Does anyone else have severe difficulties getting words out to the extent that you can barely put a sentence together and be understood by others?
My speech seems to have progressed faster than legs but then that also maybe because I have been deaf over 20 years and not been able to hear my own voice properly anyway even when I could speak quite well (I wasnt born deaf).
I was refused Speech Therapy when I first noticed I was really struggling to get words out in 2005. An ‘expert’ was sent out to me who said I just ‘sounded deaf’ and there was nothing she could do.
I find it so frustrating to be spoken to as if I have learning difficulties and with my physical disabilities been much more obvious now alot of people who didnt know me before I assume I have CP or something and was born like this. I even had a total stranger shout ‘Spaz’ at me in the street, (jumped right out of a shop doorway in front of me).
Even family when they do come dont stay long I feel I only got a short time to tell them whatever it is I want to and cos it makes my breathing go out of sync when I’m trying to speak in along sentence I sound like I’m gonna have an Asthma attack or something (i been asked if I had asthma too… I dont) .
Sometimes people stop to chat cos I have dog with me but then they soon move off and remember something they had to do after asking me questions and realising I cant speak ‘normally’ so therefore must not be ‘normal’. It really affects a persons self-esteem as you feel that no-one is going to want to speak to you, I’m not sure whether its because its me as a person, or they think I’m drunk or learning-disabled.
I try and speak as much as I can as I dont want to lose my speech altogether but its so exhausting trying to put a sentence together. Last month when delivering xmas cards a newer neighbour asked my name and I couldnt even get my name out… even spelling it letter by letter I could see her trying to work out what letters they were. It’s so humiliating, I’ve stopped socialising altogether and only communicate with people I dont know online via computer.
The NHS had agreed to provide me with funding for a communciation aid before xmas but there now seems to be some kind of delay, I dont know whether they have changed their mind or what, I was hoping a communciation aid might help give me some confidence back as I could at least explain clearly that I have a speech problem and do not have learning disabilities.
Does anyone else with Ataxia have speech difficulties to such a degree?
I live near Newcastle upon Tyne, and I’m a member of AtaxiaUK.
Did you know they have an advocacy service and may be able to help
you process your enquiry with the NHS?
I really can’t imagine the frustration you’re going through but it seems
obvious that you’re an ideal candidate for a communication aid.
I’m so glad you can communicate with us xB
Hi my name is Verjinder and i have been diagnosed since MRI in March 2012 and I understand totally what u r saying. My breath runs out before I have finished my sentence. My speech has deteriorated quicker than everything else then my balance. I live in bexleyheath, kent where r u?
This information may be useful to anyone living in the UK.
AtaxiaUK members can apply for a Cornberg Grant, to help purchase Equipment
and Adaptation Aids. Current applications close 31 May, 2014.
See AtaxiaUK main page, how we can help, for links to numerous organisations. xB
Kati has explained to me that my speech problems were caused by breath incoordination. The Speech Therapist and I agree.I recognise many of the above problems.
I live in Central Florida. I have been diagnosed with CA for three years. One tool my speech therapist taught me was to tap my fingers together (like the beginning of the “OK” sign) in rythmn of the syllables being spoken. It doesn’t fix everything but it does help me. Also - slow your speaking down so your breathing matches - speak in shorter sentences if necessary.
Give yourself the gift of patience in yourself and tolerence of those unwilling to demonstrate patience with you.
I was very touched by your comments, Kati. I’ve been on both sides of this speech issue. Currently, my speech is pretty good. Before ataxia, I would have reacted like the people you’ve encountered. Inpatient and unkind. Since ataxia, it’s a whole different story. There have been months/years where I couldn’t put a sentence together. It’s taught me a painful lesson. A lesson for which I’m grateful.
Having people assume that my thinking matched my ability to speak, is humbling. Painfully so.
I do try to smile at strangers and tell them I may have some trouble speaking. That seems to help. I hope you get the communications device soon.
Dear Kati, My speech is very slurred due to my ataxia. If a person I'm talking with gives me a ''deer in the headlights" stare, I automatically take that as a sign that they don't understand what I'm saying. I tell them I have a neurological disease that causes me to slur my speech, Therefore, if they don't understand something I've said, please ask me to repeat myself. I've also told people on the phone this, as years ago a close family member told me (on the phone) that if they didn't know I wasn't a drinker (alcohol), they'd think I was two sheets to the wind (drunk). Also, I can feel it when my speech is especially slurred and are having more trouble speaking. Others are correct in what they say about slowing down, etc. A speech therapist told me to practice counting, saying the alphabet and months of the year, slowly, each day. Therefore, I do, as if you don't use it you lose it....,ha! ;o)
People on the phone can hardly understand me. I didn't realize it was so bad till I heard myself. Just trying to talk to someone I use to have to repeat everything. I learned to slow down and try and say the words plainer. A lot of people still can't understand me, but it works better.