Speech difficulties with HSP

Posted - May 2016 in Your Say

Angela from Melbourne writes:

“I have HSP and experiencing some speech difficulties. My neurologist advised me to see a speech pathologist but he was unable to make a recommendation. My GP does not know of any who specialise in neurological disorders. I just don’t want to go to anybody as I spend so much time explaining the condition.

Has anyone been to a speech pathologist? Can anyone give me a recommendation for one in Melbourne?”

Thank you



Comments on this story

  1. Kay posted at 2:42 pm on 13 June 2016Reply

    Hi Angela, I live in Geelong and have used a Speech Therapist without any real results. I then got a referral to Melbourne Voice Assessment Centre in Fitzroy. They may have a list of local therapists for you.

    It seems my lips, tongue and vocal chords are affected. They have recommended plumping my vocal chords with restylane temporarily, and if that works with more permanent fat from my stomach. (not enough I suspect !) This should help with volume and lessen the effort it takes me to speak. It is going to be a wait of couple of before the procedure. I’ll post reports then. Good luck..Kay

  2. Angela posted at 10:47 pm on 2 December 2016Reply

    Thank you Kay, sorry I have only just seen this. I have been to a speech Therapist at Donvale Rehab. She has actually been very helpful, she has experience with Parkinson. I am having a swallowing test done at Cabrini Brighton next week. Seemingly the muscles in my tongue are affected. This has caused me to speak very slowly. I am now being re assessed as I am suspicious I may have PLS. Was diagnosed with HSP 7 years ago. Only affected in lower limbs but now speech and I am also noticing a weakness in my fine motor skills in my hands. The test is called a Videofluoroscopy. I will make note of Voice Assessment Centre in Fitzroy. thank you for your help. Angela.

  3. Kay posted at 11:42 am on 27 February 2017Reply

    Hi again Angela. The restalyne didn’t work unfortunately. However the therapists at MVAC want me to go back and be tested for suitability for botox injections. I think it is also a videofluoroscopy by a ENT specialist connected with MVAC. I am also noticing some change in my arms. I now use a motorised wheelchair except for very tiny distances. I like, suspect I have PLS. I was diagnosed 8 years ago. Kay

  4. Angela posted at 3:06 pm on 9 April 2017Reply

    Hi Kay, I am in the middle of being re-diagnosed. Suspected PLS for me, which makes sense. I see Neurologist end of April and more appointments in May. I will keep you posted. Speech, swallowing and now fingers affected. Have had videofluoroscopy and nerve conduction and EMT more tests happening at the moment. I will touch base in May. Angela

  5. Kay posted at 6:36 pm on 16 May 2017Reply

    Hi Angela, I am sorry you are having to be re-assessed. I also have speech (lips and tongue), arms and hands slightly affected. I guess for us it doesn’t matter too much what we call it. We just keep going on. I had the videofluoroscopy last week, and so far my swallowing is OK. I am waiting to see if they can possibly try Botox to help articulation. I have had some memorable experiences with mis-communication. I am finding the speech the hardest to deal with. I thought I might try knitting again to exercise my hands. Now that is a vision I didn’t have for myself! take care and do let me know how you go.

  6. Megan posted at 9:34 pm on 14 August 2018Reply

    Perhaps look for a speech therapist who specialises in Apraxia which is a motor control issue with speech. Whilst it’s not the condition you have I suspect that perhaps they might use similar strategies to treat you.

  7. Jordana posted at 6:47 pm on 17 September 2018Reply

    hi all,
    Thanks for everyone’s feedback. I was not aware that it may affect my lips, tongue and vocal cord. But because the quality and volume of my speech has deteriorated particularly over the last few years I sought assistance from a Speech Therapist. Following an assessment she told me that similarly to Motor Neurone Disease, therapy would make me tired, and subsequently defeat the purpose. Speech difficulties could be best managed by developing alternative methods of communication such as emailing or texting. Has anyone been told similarly? Jordana

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