HELP!!!!! i dont know where to turn

Viewing 9 posts - 1 through 9 (of 9 total)
  • #149959
    HELP!!!!! i dont know where to turn

    Hi, i was recently diagnosed with myotonic muscular dystrophy. one of my siblings also has it. she was diagnosed around 6 months ago, myself more recently. although was symptomatic before diagnosis. i am at a loss of where to turn for any help and support. can anyone lead me in the right direction please. thanks pauline

    pauline-c
    Participant
    Posts: 0
    Joined: 05/06/2017
    #149962
    Reply To: HELP!!!!! i dont know where to turn

    Hello and welcome to the forum Pauline, I am so glad you have found us. There are many people on here who can give you advice to help with your problems so it would be really useful if you cold clarify for us what you need help with. I ask that becaue MD affects us all in different ways, not just physically but also in teh way we deal witht he changes to our bodies and lives. So pelase feel free to come back with as many questions as you want and the community, I am sure, will do its best to help you.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #149963
    Reply To: HELP!!!!! i dont know where to turn

    thanks for your response mike, at the moment my poor hubby is having to help me out of the bath and also when using the loo i have to shout of him to come help me stand from sitting (same as when i’m in an easy chair). i feel as if i’ve lost my independance, although still trying to hold down my job i can see myself it is getting harder, and before long will need to finish. also aids for preparing a meal i have difficulty using my hands as they will go into spasm. have any of you been refered to any therapist ? i feel as if i’m on my own with this. my g.p has helped with giving pain relief but nothing as referals for any help.

    pauline-c
    Participant
    Posts: 0
    Joined: 05/06/2017
    #149972
    Reply To: HELP!!!!! i dont know where to turn

    Hi,

    Welcome to the forum. Sorry you are having these
    difficulties. Thanks for bravely telling us your
    difficulties.

    Yes you need to see a therapist, particularly an O.T.
    or Occupational Therapist. They can help you with many things
    especially for the issues you mention. A toilet frame would
    help as would a bathlift or some safety grab rails. In the kitchen
    there are innumerable devices and techniques that can help. Adaptive, Thick-handled
    cutlery leap to mind. Problems Getting out of your easy chair might mean that
    you would benefit from a Rise and Recline chair or in the bedroom
    an Electric Profiling bed.

    All these come within the remit of the Occupational Therapy department.
    Maybe ask your G.P. directly to refer you to them, mentioning the
    problems you are having.

    "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
    #149974
    Reply To: HELP!!!!! i dont know where to turn

    Hi Pauline :welcome:

    There are lots of resources and folk that can help. Our members can suggest and we can signpost you to various places.

    Catatude, another of the forum’s moderators is having internet issues and has asked me to post a few bits of info that might be useful.

    Toilet aids that can help

    Cat has a closomat riser toilet. In addition, she had a less expensive mountway rider frame. The Mountway doesn’t need any building work and retails around £700. She says the Closomat on the other hand is a minimum of about £8000 and do require building work. You may be entitled to a Disabled Facilities Grant.

    Occupational Therapists can be very useful folk and I think you can get referred to one by your GP or Social Worker if you have one. An OT can assess you for any equipment that might help.

    There are chairs and wheelchairs with riser functions.

    Cat has discussed on a different thread how Access to Work has helped her with equipment at work. For example, she has a Mountway riser and there’s an automatic toilet door. An automatic flush has recently been added too. All funded by Access to Work.

    She also has a riser function on her power chair funded by ATW.

    Cat says that you can get riser bath seats as well and that although baths are often a great form of therapy or relaxation she loves her wetroom. Cat, like myself, only uses showers now.

    Another of our members might be able to suggest some other things. I will also post some links that might help.

    It can be a lot to get your head round. Take time to process and adapt as you need to. We all handle it differently but if you want to ask anything then just holler or get stuff off your chest if that’s what you feel you need to do. This forum has many uses!!

    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
    #149975
    Reply To: HELP!!!!! i dont know where to turn

    Ah I see said helpful member has already posted :Post:

    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
    #150025
    Reply To: HELP!!!!! i dont know where to turn

    Hi Pauline,
    Please do call our helpline team on 0800 652 6352 who will be able to talk you through what support may be available as well as being able to find someone to speak to.

    Joel

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    #150026
    Reply To: HELP!!!!! i dont know where to turn

    Thank you all for your responses,very grateful for all information given. i have rang the helpline and had some info posted to me. pauline

    pauline-c
    Participant
    Posts: 0
    Joined: 05/06/2017
    #150027
    Reply To: HELP!!!!! i dont know where to turn

    That’s great :)

    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
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