It is no exaggeration to say that sometimes people who have MS are mistaken for those who are intoxicated. Who needs alcohol when you already may have symptoms of feeling off balance, having an unsteady gait, and vertigo? And then you add some slurry speech to the mix and you might pass for Otis the drunk on the Andy Griffith show.
Did you know that the slurry speech caused by MS has a fancy name which is hard to pronounce (at least for me)? Well of course it does. There is always some new terminology to look up when you are diagnosed with Multiple Sclerosis. It is officially called "dysarthria" which simply means that the muscles which control your speech are weak. We tend to think of MS causing weak muscle limbs such as in our legs and arms but it can also affect those muscles needed for talking and swallowing.
How many people who have MS have this problem and how severe does it usually become?
The National MS Society tells us that between 40-50 percent of people who have MS will have speech difficulties. But for most of these people the changes in speech are mild and it is still possible to be understood.
How do I know about dysarthria?
I know about it because I have experienced it many times now since my diagnosis of MS.
My mother tells me that when I first learned to talk, I didn’t say many single words but came bursting forth with full sentences. Talking is something I have been doing for decades and I have never thought twice about it. I took this capability for granted until I both of my sons had speech difficulties early on. My youngest child who has autism has severe speech problems and has what is known as apraxia of speech. Whereas dysarthria is caused by weak speech muscles, apraxia is a motor planning disorder making it difficult for the person to accurately sequence movements needed to produce speech sounds.
After my youngest son was diagnosed with autism, I was told that he may never learn to talk. Basically I had to teach my child to talk (with a lot of help from speech therapists) and we did succeed after more than several years of intensive work. I remember days when he could not even suck from a straw or blow bubbles. If you think that the ability to produce speech is something easy, think again. There are so many complex systems at work that I find it a miracle that anyone can talk. My work with my son and in the field of special education has taught me never to take this ability for granted again.
But I must say that the first time I lost my speaking abilities due to my MS, I was surprised.
What is it like to have dysarthria?
The first time I experienced speech problems due to my MS, I was in a park with my son. It was one of those first hot days after spring and the heat caught me by surprise. All of a sudden I was having not only problems walking but found myself unable to talk very well. When I tried to make sounds I lingered on those initial consonants in an attempt to push the word out. So if I were trying to approximate the word, “stop” for example, it would come out this way: "Stttttttt (pause) and then an explosive “OP” It seemed to take so much energy just to get out but single words. I knew I would have to conserve my energy for the most important messages I wanted to say. It felt as though the words were stuck in my mouth like a bunch of marbles and that I needed this tremendous amount of energy and concentration to force them out of my mouth. I have also had the problem of feeling so weak that my voice muted to barely audible.
My son, who has endured many years of speech therapy, giggled in response to mommy’s silly sounds which were supposed to resemble speech. I finally fully understood the frustration that he must feel in trying to communicate.
Losing your ability to talk never happens at a convenient time unless you are entering a monk monastery where speech is not necessary; I once lost my speech when I was expecting an important phone call. I simply had to explain (slowly) that I was not able to talk right then and could they call back at another time. If you are with family and friends when it happens, make sure they know that you are having problems at that moment.
So what can you do to cope with having these speech problems?** Be aware of your warning signs of impending symptoms and tell people ahead of time if you can.**
I can now tell when I may begin to have speech problems. I tend to feel weak, disoriented, and I usually see flashing lights in my periphery. These are my unique signs that some neurological symptom may be coming. But everyone is different. You may have your own predictive signs which indicate that symptoms are on their way. I am also very affected by the heat and so I know if I go out on a hot summer day that I may lose my speech. I think it is wise to tell the people you are around most often that this symptom can occur so that they can help you.
Know that this symptom, especially if you have relapsing remitting MS, is usually temporary.
For me my speech difficulties generally last from a few minutes to several hours. When a symptom lasts more than 24 hours and extends into days and even weeks, then this is the time to get to your doctor or neurologist to seek advice and treatment. If these speech difficulties persist you may be referred to a see a speech therapist.
Conserve your energy when you are having speech problems.
Use short phrases or even single words if you have to. Don’t worry so much about how you sound. Just get your message out the best way that you can. I find that rest helps me to recoup from having this symptom. If you are able, take a break.
Make it easier to be understood.
Go to a quiet place to talk without a lot of background noise. Make sure you are facing the person you are talking to so that they can see you. Take your time and use lots of gestures to get your message across.
If you know you have this problem it may be wise to find alternative ways to communicate.
There are always adaptations you can make in order to communicate. The world relies so heavily upon verbal communication but there are many other communicative systems to explore. The first thing I thought about when I began having periodic speech problems was to use sign language. There are several challenges to this method however. For one thing you have to know some signs and also teach these signs to your loved ones and people who you need to communicate with. Signs will not work for a phone conversation. And you will also need to have cooperative hands to be able to make the signs. Early on I had taught signs to my family in helping my son to talk so this method works for me in a pinch. You can find tons of information in books or on the web to learn basic sign language such as this site complete with videos.
Another way to communicate when you are not able to speak very well is to use a picture communication board.
My son had used this visual system for communication for years. Basically you create a visual grid and place icons or photos into the blocks of the grid. You would want to include those items which are most important for you to communicate perhaps like bathroom or the need to rest. You could keep such a communication board in places where it would be most convenient to find when you need it such as your purse or a small version in your wallet. This way, in a pinch, you can point to the visual icons to express your needs. You can find free printable visual icons to use at this website.
**Communicating by writing may be yet another way to get your thoughts across when you are less able to express yourself verbally. **
It may be wise to carry a notepad and writing implement with you in your purse or car just in case you need it.
Aside from these methods of alternate communication, there are always augmentative devices available if your speech problems persist and become more of a permanent symptom. Technology is wonderful these days. There are hand held devices which allow you to type in your message and it will talk. There are ways to communicate with the use of a computer and eye blinks. To know all of your options, consult with your doctor or a speech therapist.
Now how about you? Have any of you had trouble with your speech due to your MS? What has helped you in these instances? Your ideas just might help someone else.
I am a mother, a writer, and now an MS patient