beginning of slurred speech, what do I need to do?

[Sequoia]

Hello pals, I know this is not a new subject around here, but I thought I'd get brave and post my first thread. I am starting to slur certain words, usually at night when I am tired. Friends have begun to notice it so that is helping me come out of denial about it. I have several questions. How long before you start out with a few slurred words until you get to the point where folks cant understand you? What things should I be looking into ahead of time before i get there? What exactly is voice banking? Remember, I am absolutely clueless about all of this so write as a text "For Dummies who have ALS", ok?

 

[joelc]

Sorry you are starting to experience the beginning signs. Unfortunately it is impossible to give you a time line as everyone is so different.

Voice banking is just that - recording your voice so you can use it later in a program. Model Talker is the program and it is free. I tried it and did not like the quality so did not use it. I use a program that Barry told me about called NextUp Talker (costs $100.00) which comes with an excellent voice.

Read about it here; TextToSpeech

 

[SueG]

Hi Sequoia - I'm with you. My slurred speech was my second symptom after loss of hand dexterity; that was in August and it is gradually getting worse. Only my family and a couple of very close friends know about my diagnosed so far. People (other than those closest to me) haven't commented on my speech, so either they are being polite but secretly wondering if I am a lush, or it is not as noticeable to others as it is to me. I would add to your questions: are speech troubles always followed by swallowing troubles, or are those two things more-or-less independent?

 

[BarryG]

Sue, my slurred speech started in July of 2007 and my swallowing problems started by the time I was diagnosed in January of 2008. I was pretty much completely unintelligible by the spring of 2009 and went completely peg tube this January.

I would say that if you are having the start of bulbar issues (slurred speech) then you will likely experience the other bulbar issues too. No way of knowing when though because we are all different.

 

[Miss]

My husband started slurring words this past January. He is now very, very hard to understand. On the other hand, had a swallow test done last week. No signs of trouble - none.

 

[Sequoia]

Thanks pals, Im learning some things from you. Joel, thanks for the link, it gave me ideas. I have always admired those of you on the Forum with bulbar symptoms, all the while hoping and praying mine would stay way down there in my foot! Ha HA! Well, move over buddies, make room for a newbie. I sure would appreciate any words of wisdom about how you made different decisions about which gizmos to use for communication, costs, what was covered and what was not, ect. Most of all prayers! This is getting scarey. But I know alot of you have gone this way, and you are really inspiring to me. Isn't it incredibel that we don't have to go thru this all alone, that we have each other rooting for one another. What a difference it makes!

 

[Judith]

Hi Sequoia,

Sorry you are getting bulbar symptoms. I was Dx with PLS, so my distance from slurring to unrecognizable speech is probably slower than ALS, but it took approximately 3-4 months. After that time, only my husband and sister could make out what I was saying, and that was because they looked at my lips. I had no clue about SGD’s (speech generating device) until I could no longer be understood.

Have you applied for Social Security Disability? Once approved they automatically offer PALS Medicare. I had to wait 2 years for Medicare because my Dx was PLS (go figure). Medicare paid 80% of my SGD and my Supplemental Ins. picked up the remaining 20%.

When I started doing my homework to see what was out there, I went online and googled "SGD" and found many companies that offer the devices. I studied the ones that I thought would work for me until I had it narrowed down to 2 companies. When my Medicare kicked in, I was ready to see a (SLP) speech language pathologist. She had no clue about SGD’s, so I walked her through her part. Your SLP will call the companies and have a Rep come to her office to demonstrate the devices you are interested in.

I had no clue about voice banking until my speech was long gone. Some of the synthesized voices are fine. I hope you can get your voice banked. I would do that ASAP since you are already slurring.

Before I got my SGD, I used a 8x11 dry erase board and the dry erase markers. My husband dressed the board up with a shoulder strap and also a place where I could hold my marker. If you look real close, I am wearing it in my photo.

Judy

 

[LizT]

sequoia- My PALS doesnt use an electronic communication device. I would think that using one is quite a bit easier, but i would also think there is cost with it. Maybe its not much- i dont know. He uses a chart and spells things out with eye movements (he is locked in). If you are interested, let me know and i will PM you the chart!

 

[Sequoia]

Thanks Judy and liz. I dont qualify for SSDI, but possibly SSI. My ALS clinic social worker told me that since i was not "working" for the last 20 years, I dont qualify for SSDI, which is based on what you put into it over the years you worked. However, I probably do qualify (in the process now) for SSI which is need based. But I have to check with my als clinic speach pathologist to see if SSI will pay for whatever gizmo I need. I am definately going to start voice banking, any ideas of where to find help with this? I am such a communicator, I dont think I could handle a simple eye movement chart, unless I too become locked in, unable to move anything. I have a laptop, a pretty good one, so how do I go about using that for voice bacnking. There are gizmos which can use voice banking on computer and turn it into a way to communicate. Is there special soft ware for this? Judy, could you pm me about which 2 devices you narrowed it down to? I will also google as you did. Any pals on SSI, would love to hear from you! Liz, could you pm me the chart, for future possible needs.
This forum is a gift from God and I am very grateful!

 

[Phil M]

Took about 2 years for my speech to become no comprendo..

 

[Madison1943]

Hi, I first noticed having trouble saying clinic or day lily exactly a year ago. I think it's worse now, but I can still say words, especially if I try real hard. My voice is still strong but that's just because my lungs are still good. I haven't had much trouble at all breathing. I think my disease has concentrated on my limbs so far. Ain't it a picnic.

Good luck,
Carol

 

[Madison1943]

Hi Sequoia, another thought--the ALS doctor I use from hospice said the nerves that control the swallowing are completely separate from the ones that control the voice. So just because you're slurring words, it doesn't mean swallowing troubles will come next. Some day for sure, but they're not in lockstep. Of course, my disease started in my toes, and ran up my body as fast as it could. It's bothering swallowing now just for pills. Big pills first. Oooh, what an ominous feeling I get from just writing it.
Good luck,
Carol

 

[jimth]

Sequoia, my speech is starting to slur as well and one thing the speech pathologist at the ALS clinic suggested was recording my voice and phrases I commonly use on my computer sound card while I still have some clarity. Once my speech goes the words and phrases I recorded can by loaded on a memory stick and then uploaded onto whatever speech box I choose. This way my natural voice will be projected when I use the box.

 

[SMillheiser]

Sequoia,

I may be able to get a communication device N/C for you if cost is an issue. If you are interested, please have someone call me at 949-233-3045.

Stu ALSGuardianAngels.com

 

[stephie]

Sequia,
Medicare paid for my husband's computer. Hopefully you will find out quickly if you will receive SSI. Once you know, I would advise you to check into a computer right away. We had to do a couple of appointments with an OT to prove the device was necessary before Medicare covered it, then it took about 2 months to receive it after the orders were put in.

My husband first started experiencing slurred speech about 3 1/2 years ago and it took about 1 1/2 years for him to loose his speech. We did not know about voice banking until it was too late, but I have to say that his computer voice really has become "his" voice.