Opportunity to share your views on a new research proposal

Viewing 13 posts - 1 through 13 (of 13 total)
  • #75415
    Opportunity to share your views on a new research proposal

    Dear all,

    I am a Speech and Language Therapist working alongside teenagers and adults living with neuromuscular disease. My specialist area of work is in the diagnosis and management of swallowing difficulties.

    I am developing a research proposal which focuses on EARLY identification of possible swallowing difficulties. The aim of this research is to allow people living with neuromuscular disease the opportunity to make informed decisions about their eating, drinking and swallowing before any preventable complications may arise.

    I am keen to hear your views on whether you think this research would be of value to people living with neuromuscular disease. I am interested to hear from anybody living with a neuromuscular condition – in particular those living with Duchenne Muscular Dystrophy. I am also keen to hear the views of family members and carers.

    I am not currently asking for your involvement in the research – only your opinions on what you think of this research proposal. I will happily provide additional information to those who are interested and willing to share their thoughts and views.

    With many thanks for your time & consideration.

    Jodi
    Speech & Language Therapist

    JodiSLT
    Participant
    Posts: 7
    Joined: 13/10/2014
    #94960
    Re: Opportunity to share your views on a new research propos

    Hi Jodi,
    Personally, I think it’s a good research proposal. I don’t have any problems with swallowing but I know there are people who do. I am sure that more research will ultimately prove beneficial so I wish you success.
    Sybylla

    sybyllascarlett
    Participant
    Posts: 383
    Joined: 07/02/2012
    #94961
    Re: Opportunity to share your views on a new research propos

    I do have swallowing issues and I also think it is a good research proposal. It can be quite frightening when these problems are first encountered and I found understanding the mechanism and learning strategies something most valuable but wish I’d known before. I think there will be others echoing our responses on this forum and amongst the wider MD community.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #94962
    Re: Opportunity to share your views on a new research propos

    Thank you both very much for your sharing your opinion on this. I am pleased to hear that you think this is a good idea.

    I look forward to reading more.

    Thank-you again.

    Jodi

    JodiSLT
    Participant
    Posts: 7
    Joined: 13/10/2014
    #94963
    Re: Opportunity to share your views on a new research propos

    If you haven’t already done this it might be of use to you to read some past threads. We have talked at length about swallowing problems.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #94964
    Re: Opportunity to share your views on a new research propos

    Great – thank-you for the tip! Should I look anywhere in particular?

    JodiSLT
    Participant
    Posts: 7
    Joined: 13/10/2014
    #94965
    Re: Opportunity to share your views on a new research propos

    The best way to locate them is by doing a search in the top right of the page. Type swallowing in the box and then you’ll get a list if all threads where this has been written. There are quite a few but you’ll see that they are often part of the same topic.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #94966
    Re: Opportunity to share your views on a new research propos

    Brilliant – thank-you!

    JodiSLT
    Participant
    Posts: 7
    Joined: 13/10/2014
    #94967
    Re: Opportunity to share your views on a new research propos

    I agree with what has been said.

    I have had swallowing issues aplenty and seem to be always going to
    the SALT people for advice.

    Good idea. Go to search. Remember adding to several of these threads with
    my coping strategies on swallowing problems.

    Thanks.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #94968
    Re: Opportunity to share your views on a new research propos

    Many many thanks for sharing your incredibly valuable insights & experiences. If anybody would be interested in hearing more about this proposal and having the opportunity to comment please do let me know. It would be great to hear from you.

    Jodi

    JodiSLT
    Participant
    Posts: 7
    Joined: 13/10/2014
    #94969
    Re: Opportunity to share your views on a new research propos

    think this is a positive step – particularly bearing in mind possible or future ventilation needs of patients. I have always had a degre of swallow and throat muscle issues and had speech therapy when young but feel the long term use of home ventilation and increasing prolonged use of the vent makes throat muscles lazy. it has got to a point that I need to use the vent to comfortably enjoy a meal.

    not sure if any other vent users have notices this but when on the vent I rarely need to swallow and I have to make a conscious effort to do so. havnt meet a SPT who has really understood the vent or the connection to speech and swallow.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #94970
    Re: Opportunity to share your views on a new research propos

    Cat

    Hadn’t thought about it until you said but am certain I would swallow more if I was not using the vent!!

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #94971
    Re: Opportunity to share your views on a new research propos

    Hi both,

    A good point re the relationship between swallowing and ventilation use. In my experience there are often questions that come up surrounding the relationship between the two.

    I believe a very small amount of studies have explored the relationship between swallowing and tracheostomy ventilation but not so much swallowing and non-invasive ventilation. I would certainly agree that understanding more about this relationship would be hugely beneficial.

    I learn a lot from listening to patients experiences of swallowing on and off the ventilator.

    JodiSLT
    Participant
    Posts: 7
    Joined: 13/10/2014
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