Sorry, what did you say? Living with dysarthria (unclear speech) after stroke

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. 

Annette’s story

Annette has dysarthria

Annette: “I want to be silent. That isn’t me.”

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.

the reality of dysarthria smacks me in the mouth every time I attempt speech

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 risk being shot?

Stick with what I know.

It’s safer.

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 trials (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 intervention 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?

we don’t yet know what works best for people and we need to find out

“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 treatment after stroke prompted Claire to look at how treatment could be developed. She is Chief investigator of the ReaDySpeech feasibility study which is looking at whether a computer programme can be used in a randomised controlled, multi-centre trial 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.

Links:

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 Reviews 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


Claire Mitchell

About Claire Mitchell

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Claire Mitchell is a Speech and Language Therapist and an NIHR Doctoral Research Fellow based at the University of Manchester, Manchester Academic Health Science Centre. Claire has worked as a Speech and Language Therapist in the NHS for twenty years, specialising in neuro-rehabilitation. Claire Mitchell is currently chief investigator of the ‘ReaDySpeech for people with dysarthria after stroke: a feasibility study’ which is a randomised controlled trial being carried out as a multi-centre trial in the North West of England. She is interested in finding out whether we can use technology to support speech rehabilitation following stroke and if it benefits patients.

14 Comments on this post

  1. Avatar

    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. 💪🤩

    Bernie O'Leary / Reply
  2. Avatar

    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.

    joe bugler / Reply
    • Avatar

      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

      Annette Dancer / (in reply to joe bugler) Reply
      • Avatar

        Thanks Annette. Apart this blog, I’m surprised at how little there is about ‘living with dysarthria’ on the web.

        Joe Bugler / (in reply to Annette Dancer) Reply
  3. […] one individual with dysarthria said: “Dysarthria is imprisoning, limiting my life to the people and places that I know. I would no […]

  4. […] I wonder how empowering it feels to share our lives with dysarthria. When I happened to come across Annette’s Story, I sat stunned when she wrote, “Dysarthria has robbed me of confidence.” I forced David to sit […]

    • Avatar

      I hope, in no small way, that our experiences of dysarthria (individual and unique as they are) give hope to others affected by this most disabling, yet not necessarily obvious, effect of stroke. As a postscript to my blog may I add that tomorrow is the 5th anniversary of my stroke. I still have dysarthric speech but I manage it so much better now that I no longer expect perfect speech. I’m still improving and last week for the first time since my stroke I found myself singing along to the radio (you might call it caterwauling) but after 5 years unable to raise a note it really was music to my ears. It’s never too late to surprise yourself. Best wishes Annette

  5. Avatar

    This blessed me to read … two years post cerebellar stroke and still dealing with dysarthria… would love to talk with you sometime about this.
    Barbara

    Barbara Clark / Reply
    • Avatar

      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!

      Annette Dancer / (in reply to Barbara Clark) Reply
    • Avatar

      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

      Annette Dancer / (in reply to Barbara Clark) Reply
  6. Avatar

    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.

    Sadat / Reply
    • Avatar

      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

      Annette Dancer / (in reply to Sadat) Reply
  7. Marta Bienkiewicz

    Fantastic piece Annette! Very powerful

    Marta Bienkiewicz / Reply
  8. Avatar

    This is a much-needed first person account of a disability that can be very demoralising for the patient.

    Sunil Pandya / Reply

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