Q&A: Speech and language problems in Parkinson's

Professor Nick Miller is a speech and language therapist. He is an international expert in his field.

He joined our discussion forum in December 2010 for a question and answers (Q&A) session on speech and language problems in Parkinson's.

Transcript of the event

Professor Miller: Hello, I'm Nick Miller.

I have worked for many years as a speech and language therapist before taking up my current post as an academic-clinician at Newcastle.

I have a strong interest in communication changes in Parkinson's and trying to find what can be done for people with Parkinson's to improve and maintain communication over time.

I am particularly interested in swallowing changes in Parkinson's, and the impact this can have on people with Parkinson's and their families.

I work with people with Parkinson's in clinic, at the local Parkinson's UK support group and in research projects. I hope that I can add to this by answering your questions.

Questions and answers

Weedy from the website: I have Parkinsonism, and my main symptom is lack of speech. I have undergone a course of Lee Silverman Voice Training in 2007 and that helped me to deliver a 'father of the bride' speech at my daughters wedding, she incidentally is a speech therapist. I attend a loud crowd session once a month and a general speech therapy group once a fortnight. I also do my voice practice every day. Yet there is no volume there when I want to answer the phone or speak to my wife. What can I do?

It's great to hear you were able to deliver the 'father of the bride' speech. Well done on what I am sure was a daunting occasion. In terms of what you should do, it seems like you are doing all the right things one might recommend – attending a formal and informal support group, continuing your voice practice on a daily basis.

You might want to get confirmation from the speech language therapist (SLT) at the group that your calibration of what is loud is still appropriate – that is, that you don’t need to reset again your level of effort to achieve a loud enough voice.

As regards the two situations you mention, a few possibilities spring to mind.

Firstly, the telephone: talking over the phone when the listener cannot see you is a different kettle of fish to speaking face to face. Therefore before you speak on the phone you might try and really focus your attention to make sure you will be speaking at maximum loudness. Plan what you have to say beforehand if possible. Often having to think on the spot, again with no feedback from the other person that the silence is not a signal you have finished your turn/the call, can affect levels of loudness and precision of speech in people with Parkinson's.

Also, it's more difficult for listeners when they can't see your mouth – they might be able to understand you fine when they have clues for difficult words by looming at your mouth, but these clues are absent on the phone. If you have something important to ring up about, choose a time when you know you’ll be at your best in the day or in your drug cycle.

Try slowing your speech and being over-deliberate or over-emphasising your words. It might seem/feel strange to you but listeners will probably not notice. One can get attachments for telephones that amplify your voice. So long as your speech is clear this might be a good idea, or getting a portable amplifier for use in lots of situations (there are all sorts of shapes and sizes, pocket size portable, ones that stand on the table and bigger ones still – select one that fits your needs).

Check that how you hold the receiver is not an issue – is the mouth piece held as close to your mouth as possible, do you manage to hold your arm up sufficiently well to do this? Try sitting at a table with your elbow rested on the table to support your arm holding the phone if this is an issue.

Check with your wife/daughter/friends whether it IS the volume that is undermining things on the phone – and not for instance that you don’t take in sufficient breath to give full power to your voice, or it's your pronunciation that is less clear (see point above about lack of visual clues for listeners, so you have to be doubly clear on the phone).

As regards talking with your wife: check it's not the general environment stacked against you (for example TV/radio on at same time, trying to call from upstairs or the next room); check your wife is hearing everyone OK and has no difficulty with hearing, so it's not specific to you. Check you have her full attention before you start to speak.

If it's not those factors, then maybe think about: is it all the time or just certain situations. Are the certain situation related to the topic, the place, the time of day, stage in drug cycle, or whatever. If any of those, why might it be more difficult at those times/places/situations? Then think of solutions around the reasons.

Another factor might be that when we speak to family/friends, especially when relaxed in our own homes, we tend to be a lot less formal, a lot more relaxed, and therefore attention to speech and loudness can lapse a little. Also, we might be slumped back in our comfy chair – great for relaxing, but not necessarily best for getting posture right for the good deep breath in to power your voice. You may just need to top up your 'think loud' tank a bit or make sure you're sitting in a manner that still enables you to breathe well for speech.

A final thought I guess relates to the condition of Parkinson's. It is unfortunately a progressive condition - despite the best therapy and best efforts things can deteriorate. So it could be that a top up session of more intensive therapy is required rather than the group support sessions. You’ll know better than me if that is the case. Get your SLT to do a review assessment to check out the possibility.

I hope this gives you some ideas and things to think about.

Anonymous from the website :  I have heard a lot about the Lee Silverman Voice training. What is it? Is it good for people with Parkinson's?

This programme formalises a method long used by speech and language therapists in Parkinson's and other disorders, that of aiming for and sustaining maximum effort during speech, and in Parkinson's in particular in relation to voice loudness. By combining principles of skill acquisition and learning new actions – keeping it simple, high-effort, with multiple repetitions and a focus on feedback and self monitoring – the LSVT programme is specifically tailored to people with Parkinson's.

