Why you should seek early Speech Therapy intervention with Motor Neurone Disease/ALS
- lvaughton
- Jun 4, 2020
- 6 min read
Updated: Oct 6
Motor Neurone Disease (known as Amyotrophic Lateral Sclerosis or ALS in the USA) is a devastating condition that deprives individuals of their ability to communicate, eat, and drink. Scientists are still searching for a cure, but there are measures you can take to slow the decline in swallowing function and maintain your voice and communication skills.
One beneficial approach is to seek early intervention from a Speech Therapist. Establishing a relationship with a Speech Therapist or Speech Pathologist whom you trust and feel comfortable with will be essential for your future well-being.
Motor Neurone Disease impacts both swallowing and communication abilities. Symptoms related to speech and swallowing often appear early in the progression, and a well-prepared Speech Therapist can identify the disease long before others notice the symptoms. During my time working in community settings in the UK, I frequently was the first to recognize the symptoms the patient was experiencing. In all the patients I encountered, speech and tongue symptoms were initially evident. Although ethics prevented me from sharing my thoughts directly with the patient, I consistently communicated my clinical observations to the GP and recommended referring the patient to a neurologist. By suggesting a potential diagnosis, such as "the patient presents with symptoms similar to Motor Neurone Disease," the referral process to the neurologist was often expedited. This allowed for earlier intervention and support, enabling the patient to better prepare for the future.
Speech Therapy, Swallowing And What Can You 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 improved during the trial, which is significant because expiratory pressure enhances the strength of your cough reflex. Essentially, this implies that your cough may maintain more of its power, aiding in the expulsion of secretions, food, or drink that might accidentally go the wrong way. This can help prevent recurrent pneumonias and, as a result, reduce hospital admissions, thereby positively impacting 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.
Speech Therapy, Communication And What You Can Do for Motor Neurone Disease/ALS?💭💬
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/ALS 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/ALS and Speech Therapy.
Unfortunately, an inevitable part of having Motor Neurone Disease, is that your speech will deteriorate over time. Speech Therapy 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/ALS and Speech Therapy journey.
Voice Banking
Voice banking is a developing technology. It involves recording your voice over a considerable period to create enough data to generate a similar sounding voice (a synthesized version of your voice). This voice (essentially your own) can be integrated into specific software programs like Grid 3, Touchchat, Predictable and many others, enabling you to type a sentence and have it spoken in your voice. The drawback is that it can be a labor-intensive process, but newer technologies have reduced the required recording time to about 1-3 hours. This is why starting as early as possible is recommended. At this stage, collaborating closely with your Speech Pathologist is crucial to achieving this 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.
Voice repair
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
Message banking involves storing pre-determined messages that you can import into a speech generating device for playback when needed. It requires less effort than voice banking and can be done independently or with a Speech Therapist. While there are free methods available, consulting with your therapist is advisable to ensure compatibility with your device and to use a good quality microphone, which is available for borrowing 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.
Best wishes
Lisa 💗
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