Viewing 20 posts - 1 through 20 (of 30 total)
  • #74824
    Target MD

    Hi everyone

    It’s quite exciting posting in a new board for the first time – yay!

    Two things: the latest Target MD and Target Research magazines are now available online http://www.muscular-dystrophy.org/about/what_we_do/key_publications/targetmd/6569_target_md_and_target_research_2013_2_of_4. Thanks, as always, for your help in contributing your thoughts, hints and tips – the TalkMD section is great!

    Secondly, I am now putting a call out for thoughts, ideas and suggestions for the next edition of Target MD. The theme is ‘health and wellbeing’ and I’d like to focus on not only specialist healthcare – what works, what doesn’t, what is needed – but also on what you do to maintain good health and ensure good quality of life. If there is anything else you can think of that you’d like to mention please feel free to do so.

    Thanks for your help!
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #88478
    Re: Target MD

    Thank you very much for posting this link.
    Having a problem reading Target MD online though.

    Do not know if it is just me but I cannot get beyond page nine using
    either Firefox or Chrome browsers.

    "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
    #88479
    Re: Target MD

    I’m having the same problem, i just subscribed to the magazine yesterday.

    Washyken
    Participant
    Posts: 41
    Joined: 23/02/2011
    #88480
    Re: Target MD

    Hi taungfox and washyken

    Thanks for the feedback. Our online manager – Helen the guru – is working on this, so I hope you will be able to read it online, without frustration, soon. We’ll keep you posted.

    And thanks, washyken, for subscribing to the magazine. That really helps us.

    Have a good day, and we’ll let you know when the bug is sorted.
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #88481
    Re: Target MD

    Don’t know if this helps or complicates matters further. I can read the magazine perfectly happily onmy ipad, swiping back ad forth without hesitation.

    BUT

    On my iMac in Safari after page nine it completely locked up my machine, had to cut the power and reboot.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #88482
    Re: Target MD

    it froze on mine too. i just assumed it was the net being busy. :?

    stefan

    littlestef
    Participant
    Posts: 526
    Joined: 04/10/2011
    #88483
    Re: Target MD

    Hi all,

    Really sorry about this – the issue should now be fixed.

    Thanks, Helen

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #88484
    Re: Target MD

    @HelenPutnam wrote:

    Hi all,

    Really sorry about this – the issue should now be fixed.

    Thanks, Helen

    Thank You Very Much.

    "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
    #88485
    Re: Target MD

    Hi everyone!

    I’m working on the next edition of Target MD and, as always, would value your thoughts on the theme: health and wellbeing. One of our Trailblazers has said that we don’t hear enough about the psychological side of being young and disabled, and that different people have different coping strategies. What are your thoughts, and what would you describe as your coping strategies?

    Thanks – I look forward to hearing your ideas.

    Have a great Thursday
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #88486
    Re: Target MD

    hi ruth. couldn’t the psychological side of things be made to include all ages as well as the young. im asking because I was fairly active up until the age of about 29. at 29 I had my first TIA and stroke, which basicly caused me to become depressed (forgive spelling, brain not working) for a number of years.

    stefan

    littlestef
    Participant
    Posts: 526
    Joined: 04/10/2011
    #88487
    Re: Target MD

    @writerruth wrote:

    Hi everyone!

    I’m working on the next edition of Target MD and, as always, would value your thoughts on the theme: health and wellbeing. One of our Trailblazers has said that we don’t hear enough about the psychological side of being young and disabled, and that different people have different coping strategies. What are your thoughts, and what would you describe as your coping strategies?Thanks – I look forward to hearing your ideas.Have a great ThursdayRuth

    This is very interesting indeed and a subject that should be explored.

    It is a subject that should be explored in greater depth than we are able to give it!

    Cannot give great insights into young and disabled as however much I wish it I can
    no longer describe myself as young. Being slightly contrary and rebellious for a moment
    would it be even more apposite to look at the psychological effects of people of any
    age having a disease that is incurable and progressive.

    "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
    #88488
    Re: Target MD

    Hi littlestef and taungfox

    My bad … I did mean to qualify this by saying the comment came from a Trailblazer, but it is a subject that affects all ages. (Being married to a therapist, I know that age is not a factor at all.)

    I didn’t for a moment intend to be exclusive; so please do all let me have your thoughts and insights. I know that it is a big subject, and I will explore it in a bit more depth in the magazine.

    Thanks and apologies
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #88489
    Re: Target MD

    Also, if you’d prefer to email me your thoughts, please feel free to do so at r.martin@muscular-dystrophy.org

    Thanks!
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #88490
    Re: Target MD

    damn. ruths married. now i am on a downer. lol

    stefan

    littlestef
    Participant
    Posts: 526
    Joined: 04/10/2011
    #88492
    Re: Target MD

    I would have liked to have a session with a councillor, away from family, who understands MD as part of my yearly MD check ups. I really think that psychological support is important for individuals and family who assist them but is not a routine consideration. They could refer you on to local mental health teams if needed. With MD being progressive – their is always something new to get your head around – especially big or sudden losses in movement, breathing or a period of illness that effect so many areas of life (or just worries about how your family are or aren’t coping).

    I get most of my emotional support from people I have met or become friends with on the net (support groups, general chit chat, TalkMD) and not family. Sometimes family are the hardest or most impossible people to share how you are feeling – perhaps because they struggle with their feelings to?

    I think articles on the feelings people have living with MD and caring/supporting someone with MD could be highlighted and how to manage emotionally?

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #88491
    Re: Target MD

    Counselling as others said would be good, its just nice to talk to someone who doesn’t judge you

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #88496
    Re: Target MD

    Thanks, Louise and Vicki, for your valuable thoughts and comments. I am working on the first page proofs of the magazine, and – if you’re happy for me to do so – I would like to squeeze your comments into a page filled with thoughts and comments from a number of people affected by muscle-wasting conditions. Would you be ok with that? And would you like your comments to be anonymous or attributed to you? Either is absolutely fine.

    Thanks again
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #88497
    Re: Target MD

    I’m fine with my comments being printed and my name being used ;)

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #88498
    Re: Target MD

    Apologies that this is a bit late.
    I have made a good friend through Talk MD. We can talk freely with each other and understand each other like no one else can.

    Others really do not understand the intricacies of MD. And to be honest how could they? Often people have made suggestions which they think are helpful and are met with a ‘yes but’ answer. Then you appear to be very negative when , in fact, you are just being honest.

    I am quite a spiritual person which I think helps me. I have regular reiki sessions, go to the gym, listen to positive CDs, read self help book and basically just try to keep goings. Pacing yourself is very important but is also difficult because you miss out on things, which is upsetting.

    I took part in the ACT trials following an article in the Research magazine in, I think, Q4 of 2010. Obviously it is a work in progress but at least someone is working on the psychological aspect.

    Val

    Valerie
    Participant
    Posts: 166
    Joined: 15/09/2010
    #88499
    Re: Target MD

    Thanks, Vicki and Val.

    Val, are you happy, if space allows, for me to use your comments in the magazine? And if so, would you prefer to be anonymous or may I attribute them to you?

    Thanks again – these comments are so helpful.
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
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