Question about Bulbar ALS communication options

[hopeandlove]

My voice is getting worse and worse and I fear losing touch with friends and family, especially those who live out of town. I've always used the phone in the past, but that is getting more challenging. Not everyone is computer savy. Any suggestions?

[georgia]

We have a DynavoxV you can use it with a speaker phone the other person has to be understanding on the wait time. Some people my husband just tells me to tell them ... rather than try.
See you are from GA more PALS live in Atlanta we are the only one in Stephens CO but go the clinic at Emory.

[brooksea]

My husband also has bulbar onset. He will usually tell me what to tell the other person, or I will intervene when it seems that the other person cannot understand him.

Speech Pathologist at Emory suggested he point to the first letter of each word he was saying. The letters are in large print on sheet of paper he can carry with him, but he so far has not tried this except at the clinic. It does help, as the first letter is what falls off when your tongue muscle can't get the words out. Also there is a sheet that has words or short phrases that are said often that you can carry with you. You can make up your own using your computer and printer and laminate them if you like.

[Niecie]

Good Morning! My mom has Bulbar Onset ALS or Progressive Bulbar Palsy. She lost the ability to speak around July of this year. She uses a communication device called a Vantage Vanguard made by the Prentke Romich Company. She is able to put her home phone on speaker and use the machine and I can hear what she is typing. I have to be patient while she types, but it is worth it to be able to "talk" to her over the phone. There is also a telephone that works with this device, but we have not gotten it yet. No one told us when my mom was diagnosed (Jan. 2008) that we should make recordings of her voice. If you still have any voice, you should make recordings. I know it does not sound like your own voice anymore, but I would treasure having my mom's voice recorded somewhere. Good Luck!

[Jennifer51]

I have bulbar onset, started slurring almost a year ago...now voice is almost gone...how I wish I had recorded my voice back then...would not like to listen to it now...I only hear it on our answer machine now, and long to get it back...but anyone out there who has bulbar...go and get recording...I have a lite writer on loan but dont think much of it...I am getting a small laptop soon with some good text to speech software..at least I will be able to communicate without having to look at puzzled faces of well meaning people who are trying their hardest to have a conversation with me....Oh how we all took our voices for granted

[Kevinski]

I too have bulbar onset and have lost the ability to talk.I use a dynavox brand called a Dynawrite.Has a hook up for the phone .Is not perfect and far from a regular conversation of the past on the phone,but my family that are far away enjoy being able to communicate with me this way on the phone.It is better than nothing.It is easy to operate ,but the cost was about 5500 canadian ,i was lucky in that in our province the government paid for it except for 500 that i had to pay.Am unsure what is available in your area for getting such a device.If you can get one I would recommend it.Hang in there ,this diaease is no walk in the park but I guess we have to do the best we can ...Kevin

[BethU]

Jennifer ... I have my original voice on our answering machine, too. Sometimes I let the phone ring just to hear it again.

At the clinic last week, I took my LightWriter to the reception desk to ask something, and pressed "speak." Worked beautifully, but the receptionist started scribbling something on a note pad. She was writing out a response! I told her "I can hear just fine." But that was a logical assumption on her part.

I just got business cards that read "I am unable to speak clearly. Please be patient." On the other side, I have a little info about ALS. I've decided that putting strangers I have to talk to at ease is the best way to handle all this, so hopefully the cards will prepare them for what I sound like, and also spread a little awareness.

[hopeandlove]

I have a computer with a voice program that I've used over speaker phone. But it is still hard for some of my family to understand. Hard of hearing parents and Bulbar ALS not such a good match. I just really wanted to see what my options are. Unfortunately my voice is beyond recording at this point. I love to talk so this is a challenge. I'm becomming a good listener, but I still have a hard time accepting this disease. Beth kudos to you for taking the high road. I was offered those cards and turned them down. Most people are pretty patient with me, but my typing has slowed down. Somedays its hard to stay ahead of the game. I find one solution and then the next day I'm tweaking my solution. Thanks again for the suggestions.

