Terry Jones

Profiles of Aphasia: Terry Jones

Terry Jones is funny. As a member of Monty Python’s Flying Circus troupe, he entertained audiences by writing, directing, and acting in comedy sketches and full-length movies such as Monty Python and the Holy Grail. This talented writer and actor was also diagnosed with frontotemporal dementia (FTD) in 2015. Primary progressive aphasia is a subtype of FTD.

We’ve been profiling well-known people with aphasia, including Ralph Waldo Emerson and Gabby Giffords. Aphasia can affect anyone; even poetic writers and deep thinkers.

First Symptoms

Friends and colleagues first noticed his speech difficulties in 2014. He was working on Monty Python and couldn’t remember his lines.

Michael Palin, another Monty Python member, explains, “Terry was always very good at remembering lines. But this time he had real problems, and in the end he had to use a teleprompter. That was a first for him. I realized then that something more serious than memory lapses was affecting him.”

It took another year after he lost more and more words and conversation dwindled to be diagnosed with PPA. As his daughter points out, “For someone who lived by words and discussions this was tragic.”

Speaking Out

Jones is using his platform to raise awareness for this communication disorder. The Guardian reported last year that,

Jones was not expected to talk to the press again – until last week, when his family requested an interview to help promote public awareness of FTD, a condition that affects tens of thousands of people in the UK but which remains a relatively little-known medical problem. Their hope was that information about Jones’s responses to his condition might help others cope with it.

Palin discussed in the same article how Jones’s personality helps to spread awareness. He admits that Jones started telling people about PPA quickly after diagnosis. He’d say, “‘I’ve got dementia, you know. My frontal brain lobe has absconded.’ He knew exactly what was affecting him and he wanted to share that knowledge – because that is the way that Terry is. FTD may cause loss of inhibition, but Terry was never very inhibited in the first place.”

That lack of inhibition is helping many others understand PPA or come to terms with their own diagnosis.

By Eduardo Unda-Sanzana – Flickr, CC BY 2.0

Comments

12 Comments

  • carol batten
    August 30, 2018 at 8:47 am

    yes I have the same dementia as Terry Jones. FTD from a PPA . So far this is 6 years , but now my muscles are affecting my back , my words are not easy to remember .

  • Gillian Rafferty
    August 30, 2018 at 10:20 am

    My husband suffers from the same diagnosis though his sight has also been affected. He used to be a professional photographer so, like Terry, his ability to work has been affected. Whilst sad to hear about Terry Jones, It’s good to know that he is raising awareness of it in this country. The U.S. is far more aware and offer more professional advice and assistance for sufferers. There is so little in the U.K. though I believe awareness is growing. As his Carer, I really wish there was more help with strategies to deal with it as, unlike other forms of Aphasia, PPA is not reversible by the usual speech therapy programmes

  • Sheila
    August 30, 2018 at 12:12 pm

    I was recently diagnosed with primary progressive non-fluent aphasia; so far my speech is the only thing affected. I noticed 4 years ago my speech was slowing but my family doctor said I’d always been deliberate in my speech; after a few months I convinced her to refer me to a neurologist who diagnosed me with Alzheimer’s after a MRI. I was devastated but wanted the diagnosis confirmed so I went to the Brain and Memory Center at the University of Washington who provided the correct diagnosis after many tests, a second
    MRI and a PET Scan. I went thru the various stages of grief but have now accepted my diagnosis. I have researched the progression of the disease but found little and this is what I want to know. I know individuals vary but there must be some definite progression steps.

  • Liz Biss
    September 3, 2018 at 8:56 pm

    My Dr. has taken an MRI (and some other tests) he tells me I have aggressive anomia. In simple words, I can speak just fine although I can’t always use one specific word. I am much better off writing online than I am speaking with a friend since I can figure out another work to use “here” and not when I am out with a friend.

    What I want to know is what can I do to get better.

    I will be happy to hear from anyone who has any ideas or actual simulations.

  • Shari shafer
    October 21, 2018 at 4:12 pm

    To: Shelia
    What is the name of the Doctor that you saw at the Universay of Washington, please? I live in Yakima and have recently been diagnosed. Thank you.

  • Clive
    February 5, 2019 at 6:53 pm

    Gillian Rafferty tells us ‘The U.S. is far more aware and offer more professional advice and assistance for sufferers.’

    Then the next comment from Sheila, who is in the USA, spent 4 years trying to get a diagnosis that was wrong, then had to get (pay for) another diagnosis.

    Far more aware.

