Wednesday, April 23, 2008

Things YOU take for granted.....

This thread is copied and pasted directly from the "Living With ALS" Yahoo group. It illustrates just one thing I have to look forward to. Over the next few weeks I plan on posting some of my thoughts on things that I took for granted -- that I can no longer. For now, this thread speaks volumes (pun intended):

My voice is getting weak and my speech quite slurred. Even my familyand caregivers have difficulty understanding me now. I'd like someinput from those of you who can no longer speak, or from CALS whocare/have cared for PALS who can no longer speak.I have a tablet PC with a suped up speaker that I can mount to mywheelchair. I use a HeadMouse to move the pointer, a toe switch toclick, and speech software.I've tried using the tablet a couple of times after church. Unfortunately, trying to say anything other than pre-programmedgreetings (hello, how are you, etc. ) was too slow. Mingling afterchurch over coffee involves small talk that is a bit more personalizedthan the "hello how are you" phrases, but is usually fairly short -"how's your wife doing after her surgery" or "tell me about yourtrip". And then you move on to the next person. My experience wasthat people just weren't patient enough to wait for me to slowly type.Have you experienced this? How have you dealt with it?I can't use the tablet in the car because road vibrations make myheadmouse move slightly, which causes the pointer to bounce around. How do you give directions? How can I chat during my 4 hour drive toALS clinic?How do you communicate when you're on the toilet ("I need anotherwipe")? Or in the shower ("I have soap in my eyes")? Or in the hoyerlift ("My hands are caught") or in bed ("I'm cold")?How do you deal emotionally with this?

I have the same problem with my voice. My suggestion to you is a memory board. You can find it on the following web page. . . out both the board and the instructions. It works great when you don't have your voice machine. As far as driving goes I bought my wife a GPS and I gave up on trying to give directions while we drive. It's too distracting for my wife. And dangerous. Sorry to hear that you are having trouble. I wish we all had a miracle cure.

I wish I had an easy answer for you. Unfortunately every device I've come across has all those problems. I have learned to be an excellent listener. A lot of the time after I get home from a visit I will email the person with all the things I wanted to say but couldn't. Also, it helps if you or your caregiver reminds the person your speaking to to ask yes and no questions. Another thing I do is if, for example, I'm going to church. I will print a paper for my caregiver of things I would like to say to specific people. As for personal needs you really have to rely on your caregiver to know your signals that you need something. They pretty much need to anticipate your needs. I've learned to accept that I can't do or say everything I want and I just have to let go of it. It takes lots of patience on both sides.

I know exactly what you are saying and one thing i can tell you is what worked for me was i had my doctor write me out a prescription for xanax and it helped me enough to the point that i could deal with handling people moving on with the conversation while i was still on the first topic.I would go back to it and if they acted like it bother them i would just act like i knew what i was talking about (which i did) and smile at them. Then it was up to them to remember and put my response with the topic that it went with. After a couple of times of doing that and i learnt who my true friends were and who was rasied right to go back and be cool about it. Does any of this make sense? And i will be honest a couple of times i have asked them 'If you were sitting in my chair would you want to be treated like you just treated me; being rude and rolling your eyes and mumbling under your breath because let me tell you that isn't very nice?!" After i done that a couple of times then they started slowing down which allowed me to get in and follow along with the conversation.I have made quite a few friends like that and i have lose a few too!!I hope i have helped a little bit.

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