[brendapals]

hey there hopeandlove,
Yeah, wished I had recorded myself 6 months ago. Not so good now. But I also call my home phone and my cell phone from time to time, just to recall the voice.
I too am a huge talker, very difficult not to talk all the time! I'm adjusting to the new normal every day though, just keep thinking someone out there will find a cure!
stay strong and take good care,
brenda

[Danijela]

Hi everyone,

You refer to recording your voice. Is this in order to use the recording with some communication device later, or just so you have a personal record of it? I am asking because since the diagnosis I have been increasingly noticing my partner's slurred speech (maybe I am hypersensitive at the moment). I feel that if he really concentrates he can pronounce the words clearly, but often I have to ask him to repeat the word, or a part of a sentence. I have also noticed people's post about 'stumbling' over words as opposed to slurring. It may sound obvious, but could someone explain the difference, and clarify if both are associated with weakening of the same muscle group. Many thanks. Danijela

[Jennifer51]

Danijela....people normally record voices to add to a communication device...familiar phrases or requests etc...oh how I wish I had recorded messages for my small grandsons to tell them that nannie loves them etc...My eldest grandson, nearly 3, says, nannies lady in the box, about my litewriter....Oh how I wish he could still hear my voice, even recorded..it breaks my heart...

Bethu...I wrote up my own cards on business cards and laminated them and attach them to a string...It says....PLEASE TALK TO ME NORMALLY....there is nothing wrong with either my hearing or my intelligence, it is only my illness which makes talking difficult for me... So far it has seemed to work well...I was fed up with people saying H-O-W C-A-N I H-E-L-P Y-O-U etc.

Hopeand love...I too have a hard time accepting this damn thing...every morning I wake up and think, ok, this is all a bad dream, think I can leap out of bed and run and shout...but it just dont work like that...I try as hard as I can to think mind over matter and beat it....

Brendapals cure.....I posted a link some time before, but this is a better link to some hopefully good news. I am pestering anyone and everyone I can in the UK to try to get in on some action to AT LEAST delay this thing even more...I have contacted the hospital concerned asking about their stem cell research as we have 2 more grandchildren due and hope to save the cord blood...just in case...so I have asked the hospital for any info they can provide which might help...oh no, lost the link, will send another reply

[Jennifer51]

here is the link I lost

http://www.kcl.ac.uk/news/news_details.php?news_id=950&year=2008

[BethU]

Danijela ... I don't know about "stumbling" over words, but my slurring seems to primarily involve my tongue, cheeks and lips. It is the tongue's position that causes me most of the trouble, and back when I was taking speech therapy, my "homework" was to read and repeat words with specific sounds over and over. Also, the therapist gave me mouth exercises to do.

Now, I could not pronounce an "L" or a "G" or an initial "C" if my life depended on it. The worst development for me was in the last couple months, when I found I cannot say vowels clearly. Up until then, it was all consonants. People can't tell if I am saying "yes" or "no." Yikes!

[hopeandlove]

Jennifer51... Keep up your persistance with the stem cell research- I wish you all the luck. I'm in the US, but I'm hopeful there is something out there. Somedays I try to pretend nothing is wrong because it truly can be so depressing and other days I just want to search every medical journal I can find b/c I'm frustrated there is nothing more I can do. I was just reading up on some of the clinical trials, but I have such mixed emotion about these. The Ceftriaxone study looks interesting because it is in line with the Detoxifying glutamate study that came out this month. But my biggest fear is of progressing this even faster. For now it is day by day and I'm looking forward to Christmas with my family.

[brooksea]

Danijela,

If the voice is still strong enough, Voice Banking can be done.

Here is the link to University of Deleware:

http://www.asel.udel.edu/speech/

My husband downloaded the program and tried to bank his voice, but his was too far gone to properly record. The sooner it is done, the better. The program was free at the time we looked into it.

Good luck!

[Danijela]

Yes, voice is still strong. Thank you for the link, will certainly look into it. Danijela

[Tfisher]

My mom uses a Lightwriter, has a Dynavox TTL phone (but does not use it) and has several grease boards to write on but goes through the small pens with the magnets like underwear. I unfortunately heard about the voice recording this summer but it was much too late. My next plan is to try to get some software that will do a better job talking for her than the light writer.

