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Say "hello" here

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  • January 30, 2011 at 5:26 pm #75905
    Re: Say “hello” here

    A big hello to Jon and Gerry and anyone I may have missed.

    Paul58
    Participant
    Posts: 85
    Joined: 05/10/2010
    January 31, 2011 at 5:57 pm #75902
    Re: Say “hello” here

    Hi

    Thought it was about time I joined in with all this chat going on here. :)

    I’m Mark and live with Duchenne MD in the beautiful city of Edinburgh. This is now my 40th year which is just incredible, all things considered :!: I think it makes me the oldest DMD person in Scotland.

    I’ve been on tracheotomy ventilation since 1996 and live independently in my own flat supported by a small team of Personal Assistants which I employ. I use a powered wheelchair and have an adapted which means I’m able to have a full active and varied life. I have many interests, computing, photography, visual art, cinema, theatre, socialising with friends, travel and animals. (ie. my cat Wisnton and my assortment of fishes.)

    Some folk may have met me in person or on facebook already but I hope to meet more new people here. 8-) Please if anyone would like to ask me anything then just do, no holes barred. :o

    ventboy
    Participant
    Posts: 19
    Joined: 31/01/2011
    January 31, 2011 at 7:54 pm #75903
    Re: Say “hello” here

    Hiya Rentboy..sorry! I mean ventboy! ;)

    I am in Arbroath and i know where Edinburgh is, so maybe when i get my mobility car on the 9th of Feb i could come over and annoy you!

    Seriously mate, i am a Becker MD type and i am very much in awe of you in your 41st year as a Duchenne sufferer, i am sure my feeble moaning in the past is very much unjustified and i feel humbled without even knowing you.

    You are very welcome on these boards and i am extremely glad there is another from the right side of the wall here to back me up! If you fancy a blether i am always up for it. ;)

    Take care mate
    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    January 31, 2011 at 8:36 pm #75904
    Re: Say “hello” here

    Hello ventboy, welcome to the forum :-)

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    February 1, 2011 at 12:21 pm #75906
    Re: Say “hello” here

    Hello Mark!
    Nice to meet you. Your statement sort of catch my eye because it reminds largely of mine. I do have a very similar kind of arrangement of assistants/nurses on the exception that I don’t employ them personally. Well, keep on going and perhaps we’ll bump into each other on this forum. :)

    hartwig
    Participant
    Posts: 27
    Joined: 01/12/2010
    February 1, 2011 at 1:28 pm #75907
    Re: Say “hello” here

    Hello, hello, hello :)

    I, Disabled Bloke
    Participant
    Posts: 540
    Joined: 29/10/2010
    February 1, 2011 at 5:03 pm #75908
    Re: Say “hello” here

    Hi Mark, yeh another scot.. welcome to talk MD

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    February 1, 2011 at 6:56 pm #75909
    Re: Say “hello” here

    Hi Ventboy,

    and Winston of course.

    Feel free to vent at any time, we will understand.

    When you have time we would love a picture od
    winston in thwe pets section.

    "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
    February 1, 2011 at 7:13 pm #75910
    Re: Say “hello” here

    Hello ventboy, welcome aboard.

    Paul58
    Participant
    Posts: 85
    Joined: 05/10/2010
    February 8, 2011 at 4:27 pm #75911
    Re: Say “hello” here

    Hi everyone :)

    I’m Catherine, I’m 20 and I have congenital muscular dystrophy with severe scoliosis. I’m from Wirral (near Liverpool), but am currently away from home at Lancaster University, where I’m in my second year studying English Language. I’m a full time powered wheelchair user, so am supported by a team of 2 volunteers and 1 PA who cover the 24 hours care with me.

    In my free time, I like watching TV and films, going to the cinema, shopping and socialising with friends. I’m also involved in Trailblazers; I’m really passionate about what we do and what we can achieve by working together, and this is the line of work I’m interested in doing after uni.

    I look forward to meeting you all, feel free to reply or message me if you have any questions :)

    catherine
    Participant
    Posts: 24
    Joined: 08/02/2011
    February 8, 2011 at 4:40 pm #75912
    Re: Say “hello” here

    hi Catherine

    Welcome to talk MD.. :D

    take care

    Cat

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    February 8, 2011 at 5:03 pm #75913
    Re: Say “hello” here

    Welcome to the forum Catherine.

