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ghii

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Joined
Mar 23, 2010
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88
Reason
CALS
Diagnosis
02/2010
Country
US
State
Texas
City
CC
My husband complained of pain in his chest and under it. I managed to talk him into going to ER after 2 days of intermittent pain. All tests came out normal, they let him go home. This was on Wednesday. Two days later I came down with a bad bout of stomach flu and this time it was I - getting to ER before I get too dehydrated, I was not even able to retain water in my stomach. I am fine now. I got back and noticed my husband's speech already slurr before became almost unintelligible. He told me he does not feel well and is going down, he made a sign with his thumb, going down. I asked him what happened to his speech. He told me his lips are numb. Could Als affect speech to such an extent like overnight? I do not know what happened when I was in ER, I just know something did.

ghii
 
Very sorry about your troubles ghii.

Surely they checked him out for stroke! My husband has had bulbar symptoms for 5 years and is just now to the point that we cannot understand a whole lot of what he says.

Have you called your ALS Clinic? They should have someone on call that you could talk to!
 
It may also have to do with the stress your husband felt when you got sick and had to go to the ER. It took Les longer to recover from MY apendectomy than it did me. HUGS Lori
 
Oh Gertrude, I am so sorry. Things seemed to be at a plateau for you. I can't answer too much about the speech, but my husband's has deteriorated very rapidly. He'll go for days where I barely understand him and then, suddenly, it seems to get "better" (that being a very relative term!). I hope the same happens for you. I'm thinking about you.
 
I have bulbar onset. Mine was very gradual, although I noticed a marked difference when I was stressed or upset.

Judy
 
i also have bulbar onset i was diagnosed in aug.09 today my speech is bsd some days my wife or friends cant understand me i always sound like im drunk i was taking baclofen for it ,it seemed to help but now it isnt working the way it use to my nuro upped the dose this week still dont see any improvement .live for today as tomorrow may never come .god blss
 
I love all this ymmie food that siciley makes..I keep making me a little plate trying to taste things...I just need to give it up...I am very sad because I am not even enjoying my diet coke anymore..I even choke on it....speech is soooooo bad.. No one understands a word I say....gone the days of food drink and conversation....at least I am here with family and I truly love that...I know I should be and I am grateful for that..hugs, Linda
 
Mine started with slurred speech in July 2007 and now I cant even say yes or no that anyone can understand. For me it has been a steady and gradual decline with no getting better at all, only worse. I wonder about numb lips, it sounds like something other than just ALS decline to me.

Linda, I know that it doesn't help but I am right there with you in mourning food, drink and conversation. This really sucks big time, we had people over today for bird watching and I hid in my room avoiding having to deal with it all. I just didn't have the energy today.
 
Barry, I understand what you are saying..sometimes it is just too hard.... Just easier to go to my room. I have loved to at least go out and have soup..that is coming to a dead end soon..I went with my kids to get a custard ice cream,it was hard to eat..too creamy I had a real hard time. Well one good thing is I have lost a lot of weight and I feel better.. I am not taking more than one can a day of formula... I eat little bits ....anyway, loving my family and I'm glad I have them and my friends... Linda
 
Linda have you tried the Italian Ice yet? And do not lose too much weight. HUGS Lori
 
Between Thursday when at clinic I was told it seemed possible my speech hoarseness may be ALS related and this afternoon, late... after a much too lengthy visit, when I went from hoarse to nasal... then choked on my first bite of dinner, I am absorbing what seems to be the fact that it's now in my mouth.

Barry, it is a fight to be socially involved, even while able to speak. The fatigue is such that when the opportunity finally comes to get off the sore tailbone and recline... only to have the phone ring or a visitor, I have to really suck it up and ignore myself. And it seems now the time has come to be less generous with time and energy, which is a loss that I hadn't anticipated.

When talking and eating are totally unrealistic, hiding seems like the only thing other than sitting and... what? I suppose it's always changing, just as all the other aspects change. Thank you for your post. Please keep writing your poetry.
 
Ann, this damn disease just gets us one way or the other and eventually gets us both ways. On my first ALS walk in 2008 I joked with a guy that I could walk but not talk and he could talk but not walk so we made a great pair. I pushed him in his chair and he did the talking for both of us. Now he is gone and my legs are going so this just no fun anymore.

I am sorry that you are having voice and swallowing problems and I wish I had some good advice to give you other than to be careful eating. While I was still choking down my wife's great cooking (that doesn't sound right somehow :lol:) I was able to run to the bathroom and cough stuff up. Now that I am NPO I don't have that problem but I can't run anymore either.

I have just started sitting and smiling, if I am too tired to type to converse and I don't want to hide then I sit in my recliner chair and put a smile on my face and everyone feels good.

Sorry for being a downer, it has been raining all day and I haven't been outside since Thursday. At least we don't have to worry about forest fires!
 
Barry, You are never "a downer". I hope you needed rain in your corner of Alberta. We need it here, and as it's to be in the nineties today (see I always mess up: this is not the weather thread! ;) I'd love to see it rain hard.

The post above was my first about the bulbar issue (I think. Never trust my memory), and since typing is also very tiring, my "cheerful demeanor" is being maxed. Blessings to all of you today.

Barry, wishing sunshine for you!
Ann
 
You know, slurring speech was the first thing I noticed in my mom starting around Feb '09. I thought she had been drinking and blew it off. Then she told me she wasn't drinking anymore but she still slurred. I just let it go. Then she was diagnosed is Sept '09. They say, or at least it's what I've assumed from conversations with the doctors, that she doesn't have the bulbar. I guess what I'm trying to figure out, is it possible to have both at the start?
 
My husband's slurred speech started around April 10. It was how he came to be diagnosed. Reality finally sets in for him as he is less able to eat without coughing very hard. I explained to him what he has. He told me he is not living, he is dying. I will call his doctor tomorrow. Thanks for your help and support.

ghii
 
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