How does UMN speech impairment progress?

[Tokahfang]

In November I started to lose my ability to sing more than a few songs, and reading aloud to my niece got more tiring. Then I lost my singing range, once a first soprano, and anything over alto would leave me hoarse for a few days. That was when I realized what was happening, but it wasn't very noticeable to anyone else. That all seemed pretty minor and I mostly ignored it. In the early spring, my voice started to become hoarse and gravelly if I talked more than usual, and stayed that way for longer. That was when my family noticed. Then high pitch speech cut out, and now I start the day with a bass rumble and hoarse, and my throat gets sore as the day goes on. I am always startled when I yawn, that is the most surprising thing as parts of it have no volume... silly, but true.

7 months since I first noticed seems like a slow progression, so for that I am grateful. There is not a lot of information out there on UMN bulbar by itself, so I have some questions. When is the appropriate time to start setting up a speech device? Are there things you can do at home to extend voice life? (I don't have good transportation, so until I do, a visit to the speech pathologist is out.) How does it progress from here?

 

[olly]

hi.
i am limb onset and noticed slurred speech a few years back.
it has not progressed much and worse when tired or have jaw spasms.
there are some here with bulbar pls onset i think judith is one,maybe pm her.
sorry i can't be of more help:smile:

 

[Tokahfang]

I also sent it to the mailing list, and the responses there were very varied. I am leg onset, but the symptoms have made it up my trunk and into my neck (both speech and swallow). I started with a cane 15 years ago, so I am happy for all the relatively able time I had. Now things are moving fast, and adjusting to it all is a challenge.

I am not shy about assistive devices, and I will use whatever will give the best quality of life. I also am not afraid to use a dwindling ability with gusto and enjoy it while I have it. If the length of my voice can be extended by supplementing it it when it gets too hard and painful, I would like to set that up. If it can't, or I am denying myself helpful exercise, I would like to live in light of that reality. Unfortunately, online literature is a bit thin, and from the mailing list responses, this differs from individual to individual.

 

[BarryG]

Beky, I am sorry about your voice and as a totally speechless person my advice is to get some kind of speech device as soon as you can. This will allow you to preserve your own voice and will also allow you to practice with the device while you can still talk.

The speech device does not have to be an expensive dedicated device, I have a netbook and an IPod Touch that both are running speech software and each system cost me less than $500. With them I can email, surf the internet, and talk in person and on the telephone (using a speaker phone).

 

[Tokahfang]

Those apple handhelds are too small for me, my hand dexterity is pretty shot. A friend of mine lent me a netbook for experimental purposes, and I read a lot about your setup. I did a test run today and I was very impressed! I see why you use external speakers, though. I waited too long to use a wheelchair, I should have been using it for range extension much earlier. I want to be prepared this time, not wait for life to screech to a halt.

 

[Judith]

In November I started to lose my ability to sing more than a few songs, and reading aloud to my niece got more tiring. Then I lost my singing range, once a first soprano, and anything over alto would leave me hoarse for a few days. That was when I realized what was happening, but it wasn't very noticeable to anyone else. That all seemed pretty minor and I mostly ignored it. In the early spring, my voice started to become hoarse and gravelly if I talked more than usual, and stayed that way for longer. That was when my family noticed. Then high pitch speech cut out, and now I start the day with a bass rumble and hoarse, and my throat gets sore as the day goes on. I am always startled when I yawn, that is the most surprising thing as parts of it have no volume... silly, but true.

7 months since I first noticed seems like a slow progression, so for that I am grateful. There is not a lot of information out there on UMN bulbar by itself, so I have some questions. When is the appropriate time to start setting up a speech device? Are there things you can do at home to extend voice life? (I don't have good transportation, so until I do, a visit to the speech pathologist is out.) How does it progress from here?

Tokahfang,
I had to wait until Medicare kicked in for me, so my insurance would cover the device. As soon as that happened, I made my appt. with a SLP. I did my own online research for a SGD (speech generating device)months in advance of my appt., so I had it narrowed down to a few SGD's that I was interested in. My SLP had no clue how to proceed. I was her first person who could not speak and was looking for a SGD. The Rep. that will come out to demo the products will guide your SLP through the process. Since you don't have transpotation at this time, use your time to go online and look at all the devices to get a feel for them. My limbs were not affected at the time, but they are now. I have had my device for 3 years now. It is small and awkward now to hold, so my advice is if you have no problem with your limbs, get something not to heavy (portable), but will be able to get accessories for w/c setup in the future.
I know of nothing to extend voice life. Sorry
From onset, it took 2 years to lose my voice completely.

Judith

 

[Tokahfang]

Thanks for responding!

My voice is moving fast, but I am starting to catch up. I experimented with a friend’s and then bought the components for a do it yourself speech netbook. Including the hardware and the software it cost me $410 dollars. The X-Mini speaker I found is tiny but capable of amazing volume, and I would highly recommend it. The package would have been cheaper, but I mostly trackball type with Dasher and I needed a dedicated trackball.

