In this guest blog, Annette shares her story of living with dysarthria after stroke and Claire Mitchell (@ReaDySpeech), Speech & Language Therapist and author of a newly updated Cochrane review on dysarthria, explains the findings.
Two and a half year check-up today. I’m in good health. I should be feeling great. BUT, any mention of my dysarthria had me reaching for the tissues. I’ve finally got my head round my wobbly post-stroke body. I can’t get my head around my wobbly speech.
A stroke 2 years ago left me with dysarthria (sounding as though I’ve drunk a few pints too many; reduced intelligibility; difficulty forming words; an inability to increase volume and pace). I am a 64 year old female. Pre-stroke, a bit of a social butterfly … and a talker! I am a changed person since developing dysarthria. I prefer being alone and in familiar places.
Dysarthria’s effects are many, and profound. Why draw attention to my speech difficulties? If I stay home and keep quiet I can pretend that I’m ‘normal’. I hate my new voice. It’s not mine. Why put myself through the embarrassment of watching people straining to hear or understand me? Why put myself through the mental fatigue of constantly having to repeat myself?
But friends tell me I’m lucky to be affected so ‘mildly’. Mildly??! Yes, my speech could be worse, even non-existent, but the emotional and psychological effects of dysarthria make it impossible to consider myself ‘lucky’.
‘Lucky’ is a life without dysarthria.
I try to avoid the mental and physical effort required to form words – my mouth dries; my throat tightens; my tongue tires (weird). I want to go home. I want to be silent. That isn’t me. Well, it isn’t the ‘me’ of 2 years ago…. I force myself to socialise but any excuse to escape and I’m off. I even avoid engaging my nearest and dearest in conversation. Tiring, upsetting and frustrating, the reality of dysarthria smacks me in the mouth every time I attempt speech. I can be in bits with the effect dysarthria has had on my life.
As a divorcee bringing up a child on my own I was used to standing on my own two feet. Now I feel vulnerable because of the restricted communication which my dysarthric speech places on me. I rely on other’s patience to hear me out. In my experience people generally (wrongly) associate dysarthria with low or impaired intellect because it isn’t ‘normal’.
Adapting to the physical restrictions of stroke was painfully slow but the long term emotional effects of my speech problems seem to get worse, not better. I seem unable to accept the change. I want further improvement but I don’t know if that’s possible or how to achieve it. I had my standard 6 weeks of speech therapy but I want more, I would be willing to try anything. I avoid interactions… misunderstandings affect me emotionally. I’m a tough old bird but I could cry when I have to repeatedly repeat myself. I just withdraw.
Before my stroke I occasionally worked as a TV extra. The agency said I could return whenever I felt ready. Physically, I’ve been ready for months but my confidence to speak has evaporated. Others may view my dysarthria as ‘mild’ but its effects have been (and still are) devastating and stifling. Dysarthria has a stranglehold on every aspect of my life. I’ve always worked and been financially independent but now feel this opportunity is no longer open to me.
Dysarthria is imprisoning, limiting my life to the people and places that I know. I would no more engage in a new friendship or relationship than fly. Dysarthria has robbed me of the confidence to try.
Why put my head above the parapet and riskA way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent. being shot?
Stick with what I know.
It’s also uncharacteristic (of me).
Dysarthria has created a psychological barrier which I am struggling to get over. Dysarthria has robbed me of confidence. I now prefer to avoid speaking. I do my best but it’s exhausting. I just want to go home and be alone and quiet.
What’s the evidence for dysarthria treatment after stroke or non-progressive brain injury?
Annette’s story is a powerful reminder for clinicians and researchers of the impact dysarthria can have and highlights the importance of rehabilitation research.
In this updated Cochrane systematic review we wanted to find out if there is evidence that any dysarthria treatments work. We found surprisingly few trialsClinical trials are research studies involving people who use healthcare services. They often compare a new or different treatment with the best treatment currently available. This is to test whether the new or different treatment is safe, effective and any better than what is currently used. No matter how promising a new treatment may appear during tests in a laboratory, it must go through clinical trials before its benefits and risks can really be known. (5) with small numbers of patients (234) and almost all participants were post-stroke.
None of the included studies had sufficient numbers to answer the question about whether dysarthria interventionA treatment, procedure or programme of health care that has the potential to change the course of events of a healthcare condition. Examples include a drug, surgery, exercise or counselling. works. We still don’t know the benefits or risks of intervention and it is important that people with dysarthria continue to receive rehabilitation according to clinical guidelines. Our final conclusion for this review is that there have been no definitive trials focussed solely on dysarthria.
