Losing Speech

[mlbugge]

My husband has lost the use of his hands completely and his speech is becoming more and more slurred. I'm very worried about what will happen when he can no longer communicate with me. How will I know what his needs are? I think I read something on a thread not long ago about a "voice bank". Can anyone give me information on this?
ML

 

[clewbcg]

Banking Voice

Hi ML
My husband is also losing use of his hands and is slurring very badly now. We have been looking at a "dynavox" device which lets you put your own voice in and then you hear it back when you put in typed or picture statements. For example he can record himself saying "I love you" or "Im hungry" and then "type" or "point" to a picture and his voice will come out. They have "head mouses" which allow the pal to point with his head at letters or pictures. They are coming out with a "retina scan" device in June for people with poor head control. Dynavox has things from simple to elaborate. Medicare will pay most of the models-even the $8000 one. I too am so worried about losing communication and we are trying to get this before too late. You can also just record on a cd through a microphone on your computer simple phrases now which you can later put on the dynavox. Check out their website under "dynavox". Best of luck to you and your pal. Not being able to talk to my best friend and husband is one of my biggest fears with this. I know just how you feel.

 

[John15]

My mom had bulbar ALS. (My sister, Anne, used to post on this forum all the time, and still does on occasion. Those of you who are regulars here probably read all about what was happening in our family.) Sunnybrook (Toronto medical centre) told us about various communication devices, and we tried them, but in the end the only one she kept was the one with various pre-recorded messages. She only used this on the phone. Otherwise, she just wrote things down. We have at least a dozen notebooks filled with things she "said".

ALS in any form is a nightmare. To me though, the loss of speech was absolutely devastating to witness. Not being able to swallow as well was horrendous. Watching her trying to eat even pureed food was like watching someone being tortured. She got a feeding tube eight months before she died (last September). Without it, she would not have lived as long as she did. She was mobile, but toward the end she had severe breathing issues; as a result she could not walk hardly at all without feeling totally wiped out.

This illness is absolute hell. My prayers are with those dealing with it. Seven months later, we miss our mom more than ever. I expect we always will.

 

[Icanmanz]

I agree with you 100% John, about Als being hellish. It will soon be a year since my son passed from this horrendous disease at the age of 38, 15 days shy of being 39. On June 3rd it will be a year, and I still miss him like crazy. I long to see his smile, and hears his voice and laughter the way it used to be. What an experience! God bless you all!

Irma

 

[Al]

if you go to the top of the general discussion section you will find a sticky called voice banking guidelines. If you click on this it will direct you to the section where the voice banking guidelines can be found with the instructions on how to use them.
AL

 

[John15]

I agree with you 100% John, about Als being hellish. It will soon be a year since my son passed from this horrendous disease at the age of 38, 15 days shy of being 39. On June 3rd it will be a year, and I still miss him like crazy. I long to see his smile, and hears his voice and laughter the way it used to be. What an experience! God bless you all!

Irma

So sorry about your son, Irma. Losing a person you love is always extremely difficult and traumatizing, but I know for a fact that losing a child (regardless of the age) is a category of excruciating pain in a class all by itself.

Someone once told me that, difficult as it is, you always expect one day to lose your parents. But you never want to outlive your children. We lost my brother to leukemia in 1971 when he was 14, and it was absolutely devastating. My parents never quite got over it, and all these many years later, we've never forgotten him. Your son will always live in your heart (though I know you'd rather he be here, and well of course).

 

[Icanmanz]

Thank you for replying John. Such a soothing post. You are right, the pain will never go away. The stages that I went through were so out of this world, that I have a difficult time sometimes to try to describe them. I am at peace now, but every now and then, I still break down. Just like the other day, I was going over to my other son's house, I stepped out of the house, got in my van, and drove off. I rolled the window down, just wanted to feel the morning breeze, I thought to myself, "What a beaytiful day!" Then this thought went through my mind. I wanted for my son to be here with us soooo bad. I thought to myself, why isn't he here with us? Then I started to cry. You will never forget. Like I said, I am at peace, but I still cry now and then. That is the reason I am still on this forum. Something tells me that my son would have wanted for me to remain here, and be of some help, if I can. May your loved one rest in peace, along with my beloved son. May God bless you.

Irma

 

[John15]

You're welcome, Irma. I'm glad you are at peace. But I think it's normal for tears to come on occasion. My sister and I were extremely close to our mom and we still can't believe she got this horrible disease and is no longer with us. Some days you feel fine, then something triggers a memory or thought and you just yearn for "one more day" with the person you've lost. We often say that it would be so good to just get a glimpse of where she is now to see with our own eyes that she really is okay, though of course we believe that she is. We were so close, in touch every day and it just feels so weird to not have that contact.

Lucy Maud Montgomery (author of "Anne of Green Gables") wrote that "tears are God's way of melting a heart frozen in grief".

I hope you will find strength and consolation in good memories of your son. I know that one day you will be reunited, just as we all will with those we love who are no longer here, and there will be no timelines or threats of impending ill health placed on that reunion!