I’ve noticed many people ask me to repeat myself, some people more than once. I know it was hard understanding my dad, and it’s easier for people who live with you to understand what you say.
Every time I go to work or wherever I’m asked, “what did you say?” I don’t mind repeating once, but I get quite irritated to repeat more. Yesterday at work this lady who always asks me to repeat myself like 3 or 4 times…out of my irritation I raised me voice really loud and the tone I’m sure sounded like I was irritated.
Has anyone experienced situations like this and what do you do?
My mom’s got SCA5, and it is almost impossible to understand her at times. Especially if she’s stressed or under any kind of mental pressure. She also refuses to repeat herself and if you ask even once, she’ll snap.
I frequently run into the same dilemma, it is much worse when I am tired or fatigued. I constantly get asked to repeat myself or they just look at me with a blank stare (my queue that they need me to repeat because they are to embarrassed to ask). A way I found to see how others hear me is to call home and leave yourself a voicemail message. I discovered this by accident I called home once, everyone was outside so I left a message. When I got home no one had gotten the message so I listened and wondered what kind of idiot drunk called from the bar, then I realized HEY THAT WAS ME!!! Now I only leave voice messages if it is very important and I absolutely have to, otherwise I call back. I am also on the phone with people during the day at work and I wonder how many of them think I've had a liquid lunch.
I don’t have speech problems yet, but my husband does and has had all his life.
We do giggle at times because on the phone and the computer asked questions to direct him to right department, it never understands and hubby gets upset and starts arguing with the stupid computer. It is just so funny, he trys saying all different ways and huffs and blows steam, very frustrating for him. We do have a laugh after cause he argues with the computer, seems funny at the time.
Any answers no but lightening up the mood does help.
What a blessing it is to have the internet to help folks express themselves. It must have been so much harder when the only option for written expression was a quill and ink.
Dear Iwentdownunder, I slur my speech 24/7. Of course, those (family and friends) that are around me more understand me better. If I'm talking with someone that doesn't know I have ataxia, and I get that "deer in the headlights stare", I simply say (as clearly as possible...,ha!), "I have a neurological disorder that causes me to slur my speech. if you don't understand something I've said, just ask me to repeat myself". People have been very kind and seem relieved when I tell them that. I admit, it's hard to talk sometimes and tiring to repeat myself. Therefore, I've become a very good listener...,ha! ;o)
I have the same problem it is part of the beast. It is usually worse at the end of the day. If I have a bad day I tell em that I have ataxia and I may have to repeat my self. Folks understand and we go on with life.
I have that issue as well - those who know I have Ataxia are understanding about it, while those who don't I try not to talk to too much! I find that I tend to slur things more when I am tired or talking faster. Most times I notice it myself and can repeat myself, but when I get asked I do repeat slower (and sometimes louder!) to get my point across. I do love email - I think that the backspace key is the most used one on my keyboard!
I have a really unfortunate habit of rolling my eyes when something gets on my nerves. I do it automatically. So, when someone asks me to repeat what I say, I roll my eyes. Because I'm annoyed at myself for not being clear, and because the majority of what I say is not worth the effort of repeating. You can probably imagine what a good impression I give people.
My neurologist just recommended speech therapy for me. Have you done speech therapy? I have no idea what to expect. I have noticed some stuttering and difficulty pronouncing certain words.
Funny I usually repeat myself so I get my point across, if they still dont get it figure they (who ever they might be) just don't want to hear it (my speech isn't that bad or is it ?)
I tried speech therapy a while ago - it didn't really help. When it gets worse, I may try it again. For now, I just repeat myself, and like SCA_in_Tx if someone really doesn't understand me I figure that, since they are unwilling to try, they probably aren't worth the time or effort.
This make me remember like 2 years ago (before I knew I had this) my friend would tell me I sound drunk when I’m tired.
In the past people who ask me to repeat myself I used to say never mind.
I went to speech therapy a few times. My problem is more with breathing than pronunciation per se. I tend to run out of breath in the middle of sentences so they're hard to follow, or try to speak quickly before I run out of breath so my sentences are basically one long slur. So I started some breathing exercises which really helped (to help me speak using my diaphragm or whatever (I'm no biologist)). I was also given the brilliant advice to talk more slowly. So it was worth going but I didn't see the point in going more than a couple of times.
I have found that if I slow down and concentrate I tend to do better. I also try not to run out of breath. I have another circumstance to deal with and that is dry mouth. I have to keep water with me so, I have a break every few minutes that gives me time to collect myself as I go on. It is a pain to keep water with me but, I can not talk without it.
I have SCA 6, and have had progressively slurred speech. Finally went to a speech therapist. She gave me some great techniques to use. Slow down, over pronunciation, speak a little louder( it makes me slow down), and forget about your old voice and learn to like your new voice. I always things I sound ridiculous when I over pronunciate, but my husband assures me I sound fine and am much easier to understand!
If I’m on the phone, which is a lot lately since I’m calling places to rent to live, and I get that awkward pause after I speak.
I’m wondering if the rental person is thinking, holy cow, woman, you’re drunk as a skunk; call back when you’re sober OR if he or she is just trying to figure out what I said OR if he or she is thinking of a tactful way to say “What?”
I try - I emphasize try (spot on, Rose) - to explain that my slurred speech is from a neuro-thing and repeat the message slower, louder, and enunciate more. Also, I usually include: “if you need me to repeat or help you understand me, please let me know.”
If I do these same things with a family member or a close friend, I feel rude, but hopefully they don’t take it the wrong way.
I find it easier and more efficient for communication purposes to write - email or whatever - and try to do so when/if possible. If writing isn’t an option, I try to plan speaking-related things at the beginning of the day when my voice is stronger, clearer, and I usually have more energy in the morning.
