April 29, 2013 at 4:09 pm #74824Target MD
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!
RuthApril 30, 2013 at 6:33 am #88478Re: 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!".April 30, 2013 at 8:40 am #88480Re: 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.
RuthApril 30, 2013 at 2:21 pm #88481Re: 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.
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.comAMParticipantPosts: 4,751Joined: 05/03/2015May 16, 2013 at 10:06 am #88485Re: Target MD
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
RuthMay 16, 2013 at 11:30 am #88486Re: 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.
stefanMay 16, 2013 at 11:32 am #88487Re: Target MD
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!".May 16, 2013 at 11:52 am #88488Re: 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
RuthJune 19, 2013 at 12:07 pm #88492Re: 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?cripticParticipantPosts: 307Joined: 15/03/2011June 20, 2013 at 12:35 pm #88496Re: 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.
RuthJune 20, 2013 at 3:47 pm #88498Re: 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.
ValValerieParticipantPosts: 166Joined: 15/09/2010June 20, 2013 at 3:50 pm #88499Re: 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.
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