot fire back now.
Love to all
and much admiration PAM FOR so helping your FIL
Irismarie

IrisMarie, I'd love to hear your netbook and nextup play back this portion. You may be "seconding me", but you're far more entertaining. 8)

 

[joelc]

Thanks to Barry I have the same setup. I also experience the delay and it is frustrating. It did not do this when I first installed it, but after about 1 week it started. I have been considering uninstalling it and reinstalling.

 

[BarryG]

I have the same delay and it is something that was not there when I first started using it. I am thinking that there is another program (antivirus, antispyware, firewall or something else) that is running in the background that is causing the delay but I have an email address for tech support at NextUp so I will ask and let you know.

 

[Phil M]

I have a Tobi light writer, and I'm starting to think the netbook is not a bad idea. I think the Tobi is way over priced, and doesn't work that well in my opinion. I'm curious about the netbook. They aren't really any bigger than the tobi.
The Ipad would be good too, but I haven't played with one yet. I like how easy it is to type on the Iphone. I'm assuming its about the same?

 

[BarryG]

Phil, I have an IPod touch with Proloquo2go and it is the same size as the IPhone. It is starting to be harder for me to type on it as I am hitting the wrong keys, especially when I am flustered or tired or trying to hurry. My SLP told me in an email the other day that she knows of a stylus that will work with the IPod/IPhone/IPad, I am hoping that it is something that will attach to my finger as it is getting hard to hold anything. Something else that drives me crazy is the auto-rotate function, it might be cool for games or whatever but it absolutely drives me nuts when it flips upside down on me. Even with these issues it is a good way to be heard if am external speaker is used.

I just did some testing with NextUp and no delay at all so I think the problem is a CPU usage issue. I have noticed that it takes NextUp a while to get going when I first go to use it but once my computer has been running for a while and I have used NextUp a bit there is no delay.

 

[abbas child]

Please consider yourselves the experts we're all hoping to learn from...and when that time comes, Barry, use very "little" words. Smile. "Computer" is still ok... It occurs to me that when everything is going, the time factor in using these aids may be very short. Frown.

 

[irismarie]

what is funny is that the American lady who so kindly reads my words aloud, when she does not recognise a word spells out the letters - just like "not before the children." There are, of course, quite a few typos and instead of having a bash at grden she spelles it out.
The French girl who reads my French writing does not have the same problem. Is this because Americans are less well educated or because the French are willing to take over other Western languages and ?at least "have a go";-)
And I must say the French girl reading my English sounds much sexier than the American lady struggling with the French....

BArry I wrote to tech support ages ago about this and they wanted to know how long was the pause? SInce I do not have a stopwatch I did not reply but sometimes I even wonder if she is going to speak. It is not at all acceptable when we are already sufferring a time penalty

A little tip for netbook owners. Pressing ctrl and Fn and the plas sign increases the font size in increments and the same with M decreases it.