What more do we need to do?
Research into dysarthria has clearly been neglected over the years and this seems inadequate when considering the impact on people such as Annette. This review shows we urgently need better quality trials with bigger numbers of patients to find out more about dysarthria treatments and consider patients’ views on interventions and how we measure change.
What does Annette think about the research?
“In a strange way it was heartening to discover that so little research has been done on dysarthria. It gave me hope that with further research people like me might move on with a useful and meaningful life. It is not saying nothing works it is saying we don’t yet know what works best for people and we need to find out.
I feel that dysarthria has severely restricted my recovery. Ongoing research is required into something which affects recovery so profoundly. Even slight improvements would improve the quality of my life drastically through increased confidence and self-belief.”
The lack of evidence around dysarthria treatmentSomething done with the aim of improving health or relieving suffering. For example, medicines, surgery, psychological and physical therapies, diet and exercise changes. after stroke prompted Claire to look at how treatment could be developed. She is Chief investigator of the ReaDySpeech feasibility studyAn investigation of a healthcare problem. There are different types of studies used to answer research questions, for example randomised controlled trials or observational studies. which is looking at whether a computer programme can be used in a randomisedRandomization is the process of randomly dividing into groups the people taking part in a trial. One group (the intervention group) will be given the intervention being tested (for example a drug, surgery, or exercise) and compared with a group which does not receive the intervention (the control group). controlled, multi-centre trialA trial conducted at several geographical sites. Trials are sometimes conducted among several collaborating institutions, rather than at a single institution - particularly when very large numbers of participants are needed. for dysarthria treatment after stroke. Annette is currently acting as a research advisor for the ReaDySpeech study and was asked to comment on the Cochrane systematic review from a patient perspective.
Mitchell C, Bowen A, Tyson S, Butterfint Z, Conroy P. Interventions for dysarthria due to stroke and other adult-acquired, non-progressive brain injury. Cochrane Database of Systematic ReviewsIn systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. 2017, Issue 1. Art. No.: CD002088. DOI: 10.1002/14651858.CD002088.pub3.
Claire Mitchell is funded by a National Institute for Health Research, Doctoral Research Fellowship (DRF-2014-07-043), during the conduct of the study
[…] Living with dysarthria – Annette’s story […]
Hi As a sufferer for 18 months I too have experienced the isolation the exhaustion and the disintegration of the vocal word and conversation. But I force myself to attempt all things. Telephone conversation I start “I have a speech impediment and there my be long pauses or repeated words” then I blunder through Yes totally exhausted at the end of a two to three minute conversation but I achieved and it is that phrase that releasees a lot of the pre-call stress and puts the person on the other end at ease.
I have had neurological set backs and each time speech has been affected and fallen and as the majority know it exhausting and demoralising work finding new ways to express yourself and make people understand your intelligence has not diminished only communications (Especially non-Neurologically trained Doctors) But endeavour is the only way we can improve our personnel lot if we do not try we do not know what (all be it various new routes )can be achieved.
This message is by courtesy of Spell checker I tool I used to avoid
Such sound advice, excellent strategies. I agree with everything you say. Determination and perseverance claim the day, not easy when it makes one so exhausted but accepting that there cab be better days helped me to keep going. I live alone. I think talking to myself helps too! My speech has definitely improved over time.
Manchester University are currently asking people with dysarthria to complete a simple survey as part of a research project with the aim of improving treatment of dysarthria.
The patient’s perspective is integral to the outcome if we are to improve.
Here is the link to the survey. ….https://delphimanager.liv.ac.uk/COSSPEECH/Delphi.
You help will be really appreciated.
All the best. Annette
I had a stroke in 2014 which left with dysarthria. I had speech therapy (6 weeks) in 2018 and was doing pretty good at being able to slow down my speech but I still had problems pronouncing some words. I was able to make myself understood. Then along came the COVID pandemic. I live alone and had no one to talk to. I always avoided talking on the phone because your words become muffled and sometimes misinterpreted. So I became more and more isolated and I lost the ability to make myself understood. Now I don’t talk in social situations with family and close friends because my speech is unintelligible. I can communicate by email. I also find myself coughing when I eat. I can only hope that I get my ability to talk back.
