speech problems

[snowathlete]

Nice to get on here and be able to say something!

My most recent symptom, which is new over the last three months or so, and getting worse, is an inibility to speak.
I have it right now, but as you can see i can type what i am thinking. I am able to think what i want to say, but cant do physically do it.
Its like there are no muscles in my mouth, voicebox, throat, or rather that i am unable to signal them to do their thing and cause speech.
I have to force those signals through, which with great effort i can do to some degree, but because its fatiguing even when i do it, i fall short and words come out slurred, words get merged together because its easier to say one joined-up word, than two single words.

Its so frustrating and upsetting. Not only for me but my wife who is trying to understand what i am trying to say.

Unfortunately, its more evidence of my worsening condition as my health continues to decline.
I found this page about it which was informative, for anyone interested:
http://www.actionforme.org.uk/get-i...ected-ia-articles/dear-doctor/speech-problems

 

[peggy-sue]

Seems like you've got it rather badly, but this is fairly common.
I get it when I'm really bad, though probably not to the extent you're suffering. It feels like my tongue has turned into a huge wodge of cotton wool, all I can do is stutter semi-words.
There was a "silly" symptom list somewhere, which included examples, such as somebody saying;
"Blippers!", because it's just too hard to articulate; "Can I have my blue slippers please?",
or somebody saying; "dog. pink. room. stop." instead of; "Would somebody please stop the dog going into the pink bedroom?"
Why do you think you are continuing to deteriorate? Have you been overdoing things? Do you try to pace yourself?

 

[Sushi]

Nice to get on here and be able to say something!

My most recent symptom, which is new over the last three months or so, and getting worse, is an inibility to speak.
I have it right now, but as you can see i can type what i am thinking. I am able to think what i want to say, but cant do physically do it.
Its like there are no muscles in my mouth, voicebox, throat, or rather that i am unable to signal them to do their thing and cause speech.
I have to force those signals through, which with great effort i can do to some degree, but because its fatiguing even when i do it, i fall short and words come out slurred, words get merged together because its easier to say one joined-up word, than two single words.

Its so frustrating and upsetting. Not only for me but my wife who is trying to understand what i am trying to say.

Unfortunately, its more evidence of my worsening condition as my health continues to decline.
I found this page about it which was informative, for anyone interested:
http://www.actionforme.org.uk/get-i...ected-ia-articles/dear-doctor/speech-problems

Gee, SnowAthlete,

I am so sorry! I can't remember, do you have a competent doctor who could investigate what might be going on?

Best wishes,
Sushi

 

[snowathlete]

"Blippers" - yeah that is exactly me! Strangely nice not to be the only one.

I try to pace but some things need to be done, and invariably that means I do overdo it at times. So yeah that is a factor.

I don't really have a GP who is helpful no. Sympathetic in a human kind of way but basically a waste of time.

...still waiting on that miracle cure...man I could use some good news.

 

[hurtingallthetimet]

hello snow hope your doing better...not sure if this is what you mean but i forget words...i will want to say something such as cat..and picture cat in my head but cant think of the word for it...it happens all the time...i guess i just forget the words...short term memory getting worse also...

there was something the other day i wanted to say to kids i cant even reember if it was an apple or something i was talking about all i could get out was "red thing" i felt so stupid....ive tried to just say "oh i forgot what i was talking about" when i forget to say a word but really just dont recall what it is called though i can see it in my mind..

then theres the times i will be talking and not see anything in my mind and really truly forget what i am talking about...
i hate these illness...

 

[alex3619]

I had a similar symptom symptom once. It was after three days without sleep, and my brain was shutting down. In the course of a conversation I went from articulate, to being only able to repeat what was said to me, to being able to say nothing. I could still make rude noises however. I hope you can sort this out. Best wishes, Alex

 

[peggy-sue]

I get into trouble from my OH for going ahead and doing things he could do for me - when it really IS difficult for me to do them - but it's even harder to try to articulate the request to him to do it. Even if it is just to get the milk out of the 'fridge.
You're right, though Alex - rude (and strange) noises are still possible.

