Viewing 16 posts - 1 through 16 (of 16 total)
  • #139223
    Looking to make friends

    Hi,

    I am a 44 year old male who was diagnosed with CMT in 2012.
    I live just outside Cambridge/UK and am very interested in meeting/communicating with people who are in a similar position.

    I’d love to hear from you.

    Best wishes
    Jules

    Stormtrooper
    Participant
    Posts: 0
    Joined: 17/06/2016
    #139330
    Reply To: Looking to make friends

    Hi Jules and welcome to the forum

    please have a look around and post :)

    For safety I have had to remove your personal Email address.

    Our site admin at MDUK are investigating getting back the forums Private message service back but this may take some time.

    I have CMD Rigid spin SPN1.

    regards

    Cat

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #139335
    Reply To: Looking to make friends

    Hi Jules

    :welcome:

    I’m 38, with UCMD. Like Cat says, we are hoping to get the private message function back soon. We are a friendly bunch, feel free to chat on here of course. Good to have you on board.

    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
    #139336
    Reply To: Looking to make friends

    Hi Cat!

    Thanks for getting back to me. So, when were you diagnosed and where do you live in the UK?
    I’m not sure what type of CMT I have?

    This is my first communication with someone in a similar situation to me (and I really appreciate it)!

    Kind regards
    Jules

    Stormtrooper
    Participant
    Posts: 0
    Joined: 17/06/2016
    #139339
    Reply To: Looking to make friends

    Hello Jules,

    I’m Shevvy and have an unspecified type of Limb Girdle MD but am hoping to get a precise diagnosis at some point. It’s taking years though! I am down the M11 from you, junction 7 I think. I’m interested in hearing from others who have MD and how they get on with life. The forum is an interesting place to be in touch with others and to share experiences. :welcome:

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
    #139340
    Reply To: Looking to make friends

    hi all.

    Im up in scotland, I was first diagnosed with Md at about 8-9 but only recently got a firm diagnosis for the CMD. rigid spine SPN1.

    Im 34. used a night vent since 95. using it part of day now. only really walk in house now with high level lean elbow walker frame. Currently use a scooter or attendant pushed wheelchair outdoors. and a powerchair with riser for going to work

    My new adventure is that im waiting for My first Drive from Wheelchair car on account that I can no longer sist to stand to exit the care solo

    Im also in the looong :roll: process of trying to get some carer budget from council. :bang: :bang: :bang:

    Cat

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #139470
    Reply To: Looking to make friends

    Hi Shevvy,

    Thanks for being so welcoming (everyone out there)!

    I’m just starting to come to terms with my condition and what it may mean for me in the future..
    Friends and family are incredibly supportive but I am so glad I’ve discovered you guys.

    ttfn
    Jules / Stormtrooper

    Stormtrooper
    Participant
    Posts: 0
    Joined: 17/06/2016
    #139471
    Reply To: Looking to make friends

    yes family and friends are can be great but its nice to identify. vent rant and grow within a group of people in the same situ.

    sometimes we just need to moan without it being an issue or upsetting the circle around us.

    cat

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #139510
    Reply To: Looking to make friends

    Hi,

    Wise and kind words ladies. Thanks.

    Well, ‘looking to make friends’ is where I am @ currently!
    Emailing, texting, skyping & meeting – it’s all good.

    I want to meet you all…….

    Anyone up to anything interesting this weekend (weather permitting)?

    Jules

    Stormtrooper
    Participant
    Posts: 0
    Joined: 17/06/2016
    #139511
    Reply To: Looking to make friends

    weather permitting I’m planning a road trip up to Loch Lomond, a finale road trip in the old car before new ones delivered.

    What’s in your agenda?

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #139512
    Reply To: Looking to make friends

    Hi,

    Is that Cat? Have fun in LL. New car eh? Cool!

    After my usual Saturday morning washing chores, I’ll be venturing into town (Cambridge) to do some essential clothes shopping. Maybe then see ‘girl on a train’ that everyone is talking about or grab some food and see who’s about….
    Sunday should be nice and quiet; just the way I like it. Venture out to one of the numerous pubs in St.Ives for lunch. But apart from that I hope to take it very easy.

    (apologies for rambling somewhat)

    Jules

    Stormtrooper
    Participant
    Posts: 0
    Joined: 17/06/2016
    #140241
    Reply To: Looking to make friends

    Hi,

    Is that Cat? Have fun in LL. New car eh? Cool!

    After my usual Saturday morning washing chores, I’ll be venturing into town (Cambridge) to do some essential clothes shopping. Maybe then see ‘girl on a train’ that everyone is talking about or grab some food and see who’s about….
    Sunday should be nice and quiet; just the way I like it. Venture out to one of the numerous pubs in St.Ives for lunch. But apart from that I hope to take it very easy.

    (apologies for rambling somewhat)

    Jules
    …………………………….

    I fancy seeing Miss Peregrine’s Home for Peculiar Children. or Dory lol. Waiting on a new VW caddy :D

    Cat

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #140624
    Reply To: Looking to make friends

    So Cat, are you a fan of the movies? I am in a big way. I haven’t been to the cinema in a while though, so not sure currently what’s on! Cambridge VUE multiplex has got these new reclining seats that are fantastic. The re-designed seating layouts are great for those of us with mobility issues!

    Jules

    Stormtrooper
    Participant
    Posts: 0
    Joined: 17/06/2016
    #140625
    Reply To: Looking to make friends

    hi jules,

    dont go all that often. as im a chair user the new VIP design of seating has limited if i can attend. or often means i need to sit alone. but yes. some moves are just better on the big screen. Im looking forward to the next star wars movie out December 12th

    cat

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #140626
    Reply To: Looking to make friends

    Hi Cat,

    Is it a bit of a logistical issue for you; planning a trip to the cinema? Do you have supportive friends to go with? Is it a long trip there and back?
    I agree with you about movies on the big screen. I love the whole experience of cinema-going. I can even stand people insisting on having their mobiles on! Human interaction is slowly becoming less if you ask me. Interaction is what makes us human….

    So what’s your favourite film?
    And a star wars fan too? Me too, although I’m not so sure about ‘Rogue One’? I think they never should have made any more films after Jedi. Then again you are probably younger that me. I’m 44 and saw Episode IV when I was a nipper.

    Jules

    Stormtrooper
    Participant
    Posts: 0
    Joined: 17/06/2016
    #140628
    Reply To: Looking to make friends

    no, not a big deal to go. norm prefer during the week when its quiet.

    Dont really have a all time fav film. but action adventure is my fav followed by horror.

    Jedi is my fav Star wars. love the ewoks lol last ‘new’ one was ok. worth the trip

    cat

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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