Hello Loretta, I can empathise with all you say. I resorted to talking to myself and reading aloud during lockdown. It is indescribably frustrating to lose the ability to speak coherently when it has been so hard won. I hope your speech confidence and ability returns. We need more research into the long term effects and treatment of dysarthria. If further speech therapy is available to you do you think it might help?
If you are in the UK, The Stroke Association fund research and may be able to point you to organisations/research projects.
Good luck, and please keep talking, even if it is only to yourself.
i had a stroke in March of 2021. I am still suffering from dysarthria after 22 months. i just wanted to ask you if you were able to get, at least, closer to your way of talking before your stroke. I used to be a teacher and it is so hard not being able continue because of my speech. I have researched a lot to see if anyone had any full recovery after dysarthria but couldn’t find anything. This is the only blog where i get to read other people’s journey. I think a lot more research needs to be done on this. I am in America and i feel like i still haven’t found any groups about it.
I’m afraid you’ve asked the ‘how long is a piece of string?’ question.
In my experience, everyone is affected so differently and progresses differently too.
I have no research evidence to support this theory but for me I feel that determination and a refusal to accept the dysarthria has been my best therapy. A belief that improvement has to be possible seems to have grown legs.
My speech has improved hugely over time, but I stress ‘over time’. Patience has to find a place alongside frustration..
I now understand what affects my speech most… I know tiredness and over-use will affect the quality of my speech .
Physically, sipping water or chewing gum to keep my mouth lubricated aids my ability to form words.
Plenty of sleep helps with all my stroke effects.
Acceptance that there will be good days, bad days, better days has helped me psychologically.
Friends say I sound normal and I think I continue to improve.
I’m sure you practice, practice, practice Mariam.
It can’t do any harm and, fingers crossed, it might do a lot of good for you too.
Keep on keeping on!
My very best wishes
I suffer with dysarthria after my stroke 7 months ago. It is so frustrating to talk because it makes me tired when I talk. I pray everyday that my speech comes back. It does feel like someone else is talking when I talk. I just wanted to know if speech ever gets better or does it ever come close to the old/original speech? I used to be a teacher and can’t teach right now because I can’t talk for a long time straight. It’s is so frustrating.
So sorry to read this. You might find the information on the NHS page helpful: https://www.nhs.uk/conditions/dysarthria/ It includes some communication tips for people with dysarthria but also outlines possible treatment options. It suggests that individuals may wish to see a local speech and language therapist if you’re interested in having an assessment. Speech and language therapists may work alongside other health professionals to try to improve and maximise one’s ability to talk, but they can also help you find different ways of communicating, and will assist one in adapting to their new situation. I hope this is a little helpful. All the best, Selena [Editor]
I know how frustrating it is because I too have dysarthria. And yes, it does get better. Your Speech is different because you are always thinking about how you talk where before your stroke you never thought about talking I found it helpful to tape my speech to monitor my progress. I also found ways to work around my speech
My speech got better but I also got somewhat used to my new speech
I am thankful to you for sharing your journey and experience about dysarthria. I have just started my degree of Bachelors of Speech and language Pathology. After reading your story I have came to learn about another aspect of dysarthria and its effects on patients. I am glad I read your story and it breaks my heart how much pain and mental stress dysarthric patients have to experience. I would like to know more about your story, your treatment and how you manage to like with dysarthria. I hope you get through this soon. More power to you xx
My apologies Rymsha.
I haven’t looked at the blog comments in ages.
I’m so pleased you found the blog of use and thank you for taking an interest in the condition.
I am miles better thank you.
Good Luck with your studies.
I am only 41 and experienced a stroke a little over a week ago. I was the social peak in any room I walked into, and my favorite hobby was karaoke. The stroke has ripped me of that. I cannot keep rhythm or even get a sentence out and not be exhausted and still misunderstood. I really felt in this story when she said keeping quiet made her feel normal. When I am by myself and not having to talk, I feel so normal. I will get what needs to be said in my head and grow so confident of what it will sound like when it leaves my mouth. Then, it pours out like a lost puzzle and the lack of confidence at that point strangles it to oblivion. I appreciate not feeling alone. Thank you!