So far I have found that if I back off on talking when the tightness is there for every word and ending sentences is a challenge, a few hours of using a speech device instead will return me some level of volume and cuts the pain significantly. This is less a problem at home then out, it is when I go out that I realize how quiet I am! Everyone damps the volume down at my place, but two hours of shopping leaves my voice shot for the rest of the day. Unfortunately, I am also learning that using a speech device makes me less of a person in many people's eyes, and I am not yet used to that. The powerchair did that a little in the past, but now they think that they can decide what I am buying!

I managed to be bemused when the cashier at the optical store told my companion in certain terms that I wanted plastic frames, because I look down all the time and heavier frames slip more. Interesting fact: using a wheelchair means I have to sit looking up constantly at standing people. I wheeled out the next day with metal frames, thank you very much!

 

[Judith]

Beky, I am so glad you found a system. I go through the same thing about people's reactions when they hear a computer voice. It was ok when I was around people who knew me prior to the disease, but those who don't will speak slow and loud, as if I have a hard time understanding and hearing, or they will speak to my husband, like i'm not there. It is awkward for people and I understand. I rather have my husband speak for me anyway, because it takes too long to type my words.

jkt

 

[JeffP]

im right with you judith i let debbie do most of the talking for me .its hard at times i get upset if i have to repeat myself a couple of times ,but i know that they just cant understand me.i was listening to my voicemail messages to my wife and it hit me square in the face i sound like that it almost made me cry .ok illn let down the ego it put me into tears because it was an awakening how the disease has progressed .i have a dynobox still trying to figure it out but hopefully i never will have to use it

 

[Tokahfang]

My husband has a critical failure to communicate what I would have wanted said. I think I'll stick with my new voice, "Audrey" for those times.

The worst was after months of being stuck in bed, my mother in law asked why I wasn't coming to Christmas. When I explained the situation and that I was going to have to take a moratorium on life until I got a powerchair, she replied in shock "But junior said you were fine!"

 

[Judith]

Jeff,
sometimes I pull out my old cell phone and go to the address book (It had voice recognition, so I spoke who I wanted to call) and listen to my voice before the disease
What is the name of the device that you have from Dynavox?

Judy

 

[Judith]

Beky,
Do you find you can keep up with conversations? I was really amazed how fast people talk. You don't notice when you can talk also. I used to try to type in my device to join in, but when my words were ready to speak, the conversation had already changed about 5 times! When I finally spoke them, no one remembered what the conversation was.
I gave that up a long time ago.

Judy

 

[Tokahfang]

Honestly, it depends where I am and who I am with. My social group is adjusting very well. Whenever I start typing they wait quietly or take care to stay on topic, and when I look up expectantly they shush and pay attention. I am definitely a little more choosy about what I say, I try to get more bang for my buck. My fellow congregants at church are also very patient, and often read over my shoulder as I type. Things like shopping are harder, but ultimately the clerk does in fact have to wait for me on some level, and I am firm when they try to decide for me. I am mostly satisfied with how that is going.

Some groups are hopeless. I have no faith that my extended family will get better about giving me space to talk, as they have been universally bad at accomodating my increasing disability. I have no intention of trying to communicate to people who are busy and high, like bartenders. That my hubby can handle. Phone conversations are about 50-50 so far. I have a variety of phrases that speak without interrupting my typing to assure them I am still on the phone, keep waiting.

There are other situations I haven't hit after my voice strength is gone yet, and I am sure I have many challenges and frustrations to face. PLS has tossed lifestyle change after lifestyle change at me for 15 years, and I have lived abundanly through all of them. As a garrulous person, participating in conversation is important to me, so I will chase it down, whatever tech, technique, and learning curve that takes. Ultimately, if some people can't adjust, I will have to take them off my social register I guess. I will seek out a more patient employee at shops. I will continue my practice of refusing to patronize businesses that won't try to be accessible to me. (Honest trying wins points.) I will live and be myself in living color, and the world had better watch out!

 

[DBowman]

Beky!
I have bulbar onset PLS with problems with walking. Mine started years ago with a slurred word here...and there. Then I had throat spasms occasionally that interfered with swallowing(8 years ago)but that hasn't gotten any worse. But I did notice a change in singing range and I got tired singing a lot or TALKING a lot. I don't have the high range I had either. Sometimes I start coughing because it feels like my voice has "dried out" and I need to drink some water. I also have times when I talk a lot that I start sounding "nasal" and some times THAT gets really bad. All this comes and goes. I DID see a speech pathologist(you go to several sessions.) They check your breathing(lung capacity...you may be surprised like I was). They give you a warm washcloth to put around your throat and give you a vibrator to use on your throat for "massage". He gave me a clip I can put on my nose(in case I get nasal). He told me to say a few words and pause just a little, continue, pause, cont. etc. so I don't tire when I talk a lot.(I found this very useful at times). The slower I talk the better people understand me...I can't talk as fast as I think without messing words up. So I try to really pronunciate more complicated words. Sometimes at rest a "sound" will come out of my throat involuntarily..sometimes several times in a row! My experience with the speech pathologist was "interesting" and informative. You may have volunteer services in your community that will drive people to doctors appts. You might want to check on it!

 

[macdonas]

My husband (with PLS) started having speech problems 3-4 years ago. He is still speaking andt is progressing with slurrs etc. He has about 92% intelligibility according to the speech path test. Stress and fatigue make it much worse.