The essential ingredients are:

• exclusive focus on voice, specifically vocal loudness
• high-effort productions of sounds, words, sentences with many many repetitions
• intensive treatment delivery (4 individual sessions a week for 4 weeks)
• enhancement of own awareness of how loud one is speaking and how much effort one needs to use to improve voice loudness and maintain gains outside of clinic

Evidence that LSVT achieves its stated aim of improving voice loudness is strong, with claims that it also improves aspects of articulation, facial expression and swallowing.

Lee Silverman Voice Treatment is an intensive programme of therapy that aims to improve intelligible oral communication by teaching speakers to increase their vocal loudness using tasks designed to maximise voice and breathing functions.

LSVT has 5 concepts that are implemented during the therapy: think loud, high effort, intensive treatment, calibration (being aware of the goal you need to reach in terms of effort put into speaking) and quantification (keeping close, regular measures to check goals are achieved and maintained). Treatment only focuses on voice even if a speaker has evidence of slurred speech.

Why is LSVT used with speakers with Parkinson's:

People with Parkinson's develop problems with their speech and communication that can include: lack of volume, hoarse voice, lack of expression and indistinct speech. LSVT uses high phonatory (voice) effort tasks which will increase closure of your vocal cords and respiratory (breath) support for speech. These tasks require speakers to give maximum effort during phonation and this results in louder voice and therefore better intelligibility.

How is therapy applied?

Therapy must be applied by an LSVT LOUD certified clinician. The clinician attends a 2-day training event that costs several hundred pounds to register to become an LSVT therapist. She has to sit a test to obtain certification.

People attend a minimum of 16 intensive, individual sessions. Each session lasts one hour and there are 4 per week. There is also homework and carryover exercises with family and friends outside the treatment room once therapy has finished. To obtain increased loudness and phonatory effort, the person is asked to use increased loudness and phonatory effort for 90% of every session.

In each session individuals carry out 3 daily variables:

1. Maximum duration of vowel sounds (say 'ah' as long and loud as you can with 10 to 12 repetitions): this exercise is designed to improve vocal cord closure and coordination between voice and breathing. A voice sound level meter is used to monitor performance.
2. Maximum fundamental frequency: this exercise is directed at restoring better intonation (up and down singing movements of voice). The person reaches to their highest pitches followed by lowest pitch 10 times each using the vowel 'ah'. To monitor pitch a digital tuner can be used.
3. Maximum functional speech loudness drill: the aim is to assist the carryover and maintenance of a loud voice in daily communication. The individual produces 10 everyday phrases using a loud voice 3 to 5 times each. The equipment is the same as daily variable one.

Within all tasks individuals are encouraged to sit upright to aid breathing and are prompted to increase loudness. As a result of the concept of calibration, the person understands the amount of effort needed to be consistently loud in their daily practice resulting in the effects of treatment carrying over for at least 6 to 12 months.

Demonstrations of daily variables can be found on the LSVT website.

What does the evidence base say?

Many of the research papers are in part written by the founders of LSVT - and LSVT Global describes itself as a for-profit business. However the research discussed typically follows rigorous testing to establish reliability and validity of results.

Long-term effects of LSVT: a study looking at patients 2 years post treatment found that patients assigned to an LSVT therapy group were more likely to maintain improvement in loudness up to 2 years after treatment than patients assigned to other therapy even if the other therapy was as intensive as LSVT. These findings help to rule out just the intensity as the reason for change.

Only trained clinicians can administer LSVT, therefore it is not widely available and there are practical difficulties associated with service delivery within the NHS. However recent research suggests that LSVT could be delivered over the internet as similar treatment gains were found between individuals treated over the internet and those treated face to face. It has also been established in preliminary studies that treatment over 8 weeks rather than 4 may be just as beneficial.

Is LSVT good for people with Parkinson's?

As regards voice loudness the evidence definitely suggests it is a beneficial programme. Like many other intensive, high energy physical exercise programmes it may also have beneficial side effects of well being, more energy, slower progression of (speech) symptoms – these claims are though all still highly speculative.

As you might surmise from the intensity of the programme, not all people with Parkinson's would feel themselves in the position to follow the course through, especially as there may be daily trips to clinic too.

If slurring of speech has become a big problem and there are difficulties with language (finding words, putting words into sentences) LSVT would not be likely to benefit these aspects of change. It might be worth talking to a few people who have taken the LSVT course to see what their experiences were in terms of gains in loudness/intelligibility, costs in terms of commitment and time and energy.

Emswife from the website: MY OH says my voice is now much softer. How can I improve the volume to what it once was, when I could be heard clearly at the back of a large classroom?

A quieter voice is one of the commonest symptoms of Parkinson's. The main cause of this is probably twofold.

Firstly, because of the rigidity of muscles (your vocal cords are muscles) that develop in Parkinson's the vocal cords that produce your voice do not come together so well and do not vibrate with the same efficiency, and so voice is weaker. Often poor co-ordination with breathing also contributes to this (air/breath is the driving force behind voice, so if this is impaired there is less 'fuel' delivered to voice production).

Secondly, a feature of Parkinson's is that the brain does not 'scale' movements well any more – it doesn’t programme the right force/range of movement – so strides when walking tend to be shorter, arm movements are not so extensive, facial expression tends to be reduced – and, again, since the vocal cords are muscles too, then voice is quieter.