 

[taniaaust1]

Its interesting how this illness can cause so many different kinds of speech issues. Mine with this illness have beem more so speech issues of another kind which at times prevented me from being able to speak..

eg language coming out of my mouth like a completely jumbled mess as words are all coming out in the wrong order (I had clear thoughts of what i wanted to say, my brain "seemed" okay but the words just didnt come out like that). or completely different unrelated words coming out of my mouth then what im thinking to say. (this last one still often happens to me)

Or at times it was my brain leaving me unable to format sentences to speak. When I was bedbound long term.. I went throu quite a while where I was only able to communicate using only one or two words at the most (if that). I was sometimes having to like mime with my body what I wanted to say.

The third kind of speech issues Ive had is where language starts coming out as like some kind of mumble or slur or other weird noises as I cant make words at all. At such times I can be hardly heard either.. its a hard effort to make any kind of noise (when that happens I are collapsed on a floor.. this last speech issue only happens if Im in a complete exhaustion state.. hence my speech is also completely gone).

I try to pace but some things need to be done, and invariably that means I do overdo it at times. So yeah that is a factor.

Maybe there are ways that what needs to be done could be done in a less exertional kind of way? I suggest to post a forum thread asking for ideas on how to do some of the things you do in an easier way (of cause you'd have to say what they were) . There may be something you havent thought about.
Otherwise if excertion is causing your condition to worsen, it will probably just be a case of being able to do less and less anyway. Sometimes we need to change our lives in ways which we wouldnt have considered before.

 

[justy]

Hi Snow, i am concerned about you, this sounds quite severe. What is your general level of disability? I have had many problems with speech in the past - jumbled words, thinking the word but not being able to say it out loud etc saying the word but actually saying something that i can see that isnt related to what i wanted to say. But your problem sounds more like the inability to speak through exhaustion that i only had when i was severely ill. The effort to speak would be too much and it would come out as a whisper, or just not at all. Yours sounds like a severe version of this, which i presumed only those very severely ill and bedbound would get. Maybe im worng about that though. I hardly ever have to not talk now, but in the past would have to tell everyone that i wasnt going to talk for a while because it was too tiring.

Have you been to the GP? i would have thought it would be wise to be checked out - not to be alarmist but perhaps to see a neuro or make sure its not stroke related etc.

So sorry you are going through this, Take care, Justy x

 

[snowathlete]

Generally I would say I am average. Fluctuate quite abit within that average I would say.
Maybe I am worse than I think though. I am in support group of ESA which if you are in the UK you will realise means I must be practically dead already to have got that.
I am definitely going downhill and have been all year.

I probably will mention if to the GP but not sure I can face it right away. I also get the wrong, sometimes random words come out in place of the correct words. Annoying.

Regarding stuff I have to do, it's difficult. Changing a nappy on my daughter after my wife is tired having done the last five...what alternative?
Putting dinner on, even though it's only simple stuff. My wife is looking after daughter, her food, clothing, well being, everything else and she can't do that as well. I do as little as I can, but what I do has to be done by me really.

I feel like I've had this illness forever. Can't even remember what normal is anymore.
Well, thanks for the replies everyone.

 

[CBS]

SnowAthlete,

One thought. Is it possible that the speech issues you are experiencing originate with a problem controlling the fine motor movements of the diaphragm? You note that you have no problems expressing yourself in writing. I had severe speech issues that sound much like what you describe. They turned out to be caused by autonomic neuropathy and have almost completely resolved over the last 18 months while being treated with Valcyte. It would get worse for me when I was particularly fatigued. I also found that I was able to speak much more fluidly when I whispered. Whispering (or even talking in a softer voice) asks a lot less of the diaphragm. Hopefully, this may shed some light on the mechanisms causing your speech issues.

Best of luck,

Shane

 

[snowathlete]

Yeah could be Shane. I don't know much about it but my dad commented last week while on a visit that my chest hardly moves when I breath.
Is valcyte a direct treatment for that in some way?