Oh Crystal, I wish I could show you the future. My world fell apart too and there is so much to get used to – that alone is exhausting. It is nearly 7 years now since my stroke. I was never blessed with either patience or tolerance but all I can say is … keep at it, don’t give up, your best is ALWAYS good enough. And on the days when you do feel like giving up, or feel as though you just can’t be bothered, allow yourself to feel that way because tomorrow is another day. I wish you a full recovery and don’t give up on the speech. Remember you’re still in shock, it’s early days and that each day is a triumph. You’re not alone, I’ll be thinking of you and willing you along. My very best wishes, Annette x
I am sorry for such a late reply! Two years, that must be a record but I’ve only just seen your comment.
I hope your speech has improved.
I found a stroke choir in Manchester which helped a lot with my confidence… The Stroke Association may be able to help you find one local to you.
I’m now 8 years post-stroke. I have learnt how to handle any residual speech difficulties and have certain strategies that help too.
I am more accepting of the ‘new me’. If I have a ‘talking’ day, I know I will need a quiet day tomorrow – that sort of thing. Talking can exhaust me and I have developed the confidence to say I have talked enough whereas I used to struggle through to the point of gobbledy gook….
I am happy and content now that I know my own body.
I wish you all the best and keep on keeping on talking.
thanks for sharing you experience with dysarthria. I can relate to it exactly. I had a stroke two years ago at the age of 65. it left me with left side psrslysis (I am dominant left handed) and worst of all dysarthria. I have tried to rebuild my life and can walk with a 4prong stick and am back to driving again. Apart from needing a carer to dress me every morning I am fairly independent. But I am constantly depressed by dysarthria. I have worked out some common sense strategies to make myself understood in simple situations but it drives me mad having to constantly repeat myself and having simple words misinterpreted (eg “lift” is hesrd as “leaf”).. I Tty to avoid social situations and have to pay someone to make phone calls for me. I feel dysarthria is neglected and not taken seriously by professionals. All the emphasis seems to be on asphasia, which of course would be a terrible condition. I would give anything to be able to speak naturally again but all the professionals tell me there is no hope of this ever happening. I would be interested to hear you experience after you put this post. Have you made any improvement ?
Hello Peter, my brother from another mother! I just re-read my blog so that I can give you a fair comparison between then and now. Because improvements are slight and gradual it would be easy not to notice them. In answer to your question I am pleased to say, yes, I have improved, and continue to do so. Like you, I consider dysarthria to be the most impactful of my stroke effects. Would you agree that one can find a way to work with the physical effects, frustrating though that is, but the hidden emotional and psychological effects of dysarthria are more difficult to manage? I want to scream at ‘professional’ opinion. – well I would if I could! How dare they rob us of hope? We can do that ourselves. Yes, they are probably right, we may never speak normally again, but unless they are able to give us ongoing support in our quest for improved speech, I wish they would keep their opinions to themselves. Sadly, it would appear that dysarthria is the poor relation to aphasia despite it being equally prevalent, but with amazing people like Dr Claire Mitchell on our side, let’s hope things will change and our slurring becomes ‘sexy’ in therapy circles I lost the ability to sing when I had the stroke, I couldn’t raise a note. 5 years ( yes 5 years!) later, out of the blue I began to sing – badly – but it’ll do for me. I would say they can stick that in their professional-opinion pipe and smoke it. In the defence of the non-dysarthric, the brain is so complex, I think they are brave to offer any opinion at all. I’ve heard of people who cannot speak at all after stroke, but can sing. The brain is weird, isn’t it? Since writing the blog, I have found it helpful to sit down and question why my speech may be ‘off’ on a particular day. (Don’t get me wrong, it’s always ‘off’ but sometimes its less ‘off’ than others). I’ve developed a confidence to view the dysarthria as a difficulty to be overcome day to day rather than feeling that an off day is a failure. It’s not the end of the world anymore. I’ve stopped beating myself up about it even though it still scares the bejabers out of me. I’ve developed strategies that don’t always suit others, but tough, I’ve become assertive about my time. I know my speech is better in the morning so I tend to insist on socialising in the day and refuse evening outings except non-speaking ones. It’s a shame but, there it is. I suppose we all develop our own strategies. You sound like a man after my own heart, Peter. We should give ourselves quiet credit for what we’ve achieved in adversity. We are the ones climbing a mountain on rollerskates whilst the others use crampons. I hope you are heartened that improvement is possible, even if it’s not as fast or consistent as we may want it to be. That said, feel free to strangle anyone who says “things could be worse”. Best wishes Annette
Thanks for your reply Annette. I’m glad you have made some improvement and seem to have come to terms with your dysarthria. Full credit to you for helping with dysarthria research !