On top of this an added handicap is that the brain doesn't monitor its performance very well any more. In particular, it may think it is telling muscles to exert maximum force, when in fact force applied is severely underpowered. Many people with Parkinson's may feel they are shouting their heads off in terms of the effort they think they are exerting in speech, but to others their voice sounds very quiet.

So, the secret to getting louder voice in Parkinson's is to reset/recalibrate the brain's sense of effort when producing speech and improve self monitoring of voice loudness. Intensive, regular vocal exercises can achieve this. There is even a programme specifically for people with Parkinson’s – the Lee Silverman Voice Treatment programme (LSVT) – that targets precisely this factor. It's best to do this under the supervision of a speech and language therapist, since like with all physical exercise regimes, if misapplied or done wrongly one can end up doing more harm than good.

If this is not available locally, and if your speech is clear and not slurred, then using an amplifier (eg lapel worn microphone and mini loudspeaker) helps some people. Not all people are happy using such devices. Again, chat it over with your local speech and language therapist.

Anonymous from the website: Should I see a speech and language therapist before I have speech/swallowing problems? Why isn’t LSVT offered all over UK on the NHS?

Yes, I would recommend this.

Why? The work of the SLT (speech and language therapist) is not just about putting things right once they're below par - a lot of work is around health education, health promotion, preventing things becoming below par in the first place. If one can avoid certain problems arising in the first place or catch them before they get out of hand it is so much easier to deal with than if one is faced with what might already have become an intractable problem which cannot be righted any more or will entail a lot of effortful therapy to put things back on track.

If you went to see the SLT before you feel you have problems she would most likely proceed by:

a) doing full assessments of your voice, speech, language, swallowing to double check there really are no adverse changes. Clinical assessments can pick up subtle changes that are emerging before a speaker/family member notices themselves.

b) if there are no real or imminent difficulties she may either put you on 6 month or so review, or more likely….

c) she will talk about what possible adverse changes to talking and swallowing may occur, how to recognise them before they assume unmanageable proportions. She will work with you and your family to help you understand what is happening, how to avoid negative effects in communication or swallowing.

Communicating and eating are more than just moving your tongue and lips. Changes in communicating or eating can affect ones confidence, independence, mood etc – so the SLT will want to help prevent these factors arising too. She may refer you on to physiotherapy or occupational therapy colleagues to get advice there about feeding, mealtimes, walking and talking and so forth.

For some people with Parkinson's (and their family) coming to terms with the fact that problems might arise or have arisen is a looming prospect. Some folk cope with this through putting it to the back of their mind, not wishing to acknowledge it; others acknowledge it but wish to fight on using their own resources; others feel forewarned is forearmed and so might seek advice before changes occur.

These are all legitimate reactions and entirely up to the individual to make their own choice for their own circumstances and personality. I’m not sure from your question which (if any) of these groups you might fit, but if you have any hesitations, I would recommend visiting the SLT even if you feel you have no problems, however much of a big step that might be.

Lorna: I am very lucky as I have been offered LS voice training early next year. I have to wait for the speech therapist herself to receive the training! The commitment is demanding: 4 hourly sessions x 4 per week  for 6 weeks. I'm determined to do it as my job involves speaking to the public and my voice fades away all too quickly. Will maintenance of the improvement be as equally demanding?

Yes the programme itself is 4 hourly sessions per week for 4 weeks, with plenty of homework and home practice drills in between clinic trips. One of the problems with a lot of physical treatments in Parkinson's is that gains in clinic soon fade if practice is not kept up. So the LSVT treatment also incorporates a follow-up programme with set out, designated exercises and goals to practise each day. Trips to clinic are less frequent and the speech language therapist may do reviews over the phone, but nevertheless the drills continue.

The trick is to incorporate these into your daily routine, in much the same way you might incorporate a 10 minute walk in the morning and 10 minute walk in the evening into your daily programme. But you can also turn opportunities to talk into practice times too – by remembering all the tips and instructions the speech and language therapist teaches you.

The answer to your question then is probably, yes, follow-up practice definitely demands of your time and attention, but if properly managed this should not be unduly demanding.

Anonymous from the website: Sometimes I find that I am thinking of a word but when I speak another word altogether comes out of my mouth. Is there anything I can do about this?

Words aren't 'stored' in our brains each in its own separate box or drawer. They are stored in networks. We might for instance have a network around animals, or things you can eat, or things you find in the kitchen, things to do with warmth. Within larger networks are smaller ones (for example farm animals, jungle animals; furry ones, slimy ones).

Networks are made up of words we associate with each other in one way or another and the meaning of a word is the assembly of associations it has. Many of the links will be common across lots of people – associations with 'dog', 'honesty' and so on. But networks may contain often very personal links (for example, someone associates liquorish with treats, someone else associates it with poison).

The upshot of all this is that when the brain looks up a word it needs to say, it activates not just a single word but a whole network of associated, similar meaning and similar sounding words. That means that when you come to say something, although you might not always be consciously aware of this, the brain is having to select which is just the right word from this whole network of possibilities. If everything is running smoothly it manages to activate just the word it needs. But even in people without Parkinson's the process has its blips.

