Can You Hear Me?

[rose]

Barry, that is true, but my intention was not to be a downer. I guess I found it interesting that as much as things change, they're still the same, we talk about the same things, some humor... a bikini mentioned somewhere (if I remember correctly) even though frustration was expressed in different words, the situations remain the same.... and the The book mentioned (about coping with spouse with chronic illness) sounded good.

 

[BarryG]

Rose, it is so true. Plus ça change, plus c'est la même chose

I especially liked the first post by jimO. I mean, this says it all for me

"Can You hear me ?
My mind is speaking loud and clear, can you hear me?"

I wish for a day when no one has to ask this question, I was never a big talker (just ask my wife) before and now it is just so damn hard to talk.

 

[flower]

I am still sort of new to this I been reading a lots old ?thread they have answered a lot of my question. this about do you hear me,is especially good. I have been having a lot of problem in this area . I know we can type but it just not the same ,I still have lots word left i want to say, mean, mean old als

 

[handinhand]

I had a man come up to me in a restaurant and asked me where I got my iPad? Not thinking I started to answer him. Just a bunch of garble came out...so embarrassing ..before I could start typing he reside away..don't blame him I guess? Sad though ...Lin

 

[pepsiman]

Thank you for that jimO. I know for a fact that my wife gave up when she could no longer communicate. The Dynavox just took too damn long to get here and when it finally did, she didn't have the strength left to put it to good use. All of her life was about human interaction. When that became impossible she lost the will to live. I too am glad for the technologies, for all of our PALS, but I'm still upset about how hard we have to work to get them when we need them.

Dick

 

[brooksea]

Awwww....Lin! Sounds like you need to have a sticker on the iPAD indicating

"I communicate using iPAD, be patient. I have Lou Gehrig's" GOOGLE IT

At least you could point to that sticker first!

 

[luvnmm]

I believe it was a red string bikini...we've gone from string bikini's to Break the Wind...I think I love both of them. My mom found this thread when Barry posted to it. She told me I should read it. I did... Sometimes there are just no words to describe how you feel about a certain topic or situation. I think this is one of those times for me. My mom is having a hard time talking though I don't have a problem understanding her and sometimes I just know what she's going to say. She has a dry erase board when she gets too tired or when she's giggling and can't talk. I know it's just going to get worse for her. I have to know that God will see us through this...

 

[mare]

So, does anyone know the title of the book that was talked about in the old postings?

 

[kelly]

The initial post really meant so much for me to read. I am sure that is the way my hubby feels a million times a day. Once management always management. I know I drive him crazy on my approach to certain issues. He was always a get the job done guy. Now, he has to wait until I get through my list. He always knows the right way to do things...thank goodness for the eyegaze so that he can still communicate with me.

 

[haase]

Even tho I have limb onset ALS, my speech has become very thick and nasal during the 8 mos. since my diagnosed, and I identify so much with not being heard. The frustration is intense for an ol' blabbermouth like me! :smile: This thread makes me weep for myself and all PALS who have to try so hard to be understood.

 

[rose]

Yes, the initial post, and even its subject title is poignant.

Mare, re: book It says: "Surviving your spouse's chronic illness" by chris mcgonigle, ph.d (in post #43) I have not checked to see if the book is still available.

BTW, there is a way to set how you view threads on the forum; newest or oldest first. I have mine set to view newest responses first, but I get the feeling I'm in the minority. In the user control panel there is an option to change this...

 

[tdamess]

i actually like the mix as much as i love ode to toung , i like this one it makes me relaise whats to come and understanding the feelings of what my loved one iwill be going thur and how they feel it is insite to me thank you all

 

[tomby]

Breaks my heart to see the little gray squares under everyne but Al from the old posts. It was 5 yrs ago, but could have been yesterday. The constant is this forum- some place to go where everybody understands. Thanks Rose for pulling this up.

 

[Al]

We used to have a lot of fun back then. I still hear from Carole and TBear once in a while. Their spouses are long gone but not forgotten. Theresa 2004 had a friend who turned out to not have ALS but stayed with Lee and I to co-chair the Brampton and Orangeville walk for ALS. The rest as far as I know are either gone or moved on with their lives. The forum was different then. Not better or worse, just different.

AL
Ps. Never did see Carol in the red bikini.

 

[Marypotter]

hi every one,
I think loosing my speach has left me in a silent world. I use computer and when I can not use hands. I use my head to tip switch and all the shaking of head is making me dizzy. I can not win. I always taught loosing my speach was a living night mare but now with muscles getting weaker in neck I am afraid to think what is next for me. I would not mind now with not being able to speak if my neck muscles were left alone. I was looking up motor neuron disease breaking news and it is looking promising that a cure for this disease will be found soon. This disease really really sucks.