    I too have CMD and severe scoliosis – also studied English Language at university! I went to Essex as I didn’t want to be too far from home but considered Lancaster as well, it has a really good Lang/Ling reputation doesn’t it?

    Good luck with your studies and look forward to hearing more about your trailblazing activities.

    Sarah :)

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    February 8, 2011 at 6:23 pm #75914
    Re: Say “hello” here

    Hi Catherine, welcome to the forum

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    February 8, 2011 at 7:50 pm #75915
    Re: Say “hello” here

    Welcome Catherine.

    Paul58
    Participant
    Posts: 85
    Joined: 05/10/2010
    February 9, 2011 at 3:23 pm #75916
    Re: Say “hello” here

    Hello to our intrepid brave new-comers … if you are a novice to this style of board we have some “FAQ” instructions in the Hints & Tips section.

    We look forward to getting to know you all better, your opinions are valuable :)

    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
    February 9, 2011 at 3:30 pm #75917
    Re: Say “hello” here

    Hello & welcome ;)

    I, Disabled Bloke
    Participant
    Posts: 540
    Joined: 29/10/2010
    February 9, 2011 at 10:14 pm #75918
    Re: Say “hello” here

    hi everyone sorry been away for such a long time.. laptop broke down just got a new one :)

    thanks for all the replies regarding driving… thanks cat willl have a look at the website..

    hi and welcome to all the new comers :)

    will be going away on holiday next week for 7weeks

    take care everyone

    byeeee x

    saniyah
    Participant
    Posts: 14
    Joined: 12/12/2010
    February 14, 2011 at 11:16 am #75919
    Re: Say “hello” here

    Hi Catherine

    I’m glad you’ve joined the forum. We should probably promote it to more Trailblazers. What do you think?

    I’m looking forward to catching up on Wednesday. See you in Parliament.

    Bobby

    bobby
    Participant
    Posts: 7
    Joined: 13/10/2010
    February 20, 2011 at 6:56 pm #75920
    Re: Say “hello” here

    hi guys

    Does anyone know how to create a new blog over on the main MD or trailblazer sight.

    I have been looking at it for about an hour and apart from commenting on a blog that’s on, I cant see new blog button. :oops:

    I am preparing a complaint to the peeps at the SECC Glasgow in regards to their minimal accessible seating at concerts.
    And would like to hear views or comments about this venue and the Wheelchair platform before I mail it.

    I have tried 6 times this year to get tickets but the disabled areas (only about 50 seats and not a terrific view) have been sold out real fast.
    Tried to get Dolly Parton tickets(don’t laugh) and the accessible area was sold out by the time I was able to get to talk to an operator. (within 10 min) :cry:

    So if anyone has any comments or experiences of going to the Glasgow SECC let me know and I will include it in my letter.

    Would Also like to hear from anyone who has gone to a concert(not just the SECC) and had seats on the main floor. I.e Have they been okay about wheelchairs being on the main floor taking up extra room.
    Did they let you park in the isle?
    Was their a problem with being able to see the stage due to people standing up to dance etc?

    cat

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    February 21, 2011 at 2:10 pm #75921
    Re: Say “hello” here

    @catatude wrote:

    Would Also like to hear from anyone who has gone to a concert(not just the SECC) and had seats on the main floor. I.e Have they been okay about wheelchairs being on the main floor taking up extra room.
    Did they let you park in the isle?
    Was their a problem with being able to see the stage due to people standing up to dance etc?

    It’s hard to come up with a definitive response, as it entirely depends on the venue. Different music venues have different policies on this. I’m regularly on the floor at my most local venue, as there’s no other option. Sometimes there’s a problem seeing, sometimes it’s ok… depends largely on the act, and whether you can get yourself a good position to start off with.

    Many venues do have main floor seats that are removable when a wheelchair user needs the space. I suspect that a lot of places wouldn’t like parking in the aisle, as they’d reckon it could be a fire hazard.

    It might be worth you getting in touch with Attitude is Everything, who campaign specifically on these issues, and who may well have info about the SECC through their mystery shopper scheme. I’ve just mentioned them in another thread, weirdly, but their website is here: http://www.attitudeiseverything.org.uk/

    petered
    Participant
    Posts: 564
    Joined: 24/01/2011
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