October 23, 2016 at 9:44 am #143211Caring for women with Beckers
I am currently working as a carer/ PA for a 24 year old girl living with Beckers. Over the last couple of weeks her condition has deteriorated to the point where she needs a breathing aid at night, for her this is really hard to deal with she is in her last year of uni and she was hoping it wouldn’t progress any further until she had finished. I have been looking online for advise, a bit more information or even someone who has gone through something similar so i can support her the best i can but it is rare to be this sever in a girl of her age. There is a lot of information of it in males or later onset in women i was just wondering if anyone out there who has been here and knows whats best to talk about with her or what is next for her now?
thank you so much
JessJessvdDriftParticipantPosts: 0Joined: 23/10/2016October 23, 2016 at 11:58 am #143214Reply To: Caring for women with Beckers
Hello Jess and thank you for joining the forum. I am sure that someone will come on shortly to offer the advcie that you need. Please do check back often.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015October 23, 2016 at 2:41 pm #143215Reply To: Caring for women with Beckers
hi Jess and welcome to the forum,
The whats next Q is a bit hard to answer. None of the predictions made about me as a child happened when the Drs said. I continued to walk unaided a good 20yrs past the prediction of wheelchairs. and due to Ventilation im still around at 34. Dont set time lines or barriers to anything. Go out and live, is my best advice all be it. It may take extra help from other people. Chances are your client has needed the breathing aid for some time and has been over tired. lots of colds or infections priors to aid. Add in the stress of University. Try to promote the breathing aid which im assuming is a ventilator as a positive. it should mean more effective breathing therefor more energy.
I Have CMD not becker but some of the hurdles will be similar.
I too use night time ventilation. My machine is a Bipap. we have few users of different machines who can answer in questions.
I started using night time ventilation a long time ago while in high school. It gave me lots more energy using the machine than not. Any change is hard to deal with. Happy to answer any questions and it would be lovely to answer any questions or worries you client has direct.
MDUK have a group called Trailblazers. who might be able to share their own experience of being in education with a condition etc. Its a really good group.
Please point your client to this facebook group. https://www.facebook.com/groups/mdctrailblazers/?multi_permalinks=10154309346084550¬if_t=group_highlights¬if_id=1477183513750480
MDUK also run a peer support program. http://www.musculardystrophyuk.org/about-us/contact/ I’m sure they will be able to put your client in contact with a Becker female.
and again. Happy to answer any Qs or point you in the right direction if I can, particularity about ventilation and breathing. both myself and the other moderator Sar78 have been using them a long time.
"""""""What doesn't kill you makes you stronger""""""Cat (Mod)ModeratorPosts: 1,002Joined: 20/09/2010October 23, 2016 at 8:43 pm #143225Reply To: Caring for women with Beckers
Yes I’ve been using Bipap since I was 15 after a nasty chest infection and pneumonia but should really have been using it before that. I have a type of CMD as well.
In my case it is what helped me get off life support so I didn’t get a breaking in period so to speak. The hardest thing was finding the right mask set up, it is a case of perseverance but you get there. What I would say is that I found I had more energy after using it at night, gone were the crushing morning headaches and nausea and my general health picked up. I have had one hospital admission in the 23 years I have used non-invasive ventilation.
Cat is right, none of us know how our respiratory needs will change. Even within sub-types there can be variation. I have learnt to listen to my body more and am a good judge of when I’m struggling, how to adapt. The ventilator soon became part of my daily routine. I use it in the day as well now and take it with me when I go out. It means I no longer dread going out, am not clock watching and I find myself able to enjoy things rather than struggling.
Ask away if there is anything you want to know, if we can’t answer it is likely we can point you in the right direction.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015
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