Speech and Communication Issues

Status
Not open for further replies.

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
For those who are Caregivers Be very patient when we are trying to communicate and the words dont come out right away ,or they come out messed up . As ive said before when i Enunciate in a Loud Manner ,the words get out better (more articulate ) Instead of December sounding like Next Summer or February Coming out like Febray . I would encourage them to Speak Louder if it will help (this helps me unless im having a really bad day (cloudy and overcast usually ) My wife sometimes just looks at me in a bewildered manner instead of saying try it again she'll make a stab at it and if im having a bad day i'll get mad and make it louder ,sometimes too loud and she'll say do have to holler . so this louder speech is confusing as we sometimes seem mad and we're not For those who have speech issues who can relate to this . Geo
 
hello geo

my son always tells me when i say my words wrong.
sometimes to me my speech sounds ok or i think i say a word ok but he tells me i have'nt. this annoys me so much.
i would rather not know if a word comes out wrong than constantly told about it.
sometimes i can just catch it myself and i think that did not sound right and i try to cover it up.
no one likes to be constantly reminded of there weaknesses.
i do simpathise geo.
take care.
caroline:-D
 
Sometimes i repeat myself because im waiting for an affirmative answer either yes or no and when you get a blank stare with no comment it upsets you which means you didnt communicate in an affective manner . This week i felt i slipped backwards more progression then today it seemed like i came back .Theres no figuring . I see the day will eventually come when i'll need the machine . As it is i try try to keep my words to a minimum when making a sentence . Geo
 
Geo,

I'm right there with you-and it is VERY hard for me not to talk in long sentences, as well as talk non-stop!
I tried to explain something to my hubby today, and the crying set in, and he couldn't understand me at all. Then he said my 7 yr old was looking scared, so I tried to explain to him that I was ok, when the uncontrollable laughing set in!
The good thing is I can still use pen and paper. And I can still laugh when I need to also-like probably right now!
Have a great week!
Keep the faith,
brenda
 
Cant watch Mooshy Movies or sad scenes ,one came on when we were eating about a humane society thing about adopting animals that were abused .I said please shut that off . My emotions run higher than they use to ,never use to bother me . Love funny ones . Wife watches those Family Channel ones that have lots of Moosh ,i sit outside on the lanai and soak in the Nice Outside . No Moosh Please LOL . Geo
 
Thanks everyone. As a caregiver this is all good for me to know.

By the way, do words come out wrong or sometimes slurred when tired?
 
Hey sral,

For me, the words are more slurred when I'm tired, kind of like a thick tongue effect. The doctors I work for tell me I'm more slurred today than I have been over the last 2 months! I just LOVED hearing that.
When the emotional upheaval starts, I can't speak at all. So I am trying to teach my family to keep me away from stress/emotional challenges etc...
Keep the faith,
brenda
 
Thanks Brenda.

Staying clear of stress (as impossible as this may be) is good for more than just your speech. I truly believe that stress brings on progression as well.

Was your first symptom speech? When did it start?
 
sral,

I suppose my symptoms started around the first of this year. I was on the phone with my sister and she asked me if I had been drinking. Not that I don't like to have a margarita once in a while, but I had not been drinking anything that day!

Anyway, she told me I talked just like our oldest brother. He was diagnosed with ALS in 2003 at the age of 56 and died 14 months later- bulbar onset.

As Feb. and Mar. got here, the speech got worse, I called my old neuro, he ordered an ultrasound to rule out stroke, then an MRI of my brain to rule out my having a brain, oops, that is my husband's opinion!

When those tests came back negative, he told me to go to the ER if my speech got worse, and take Klonopin for stress! Didn't work for me, I knew something was going on.
So I called another doctor friend of mine, he got me in to see a neuro at IU Medical Center in Indianapolis, IN. I went there 6/3/08, and in 2 hrs of talking to 3 neuros at once, they concluded that I had bulbar onset ALS.