We've all experienced the tip of the tongue phenomenon where you can't get to the word, but can describe all its associations. Or the 'tip of the mind' phenomenon where you feel you know what the word means, it sounds familiar, you have a vague notion of its associations but can't pin down its exact meaning. We've all ended up taking about 'thingamy' and 'whatdoyoucallit' and 'whathisname'. And we all sometimes come out with the wrong word, call the table a chair, call your friend Clara Jenny instead, say someone lives at number 25 when you meant 34.

What is happening is that instead of the target word, the brain selects a closely associated word from the network. These slips are common enough, especially when we're tired, under pressure of one kind or another (in a hurry, trying to do 20 things at once).

In Parkinson's slips may be more frequent because of changes to attention; changes in how well the brain monitors what it is doing, its ability to activate just the target it needs and inhibit or suppress unwanted other candidate words. Alterations to how fast processing happens in the brain may be a source of slips and for some people there might be a kind of loosening of ties within the association network which means particular words are not so easily activated/accessed or no longer so clearly differentiated from other words.

So, that explains why it might be happening. Is there anything you can do about it? If it is not bothering you unduly and does not undermine making yourself understood to others, I wouldn't worry too much about it – like I said, we all make these slips, some more than others.

If you are worried about it though, I would get an appointment with your local speech language therapist. She will be able to carry out a full assessment of your speech and more importantly of your language (finding words, putting them into sentences). If things are not up to scratch she will be able to recommend exercises to do.

Some people feel that doing word games helps – for example, odd one out, describing similarities and differences between pairs of words (brooch-necklace; tram-train; pretty-attractive, etc), alphabet games (find an animal, etc etc etc that starts with each letter of the alphabet). There is no firm evidence that this really does improve things, but it can help to keep your mind occupied and agile.

passeggiata:  I used to have a very loud voice before I was diagnosed with PD in 2001, and had to make an effort to lower it, for example when speaking on the phone. Nowadays it usually sounds about the right volume to me but I am quite often asked to repeat what I say. I then have to use a volume that sounds like a shout to my ears. How can I get the volume right given that I don't seem able to rely on my ears to let me know?

That’s a common complaint in Parkinson's – people feel they are speaking at a reasonable loudness yet others fail to hear them; individuals feel like they are shouting yet listeners still seem to think the voice is too quiet.

As you will see from other replies, the likely cause of this in Parkinson's is from 2 sources:

1. Individuals tend not to be able to monitor their speech/voice loudness so well.
2. The brain fails to put sufficient driving force behind the movements needed for good voice production.

Coupled together this means that the voice loudness is below what it should be, but the brain fails to pick up that it is not.

To get the volume right one needs to first find other sources of feedback about how on target your voice is with loudness – from a listener who can give honest and accurate feedback; from a sound pressure level meter (that measures how 'loud' we speak). The latter is not something that everyone has in their back pocket or stacked away in the cupboard, and they can be pricey to buy.

Another method then might be to use the recording level meter on any recording device you might have. Place the microphone a fixed distance from your mouth. Get feedback from someone else about when your voice is quiet – note where the dial/needle/light comes up to; get feedback from someone about when your voice is good – note now where the level reaches. Practice then saying sounds prolonged for a few seconds – example 'ah' or 'oo' or 'ee' – and make sure the dial stays up in the voice acceptable level. Later try with short phrases – good morning how are you; what time is the news on TV, etc. Again, aim to keep the indicator up at the acceptable level mark.

It's better if you can get some support. So I would recommend you fix up an appointment with a local speech and language therapist. She will be able to carry out a full assessment; she will be able to demonstrate exercise to you and draw up a properly structured practice programme; if you're in luck she’ll have a sound pressure level meter you can borrow to practice with.

A few other points to be aware of: check you are not trying to speak against loud interfering background noise or not trying to shout from one room to another. Best to try and speak face to face so listeners can watch you as well as listen to you. Become aware of times of the day when it is particularly difficult to maintain loudness and either avoid those times for conveying important info or make sure you save your energy for those times. Check breathing is not a problem too – you need air to be able to drive the vocal cords and if the air is not sufficient or not used efficiently voice loudness will suffer – so if you go to the local speech and therapist make sure you get advice too on breathing for speech.

forggatt: There are times when my voice is normal (so I believe the underlying mechanics are working) but mostly in a conversation I get a bit stressed, my vocal chords seem to tighten up and my face and inside of my mouth seem to just freeze. My mouth is very dry and sticky and I can't seem able to form the words (but I am mentally keeping up with the conversation). I have tried opening my mouth wide to exercise the muscles of my face and mouth and when I'm fully relaxed things are OK.

I don't know which is the chicken and which is the egg but this 'frozen' status can affect me with my partner, my children, Parkinson's friends and other friends - it makes me feel more stressed as well thus the chicken and egg statement

I have had speech therapy recently and with the speech therapist my symptoms are never at their worst. She has taught me many tricks and procedures but in a live conversation the frozen symptoms keep getting in the way of my free speech.

It's good you have a few tricks up your sleeve from the speech and language therapist. However, like you say, these little tricks are never cure alls and before they have an effect it often takes a lot of practice.

