ALS/PBP and Communication

[speechie1]

Hi all! I am a Speech-Language Pathologist working with two patient's that have ALS (both Bulbar onset/PBP). I need your thoughts on a statement that a hospice employee said to me. Any comments welcome! :)

She said "Most patient's don't want to live past the point where they are no longer able to communicate."

Is this true? What are your experiences?

It is hard for me to swallow as a Speech-Language Pathologist.....there are always different ways to communicate! (AAC Devices!)

Again, any help would be greatly appreciated! Thanks again.

P.S. This website is so full of care and concern, and genuine heartfelt empathy that it brings me some sort of overwelming peace just reading previous posts. Thank you all for that! God Bless.

[paula B]

I think i would agree with that statement. I am not saying all als patients feel that way,,i am speaking for myself.
I do not wish to live as a vegetable. I also cant see my family wanting to see me live that way. I am not going with feeding tube or vent.

PaulaB

[speechie1]

Thank you for your honesty Paula. I sure appreciate it! I want to provide the best services to my patients, and the wisdom of others with ALS is priceless. Thanks again.

[anne]

speechie1....My mom can no longer communicate verbally. She has been diagnosed with motorneuron disease, june 06. When her voice started to go slightly she did mention that she would rather die than not be able to talk. I think her feelings have changed. She is extremely mobile, excellent fine motor skills. When she was well she loved to talk on the telephone. That was her source of entertainment. She does not drive so the telephone was her method of keeping in touch with relatives and friends both here and overseas. It is a very lonely disease. However, she communicates by writing things down for us if we do not understand. I call everyone that she wants me to call and she writes down what she wants me to discuss and she listens on the other end. She is very active and enjoys cooking, gardening, sewing and cleaning her house. I hope things do not progress but only time will tell. Anne

[lunarruna]

With all the technology available, hopefully people with ALS do not lose the ability to "communicate"...yes they lose the ability to talk, but many (most?) now can get insurance and Medicare funded communication devices of many kinds. My husband hasnt been able to talk at all for 10 months but we 'talk' all day long as he uses a speech synthesizer and computer that he controls with his head movement. Even when people cant move there is "eye gaze' technology to control these devices with eyes. If you read these type of forums you will learn of many people living with ALS for decades or so that cant talk....
Everyone is different...my husband is much more upset about not being able to move at all than in not being able to talk. What I have learned with ALS is that no one can make any assumptions about when someone else will want to stop living. My husband is not going to go on a ventilator, for example, but he did chose to get a feeding tube.......you will find examples of every level of choice. Nothing comes of trying to categorize folks.
It is truly amazing all the technology available to help people with ALS communicate!
Beth (CALS to husband Shannon, dxed at age 40, 8/2004)

[TRACY22]

Do people/family really want us to talk? when your voice declines to the point of evaluation it takes a month to get the appointment. Then the speech person blows off getting the out of state Dynavox rep appointment for 3 months. You then wait another month for that appointment. Next pvt ins wont pay as medicare may pay. Factor paper time now. Then it is only set to communicate with people in your room.(pay extra and connect to pc and u might get to talk to people durring the day while u are alone). You also need tech skills to learn and teach the devices.

ok...moving on... SEMPER FI

[speechie1]

Hi, and thanks all for the great responses!

I whole-heartedly believe that it is 100% up to each individual patient. I just found it hard to swallow when she said that "MOST" people prefer.....I think it is partially because that is my JOB! To help people communicate! I also don't think that many people know of all the options that are available to them to assist with communication.....her included!

TRACY22, I am truely sorry for the way you were treated by your Speech-Language Pathologist, and please do not let one person ruin your view of the rest of us SLP's. I have been working diligently with two patients and their communication devices. However, I would have really lit a fire under my butt with a diagnosis of ALS, beings it is a progressive degenerative disease! Please accept my apologies for the way you and your family were treated. Communication is such an important part of life. I wouldn't have a great job if it wasn't important!

[Al]

Well my dear things are better in Canada. I talked to a lady on Thursday that was asking her hubby questions and he was answering on a letter board system. I'm not sure if it was hi tech or low tech but she was spelling out the letters as he was pointing them out. I could hear her on the phone. They have small children. She says that her children talk to him all the time. If I call my OT I can get in to see her in a week or so. The last time I needed software for my computer it took 3 weeks to get in and 2 more weeks for the software to be delivered. I got the bill for 2 programs this week and it was $35.40 for one year lease.
Yes I want to talk. If I didn't I wouldn't spend a few hours a day here. And if I wasn't I am sure there a few people that would not be happy. This disease makes you have to adapt. How much you adapt is a personal choice. A spoken word is important but as some wiser person than me said a long time ago " The pen is mightier than the sword"
Being able to communicate no matter how you do it is paramount. AL.

[ronney525]

e-triloquist works great.free download on internet........... i had a lightwriter but did not like it or us it. i generally use a simple white board w dry erase markers. another thing to use is te internet relay calling services. its free. u call.u type and an operator reads your messages, then other party has relay type their response. great way to stay in touch.make pesonal or business calls..............
http://www.relaycall.com/national/relay.html

[Pearl]

Ronney,
Please give me more info on how this relay thing from ATT works. I've looked at the website.

I'm assuming that the caller makes the call on the internet, but does the phone recepient just answer their phone and then speak with the communication assistant with ATT? Can you explain what the experience is like for the person on the receiving end of the call?

