wingedwarrior

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Viewing 20 posts - 1 through 20 (of 51 total)
  • #76612
    Re: Pet photos

    23! That is old my cat, Bob, he is up the thread a bit, is only 15!

    wingedwarrior
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    Posts: 67
    Joined: 10/01/2011
    #80795
    Re: Face muscles

    Yeah I have FSHD which reaches several muscles round the mouth and eye area and places start to droop. :(

    wingedwarrior
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    Posts: 67
    Joined: 10/01/2011
    #80793
    Re: Face muscles

    I am like you ambitiousturtle24, I think I have a full on beamer and the corner of my mouth turns up……. a little bit. ;)

    Are there any exercises that strengthen the mouth muscles its effects?
    Or even being able to show a little smile, at the mo my smile is a straight line getting saggier and saggier.

    Any suggestions.

    WW

    wingedwarrior
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    #78283
    Re: Time Limit Of E.S.A

    Thanks for the help and info. Very kindly of you sir.

    This website is worth its weight in gold when coming to help and info!!!!!

    I applaude eveything and everyone 8-) thah has any thing to do with it.

    I doff my hat to ye all.

    WW

    wingedwarrior
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    #80802
    Re: Anyone else have this?

    you read it everywhere, it is like trying to get blood from a stone.

    There are incideces of people with cancer being declined esa.

    My uncle had cancer and I looked at some of the internet boards and people wherte getting turned down on the simplest things!!!

    WW

    wingedwarrior
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    Posts: 67
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    #78281
    Re: Time Limit Of E.S.A

    I.m all a fluster now, I just got my esa50 through the door (employment support allowence), 6 month review, I think. So many things have changed since then,bodywise and goverment wise. Who knows what is gonna happen.

    It is just another thing to deal with along with all the DLA goings on. :evil:

    Anyway

    WW

    wingedwarrior
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    #79945
    Re: Physio

    Seen as this is physio related I thought I would post here rather than start a new thread.

    So I was thinking about massage therapy, I know that the odds of getting this on the NHS is slim to none, so, Is there a list or somewhere to get in touch with that gives details of private massage therapist that specialise in muscular dystrophy. I have seen a list on the internet that shows accreteded massage therapist but not what they specialise in. Any help thanks.

    WW

    wingedwarrior
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    Posts: 67
    Joined: 10/01/2011
    #79943
    Re: Physio

    A few months ago I started physio on the NHS. The person who seen me seemed to know a bit about muscle disease and the way FSHD impacted the upper back and shoulders. I have very limited range in my upper body, as I have severe bilateral winged scapula which means my arms have not been above shoulder height, even less, for a very long time, so I was very stiff.

    She passively moved my arms above my shoulders, it felt, well good and damn sore at the same time! :) :( . After the session I could not move for a day or so even though it was only basic stretches that I was doing. Next session was 2 weeks later which I was a bit miffed about.

    She gave me very simple stretches to do. Basically try and sit up straight keep your neck tall and then pull your chin to the neck. Do this 3 times a couple of times a day. The first few times I was in complete agony but it then got easier to do, still very sore but I could feel the benefit. I was not so tight in my upper back.

    The other one was to try and use the muscles I have left in my back to try and pull the shoulder blade back into the body. This is where it got really hard. I literally have no muscle in my upper back and the ones I do have are so overworked that this was near impossible to do. I thought the neck stretches where hard! I could not do this exercise without intense pain and fatigue so I stopped.

    The next session the physio said she could see that the shoulder blades where sitting better. The ROM in my left shoulder was marginally better but the right side there was no change. Once again she stretched my arms above my head, I cannot describe how good this feels, if also sore. Now for the next stretches I have to use one of those gym balls, a big ball filled with air. Put the ball on a bed or the sofa place my hand on the ball and move my hand and arm backwards and forwards and to the side. This is where things get complicated. The amount of pain after doing these these stretches was unbelievable.

    I think that when the pain is that bad the stretches are doing more harm than good. As we know there is a fine line between doing good and doing damage. I had to stop doing these stretches all together and because now my next appointment is not for another month I can not really talk to anyone about what I should be doing! I thought that I would be having physio every week so I could be monitored, but it seems like they are treating me like I will get better after I have done there standard amount of sessions that a person with a sprained ankle gets.

    The other thing is that the physio is only focusing on my upper body but my stomach muscles and left leg muscle are experiencing muscle wasting. I have started to get foot drop and finding it extremly difficult to go up stairs, even walking on flat surfaces I seem to trip up over the tiniest thing. I did mention this but I get no response really about my foot. :evil:

    Nearly finished, sorry for the long post :roll:
    I have a leaflet about the Neuromuscular Center and was interested to see what the outcome of Morgan’s visit was. My regional rep from the MDC also recommended the center but I want to wait and see if it is worth going all that distance. I was also recommended hydro therapy but the nearest hospital that does it is nearly a two hour drive away and an hour in the car does my back in and cant walk for days.