In particular there is a big difference between rehearsing and getting good at something in a quiet clinic room in a one to one situation on controlled tasks and being able to do the same thing in a quick changing conversation with multiple people in a noisy environment outside of clinic. So, a first thing is to make sure you do a lot of practice with your tricks and in real life situations, till they become kind of second nature. Like you say – when you are relaxed things appear to be relatively ok, it’s only when you tense up it becomes difficult. This is why it is important to practise things until you can fall back on your compensatory tactics even under pressure.

But there may be some other issues here. I’m not sure whether what you describe is the freezing that some people with Parkinson's report with gait and for some people can also occur in speech – it's as if speech arrests mid sentence or even mid word, or when trying to start off a sentence, speech just won't come, it's stuck. Chat with your speech and language therapist about cueing techniques – a rhythmic metronome cue or an intermittent auditory beep. These are helpful for some people with Parkinson's in overcoming freezing of speech.

Your description though may be indicating slurring of speech. In the same way that in walking some people with Parkinson's end up with shorter and shorter strides until they come to a complete stop, this can happen in speech too. A way round this is to practise rate control – again your speech and language therapist will be able to work out with you the best rate to aim for and the methods that suit you best to maintain that rate. Controlling rate is also a way of controlling tension – if one is not trying to speak faster than the speech mechanism works, then it will not tense up.

Work directed at individual articulators (the tongue, the lips, etc) is unlikely to improve things here, and especially if those exercises are without speech (just stretching open the mouth and so on). Firstly even though these exercises might involve the same muscles as one uses in speech, the brain controls these kinds of movements quite differently to speech movements – so there is unlikely to be carry over from one type of action to the other (non-speech to speech).

Further, range of movement itself is not the underlying problem for speech in Parkinson's – it's more making sure that the brain puts sufficient effort/ power into the movements to attain and sustain the range and rate of movements (see the responses on voice problems, where exactly the same principle pertains). For this reason general work at overemphasising, over-exaggerating movements, aiming for a voice as loud as possible may assist and making sure one gives full value to very bit of movement of the tongue and lips to assure every sound is produced.

You mention your mouth is dry and sticky. If this is a problem it is important to find out why. It may be because you are losing a lot of saliva through drooling or you are on drugs that stem the flow of saliva. Either way, talk with your speech therapist to establish the cause. If artificial moistening of the mouth is necessary, she can recommend sprays that keep the mouth moist.

JAMY: I have oesophageal dismotility, with a slightly deviated sulcus and a mild multinodular goitre with a warm nodule in the right mid-thalamic pole. My thyroid tests are normal. Therefore I have trouble swallowing my tablets; they get stuck in the throat. This is a problem especially at night when I can't drink a lot of water due to reflux.

The specialist suggests that I have liquid medication, however my medications are:

• Co-Careldopa (25/100 mg Tablets, Carbidopa/Levodopa
• Caramet (25 mg/100, CR Tablets, Carbidopa/levodopa)
• ReQuip XL (4 mg, slow release)
  

How does one overcome the problem of needing slow-release tablets? I don't think they come in liquid form. Any ideas would be most welcome.

JAMY, I am not a prescriber so I recommend you go back to your consultant to see what the best alternative combinations of medication and dose levels might be.

The non slow release versions of the co-careldopa tablets can be crushed to make swallowing easier, but as far as I am aware the slow release versions cannot. There may be some equivalent medications that come in dispersible form, but again, you will lose the slow release benefit there.

ReQuip XL as far as I know does not come in crushable/dispersible forms. You could ask your consultant's advice on whether Neupro patches might be a viable alternative. Or, I notice you are on only 4mg which is quite a low dose. One consideration might be that if you were on a higher dose it might help the swallowing/motility problem more and so be easier to swallow your medication.

If the goitre is interfering with your swallowing in a significant way, again, you may wish to get medical advice on how the goitre might be reduced or removed. Similarly, with the reflux problems, there are medications (often in liquid form) that might assist you at night and therefore avoid some of the problems around taking your medication with water. You may wish to get some advice on how to lie in bed too to minimise reflux problems – for example lying propped up.

For more direct advice on ways to tackle the swallowing problem it would be worth getting an appointment with your speech and language therapist. She will be able to carry out a proper assessment of swallowing status and on the basis of that recommend techniques to improve swallowing. Many of the techniques to facilitate swallowing are easy to implement with a bit of supervised practice. She may also be able to work with you and the dietitian to work out ways of swallowing your tablets along with specially prepared foodstuffs/drinks.

I am aware this response doesn't solve your problems, but I hope I have pointed in the right direction to get the advice and information required to sort them out.

grey: I too suffer from this. Is it PD related? Tiredness and nervousness can make it worse.

Also, I occasionally have problems with common words. An example could be I write (or say) the previous sentence then the word 'with' troubles me. What does it mean? Doubts such as these over such a well-used word seem strange!

Unfortunately both slowness of transit of food through the oesophagus and difficulties swallowing are common in Parkinson's.

Parkinson's used to be thought of as a disorder of movement control. Changes with communication were thought to relate just to changes in ability to control movements of the vocal cords, tongue, lips, etc.

It is now recognised that Parkinson's affects many more aspects of how the body works that have nothing to do directly with movement disorder.