I think I have made a little progress since day one. Apparently I used to stutter in the early weeks but fortunately that has disappeared. I know the best strategy to improve intelligibility is to speak slowly, but that is the hardest thing to do because my speech muscles can’t keep up with my brain. Also, when asked to repeat I tend to raise my voice which only worsens the situation. Very natural but hard to control. I am probably not as badly affected by dysarthria because unlike you, I am an introvert. But even us introverts like to talk and joke sometimes ! In desperation I recently travelled to the US for stem cell therapy. It was quite expensive and a twenty hour flight from Melbourne Australia. The results so far have been underwhelming but at least I have some much needed hope. Next week I will be seeing a new speech pathologist who apparently has experience with dysarthria. Fingers crossed !
Hello again Peter, I was wondering if the stem cell therapy has given any improvement over time? I hope you are well, Best wishes, Annette
Good Morning! I had my first Speech Therapy session yesterday. So weird to be told to keep shoulders down and breathe more deeply when only a few years ago I was teaching mindfulness and yoga to sixth form boys amongst other subjects. I have talked all my life and relied on speech for my career as a teacher and manager. Any opportunity to motivate with a word was forefront in my mind. But now under investigation I don’t worry about my iffy voice too much. Maybe it was being able to survive in Italy without the language and sympatico. But obviously I will do the exercises and improve my Italian but sometimes adapting and change is empowering. Potevo essero io. 💪🤩
Hi Bernie, how good to read your comment. No idea what potevo essero io means, I only speak Yorkshire, but it sounds good!
I have ‘mild’ dysarthria and had a stroke about 3 years ago. Everything here rings so true and is very similar to how I feel. What is also frustrating, proper conversations with people (family, friends, etc) is very difficult.
Ah Joe, thank you for commenting on my blog and oh, how I empathise with you. How can we be so tongue-tied when in our heads we’re articulate and fluent? Very frustrating. Very tiring too, struggling to control a tongue too big for the mouth. I have just seen a tweet by someone who said one doesn’t recover from stroke (because some changes aren’t recoverable), but one learns to re-invent oneself. We, the ‘Re-invented’, really are the only ones who know what dysarthria is like, though it can’t be a barrel of laughs for the listener either!. I hope my blog may be of use to those around us to offer an explanation of how it is when words fail us. In the meantime, let’s keep talking, We can only hope it’s music to the ears of those who have stayed with us through the worst . All the best, Annette
Thanks Annette. Apart this blog, I’m surprised at how little there is about ‘living with dysarthria’ on the web.
This blessed me to read … two years post cerebellar stroke and still dealing with dysarthria… would love to talk with you sometime about this.
Hi Barbara, I just wrote a long reply which I think I’ve somehow managed to delete! I shall make another attempt when I work out how to!
Hi Barbara, Thank you for your comment. In a perverse sort of way, it is heartening to know others know what it is to experience dysarthria. I still feel it’s the most limiting of my difficulties. I still want to wake up tomorrow all-singing, all-dancing but until then I work on accepting myself and if people don’t concentrate when I speak, or they mishear, then I now believe that’s their problem whereas I used to think it was my fault.( Isn’t it frustrating when you have to repeat yourself when you know it’s the listener who isn’t listening?! I have gradually developed the confidence to exercise my right NOT to repeat myself). I still hide away on occasion, but now I feel it’s on my terms. I used to dismiss the small improvements, especially when tiredness rendered me almost speechless and I felt I was going backwards, but now I see it as a signal to rest rather than a signal to give up. I’ve turned a corner. Whilst I expect dysarthria will always be part of my life, my life is no longer ruled by it. My very best wishes for your continued improvement. Annette
I suffer with dysarthria since my stroke. It is worse than losing some mobility in my right arm (because you learn to adapt with the other arm). Although the stroke team were good with physiotherapists and other support there was little they could do apart from reading a book aloud every day and various vocal exercises only saying that it will eventually come
back. It could take 3 months or years.
Frustrating is an understatement isn’t it, Sadat?! Celebrate the smallest of achievements because one day you’ll see how far you’ve come. All through your own efforts.. Keep on keeping on and don’t beat yourself up if sometimes it feels as though you’re going nowhere. When I look back at how far I’ve come I can’t believe it because it never felt as though I was improving. My very best wishes for your recovery. Annette
Fantastic piece Annette! Very powerful
This is a much-needed first person account of a disability that can be very demoralising for the patient.