This sounds great for someone who is having trouble speaking, but I wish I understood more how the process works.

Thanks,

[ronney525]

you place the call by typing the info, number etc, ... the recipient answeers theie phone, they are told it is a relay call. u then tyype your end of the convo...........it is read to them,,, they respond and that is typed to you. and on and on. the only difference is there is a little lag time. other than that i,ve had lengthy convo w family and friends. try it out. at first i was a little intimaded by it, but now its a snap.good luck.

[Pearl]

Have you ever used it to call businesses or to order pizza or something like that? I'm wondering if "strangers" (people not familiar with the service and reason for using it) are receptive and do those calls go well?

Thanks!

[ronney525]

yes, i've even called social security. the relay operator explains how it works to person who answers. most places are very accomodating

[speechie1]

Thanks ronney525 for sharing your experience! Relay calls are so helpful not only for the deaf, but also for those who can type, but can't talk! That's a great idea that I will be sure to share with my patients......now that I think about it, I'm not sure that they are the best typers, but at least it is an option! THANKS!

[Kathy]

Hi everyone!
I'm new to the site and want to tell you about my husband. He was diagnosed with bulbar als over 2yrs. ago. His lung capacity is now at 20%. His voice is very weak and I think losing his voice scares him more than other symptoms. He is such a joy to be around . He never questions his lot in life and can often still joke about things. He tells me to always keep the laughter flowing. What a guy!!!

[gilly]

in keeping with the theme of this thread... i just returned from a visit to my aunt. she has bulbar onset of als and her speech is getting extremely difficult to understand. her tongue shrunk. i couldn't believe it. and she can't pucker her lips or stick her tongue out.

anyway, what i found this visit was that she gets VERY upset if she's trying to speak and people just nod "yes" without really understanding so they don't hurt her feelings. and also, she gets worked up with people who try to finish her statements when she's talking to people. i think she's very afraid (of course) of not being about to communicate and she doesn't want to know a thing about machines that speak for you or anything like that. i guess time will tell if she changes her mind. she's got another granddaughter on the way so i would think she'd like to be as strong as possible for when the baby comes but she's resisting a lot of things.

on the other hand, she tried accupuncture and felt she had some great results. i know there are tons of debates about this sort of treatment but... whatever works for you.

however, her speech is not sounding better to me. it's all so scarey. luckily, she laughs at herself and still has a very strong sense of humor!

love to everyone,
nicole

[GinaD]

My dad has bulbar onset ALS so his speech and swallowing were effected immediately. He had been driving, going to church, shopping....pretty much doing alot of things, except being able to communicate by speech, until a few weeks ago. He does write some and has a Dynavox speaking device. I tease him alot about how well we do at "charades" because he lets you know what he wants! lol So if the question is, do people want to continue living after losing their speech......I think it is up to the individual but I know my dad has done alot of living in the past year in spite of having no words left at all.

[Montana Carol]

My speech problem is my first and fastest-moving symptom. At first I felt like I wouldn't want to live once my voice was gone. (Although I'm still in denial that that'll really happen) :) . I thought I'd be completely isolated, unable to participate in conversations, and people would think my brain was gone along with my voice. But as soon as I began to read all your posts about alternative communication devices, and Model Talker voice banking especially, I learned that I can still speak in my very own voice and be just as gabby as ever (well, almost -- I've always talked too much, so maybe I'll have to be more concise, be a better listener, and think before I speak)! I've recorded a whole bunch of phrases besides the 1649 programmed words/phrases that the program required. I even recorded a laugh!

I'm trying to make a bargain with God now, that I'll be happy and grateful to use speech devices as long as I have my arms and hands so I can type, hold a book, play the piano, etc. When my hands go, then I'll be about ready to give up and croak, I think. I'm 70, so I feel like I've already had a wonderful life anyway. I don't like to think about my legs going, (God, are you listening?) but I'm ready to live in a wheelchair if I can still use my hands.

I can't say enough about Hospice and its volunteers. My mother and dad, who died from other things than ALS, were helped immeasurably by wonderful home and residential Hospice workers. They are God's own angels.

[bucky]

I have bulbar onset A.L.S. I began loosing my speech in Jan 06. I have no speech at all now and its been that since December 06. I cannot swallow and have a peg. As pointed out by someone else, I use E-triloquist on my lap top. I also purchased speaking dynamics. The Speaking Dynamics allows me to pre program talking points. I have set it up for answering the phone, going to the doctor and a number of other activities. I am in insurance so I have clients list the questions and then call them back and use the speaking dynamics to answer. It eliminates the individual having to wait while I type out the answer. I miss talking, eating and enjoying things as simple as a cup of coffee. But I can still drive, walk, and use my hands and arms. I try and focus on what I can do and not what I used to be able to do. As bad as this is I have met many brave folks who are an inspiration. Also, PALS are so helpful to one another as this site demonstrates. I always look for Captain Al's take on things. I also use Sprint relay. That works well to.

[barbaraW]

Thank you for all the great ways to augment speech.

Here is a simple way I can "talk" to my mom on the phone. It requires high speed internet (no dial up) and Instant Message.

My mom and I are on the phone (I put her on speaker). She talks and I respond via instant message. My message comes through instantly.

I am not a pro on instant message- a friend set it up- but ask any teenager, they are the masters!