June 5, 2017 at 3:57 pm #149959HELP!!!!! 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 paulineJune 6, 2017 at 11:45 am #149962Reply 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.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015June 6, 2017 at 12:36 pm #149963Reply 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.June 6, 2017 at 7:08 pm #149972Reply To: HELP!!!!! i dont know where to turn
Welcome to the forum. Sorry you are having these
difficulties. Thanks for bravely telling us your
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!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010June 6, 2017 at 9:27 pm #149974Reply To: HELP!!!!! i dont know where to turn
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 AdamsJune 8, 2017 at 3:07 pm #150025Reply To: HELP!!!!! i dont know where to turn
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.
JoelJoelRParticipantPosts: 0Joined: 01/12/2015
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