Why you should seek early Speech Therapy intervention with Motor Neurone Disease
Updated: Jun 30, 2021
Motor Neurone Disease (or Amyotrophic Lateral Sclerosis/ALS as it's called in the USA) - is a cruel disease which robs people of their right to communicate and to eat and drink. You wouldn't wish it on anyone. Scientists are still looking for a way to cure it, but there are things you can do to slow down deterioration in swallow function, and retain your voice and communication abilities.
One of these ways is by seeking early Speech Therapy intervention. Building a relationship with a Speech Therapist or Speech Pathologist, that you feel comfortable with, will be crucial to your future well-being.
Motor Neurone disease affects both swallowing and communication. Speech and swallow symptoms usually present early on in the process and a good, cued up Speech Therapist, will be able to pinpoint the name of your disease long before others have even seen the symptoms. I know when I worked in community settings in the UK, I was often the first one to put a name to the symptoms the patient was having. Speech and tongue symptoms were initially present in all of those patients I saw and whilst ethics prevented me from telling the patient my thoughts, I would always write back to the GP with my clinical observations and ask the GP to refer the patient to the neurologist. If I gave the GP a suggested diagnostic name i.e. "the patient presents with symptoms similar to that of Motor Neurone Disease", it often succeeded in speeding up the process of referral to the Neurologist, thus affording a chance for intervention and support to commence earlier. This in turn, would enhance the patient's ability to prepare more fully for the future that lies ahead.
Swallowing And What You Can Do 🥛
In terms of swallowing - early assessment by your Speech Therapist is crucial as they will be able to provide you with exercises to slow down the progression of symptoms. As Speech Pathologists, we used to believe that exercising your swallowing muscles could cause fatigue, which could make your swallow worse - but now we know this is not the case. Studies on humans and animals have found that mild-moderate intensity of exercise can have positive effects, so if your speech therapist still believes that there is nothing you can do, consider changing your therapist!!. After all, you do need to be provided with the right information so you can make an informed decision about how to manage your health during this period of time.
The importance of retaining swallow function can not be emphasized enough. The below quote gives you an idea of the implications of why it is so important:
"Impaired swallowing, cough, and respiratory function are common in Motor Neurone disease, accounting for 91.4% of mortality via malnutrition, aspiration, pneumonia, and neuromuscular respiratory failure" (Plowman et al. 2019. 40-46).
So if there is something you can do to slow down the progression, why wouldn't you at least try it? Particularly if it could result in improving the quality of your life.
EMST is an expiratory strength training programme that can help improve your cough function and swallow ability. Recent studies have shown that when applied early enough in Motor Neurone Disease, the programme can be well tolerated and may help to maintain cough function and ability to swallow safely.
That same study found that over the period of time they trialled the EMST programme, oral intake (as defined by the assessment used) improved in the group carrying out the exercises by 14.4%, but worsened in those who did not receive the proper EMST treatment, by 11.8% over the 2 month trial period.
Maximum Expiratory Pressure (MEP) also showed improvements over the course of the trial and the importance of this is that expiratory pressure contributes to the forcefullness of your cough reflex. In essence, this means that your cough may retain more of its strength helping you to expel any secretions, food or drink, which may accidentally go the wrong way (and which can cause recurrent pneumonia's and consequently, increased hospital admissions), and can adversely affect your health.
EMST is a programme well worth looking into, particularly if you want to give yourself every chance of continuing to eat and drink for as long as possible, whilst simultaneously keeping your respiratory muscles strong. Your Speech Therapist should be helping you implement this early on as a protective measure against any ongoing muscle deterioration.
Communication And What You Can Do 💭💬
For a great overview of how communication is affected by Motor Neurone Disease, this fact sheet from healthtalk.org has an amazing amount of useful information. It definitively highlights the impact that Motor Neurone Disease can have on our communication, with real people interviews and text describing how they have been affected. You are definitely not alone, and don't have to feel alone, when dealing with Motor Neurone Disease.
Unfortunately, an inevitable part of having Motor Neurone Disease, is that your speech will deteriorate over time. Exercises for speech are less commonly applied in Motor Neurone Disease and so are not usually prescribed, however, there are things you can do to preserve your voice. Again, these need to be done early on in your diagnosis when your speech difficulties are less evident or not yet present.
The two main options for preserving your voice are Voice Banking and Message Banking. This video https://youtu.be/URLVXHruuzU, shows why it is important to consider voice banking or message banking at the early stages of your Motor Neurone journey.
Voice banking is an evolving technology. Voice banking involves recording your own voice over a significant period of time so that there is enough of it that they can produce a similar sounding voice (a synthesized version of your voice). This voice (or your own voice, because that's actually what it is) can then be imported into specific software programmes such as Grid 3 (which we can trial with you), allowing you to type in a sentence and voila - your voice is used to produce the sentence!! The downshot is that it is a very labour intensive process however, newer technologies are able to shorten the amount of recording required to 2-3 hours. But that is why it is recommended for you to start as early as you can. It is at this point that you should be working closely with your Speech Pathologist to achieve that goal.
There are several ways to record and bank your own voice, some more expensive than others. Your Speech Pathologist can help you decide on the best way to achieve the best voice that is within your budget. They can also check that it will be suitable to use with your chosen speech generating device. The Grid 3, for example now supports voices from Acapela, Nuance, Real Speak, Cereproc and more. Predictable is able to use voices from Acapela and Model Talker.
If you do find your speech deteriorating and you have not yet done any voice or message banking, then there is voice repair. Voice repair uses parts of other people's voice, in combination with your own, to make it sound similar to your own voice. This is only available through special developers, but it does shows promise in retaining your own vocal
identity for a longer period of time.
Speak Unique offers a new voice banking and voice repair service that your therapist can demonstrate with you, and is also a price conscious option. We are closely following this new developer.
Message banking involves storing pre-determined messages made by you and then importing them into a speech generating device. The speech generating device then stores the messages and they are ready for you to play when you need them.
Message banking requires less work than voice banking and you can do it by yourself or under the guidance of your Speech Therapist. There are ways you can do it for free but it would be best to chat about these with your therapist. This is because you need to make sure that the speech generating device you use, will be compatible with the programme you choose to record your messages. You also need to use a good quality microphone which we have available for you to borrow from our service.
Here at Enable, our choice of programme is Grid 3. We are able to demonstrate message banking using the grid 3 and we can organise for you to trial it to see if it is a good fit for you. You can also try Predictable but we find the reliability and support with Grid 3 to be second to none. Grid 3 also works with eye gaze and switch devices and this could be handy in case you choose to switch to eye gaze (ask us about the one we have that you can trial and costs less than $350.00) or switches in the futue. Predictable is cheaper than the Grid 3. We are also keen to follow up with Speak Unique whereby voices can be imported directly into your windows laptop(voices must be compatible with SAPI5 - Microsoft Speech API version 5).
Your voice represents who you are and who you have been over your lifetime. Please, please consider preserving it ahead of your journey with Motor Neurone Disease or in fact, any other progressive disease where you are at risk of losing your speech.