  • Alice Paulucci
    January 29, 2020 at 9:59 am

    My husband was diagnosed with Aphasia over 4 years ago. At first I noticed him sometimes using the wrong words when speaking. A neurologist tested him and said it was aphasia. For a year I continued getting him tested, but also brought him weekly to an Aphasia center in NJ. They had a class for him and next door they had a support group that I attended. This was very helpful for both of us. It became harder & harder for me to get him there, it was an hour away and he started to show other signs of dementia.
    He was finally diagnosed with FTD. I took care of him at home for over a year, but he finally got to the point where he became a resident at Parker at Monroe, a wonderful dementia care facility. Unfortunately he lost his battle with dementia over a year ago. But I feel the year he spent at the Aphasia Group was very beneficial to his quality if life! Their support group was a God send for me.
    Thank you, and God bless all of you!

  • Ealasaid
    January 29, 2020 at 10:23 am

    Re: PPA
    I have had several assessments but was unable to engage the health professional (presumably a gerontologist) in a discussion of Aphasia. Each appeared to unaware of the research to date, and I was unable to get any sense of the progression of the condition as it applied to me, or even in general. Fortunately, my GP was concerned and he has assisted in understanding my condition.
    As a professor, I experienced difficulty with words during lectures, and I felt forced to take early retirement. From before I retired, I have been unable to coherently deliver papers at conferences, or indeed, to do any public speaking. Writing and some aspects of comprehension have also become problems.
    I have endeavoured to help my family and friends understand what is happening to my speech. For the most part, they initially proclaimed that I couldn’t possibly have the condition since I was an academic and “too smart for that!” However, when I reminded them of how often I “lose” words, they are now more understanding.
    I would like to comment on some articles dealing with support for family and friends of persons with Aphasia — that they should not provide the “missing” word. I disagree, and have encouraged listeners to supply the word, and so facilitate conversation. Most had already been unconsciously supplying words and my information has helped them to understand what is happening.
    Thank you for the attention to this condition. I wonder if there you could supply any articles that report on research on the progression of PPA.

  • Elaine Stueven
    January 29, 2020 at 4:08 pm

    My daughter, now age 60 was diagnosed last year with PPA at Mayo Clinic in MN. We first noticed her speech problems and writing at least 3 years prior. Recent months we understand very little of what she is trying to say and is mostly hand gestures, and seems that after hesitation she looses the thought that was in her head momentarily. She also now her short term memory is fading. Very recently her personal upkeep is untidy. Very unusual before to see her hair undone and no makeup. She wears same shoes and jeans often, even to church. She always cared how she looked before PPA. I am so sad about losing my firstborn right before my eyes. She’s physically alive but no longer able to communicate and express herself and unable to understand me. We hug a lot and look at old pictures of family, reunions etc. These things bring smiles and joy yet to her. Never before has anyone in my family history had any dementia or Alzheimers. I am 84 next month, live alone and still do all my own business like my mother did up until she died at 90. This is a horrible disease.

  • Mary
    January 29, 2020 at 7:05 pm

    There is virtually no information on pap as far as what to expect or anything on the progression of the disease. I realize the progression may be different in people but I’d like to know what may be possible.

  • Jane Hillyard
    January 30, 2020 at 3:34 am

    Hello all. My husband has ‘Broca’s’ Aphasia. Left front temporal lobe I believe. He had a stroke after a hip replacement 16 months ago. Unlucky for him as he was not a typical stroke candidate. I’m writing on his behalf as the ability to write was also halted. He wrote poetry since he was a child and can’t create it now. He was devastated from day one as he realised what had happened to him. I’ve helped him through this up til now and still am. It’s so amazing how he has progressed from no speech at all, only the word ‘I’. Today you’d hardly notice the problem although he still has to work hard at thinking about words and how to retrieve them. I want to emphasise to people with this deficit to “keep working on it” even if you feel it’s all futile, because it’s certainly NOT futile at all. Although we (as a family helping dad) was told all different things from various professionals and to be candid they’re not always the best people to listen to although it is of course the first point of help that’s offered after a stroke.
    I could say so much here but I guess I’ll have to stop here

  • Anonymous
    February 9, 2020 at 10:06 am

    My wife was diagnosed with PPA at the Mayo Clinic in Rochester in 2015. Prior to that her communication skills had been deteriorating for about two years, forcing her to retire from a job she dearly loved as a cook in a university dining hall. She was 60 years old at the time. She is now mute and needs assistance with most aspects of her life. Of course we as a family are heartbroken. Yet our girls and son have shown such love through their help for Mom and encouragement. We hope and pray for her and are grateful that so far she can be at home. She is completely mobile and enjoys taking walks with me.

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