One such group of changes is to how we understand language (words, sentences), how we retrieve words we need to express things and put those words into sentences. Parkinson's can also affect vision and through this some people find their reading is impaired.

So, if you are having trouble finding just the word you need when you need it or how to express an idea/thought that previously you would have had no problems with, then it may well relate to changes in the processes that go on in the brain that affect language.

Why there should be problems with words like 'with'? Without carrying out specific assessments a clearcut answer is difficult, but here are some possibilities: 'with' on its own is often without clear meaning – it does not relate to something concrete like a thing (box, mountain), action (washing, seeing) or familiar concept (honesty, sadness). Abstract words like 'with' can be more difficult to define or more susceptible to disruption for people with Parkinson's. 'With' has some definite or clearly definable meanings – accompanying – meat with gravy, milk with my tea.

But some meanings are a bit more difficult to pin down and are only clear when one looks at the meaning of the wider context – hit it with the hammer, what with all the bad weather we had, what’s with all the shouting, with 3 days already past – so your difficulty may relate to pinning down more elusive meanings of 'with' and other words like it, particularly if you stare at the word on its own separated from the more general context.

A further possibility is that it is an example of difficulty working out the grammar of a sentence. That is a problem for some people with Parkinson's. The problem isn’t specifically with 'with' or similar words, it's more part of working out the whole sentence. Consider these sentences: The cat the dog chased died; Mary gave the child the dog bit a plaster; Until the police arrest the drug dealers control the streets; Is the man you met the mayor with tall?

All the words are familiar but the grammar is tricky, it’s not the meaning of any one word, but how the different words relate to each other. Again, some of the changes to attention, short term memory and similar that affect some people with Parkinson's may lie behind problems deciphering such sentences.

I hope that gives you a few ideas to ponder.

Anonymous from the website: I've always noticed a change in my speech although others say they don't notice it . Are there any simple exercises to prevent deterioration in speech?

As I have noted in several other replies, changes to speech are often the first signs to someone that things are not as they should be. They don’t have to be major alterations – it may be noticeable from just the sensation that the tongue and lips feel stiffer, or that one has to pay closer attention to make sure one remains intelligible or one can’t speak as fluently or fast as one could without stumbling over sounds. These kinds of changes may be obvious only to the individual to start with. So, your experience is common enough.

To answer your question though I need to clear up what you mean by speech here. Do you mean your voice, how loud you speak and so on? Or, do you mean your pronunciation, your sounds are becoming slurred or awkward?

If you mean your voice, then take a look at some of the other replies I have posted. You will see various tips on voice – about monitoring loudness, 'resetting' or 'rescaling' your internal monitor to make sure the brain delivers sufficient effort into breathing and voice control, getting the sense of what it feels like to speak at a volume that listeners say is fine. Make an appointment with your local speech and language therapist who will be able to carry out a thorough assessment and help you with exercises to carry out if necessary. She may even recommend a course of intensive treatment to really get the new habits required to maintain clear speech in Parkinson's absolutely fixed.

If what you mean by speech is making sounds like 'p' and 't' and 'j', then slightly different exercises/approaches might be necessary. Maximising effort, overemphasising speech to a degree that feels unnatural in order to 'recalibrate' the brain's control of movements might help, or doing that especially in combination with the breathing and voice exercises mentioned in other replies. Slowing your rate of speech down might help too, especially if combined with attention to effort in making the movements of your tongue and lips. Making sure unstressed bits of words don't get squeezed out can help – so make sure 'support' doesn’t sound like 'sport', or 'helicopter' like 'helipter' or similar.

I would recommend you get in touch with your local speech therapist. She will be able to do the appropriate assessments to distinguish if the problem lies more with the voice box/vocal cords or more with movements of the tongue and lips, etc or more generally with sense of effort in speaking. She will also be able to practise with you various techniques to help delay the deterioration in your speaking. And, even if therapy is only for a brief period to start with, she should keep you on review and be there to contact whenever you need further support and advice.

You mention you notice changes whilst others don’t remark on any deterioration. Couple of points to make there. Firstly, as I said, it often happens in conditions like Parkinson's that the individual can feel changes to speech, maintaining intelligible speech and so forth long before the changes are apparent to other folk.

A good parallel here is when we have been to the dentist and had the mouth numbed. We are convinced other folk think a) our face is terribly contorted; b) we sound like we're drunk or something, when in fact neither is true - until we tell them they have no idea we have been to the dentist, it's just the altered sensation we have in our mouths, the added effort of trying to speak with the changes. The same is true in Parkinson's for some people – they feel the alterations more acutely than others hear or see them. So, it may really not be too big of a problem generally at present. But nevertheless good idea to get linked into the speech language therapy clinic so they can keep a close eye on it; try out the tips above about maintaining and improving voice – the earlier one gets into these habits the better.

Bob from the website:  Is the biting of the tongue and lining of the mouth have anything to do with my PD?