    Just needed to sound off thanks all :D
    WW

    wingedwarrior
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    #79320
    Re: Weakened Bowel Muscles

    I have just been give lactalose. It sure does make you bloated! I will persevere for a time and see if there is any effect.
    I have crohn’s disease as well so I think that with the pain meds and every other tablet I’m taking is making my body not really know what to do. The crohn’s should cause the other end to be quite active :oops: , but the mixture of drugs and MD(?) is counteracting this.

    Well we will see in a week or so.

    WW

    wingedwarrior
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    #79568
    Re: What Is On Your Ipod Today

    Pearl Jam Unplugged is the order of the day.

    http://www.timsah.com/Pearl-Jam-MTV-Unplugged-State-of-Love-and-Trust/eTdTQwJlKJa

    To watch the full show go to http://www.totallyfuzzy.net/ourtube/pearl-jam/mtv-unplugged-full-show-video_52c69369b.html

    wingedwarrior
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    Posts: 67
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    #80118
    Re: Hoists

    Don’t know much about hoists but I found these sites that hire them.

    http://www.disabilityhoisthire.co.uk/types-of-hoist/index.html
    http://www.carefreelifting.co.uk/hoisthire.html

    A list of companies http://www.hirezone.co.uk/Disabled/Hoist%20Hire/Hoists.htm

    I dont know how reputable these companies are but a bit of reaserch should tell you.

    WW

    wingedwarrior
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    Posts: 67
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    #79889
    Re: Free Music…

    If you like Nofx and the like (80’s 90’s punk) then there are a lot of free mp3s you can get of there website. You cant dowload them but can listen online:

    http://www.fatwreck.com/audio/
    http://www.fatwreck.com/media/

    Dischord records radio player (70’s 80’s and 90’s punk)
    http://www.dischord.com/media

    Dance music with a slight twist:

    http://www.wrongmusic.co.uk/wronglab

    just click and listen

    wingedwarrior
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    Posts: 67
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    #79566
    Re: What Is On Your Ipod Today

    As today is the anniversary of the death of Nirvana frontman Kurt Cobain I will be listening to:

    Nivarana
    MTV Unplugged
    http://www.youtube.com/watch?v=RS487ipkaI4
    http://www.youtube.com/watch?v=ULkI9LT7Y-0

    Incesticide album
    http://www.youtube.com/watch?v=9B0U5caHIH0
    http://www.youtube.com/watch?v=DXb4sDqs56I&feature=related

    Bleach
    http://www.youtube.com/watch?v=rvwzCobcxTw
    http://www.youtube.com/watch?v=JpMt_YqVbhw

    17 years ago today, seems only a few years ago.

    wingedwarrior
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    #79927
    Re: BECKER CARRIER AND FAMILY

    Hi there Felicity, welcome :)

    I don’t have Beckers, but there are a few people on here that do and are best suited to answer your questions. But regarding the specialists appointment, I would take that appointment if only to put your own mind at rest. That is what they are there for. They can rule out one thing and send you, if needed, to the right/next place.

    Take care WW

    wingedwarrior
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    Posts: 67
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    #79565
    Re: What Is On Your Ipod Today

    Today I am listening to a bit of ska punk.

    Sublime
    http://www.youtube.com/watch?v=CeMeDihwyrg&feature=artistob&playnext=1&list=TLIJyfyDAQDUE

    The Skoidats
    http://www.youtube.com/watch?v=AVdvMgtBmPo

    Heres a good website for British and round the world Ska Punk old and new.

    http://www.moonskaworld.com/index.shtml

    I recomend the compilation albums

    Moon Ska Europe sampler
    Moon Ska New York Usa sampler

    http://www.londoninternationalskafestival.co.uk/line-up/

    wingedwarrior
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    Posts: 67
    Joined: 10/01/2011
    #79550
    Re: What Is On Your Ipod Today

    Nice sunny day today and for some reason feeling nostalgic so I am Listenig to Alice in Chains

    http://www.youtube.com/watch?v=qNf1hRkVnM4

    Had some good times listening to this band. 8-)

    I am also mixing in a bit of Aphex Twin, just to keep me awake :twisted:

    http://www.youtube.com/watch?v=5Az_7U0-cK0 this video is worth a watch, but be warned it is slightly scary! :twisted:

    wingedwarrior
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    #79084
    Re: trying to have a baby?

    Congrautulations! :D

    I hope everything works out for you!

    wingedwarrior
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    Posts: 67
    Joined: 10/01/2011
    #79723
    Re: Establishment of clonal myogenic cells in FSHD

    Thanks Kristin.

    wingedwarrior
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    #79815
    Re: Happy Birthday AMG

    Hope you are having a very good day and enjoy the rest of your Birthaday.

    wingedwarrior
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