 

[CBS]

Yeah could be Shane. I don't know much about it but my dad commented last week while on a visit that my chest hardly moves when I breath.
Is valcyte a direct treatment for that in some way?

FWIW, MY speech (and several other) issues appear to have been a problem with autonomic neuropathy (primarily the vagus nerve which controls digestion/peristalsis, the diaphragm, and HR) and CNS dysfunction. I was prescribed Valcyte to treat a chronic HHV-6 infection. It has taken 18 months but I have gone from having been housebound with severe autonomic issues to having few if any autonomic symptoms when resting and only mild symptoms with mild activity (a mile walk with my dog) that a year ago I could only dream of. I've been dealing with this for over 18 years and Valcyte (along with a few other key treatments) seems to have reversed what I feared was to be a never ending downward spiral. In April 2011, my cardiologist said that I would soon need a pacemaker if I didn't what he felt were infectious issue under control. Now I don't even need to see him for anything other than a yearly check-in to make sure there's nothing needing further attention.

 

[taniaaust1]

Regarding stuff I have to do, it's difficult. Changing a nappy on my daughter after my wife is tired having done the last five...what alternative?
Putting dinner on, even though it's only simple stuff. My wife is looking after daughter, her food, clothing, well being, everything else and she can't do that as well. I do as little as I can, but what I do has to be done by me really.

I feel like I've had this illness forever. Can't even remember what normal is anymore.
Well, thanks for the replies everyone.

Its sad but no matter how hard it is.. sometimes we do just need to put ourselves first if we dont want to get worst. Yes your wife may be tired etc.. but its your health which is suffering and getting worst.

By putting yourself first and looking after yourself.. you may be helping yourself be weller and more able to help wife in future times. Its hard to be considering the future and how we will be in future when we are so stuck in getting throu that now moment. The consequences of not looking after yourself when you need to be, may be your own wife not having just to look after your child in the future but also having to be looking after you as well (if you end up bedbound long term). The illness may completely take all your current choices away if it worsens.

You need at least a chance to try to stabilise things again.

ps I was single parent of two (one who is disabled) when I got sick.. I pushed myself to take care of the kids and ended up bedbound long term (for 9mths I was stuck in bed unable to care for myself, I couldnt even walk to the loo and was unable sometimes to even be able to feed myself with a fork) with my 10 year old having to be my carer and do everything else too.. This is a very serious illness we have and not putting yourself first in looking after your own health may end up having major repercussions.

Your inability to speak is probably a sign of severe exhaustion... yes your wife is tired but it sounds like you are putting down just how ill you yourself are. What you are doing right now is a HUGE gamble with your health which could end up quite dramatically affecting your family

 

[peggy-sue]

I have to agree with tanniaaust1 - you are clearly at the end of your tether, health-wise - the more you try to do while in this state the worse you will get - and recovery will get further and further away.
I was very, very worried about you when I read the bit quoted - but I'm not great right now and couldn't get words together to reply.

Believe me, I know how it feels, watching somebody do the equivalent of that 6th nappy and wanting to do my bit, but I know the end cost is far, far too high.

If you don't lie back, rest and recover, you are potentially destroying your future.

 

[Shell]

Hi SnowAthlete, I too have similar problems. All very entertaining when I say the wrong thing, garble word order, or just slur my words like an old drunk, but it gets on my wick.
For weeks everything I saw was a "dishwasher" and the more I tried to correct myself the worse - and more exhausting- it got.
I keep loosing my voice completely or having it fade in and out weirdly.
I know the words - like you, I can type them in proper word order - but trying to speak them can be such unbelievable hard work.

CBS makes a good point that I hadn't thought of. I have severe asthma and breathlessness. (I am refusing to go back to the hospt but that's another story). I guess it's all part of the joys of ME.

I know the "I have to do this" feeling. My three older kids are great and try to help whenever they are around - but I have to try and get stuff done. I really don't know how to advise on that.
All I can say is I hope it improves. I do get patches when things are better. I hope you can have those at least.

Oh PS just wanted to add I've signed the petition and facebooked it.