I am still currently working 32 hrs a week as a nurse in a rheum practice, I have 3 very active boys, my husband is retiring TOMORROW after 26 yrs as a fireman, and we live on a farm. Oh and I also have 2 more classes to take this fall to complete my bachelors degree in nursing. So needless to say, my life is very busy and stressful, but I prefer it that way.

I have noticed I am more fatiqued, but I don't know if that's ALS or the baseball games for my 7 yr old!

But I know I won't be able to work so much very longer- I just hate to give it up! I thoroughly enjoy what I do, but I know I should spend more time with my family. I just have to balance the national debt before I can apply for disability and spend 5 months waiting for it to start!

Sorry to ramble, but that happens to me quite often!
Thanx for listening,
Keep the faith,
brenda
 
OK Brenda Did the EMG confirm That Bulbar ALS for you ? Being that those Docs. Diagnosed you that way . Because i was Diagnosed Bulbar ALS before any tests were performed , then the Butt Head said after the tests said no ALS , " I know you have it ,its just a matter of time 2-3 years and you'll die of problably choking to death ,at that we said OH Yah and left .I wrote the Hospital Administration and told them of this ,then called and talk to her (Iowa Clinic ) she said what do you want us to do ? At that i said do you always treat patients this way she said no . I said at that i do not think a patient should have to go through that ,when test say no , its no .Is he God or Something ? They never sent me a bill . Geo
 
That's ghastly, Geo! I've met a couple of insensitive neuros, but that tops them all. My first EMG, which was last fall in a doctor's office, showed no problems, and the guy said, "but it could still be ALS, and it just isn't showing up in the tests yet." He was obviously rooting for ALS. Then a few months later, another neuro diagnosed me with MG and said, "It can't be ALS, because with bulbar onset, you'd be six feet under by now."

Which was reassuring until the NEXT neuro said, "It's definitely ALS." So I figure this must be what six-feet-under looks like.

BethU
 
beth~

you are tooooooo funny!
 
Speech Devices

So just curious about peeps opinions with the ACD (aug communication devices)?
Early stages of Bulbar ALS- losing voice, but close friends and family can still understand. When out running errands is pen and paper the easiest method or the typing tablets?
 
Brenda,

I'm so sorry about the loss of your brother. That's awful. I'm sorry you are going through all this too. The positive side is that after more than 6 months of symptom onset, you can still speak (albeit slurred). My understanding of bulbar onset ALS is that the speech goes rather quickly and so perhaps this is a sign of slow progression for you. You can also go to ball games and work after more than 6 months of bulbar onset. This is really good (in light of the situation). Wishing you honestly all the best!



Beth,
How did the 3rd neuro diagnosis ALS? Did he do another EMG that showed lower motor neuron damage? How long have you had your speech symptoms that would make the 2nd neuro say it cannot be ALS because you've had it for too long?
 
Gosh I hope I can remember who all to answer!

Geo- no, the EMG did not diagnosed the ALS. My EMG was last May or June- and that neuro said I had some mild carpal tunnel or even tarsal tunnel- even though he told me he had never seen someone with feet and hands both. Now I wonder, was it perhaps the onset back then? I don't know, but I haven't had another EMG since, and I also have a different neuro now.

sral- thank you for the kind comments. I keep telling people I meet every day that I'm sure I have the ALS with the 30 yr warranty! It brings a laugh from people, when I'm sure they really don't know what to say. My brother did have a feeding tube and was able to work almost a year after his diagnosed. He was fine at lunch one day, and then his wife found him after work. I think more than likely, he had a heart attack or a stroke. Our dad had a fatal heart attack at 62, and his dad at 42. My brother was 57 when he died, so it makes me wonder.

And yes, I am still working, because someone has to feed my 3 boys I tell you! I do enjoy working, but I know before long I will take a much needed break and learn how to cook! haha I know how to cook, but the baseball fields are doing a fine job for now.

This forum has been great for me, I can still type fast and I can rest my voice when I'm on here. You all are a great bunch of cousins!

Keep the faith,
brenda
 
Status
Not open for further replies.
Back
Top