Speech, yet again

[dkcarl62]

Please indulge me on yet another post about speech.

I have limb onset and my speech has been slowly declining for about a year. Started out that I spoke slowly but still clearly. Then I got to where I didn’t feel I could talk on the phone, as I was too hard to understand. Now it seems that within weeks, I’ve declined to where my husband has a hard time understanding me. The speed of decline this disease delivers never fails to amaze me.

I can swallow just fine, so I don’t think my tongue is the problem. It seems to be more the soft pallet and something nasal going on. I’ve seen two speech pathologists in the last six months and they can’t seem to tell me whats going on. I’ve done searches (including this forum) to try to understand what part of the whole process is failing for me, but haven’t had any luck. All they do is advise was to move me toward speech assist technology.

One pathologist suggested my intercostal muscles were weak. I did feel breathless when I talked. So I bought a resistive breathing trainer (The Breather – Amazon) and have been using that for the past few months. I felt it really helped to have more breath. In order to use it though, I had to plug my nose, otherwise I couldn’t breathe through my mouth.

So now I seem to have had a rapid decline that is soft pallet related. Did I do myself harm with that trainer? Should I see an ENT? Maybe something can be done to help my speech?

Comments on the forum have been made that the cruelest part of this disease is to lose the ability to talk. That is so true. Besides the social isolation, I can’t communicate with doctors, and that is a critical ability for me.

As always, thanks for your support, your knowledge, and just being there to turn to.

Deb

 

[lgelb]

Deb,
By all means see an ENT to rule out something treatable.
In re communicating, I'm not remembering what your limb abilities are, but since you are obviously typing in some way, there is always a way to communicate via a TTS app, and you can customize the keyboard with phrases appropriate to medical visits.

Best,
Laurie

 

[twitchykitty]

Hi deb

You sound just like me. Limb onset, no real swallowing issues , breathless when talking ( I actually get dizzy ) but my speech is terrible 50% of people can't understand me and the other 50 percent struggle.

My speech can be nasal at times

I've noticed one side of my tongue is weak and the other side is only a little weak. The speech therapist had me push my tongue against the inside of my cheek and one side I can, but my tongue can't even reach the inside of my cheek the other side.

Re the doctors. I type everything I want to say before the clinic and my CALS reads it to them. It saves a lot of time and struggling

It's worth trying that tongue exercise before seeing a ent specialist

 

[affected]

Even though Chris did start with slurring it was also a very nasal kind of speech and before he realised that his tongue was a problem he would say he felt like his soft palate had dropped and would just block his throat off.

After diagnosis, when he had his first swallow study it was amazing to see that indeed his soft palate was just hanging right down the back of his throat and the speechie commented on it.

It was like all his sinuses kind of went floppy. I could copy his voice by holding my fingers against parts of my sinuses.

Get it checked, but of course if it's ALS, I'm afraid using text to speech is going to be your answer

 

[bigmark1954]

Deb.........I have not been able to speak legibly for about two years now. It really sucks and has been a huge part of ending my social life. I think some people don't realize the detriment we go thru with loss of speech.

Loosing the ability to have simple communication, order food at a drive thru, talk on the phone, say what movie you want to buy tickets for, go to the store and ask for something or where something is, ETC,ETC,ETC!!!

My social circuit is very small now days and I rely on a note pad, a cell phone size keyboard and speaker (text to speak). I also use a business card size greeting card in my wallet with my name, phone#, date of birth. I use this at doctor appointments and the pharmacy.

The biggest draw back for a non speaking person is isolation and frustration, which in turn manifests sadness and depression. I can't see ever getting comfortable with speech loss.

The general public is generally impatient and rude toward people with such handicaps, and they act afraid or put out by it. I guess it is good that I can still extend my middle fingers.

 

[Atsugi]

"it is good that I can still extend my middle fingers."
Mark, you always crack me up. Thanks.

 

[GregK]

Yo! BM!! Hiya bro!

 

[affected]

This was not a joke, I remember Chris saying to me - I don't even sound like myself when I say F^*k anymore! That really hit him hard. Sadly he lost use of his hands as fast as his speech and quite early so had no way to use his middle finger either.

He did pull some pretty evil eye expressions though ...

I agree that people would look at me and talk to me instead of Chris, while talking or asking about him.

He hated most that he felt people thought he was a moron because of his speech. Truly the speech issues are the most isolating factor in this monster

 

[dkcarl62]

I am taking a break from researching ENT’s to respond to your comments. Its really tough to find an ENT with an interest/background in MND, btw.

