-
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 TherapistRe: Opportunity to share your views on a new research proposHi 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.
SybyllaRe: Opportunity to share your views on a new research proposI 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
Re: Opportunity to share your views on a new research proposThank 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
Re: Opportunity to share your views on a new research proposIf 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
Re: Opportunity to share your views on a new research proposGreat – thank-you for the tip! Should I look anywhere in particular?
Re: Opportunity to share your views on a new research proposThe 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
Re: Opportunity to share your views on a new research proposBrilliant – thank-you!
Re: Opportunity to share your views on a new research proposI 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!".
Re: Opportunity to share your views on a new research proposMany 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
Re: Opportunity to share your views on a new research proposthink 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.
Re: Opportunity to share your views on a new research proposCat
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
Re: Opportunity to share your views on a new research proposHi 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.
You must be logged in to reply to this topic.