Not directly. But indirectly it could well be linked. Normally we manage not to bite our tongues because the brain detects the slightest hint of it coming into contact with the teeth and it moves it out the way very fast. Also, most of the time we do things with our tongues that are quite tightly programmed by the brain – where it moves, what it does is fairly closely specified and the movement 'programmes'/ 'commands' are designed to keep it out the way of the teeth. The same goes for the inside of our cheeks – the brain keeps them taut enough to stay out the way.

In Parkinson's several things happen to movement control that can affect this: the brain doesn't pick up so easily that the tongue is about to be bitten (it is slower to detect/sense pain) and is slower at moving it out the way when it does realise it is in danger of being bitten. Movements might be more rigid/less accurate, so even when it does try and move out the way of the teeth, it doesn’t move out the way properly.

All this is partly affected too by attention. Attention in Parkinson's is impaired and especially if one is having to concentrate on more than one thing at once. In eating one has to focus on chewing, keeping food in the mouth, making sure one swallows at the right time and strongly enough, etc. No wonder then sometimes that the brain might find it difficult to also be aware of where the tongue/cheeks is and move it out the way.

Another complicating problem is that in Parkinson's the brain finds it more difficult to switch between movements, so something complex like chewing where there is a lot of switching between different kinds of movements - manipulating food round the mouth and so on – can increase the likelihood of biting your cheek or tongue.

I'm not sure how common the problem of biting one's tongue is. I am sure other readers would be able to give us a view on whether they experience this problem and tips on how they avoid it.

One further thought: Do you think how often you bite your tongue is any more frequent than before you had Parkinson's? Sometimes one has the perception that things are more frequent than they used to be, but that is not always the case – one might simply be more aware of it happening or one attributes it to something new about the Parkinson's. Are there any particular times of the day, and particular activities where it is more likely to happen? If so, that will give you some clues about what may be causing it if it is more frequent and also what kinds of things you might do to be attending to avoiding it.

Lily: Can regular singing help to prevent speech and swallowing problems?

There have been several small studies looking into this. It is highly probable that it does, certainly for speech/voice; the case for swallowing is not quite so clear cut.

The reason it may well help is that in singing one is training breathing and breathing coordination, breathing deeper, controlling expiration. The same skills are vital for successful speech. It also practices loudness control and loudness variation, important prerequisites for speech. Naturally it trains intonation, melody, another vital ingredient for intelligible speech.

And of course it is good exercise generally, is great fun, can be very relaxing and there is a social benefit too – all good antidotes for fatigue, low mood and the like which can contribute to poor speech as well.

There are reports from people with speech disorders similar to those experienced by people with Parkinson's which also support the notion of music and singing as beneficial for speech/voice.

You mention 'regular' singing. Obviously depends how regular this is. I am sure this is one of the factors being researched – does it have to be every day, once a week, for 10 minutes, for half an hour, or whatever to bring benefits. We still don't know. But if you enjoy it, it is not becoming an added factor in fatigue, etc, then I would definitely give it a try.

You asked does it 'prevent' problems arising. Again, we don’t have the information available to be able to give a definite answer there. From related fields (physical exercise, other kinds of voice training) the indications are that it may slow the onset of disabling problems with speech and voice. It probably won’t prevent them in the long term, but in the shorter term is likely to be helpful.

Jeanine: Although still in stage 1 and only taking 3mg Requip x 3, I too experience difficulty swallowing tablets and capsules (for a year or so now). I haven't really had any problems with food or drink. Why would I have a problem with the former but not the latter? Is it a mental thing?

The likely factors that spring to mind are:

i) Swallowing food is usually a step in swallowing that follows a lengthy preparatory chewing action which primes the next stages in swallowing – when it is just a tablet, this phase is usually absent and so triggering the swallow reflex may be just that bit more difficult.

ii) When we eat we usually form boluses (the mashed up ball of food in your mouth ready for swallowing) larger than wee tablets. This too helps to trigger the swallow reflex and most likely does so more strongly than a tablet.

iii) Even though tablets/capsules are designed to be shiny and slip easily down the throat they can be dry and don't necessarily slip down that easily. Hence why it usually helps to take with a drink of water. The problem there though when there are changes to swallowing in Parkinson's is that the swallowing mechanism has to cope with two quite different consistencies – liquid and solid. This is especially difficult in dysphagia (swallowing disorder) and can often lead to choking/coughing and spluttering.

iv) Is it a mental thing? There may be an element of that – if we have swallowing difficulties and have had some episodes of coughing on swallowing things going down the wrong way, then we may be a bit more wary when it comes to eating and drinking, there may be a fear of choking there. In turn this may cause one to tense up a bit and in that way exacerbate the swallowing difficulty.

v) You report no difficulties with food/drink. That's encouraging. Studies suggest the swallowing mechanism is altered in Parkinson's right from the start. Thankfully it may be a long time before it is severe enough to bring about disabling changes to eating and drinking. There may be subtle changes you are not consciously aware of – how long it takes to eat, needing to cut things up more/ mash things, chew longer, take repeated swallows, avoid certain foods and so on. This works OK for foods we are familiar with, but for novel things - like swallowing tablets which involves patterns of preparing to swallow and swallowing different to day to day swallowing – it may be just that bit more difficult and therefore problematic

Some ways round this that people have found successful (depends very much on individual circumstances, can’t guarantee these will work for you) to get round the tablet problem:

Taking with a liquid and if not water, etc then custard or yoghurt or something similar.
Take along with other food. Place tablet ready at back of mouth and then concentrate, focus on doing a big, forceful swallow. Have someone say 'ready steady GO'.