Kitty, great suggestion with writing out the doc conversation prior. I try to pick docs that have portals so I can have follow up convos as necessary after the appointment.

I do have an upcoming SLP to discuss text to speech. Just can’t comprehend how that will work on a practical basis – how to hold a computer device while on a power wheelchair or scooter and type with any kind of efficiency? I guess I’ll find out.

BigMark, you get where I’m coming from. I’ve gone from a large social circle to mainly just family now, because its not fun even trying to speak when you know people can’t understand. I avoid one-on-one socializing. My middle finger only extends to about the knuckle, so even that method of communication is a failure.

Tillie, I can’t manage F^*k either. I cant get out F^*, but the K gets lost. The impact is totally lost.

I’ll keep you posted if ENT is able to offer any kind of help. In the mean time, thanks for all your responses.

Deb

 

[affected]

I would think seeing the speech pathologist would be the best person to be checking you out rather than an ENT.

 

[Duker52]

I also have bulbar onset. My speech is virtually gone and I use a text-to-speech app on my iPad and iPhone. The frustration I feel is unbelievable. I also have lost movement on the left side of my tongue and I have a hard time chewing. So now I'm forced to eat pudding-like food. I love good food, so this is heartbreaking for me. Swallowing is only an issue with very thin liquid. I contacted by neurologist at Johns Hopkins and asked him to put me on Neudexta. He agreed to give it a try and I will take my first dose tomorrow. I not sure anything will change, but at this point I have nothing to lose.

 

[dkcarl62]

Tillie, I haven't gotten a specific cause/reason for my speech impairment as I would have hoped for. I would have hoped they would say, your issue is a weak tongue, or a fallen pallet, or something, but no. Thus my search for and ENT eval. Which is proving very difficult, btw. As soon as I say I have MND, they want to refer me to a neurologist. So to date, I'm still "appointmentless".

 

[KimT]

The ENT at Mayo evaluated me and ordered the swallow test as well as did the scope thru the nose. She saw that I had slight paralysis of my right vocal chord and "silent reflux" even though I was taking a proton pump inhibitor (Aciphex). She thought my raspy voice, because it comes and goes, was a result of the acid reflux. She sent me right to her speech pathologist to evaluate other things about my speech. All this took about three hours but I had instant results and recommendations. She doubled the Aciphex, had me start saline nose flush, and suggested I see a speech pathologist near me. At the three-month follow up she said the paralysis in the right vocal chord had not progressed. That was 8 months ago.

I've decided to be proactive on the communication end. I downloaded some free APPS for my iPad and also a paid APP called Verbally. You can bank phrases, statements, and sentences for speed i composing e-mails and day-to-day communication. iPads can be mounted to chairs and there are many devices that allow you to roll them around and keep them at eye level in a chair or in bed. It does lack eye gaze but I felt I needed to get this part of it mastered. For those who have limb onset with clear voices, the iPad will do a great job at speech to text commands and new APPS are always being developed.

I would like to hear which programs others are using besides Tobii.

 

[cookimonster]

This was not a joke, I remember Chris saying to me - I don't even sound like myself when I say F^*k anymore! That really hit him hard. Sadly he lost use of his hands as fast as his speech and quite early so had no way to use his middle finger either.

He did pull some pretty evil eye expressions though ...

I agree that people would look at me and talk to me instead of Chris, while talking or asking about him.

He hated most that he felt people thought he was a moron because of his speech. Truly the speech issues are the most isolating factor in this monster

jeeshh Tillie... I feel as though we are living a parallel life separated by 2 years. Bulbar/FTD so cruel and torturous. Sometimes I am so grateful for finding this sight and other times too much knowledge as to whats coming...unbearable.
OK...that must've been a vent...I'm done.
Thanks...

 

[affected]

dk dang it I just read the original post again and saw you started with speechies, sorry

An ENT can do a special scope with you awake so they can actually have you speak and swallow etc while they watch from inside. Apparently this can show things the swallow studies don't show, though swallow studies are so incredible to watch as they show so much! I think that is the kind of scope Kim is referring to. Usually a gastroscopy would be done with you knocked out.

Chris was booked in for one of these but we got diagnosed before the date for this came along so we cancelled.

The ENT was upset when I spoke to him to cancel and said - he may have MND but he is over 50 and should still have this checked as he smokes and could have a tumour down in there ... I just laughed

waving at cookiemonster, try to restrict your reading a bit, I scared myself stupid in the first weeks after diagnosis with TMI! It isn't so bad (and yet it is) when you move through it all one step at a time.