Hi,
Wondering if anyone else has had the experience of losing their speech after an episode. Its happened to me a few times and it seems to be becoming more frequent. I frightened I'm going to stop being able to speak at all!
Also has anyone seen Neuropsychiatry? I'm on the waiting list and wondering what its like seeing them 
Thank you,
Rose
My daughter has never stopped talking that I am aware of. She gets disoriented, like she forgot where she was. I'm sure that's a scary feeling and I hope this symptom goes away for you. The brain is tricky when its misfires. Try not to let it get you upset. Abi says she has to "trick" her brain to be able to do things that should be normal for anyone else. Think of something completely different or even better physically do something you enjoy and while your mind Is occupied try to speak. I bet it will work.. best wishes
My daughter suffers with the same problem, when she looses her voice, she can only blow a small amount through her lips, as she try's to talk.
A trick we have found very affective for her, is to say repeatedly with feeling, a swear word, "Bollocks" as the only sound she makes is "b". This has worked for her every time over the last 4 years.
Try it, it might work.
Hi when I first came down with this you must believe me I lost my speech just drool and grunts it was horrendous people moving my jaw it took me at least 6mnths to become coherent and still not perfect so far I have lost all my teeth gums removed the works by surgeons please get some one to take notice of this ASAP and try get someone to check your stomach because the blood vessels could be getting enlarged please act for me thanks mat
My speech is affected on a daily basis. I am not sure what an "episode" means to you. For me, an episode is when My brain goes foggy and I have to find a recliner or bed to relax in. I lose the ability to move my arms and legs and I cannot talk. I have found that having someone ask me questions that I cannot answer with yes or no encourages my brain to reset. I have also found that having to respond to a phone call passively brings me out of it. I usually can whisper 1st, then stammer with slow speech, and eventually regain normal speech. So far I have not heard of anyone else who has a babble. My brain will cause me to talk in short syllables that can go on for minutes. It sounds like a foreign language but is meaningless; very much like Pentecostal speaking in tongues. Sometimes when I cannot speak normally all that comes out is babble. My family and I developed the code: one blink is "yes"; two blinks is "No"; 3 blinks is "I love you"; and a wink is "I don't know"!
Brilliant! I just love the blink/wink code. Yes, No and I love you. The essences of a language.
Thank you.
Hi Shoseraw,
I get very 'stuttery and tongue tied to silence' when stressed out, particularly if there's an obviously FND-related issue that has triggered it (a fall, the perceived threat of a fall, the utter frustration at having a loss of hearing, hearing and trying to communicate with an angry or rude person on the telephone or a physical collapse). In such circumstances I find that cannot even call for help. Worrying isn't it?
I carry two electronic beepers and a referee's whistle. The last can be heard about 400 yards away! But if you are frozen to a spot with terror, such as when one's legs stall on the descent of the stairs, the mind/body will not allow you to release your grip on the stair rail (or piece of furnature etc) that is your lifeline, to allow you to use any of them.
I usually end up calling out "M", "M", "M" or "Mu....", Mu....", Mu...." or something similar (my dear wife is Marion, hence the "Mu...." sound) and then I hope that I have done it loud enough and that she, like the US Seventh Cavalry, arrives in the nick of time to save the wagon train.
It is just something else to adapt to.
My speech does return, sometimes (well, usually) within a very few minutes, when the body's 'fight or flight' autonomic system reaction returns to a 'rest and digest' state, or otherwise I breath and retain my composure and calmness.
May I suggest that you look for things that help avoid the speech lockdown. This may be distraction. It may come from a completely different source/direction. Did you know that the late British actor, David Niven, had motor neurone disease? In the early stages, he found that he could not walk directly across a room. However he found that he COULD dance across a floorspace. So he did. This then, was HIS coping strategy.
Please report your observations and successes/failures. All are part of the jigsaw puzzle that is understanding FND.
But never give up! As the cosmetic advert says 'you are worth it.'
Lastly, could fear itself be a key player? Do you have relaxation techniques? (Chanting a Buddhist mantra (ask me!), or the use of mindfulness, deep breathing, or whatever else works for you, could help you to head 'it' off at the pass.)
Hope to hear from you very soon.
Best regards
Robert WT
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