February 21, 2011 at 4:37 pm #75922Re: Say “hello” here
To blog on the Trailblazers website I recommend the following:
1) Log in to website with your username and password
2) Go to ‘Get Campaigning”
3) Go to “Blogs” on the left hand menu
4) You should see “Add a blog post”
5) Add your blog
Hope that helps, if not drop me a line at email@example.comParticipantPosts: 7Joined: 13/10/2010March 1, 2011 at 2:30 pm #75923Re: hello valerie
my name is linda i have been likened to mitochondrial myopathy when i was 36 i am now 53 and no closer to a firm diagnosis this disease affects my life (what diease dont ) and can feel very frustrated with doctors lack of understsnding . this is the first time for me to be on this site so dont know my way round yet i am also new to computers having only just received it as a xmas present from my children but i had to say hello to a fellow sufferer also for the 1st time dont know anyone with a muscle condition i sound pretty green dont i never mind lindaMarch 1, 2011 at 3:25 pm #75924Re: Say “hello” here
Welcome to the forum
What lovely children you have got to get you a computer for Christmas. I’m sure you’ll soon find your way round it. It must be very frustrating not to have a confirmed diagnosis. Is your consultant still looking into it for you? How are you affected by MM?
If you would like to compare notes PM (private message) me your email address and we can chat.
ValValerieParticipantPosts: 166Joined: 15/09/2010March 1, 2011 at 5:12 pm #75925Re: Say “hello” here
Hi Linda, welcome to TalkMD.
I am sure you’ll pick things up as you go on the forum but if there’s anything you or others are not sure about, AMG has produced some great guides to how it all works which you will find in the Hints and Tips section.
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: 05/03/2015March 3, 2011 at 6:43 pm #75928Re: Say “hello” here
hi to everyone who welcomed me into this forum and thankyou for doing so i have felt very isolated being the only one i know with muscle disease i know im not the only one! there are quite a few of us around and also some upsetting tales to be told. thankyou valerie for your message when i know how to send my e mail privately to you i will just hope you dont regret it ihave loads of interests (even tho i cant do them so much) i like having a laugh playing darts crosswords t.v but not soaps talking etc linda xMarch 4, 2011 at 11:43 am #75929Re: Say “hello” here
….. when i know how to send my e mail privately to you i will just hope you dont regret it
Linda, I have posted some FAQ, walk through type threads for novice board users. They are in the “Hints and Tips” section. Here is a quick link to the one for sending private messages Private Messaging The easiest method is the last paragraph of the very last post.
Let me know if you have any problems or confusions, I will gladly help and tweak the help guides.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015March 4, 2011 at 5:00 pm #75930Re: Say “hello” here
I’m Lisa and I’ve just joined the Muscular Dystrophy Campaign as Senior Policy and Campaigns Officer. I’m working in the Policy and Campaigns team, splitting my time between working with the Muscle Groups and campaigning nationally to make sure the voice of people with muscle disease is heard by government.
I just wanted to pop by and say hello – I look forward to talking to you on this forum and hopefully meeting some of you in person at an event soon!
LisalisajamesParticipantPosts: 2Joined: 04/03/2011March 4, 2011 at 10:38 pm #75931Re: Say “hello” here
I have Limb-Girdle type 2a MD/Calpainopathy from a deletion mutation.
I would be very interested in hearing from anyone who has found anything that helps in any way.
I would also like to meet some people with LGMD2a and compare notes on progression and managing symptoms.ChagrinParticipantPosts: 130Joined: 04/03/2011March 5, 2011 at 12:21 am #75932Re: Say “hello” here
Hi Chagrin and welcome.
There are a few members here with Limb Girdle who I am sure will make contact.
I am glad of the travelling I did in my teenage years and the tall ship sailing I did in later years, those memories are precious.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015
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