How to plan for ALS?
 

I am newly diagnosed and have learned a lot through forums like this one. Currently, my symptoms are limited to loss of strength/dexterity in my left hand (not yet debilitating) and difficulty speaking (slow but still clear). I am all to aware that this will change in time and am looking for advise as to what I might do now while I am able that will help me when I am less so. For example, I have recently heard about voice banking...

I sense that mine will be a slow progression and I will dearly appreciate any advise out there that will help me take care of myself longer.

Thanks a million,
SteveS

ps - thanks for the link Jeannie x

Hi Steve welcome aboard :)

Unfortunately I'm unable to offer any advice even though Ive had ALS since June 2000.......The voice banking seems a great Idea, wished I had taken that option but my voice I feel has gone beyond that.....my family can understand me 100% which is the main thing.

Its great you feel you have a slow progression :) I'm sure others here will be able to offer advice.

Best wishes Jeannie x

keep smiling !!!
 

Sorry, you have joined our club!

The best advice I can give is keep positive and live every day to the full, the best way you can!

Do not complain, be an example and an inspiration to those around you.......if you appear to be strong then those around you willtake on your strength.

good luck
Boomer

ps do not believe all the drs tell you......we are all different;)

I would say to be prepare for things before you need them.....that is one thing my brother hasn't always done. For example, my brother lost his ability to walk before he lost the ability to use his hands....by the time he ordered the electronic wheel chair and got it in his possession, he couldn't operate the hand controls and we had to send it back. Be prepared...educate yourself on what you might need down the road so that if you need something you know where to get it quickly...and that could be anything (braces for your wrists or ankles, wheel chairs, speech equipment, computer stuff right down to modifying your home)....be prepared!!!
I know this is kind of vague....every PALS needs different things at different times......and you may not need anything (because they ARE going to cure this)....but it is always good to know what you might need before you need it.
My best to you!!!!
Alison

What is voice banking?

Voice banking is recording words and phrases on the pc while you can speak well to use in a speech program when you can no longer communicate.
Something like that anyway,lol.

That's what I have learned too Sharob. There are programs out there that record several thousand phrases of your own speech. The software then chops it up and allows your computer to read any text in your own voice... pretty cool!

And thanks Boomer for the encouragement. It seems strange to me but I don't find myself getting all upset about things; I guess I figure what's the point. If I feel bad at all it is for my family who I have not yet told. I will soon, of course, but I hate the thought of the sadness they will feel. For myself, I am always the eternal optimist and never have spent time worrying about those things over which I have no control. I'd rather spend my time focusing on the things for which I can make positive impact. To change now would just be too hypocritical.

I look forward to getting to know the folks here better.

Ciao for now,
Steve