Speech symptoms

[flwilson]

My mother was just recently diagnosed with FND. She has a number of speech issues that have worsened over the past two years. Her symptoms include: inability to pronounce multi-syllable words, word retrieval, word order, and omission of words when speaking. Has anyone else had these symptoms? She just started speech therapy. Any other treatments that have helped you? Thanks!!!

[Bubblelicious23]

Hi. I have had the exact same problem for a year and a half now. I tried speech therapy but it did not work for me. I finally found someone who actually helps people who has this disorder. I have an appointment with them on Wednesday morning. I will let you know how it goes and if the treatments really help. Tell her to hang in there, I know it's hard, trust me I know. But have faith and it will get better.

[Tewa in reply to Bubblelicious23]

Where is your dr located? I can't find a dr here who accepts/understands this illness. My neuro told me when he gave me the diagnosis that "it is real, not psychosomatic. He is out on indefinite medical leave and the rest of the drs are dismissing this/me.

[Tewa in reply to Tewa]

Forgot to mention gravelly, hoarse voice.

[cgarff]

flwilson, I am so sorry she is dealing with speech problems. I myself have issues with this, and it has not been fun. My problems began 8.7 years ago when we believe that FND started for me. I lost my voice with a cold, yet the cold came and went, and my voice continued to have problems. My voice would be hoarse on and off for days, weeks or months at a time, but then would come back for a few hours, days or weeks at a time. Within this time I have seen many different speech therapists, one of which helped me to get my voice back, it was glorious. I actually had 6 months of my normal voice, but then lost it, then got it back, and lost it again. I had to keep working on the exercises the therapists had me do to try and get back and keep my voice. Eventually they diagnosed me with Muscle Tension Dysphonia. My hard part is, about 2 years into dealing with my voice, the movement disorder end hit, and started causing problems with doing the exercises they wanted me to do. The muscles in my neck would spasm, making it so difficult to do the simplest of things like Hum, or pronounce the words I was supposed to say etc.. The voice issues have eventually have changed throughout the years, I still deal with the hoarse voice, but now I actually like those days because I can actually get out more than a word or two at a time, I am not searching for words or trying to think of another word to say that might be easier to pronounce. My voice changes all the time, start and stop, hoarse, word search, slurred speech, inarticulate or unable to get words out at all. All of which are so aggravating. It is so difficult to try and say something the first time, only to have people ask you to repeat it over and over again because they didn't catch it, which just makes it more stressful and worse. I find writing things down is the only way to go sometimes, but that can be a pain to.

Advise... That is a hard one. It all depends on what else is happening when she is trying to talk. Is she having muscle spasms in her neck or face as well when she is trying to speak? Or is it just vocal issues? If there are muscle spasms, I hate to say I am at a total loss, so are the specialists here in my state. I have completely stumped them now.

If it is just vocal issues I have a few things that she can try to see if they can help. Let me know, I would be happy to share

[flwilson in reply to cgarff]

only vocal issues, no muscle spasms. she has difficulty completing a sentence and often leaves out words or cannot remember the correct words. any advice would be greatly appreciated. she has started speech therapy twice a week.

[cgarff in reply to flwilson]

I am glad she is in speech therapy, hopefully they will be able to help her to figure this out. Was she referred from a GP? Have they done an MRI or any testing on her to make sure everything in the brain looks good? In re-reading your description it is very puzzling what could be happening. I just did a quick search of the issues she is having, and it brought up Aphasia. Does she seem to comprehend what people are saying, but just can't say things back correctly? I am just taking a stab in the dark here, but worth a try. strokeassociation.org/STROK...

The things I had to work on were trying to regain the muscle movement to produce a voice. The false vocal chords on the outside of the vocal chords are too tight causing the vocal chords not to vibrate back and forth and hitting each other causing the right sound. This causes more of a breathy or hoarse sound in the voice. I had to learn exercises to learn to relax those muscles. But I just can't help wonder if there is something else in the brain that may be causing this for her. Like some sort of a stroke, or trauma to the head.

[flwilson in reply to cgarff]

hi! she has had two MRIs within the past two years. both were negative for any strokes, injury, etc. I agree that the symptoms are similar to aphasia but two neurologists and her speech pathologist have told her there is no medical cause (i.e. no degeneration of the brain tissue).

[cgarff in reply to cgarff]

Darn it, not that I want her to have that issue, but answers mean a whole lot. I also hope she can find a doc willing to give her the time she needs, and can help figue it out

I know how hard and lonely it can be without a voice. Be patient with her, because,it is so frustrating on the other end.

[Tewa in reply to cgarff]

cgarff I have the same problems with my voice. Changes in tone, gravelly, hoarse, speaking etc. Not getting much of any help here either.

[Tewa]

I too have speech problems; Pronunciation, work finding retrieval, order. Also stuttering . I never stuttered in my life before I started having jerking, uncontrollable movements. No explanation from the drs....seems they are ignoring this or attributing to ??? I have swallowing/choking issues so can't do speech therapy due to PEM...post exertional malaise with the ME diagnoses.

Hope your mother can get a good dr and some help. The main thing is a good dr who understands and does not dismiss this illness.

[Ratchet1964]

Hi flwilson,

Sorry to hear about your Mum, personally I haven't had any problems with my speech, this is the first site I have joined, and not heard if anyone has speech problems, I hope others can be more help to you. Paul.

[mariethewitch]

i too have severe speech problems amongst my many symptons of fnd , my gp and neurologist are not very helpful they just keep telling me it will get better and i know its getting worse in total i have had this condition for 11 years now and never been offered any support or therapy and now i am housebound as i cant walk far and my speech is that bad that even the nuisance callers on the phone hang up on me, so to go the gp is impossible as i cant phone them or get to them, it is so isolating and lonely not being able to communicate and most days i sit in silence as noise drives me nuts as well, i hope one day that this condition is taken seriously, as i cry myself to sleep every night and pray to the angels that tomorrow will be a better day but i guess they are not listening as well or they cant understand me .

[cgarff in reply to mariethewitch]

Hi I hope you are still on here. I was just going back through responses on this post, and wanted to check in on you, and see how you are doing. It broke my heart to hear that you were not getting any help at all a year ago. Has anything changed? Has your voice or movements improved? I understand how isolating it can be, however after 9 years now this month, I am seeing a change for the better this year. I have now I believe to the beat if my knowledge been seizure free since the end of August, I am walking better, I am having much less myoclonic jerks and dystonia, (not gone, but greatly diminished). My voice is still having issues, but I am going back to a new speech therapist in the new year. I pray he can help with that. I can truly say I am grateful for the uphill climb I am making to getting better. It has been hard, but I am getting there, slowly, but surely. I pray that you have had some improvements in the last year, if not this year, 2019.

Hugs and best wishes

Cgarff