Keeping Vocal - Speech and vocal problems in EDS and how to manage them

Speech and vocal problems are very common in EDS. In fact it is one of the earliest signs that a child may have EDS that is now becoming more known. Speech delay, selective mutism, extremely low-volume speech, and other speech problems are very common in early years of EDS children. Speech problems, swallowing problems, frequent coughing and choking are common problems that continue through adulthood.

Speech delay was probably one of the first signs there was something wrong with me as a small child. I didn't really speak until I was about four years old. Even then it was only when absolutely necessary that I actually spoke. I think I was even sent to a speech therapist to find out why wasn't talking. I was very quiet, and when I did eventually speak it was with a very soft, low-volume voice.

Thankfully as I got older I got more confident with speaking and eventually it was hard to shut me up LOL.
However, now with EDS affecting me more than ever, speech and vocal problems are common parts of my day.

The main problems now are that my voice, or rather my vocal chords and throat muscles, get tired very easily. The effect of this is pain, throat spasms, and fatigue. This results in my voice getting quite croaky, low and manly sounding, and either quiet or strangely louder.
I get sore throats a lot and I can also get quite breathless whilst speaking, however this breathlessness is more to do with POTS I believe.

As I've got older I found I struggle more pronouncing words that I used to have no problem with. Words that start with a W, WH, and WR and when a R word comes before or follows a W word e.g. ‘white rabbit’, or ‘real writing’, take a lot of concentration, and sound just wrong. It frustrates me because up until a couple of years ago I didn't have these problems pronouncing words.

Looking after the EDS voice

Thankfully as a trained singer I am very aware of how the voice works, problems that can develop, how to protect the voice, and treat problems. The voice is basically a group of muscles, and like any other group of muscles that are worked regularly and harshly, they need good maintenance and care.

If you went running every day you would warm up your muscles beforehand, know when to stop pushing yourself too hard, and how to care for sore muscles.
The voice needs looking after, especially in EDS.

Here are some things you can do to look after your EDS voice, as well as deal with some of the common problems you may have:

1. warm up your voice if you're going to be talking for a long time e.g. given a presentation, speech talking on the telephone. Warm-ups include humming, making exaggerated chewing movements, moving the jaw around in circles in both directions, gently moving the neck around, rubbing and patting the neck and face gentle to encourage blood flow and pursing lips e.g. kisses.

2. Take regular sips of water, at room temperature, when talking.

3. Avoid relying on throat medicine e.g. lozenges, medicine etc too much because these numb and coat the vocal cords and throat muscles which means you can damage them more without realising. Instead soothe sore throat muscles with warm (not hot) drinks and rest.

4. Pace yourself. Just as we EDSers need to pace our energy usage, those of others with voice problems should also pace ourselves vocally. If you know you are going to need to talk a lot later rest yourself and avoid talking too much beforehand. After talking for a long time, or if you start to get sore and tired vocally, rest your voice afterwards.

5. Avoid straining your voice such as screaming, shouting, talking loudly, talking for a long time etc. Also be aware of certain environments and situations that can cause your voice problems such as dry atmospheres, smoky atmospheres, breathing in lots of cold or hot air, smoking, drinking strong spirits, eating spicy foods, eating foods that you know cause your throat to get scratchy or swell, and catching colds and flu.

6. Although typical throat lozenges aren't great to have all time, there are some products which are good to use and will help you vocally. Vocalzones are lozenges that I use regularly when I'm going to be singing. Instead of soothing the throat, they open your airways and throat which improves vocal quality and helps the voice. You can buy Vocalzones and similar lozenges over-the-counter. Ask your pharmacist for lozenges for speakers/singers not for sore throat. http://www.vocalzone.com/

There will be times when no matter what you try you still struggle vocally. There are times when I can't speak, speaking is really difficult, usually because of brain fog, although at times because my throat vocal chords are just too tired and sore.

Because of this I have some communication apps on my iPhone. ‘Buzzcards’ and ‘Quiettalk’ my favourite and can be found in the App Store. These apps enable me to communicate with people when I can't speak by either typing what I want to say or selecting a pre-typed card.
For more information and to see how I use these you can watch my video about from my youtube channel at the end of this post.

I hope these tips and information is helpful. If you would like more information or advice on specific problems contact me. I'm not a doctor or in any way authorised to give medical advice however I can recommend ways to protect and look after your voice as a vocal teacher.

New found finger freedom! The joys of voice recognition software

Hello folks, this blog is coming to you via the amazing Dragon naturally speaking voice recognition software.

I've been struggling with typing for long periods for a while now because my hands are getting much weaker and painful. When I'm not using my hands they curl right up into loose fists and I have pain in my fingers, knuckles and wrists most of the time now. I also have shooting pains through my hands and up into my arms a lot. This has been making it increasingly harder to use my hands for certain tasks. Writing with a pen has been hard work for at least a year now, typing for a few months.

Annoyingly I can touch type with great precision and speed having learned when I was younger and working as a legal secretary. So imagine my frustration when I realised recently that I was no longer be able to rely on typing as much as I have. Add to that my increasing brain fog and you can see why I was getting worried and nervous about starting to study towards my second degree in June!

I'd heard about voice recognition software including Dragon naturally speaking, I noticed that a few of my disabled friends were using it for studying. I decided I definitely needed to have a try because it was probably something I was going to need in order to get through my degree. Luckily I have a friend who already had Dragon and offered to lend it to me for me to try it out.

I've installed dragon onto my laptop about an hour and half ago. After spending about 10 min going through voice training, which gets the program to recognise your voice, vocabulary and accent etc, I then had a quick play about dictating a few Facebook posts as well as learning the basic program commands.

It seems quite surreal but after just an hour or so of playing with it, I am already able to dictate this entire blog post having never used voice recognition software in the past! The best part, I don't have to worry about my awful spelling! LOL
What I find most amazing about this is not the way the program works, or how precise it is at recognising what I'm saying, or even the speed at which I'm able to write this blog. The thing that excites me most is how much I'm going to benefit from this program.

There are many days now where I'm unable to answer e-mails, chat on Facebook as much as I would like, and there is some work that I've needed to do for the past three weeks for my Bible study class that have been unable to do. And as for my blog, it's something that I rarely get to do now because my hands and brain just aren't up to it.

With this program I will be able to keep up-to-date with my work, friends, and studying. Not only that but I will also be able to do things and try things that I've been wanting to have a go at but just not been up to it. I hope that with voice recognition software I will be able to get blogging regularly. One thing that I'm looking most forward to is been able to do work, type letters and chat with my friends online on my bad days where I am stuck in bed with very little energy and too much pain.

I realise now just how invaluable software like this is to people who are far more disabled than I am such as people who have quadriplegia, spinal cord damage and other paralysis.

So there we have it, thanks to modern technology, you have been able to enjoy some late-night ramblings from me thanks to Dragon naturally speaking voice recognition software and my very supportive friend Angie!

I'm off to catch up with my snail mail. I have at least 10 letters from my chronically ill penpals that need answering. And guess what… I think I'm going to get through them all :-)