[Jennifer51]

I have the litewriter on loan, but am not too impressed with it, glad I didnt buy it, and for me it is still much easier to type on a keyboard, the litewriter is a bit too small to do that, so I have just ordered a 10 inch netbook which has a standard keyboard...then there is E triloquist which a free download for people with als...text to speech software .and my speech therapist says they can supply all sorts of software for it, when I can t type...so there is a lot out there. So wish I had known or thought about voice banking when I could still talk reasonably well.

[BethU]

I have now achieved full membership in the Geezerhood Society Ladies Auxilliary.

My new DynavoxVmax arrived a couple months ago, and one nephew put it together for me, a niece got the battery charged, and another nephew assembled a computer stand for it (natural birch finish, easy assembly). Yesterday, the saleswoman who conned me, er, sold me the device came by for my first (and probably only) lesson.

Since it's too heavy for me to carry anywhere, and I can't see asking visitors to stand around in the den while I type out a conversation, I told her I just needed to know how to use it with a phone for now.

It's got a gazillion screens filled with tiles with pre-printed messages, such as "Hi." Or you can change the screen to a more formal conversational mode, and it will say "Hello." I could probably type out War & Peace before I could find the "Hi" button, but that's a moot point right now.

Turns out the saleswoman had never used the phone component before, so it took a while for her to read the instructions. We finally got it working and she was doing various tasks tapping away at the screen when the phone rang. A real, honest to gosh phone call coming in on my Dynavox.

Of course, I panicked. She, meanwhile, answered the call ("hi") and started a conversation with my pharmacy. I then did the only thing I could think of, and started shouting at the Dynavox, trying to get in on the conversation. "WAIT. HI!! I NEED TO ASK YOU A QUESTION. NO, DON'T HANG UP. IT'S ME, THE ONE YOU'RE CALLING." Finally I ran (limped furiously) into the other room for a "real" phone just as they were saying their goodbyes.

When I went back to the den, the nice lady said "Your prescription's ready."

Yeah, whatever.

The good thing about this: I had planned on using a male voice on the DynaVox to get a little more respect, but it turns out I CAN GET A BRITISH ACCENT !!! It is sooooooooo cool. I sound soooooooooooo classy.

Now all I have to do is remember shouting at the Dynavox doesn't work.

I tell you, ALS ain't for sissies.

[brendapals]

oh Beth,
I just love your stories, you really should put together a book!

Of course, I have my brother's old dynavox, it's heavy, bothersome to pack around, and so far I haven't found a way to get the "voice" where anyone but me ( reading what I typed ) can understand it.

I've tried "ursula", and "wendy"- don't know if these are old voices, or what. A friend of mine updated the software last month, but it still doesn't seem like the "right fit" for me.
Thus, I will continue on with my slowed, slurred, spitting, silly voice, un-sissified as possible, until I have the time to work with the dynavox more.

Good thing we're tough geezers, huh?
hugs to you,
brenda

[BethU]

Try "Audrey" if you have her ... you'll never drink tea with your pinky down again !! :-)

[CindyM]

Now all I have to do is remember shouting at the Dynavox doesn't work.


Nor does shouting at the computer, or traffic, or anything else that aggravates us. But I keep trying, Beth! LOL.

[ilgal]

I have a dynawrite with the phone accessory. It does work but 1) some people cannot understand the synthetic voice and 2) even if they can understand it they don't realize how long it takes me to type a reply and often hang up thinking I have ended the call.

So now I'm using TTY like deaf people use to communicate by phone. You still type and that's slow, but there is a relay operator who speaks what you've typed to the person on the other end and explains to them how it works. I haven't used it to have a chatty, personal conversation and probably never will, but for making appointments, checking on things I''ve ordered, renewing library books, and checking with my husband about when he expects to be home from the office, it has worked fine.

Illinois has a program that provided the equipment free and the relay service is free too.

Hope this helps someone!

[CindyM]

This sounds like a good idea. Massachusetts has this service, to. I bet a few states do. Thanks for sharing!