need some encouragement

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nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
Today was a real bad one for me. My left arm is mostly useless and the diagnosing Dr said the disease would probably go into my other arm next. It is also involving bulbar regions-basically I think I am faced with losing my speech and the ability to use the internet to communicate-what is left? I do not want to exist as a being unable to communicate or interact with the outside world. Dr said 3-5 years to live but how much of that would be quality?
 
there is an eye gaze computer ap you can use, and take heart, there is no set time schedule for any of this mess.
take it a day at a time, start everyday fresh and face it head on.
Ashely can give you some good ideas
 
I wouldn't pay a lot of attention to what the doc says about progression, they can only guess. Mine started in my right leg, then went to bulbar, followed by my diaphragm. My arms are a lot weaker now but still functioning. Only now is my left leg starting to be affected. Only thing that still works correctly is my fingers. I'm telling this to show that there is no rules governing ALS, it does what it wants. You can watch for little signs so you can stay ahead of it and get whatever equipment you will need before you need it. Sometimes your CALS or the doc will notice little things before you do, listen to them, let them get what you will need. But don't waste your time sitting around worrying about what you will loose next.
As for communication, there are some wonderful techno devises available now that just a few years ago would have seemed like science fiction. I have an app for my iPad that let's me type what I want to say and it says it. Their called type to speak apps and there are several to chose from. I believe there are also some available that use eye gaze technology.
On the bright side of things, you now have the opportunity to find out who your real friends are. Those that continue to come around and actually show up when asked for help you know are your real friends, those that offer but then make excuses, well, they weren't really friends anyway. Sometimes you'll find that the best friends you have are the least expected ones.
 
nebrhahe53 it is so hard, you will have down days, but we will help as we can.

There are options for using technology without hands.

The iPad is fully switch compatible, so as long as you can tap with something - elbow, knees, head, whatever you can communicate. This is possibly one of the cheapest options, but there are also adaptive mice, virtual keyboards etc for windows computers.

Then the high end are the eye gaze systems.

Lots of PALS here are using variations, and hopefully some will help you realise that there are still options for you.

We had the iPad and jelly bean switch, I was impressed with what could be done with patience!
 
ALS effects each of us in so many different ways. The physical as well as the emotional. I write a lot and try to stay one ahead of it. I start training on the dynovox eye gaze this month. My speech is pretty much toast. Try to stay mentally strong that is our only true weapon.


Stars that shine.

Look up into the night sky.
Let your imagination take hold.
See the stars your eyes cannot see.
Imagine the countless galaxies of our Universe
We are but one out of a billion.

We as human beings are much the same.
Six billion people on our small blue world.
But know and understand but a fraction of our own selves.
We close our eyes to the world.

We choose war over peace.
We have the right to believe in our own faith.
We do not have the right to kill because of it.
Our time on this earth is small.
And yet we still glorify war.

We speak without listening to others.
We close our mind to reality.
And ignore what is what is in front of you.
The hidden truth that life is more than what we can see.

Patrick
 
good morning Neil,

>Today was a real bad one for me.

They happen, sometimes all too often. There is no getting around it, only getting through it.

As we say "It Is What It Is" :)


>My left arm is mostly useless and the diagnosing Dr said the disease would probably go into my other arm next. It is also involving bulbar regions-basically I think I am faced with losing my speech

your situation sounds very similar to mine: left arm and hand gone, speech pretty bad (although I'm dictating this using Dragon naturally speaking), swallowing difficult to the point that interferes from my breathing, etc.

However note my speech was beginning to be affected in September 2010 almost 4 years ago. Problems with the left arm began in August 2012 almost 2 years ago. That is to say there is no guessing at what is going to go next or when.


>and the ability to use the internet to communicate-what is left? I do not want to exist as a being unable to communicate or interact with the outside world.

the folks on here have all kinds of ways to communicate, if you're worried to try. Remind me again, are you a veteran? If so, the VA offer many expensive technologies to assist – – all for free!

I am experimenting with meaning and one-handed keyboards right now, since my left hand is a useless. I'll attach a picture of the latest one I'm playing with. Do not buy a frogpad -- unfortunately that company is a scam.


>Dr said 3-5 years to live but how much of that would be quality?

quack quack. I'm surprised he didn't tell you that you have three years two months eight days and four hours left. Quack quack.
 

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Are you going to an ALS clinic? If not you really need to find a good one. And if you are ask to be scheduled for a visit to the assistive technologies people ( they may call it something else but they are the people who can help you figure out what will work best for you).
And it is so true no one can predict what will happen in what order. And with determination you can use a computer in so many ways. With eyes, the head movement, with just one working digit, with your foot.... It is hard I know but try to focus on the ways to do things rather than looking back at the used to be able to. I understand. I had a bad day yesterday too because I had another " I can't do x" moment. It hurts. A lot. But I am trying not to waste days now while I am still able to do a lot
 
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>But I am trying not to waste days now while I am still able to do a lot

:):):):):)
 
This disease is particularly awful if you let yourself think too far ahead. All any of us are guaranteed is today, so I try very hard to focus on that and find something, however small, to be grateful for, or to find beauty in. Sometimes I fail (like the past two days), but today is a new day, with a new attitude.

I hope today is better for you, too, and you can find something beautiful to see, do or think about. I'm including photo of amazing Hawaiian sunset.

We are all in this together!
Kay
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If you dwell on tomorrow - you will not embrace today. One day at a time and for some of us one hour at a time.

Debbie
 
Thank you all for the kind words:

Max no I am not a vet and medicare will no longer pay for these systems

Debbie-I hope your husband is still with you

Thank you for the picture Kay

I am hoping to get into the Emery Ballard ALS clinic in Texas when I move back there next week.

Thank you for the poem Patrick

And to the rest of you who answered.

Right now I'm just trying to find someone who will write me a prescription for Rilutek and then find a pharmacy that has it. I see my GP today. And to do all the things required for a move. Seemed so easy before but now seems overwhelming
 
>And to do all the things required for a move.

hi Neil, are you moving from Austin to someplace with a decent climate :)


>Seemed so easy before but now seems overwhelming

no kidding! I just about blew a gasket last night trying to open a damned can… Sandy rescued me and the kitchen but let's say I was not suffering from hypotension.
 
One thing good about Texas is that have some really great Dr's. My dad goes to a ALS clinic in Dallas. They treat him beyond great and I know it won't unfortunately help you but they also have a great VA clinic. The VA clinic gets equipment for my dad really fast and sometimes before he even asks for them.
 
hi Kim,

> One thing good about Texas is that have some really great Dr's.

That part is true. Great doctors great hospitals – – Baylor, Houston Methodist, the VA(although note our VA has about an 80 square-mile parking lot and building signage that has caused us to lose several hundred veterans as they wander the halls of the VA medical Center endlessly like Charlie on the MTA :) ....

http://youtu.be/S7Jw_v3F_Q0
 
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