nicnic

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Viewing 7 posts - 1 through 7 (of 7 total)
  • #77103
    Re: Cough Assist Insufflator-Exsufflator

    @sar78 wrote:

    Hi Nicci,

    I have used a Cough-Assist before. I took part in a study some years ago which involved me trying one out and was able to make use of it later when I was ill and admitted to the Royal Brompton. I only need to use one when I have a chest infection but have been told that if it became a regular occurence I could apply to have one at home. I know of others that have them on permanent loan.I get on very well with the Cough Assist and I am sure it helped me recover quicker. It is a bit strange at first, it feels a bit like a huge hoover being placed over your face. :? In the US I get the impression that these machines are more readily used and earlier on, but they have a different health system to us.

    There are a number of hospitals across the UK that have one of these machines. I made enquiries about my local hospital earlier this year as it would be much better if I could use one locally when I need to, rather than make the 2 hour journey to London, made all the more difficult when you are ill!!

    Hope this answers a few questions, I can send you more details about hospitals that have them if you would like, in fact I’ll do that anyway.

    Sarah :)

    Hi Sarah,

    Thanks very much for your help on that. Yes it would be great if you could give me a list of hospitals, it may be something that needs to focused on in the future with our family.

    Hugs
    Nicci x

    nicnic
    Participant
    Posts: 9
    Joined: 15/09/2010
    #77098
    Re: MY ELDEST Grandson is 12 and suffers from DMD

    @supernan wrote:

    MY ELDEST Grandson who is now 12 and suffers from DMDhad a spinal x-ray last week and we were told that his curvature is now at 20% and is going to get steadily worse he has another x-ray in 6 months and have been told he will most likely need the operation,we were also told that it is better to have the operation sooner rather than later could anyone give any advice on this please

    Haha, it’s my Mummy! (How did I know??)

    Mum, I would go for this option it would be better in the long term as the scoliosis (curvature) progresses this will impact on Damon’s respiratory function which will become impaired as the condition begins to affect the muscles used for breathing.

    I will get some information for you next time i am down, thankfully am better so I can get out of the house!!! Be down Thursday!

    Love and hugs
    Nicci x

    nicnic
    Participant
    Posts: 9
    Joined: 15/09/2010
    #76380
    Re: Latest volunteering opportunities listing

    @mesamb wrote:

    @nicnic wrote:

    Hey Vicky :D

    Am good thanks! Good to be here :D Hope all is well with you?

    You going to conference tomorrow?

    Hugs Nicci. :D

    Really nice to meet you at the weekend Nicci and hope you and your uncle didn’t run into too much traffic on the way home. Tell him I enjoyed hearing his stories about what he had to eat in China :shock: :)

    The new “fundraising in your area” section on the website is coming very soon… 8-)

    Hi Vicky,
    Hope you are well? I must ask my Uncle about these stories in china, lol.

    Yes our journey home was rather smooth, sorry not posted here for a while but yes I have also seen the “fundraising in your area” section keeping very much up to date, I am like a sponge, soaking everything in at the moment.

    Hugs Nicci :D

    nicnic
    Participant
    Posts: 9
    Joined: 15/09/2010
    #75720
    Re: Survey reveals shocking lack of specialist care for peop

    I feel that the problem also lies with the GP’s, also most Nurses who I have worked with throughout my Nurse Training do not have any knowledge of MD neither.
    To be able to access specialist services, GP’s and Healthcare professionals need to know what the general needs are of individuals with MD and also the specialist services available. Having a huge lack of knowledge which is most certainly the case, impacts on optimal care that could be provided and as we know all too well, can impact quite siginificantly on life-expectancy.

    These people need to be educated in order to help improve care all round, it is no good a Consultant Neuromuscular Specialist liasing with the local GP and local Nursing team if they have no idea on likelihood of progression of Neuromuscular Conditions, this again impacts of the care they receive.

    I for one cannot sit there and let this happen, I joined the Greater Manchester Neurological Alliance in the hope that we can increase the awareness, which is fundamental to an individual living with MD.
    Nicci.

    nicnic
    Participant
    Posts: 9
    Joined: 15/09/2010
    #76665
    Re: things for boys with dmd to do

    @pinder463 wrote:

    hi im looking for things for my 2 boys to do they both have dmd anybody got any suggestions please

    Hey there!

    I have 2 nephews with DMD and they are both avid train enthusiasts. Their favourite pastime is going to watch trains at the train station.

    What are their favourite pastimes?

    Nicci. :D

    nicnic
    Participant
    Posts: 9
    Joined: 15/09/2010
    #76377
    Re: Latest volunteering opportunities listing

    Hey Vicky :D

    Am good thanks! Good to be here :D Hope all is well with you?

    You going to conference tomorrow?

    Hugs Nicci. :D

    nicnic
    Participant
    Posts: 9
    Joined: 15/09/2010
    #76375
    Re: Latest volunteering opportunities listing

    If you live in the Manchester Area and want to get involved with fundraising, please get in touch with me.

    The North Manchester Area Fundraising Group has been in operation since February 2009 and has enjoyed immense success!
    We have lots of volunteering opportunities coming our way over the coming months, if you would like to join our successful friendly bunch, email me at N.Geraghty@muscular-dystrophy.org

    I very much look forward to hearing from you!! :D 8-)

    nicnic
    Participant
    Posts: 9
    Joined: 15/09/2010
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