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 only speak for myself

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, diagnoseded at age 40, 8/2004)

 

[TRACY22]

sorry but negative today

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]

communication

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]

relay call

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!