Jeanine: I don't think I could shout to save my life! Looking back, my earliest symptoms affected my voice. Over a period of about 4 years, I've gradually lost volume to the point where I now notice people are often asking me to repeat things. Sadly I've completety lost my singing voice too. Is there anything I can do for myself at home to improve this situation?

Yes, there are a few things you could try. As you might have noticed in some of the other replies I have given, a main reason for quiet voice in Parkinson's is not that the muscles are significantly weaker, the main problem is that the brain doesn't set the 'energy' or 'effort' levels high enough to carry out activities in the normal fashion. Coupled with this is the problem of monitoring, checking, being aware about whether one is putting the right amount of force into actions – in Parkinson's this can be impaired, and so one thinks one is shouting, pressing hard or whatever, but in actual fact one isn't.

So a first step is to become aware of the amount of effort put into speaking and realise that even though you might think you are shouting, it may not seem like it to listeners. Try this with your family members and get the sense of what it feels like regarding effort for speech when they say the volume is right. Then aim to try and keep up that level of effort in all situations. Not easy, because as soon as we concentrate on something else it is difficult to attend to your voice effort at the same time – so it takes a lot of intensive practice.

Make sure you don’t start speaking until you have taken in sufficient breath. Breath is the driving force for voice, so too little air and you have too little voice. Make sure that breathing and speech are co-ordinated – start speaking as soon as you start breathing out, don’t wait till a lot of air has escaped and don't try and keep speaking when you don't have enough air.

So, good breath in always and try and speak louder than seems reasonable all the time. You don't have to shout – in fact shouting is not what you should do. Think of star actors who project their voice by making maximum use of breathing in, overemphasising movements of the jaw, tongue, lips, rather than overexerting.

A good tip would be to fix up an appointment with your local speech and language therapist, because she will be able to give you a lot more tips, will be able to demonstrate techniques to you, will be able to advise you on exactly how to do the exercises, and she may well be able to lend you instruments that help you monitor loudness, pitch range and so on.

She may also be able to offer you intensive treatment focused on maximising voice loudness, co-ordinating with breathing, monitoring yourself. One such programme that does this is the Lee Silverman Voice Treatment, but it's not the only one that centres around these vital ingredients.

Anonymous from the website: My wife is in the advanced stages of Parkinson's and her swallowing problems have got worse. She has great trouble swallowing anything at all now. Could speech and language therapy still help her, or is it unlikely that it would make much difference now?

Difficulties swallowing can be amongst the most distressing aspects of Parkinson's, especially in the later stages. It is frightening and unpleasant for the person with Parkinson's feeling that they are choking or drowning, that every swallow is followed by coughing and pain. But distressing too for the carer to see this, to also be frightened that something terrible is happening and feel helpless in the face of it all.

Without meeting your wife it is difficult to state categorically what speech and language therapy (or anyone else) might be able to do about the swallowing. Speech and language therapists should be able to assist in supporting people with swallowing problems , even late on in Parkinson's.

A good place to start would be to get a careful and thorough assessment done by the speech and language therapist. This may involve so-called videofluorographic/scopic x-ray which helps one see if the coughing and spluttering is due to food and drink going down into the airways (dangerous) or whether it is more just pooling of foodstuffs around the top of the airway (something to definitely attend to but not so immediately threatening). Your speech and language therapist or consultant should be able to book this if it is advised.

On the basis of a detailed assessment the speech and language therapist will then be able to decide what the best course of action is. On the one hand it might be trying treatments that involve modifying the way on which one swallows to make it more safe or using different kinds of cues to make sure residual capability in swallowing is harnessed to the full. She is also likely to work with the dietitian to give your wife food that is the easiest/safest texture for swallowing but at the same time maintains nutritional intake. She may recommend different ways of preparing and taking food – eg pureeing, little and often.

If there are chest problems (which can be linked to swallowing problems) then you may need to seek medical advice from the Parkinson's nurse specialist or doctor. They will want to look at weight too – whether your wife is managing to take in sufficient nourishment to maintain a healthy weight.

If the various options for helping swallowing through posture and attention to effort in swallowing and modifying food texture all prove unsuccessful medical advice may be to try nasogastric feeding (a tube is passed through the nose and down the food pipe directly into the stomach). Nasogastirc feeding is not a good long-term solution. If the problem is very serious then a PEG tube is fitted. This is a feeding tube that goes from the tummy directly into the stomach. You need an operation to insert it.

The decision on that will not be the speech and language therapist’s, or certainly not her on her own. It will be a multi-way discussion between your wife, yourself, the medical staff and maybe the speech therapist too. There are pluses and minuses in having a PEG tube fitted. All the points, the good ones and the less favourable ones will be put on the table for discussion before going ahead.

In short the answer to your question is that yes speech and language therapy may be able to help swallowing in later Parkinson's. A prerequisite though is a thorough expert assessment of swallowing status, to establish the kind of help that is most suitable and to involve the - people who will be in the best position to provide support.

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