LBizzey

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Viewing 17 posts - 1 through 17 (of 17 total)
  • #78489
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Hi Kia,
    I understand where your coming from!! I feel that most of the time the consultants treat you like an animal!! Anyway………….

    Lauraxx

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78485
    Re: Younger MD sufferes, advice and a friendly chat!!!

    @catatude wrote:

    Do you think streching helps :?: Is it something I should try asking for again :?:

    Yes i think so!! My mum is always telling me that i need to my streches so that i will still be able to walk when i’m older!
    I have private physio and osteopathy becasue of the fact that i’m not in a wheelchair they don’t think i need it as much! But i know how lucky i am to have private osteo and physio. i thjink that mabey Osteopathy would help!! LIttle did i know that when i was little i was in so much pain, then when i was 8 i started having osteopathy and i was releved of the pain and tightness, its also a lot less phyically tireing than physio!

    lAURA

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78480
    Re: Younger MD sufferes, advice and a friendly chat!!!

    I don’t know whether any of you have to do calf streches. I do. I’ve always found it boring but recently i’ve found that if i put my ipod on then i do a song on each leg and its more enjoyable!!!!

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #77944
    Re: POLL – Non-invasive Ventilation

    @catatude wrote:

    it stinks of cigaretts smoke. have been running it outside all evening to try and clear it, have even taken out the filters but its still there. not going to be a comfortable night till I can retrieve my own old spair one..

    you would have thought that if someone needs a vent for their poor lungs then they wouldn’t smoke!!!!

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78764
    Re: Spinal Fusion

    Oh Cat that sounds so bad!! i have scoliosis but it hasn’t changed in 6bmonths and the doctor said it wasn’t sierouse enough to opperate yet which i’m VERY glad about!!!

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78473
    Re: Younger MD sufferes, advice and a friendly chat!!!

    :lol: :lol: :lol: :lol: :lol: :lol:

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78462
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Hi
    of couse 24 counts!!!! lolage :lol: :lol: :lol: :lol: :lol: :lol:

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78470
    Re: Younger MD sufferes, advice and a friendly chat!!!

    hi cat,
    oh dear you really have had a hard time !!! i love my bi-pap machine now and couldn’t live without it! did you have trouble with masks when you first got it?? i have a scar on my nose where the mask broke through the skin downto the bone but it’s getting better and i have found a mask that is better!!!

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78469
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Well, doing exersises every day is a bore but i know it does help. i have to have private physio and osteo. i have a lot more energy now i have a bi-pap!!!! i agree that peoples conditions do vairy!!! i have scoliosis and it hasn’t moved in 6 months so that should be a good sign.

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #77934
    Re: POLL – Non-invasive Ventilation

    hi i have rigid spine syndrome its part of minicore myopathy

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78464
    Re: Younger MD sufferes, advice and a friendly chat!!!

    hi mark
    when i was in year 3 aged about 7 i was preparing for my first ballet exam, my ballet teacher noticed i couldn’t jump off the ground. we went to have tests when i was 8 and they did a bloodtest and i was told i had muscular dystrophy. i have physiotherapy and osteopathy every other week which helps relive the tightness in my muscles.
    last year i went onto a bi-pap machine and use it every night, i love it and would’nt dare sleep without it!! do you have a bi-pap machine???

    lauraxx :D

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78467
    Re: Younger MD sufferes, advice and a friendly chat!!!

    Thank you Mark!! It’s lovely to finally hear from someone with minicore myopathy!! How old were you when you were dyagnosed?

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #77935
    Re: POLL – Non-invasive Ventilation

    Thank yo i’ll try the vasiline!! What type of MD do you have
    lauraxxx :D :D

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78439
    Re: Singing

    yes i agree!! it’s very soothing!!

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78461
    Re: Younger MD sufferes, advice and a friendly chat!!!

    hi
    thanks i just thought that if there was any body newly diagnosed or younger than me or just going onto a bi-pap machine then its always nice to have someone else to chat to about it.
    lauraxx

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #78440
    Re: Singing

    hi I have singing lessons at school and i have passe my grd 1 singing exam! i love to sing although i’m not completely in tune allthe time. i find the long notes hard!!!! i have had a letter from my doctor that was given to the royal associated board of music to inform the examiner about my condition. i think sleeping with a bi-pap machine helps!!!

    Lauraxxx

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
    #77931
    Re: POLL – Non-invasive Ventilation

    Hi
    i’m 14, I’ve been using a Nippy 3+ for a year now, it was devestating to start with because i felt i was loosing my freedom at night, i have a scar in the bridge of my nose from where the first mask i had broke the skin right down to the bone. i love my nippy 3+ now, i’ve been able to have 12 sleepovers in total with it and i’ve been to friends houses with it and had no problems. i now have a naisle mask and althigh it does give me a few little cuts inside my nose, it is the comfyist i have tryed and i’ve tryed a lot of different ones. there are nights when i wish i could just go to sleep without it but i know that i wouldthen wake up eith terrible headeches and feel really ill. I have to admit i do driblle with my mask on at night!!

    I’m not in a wheelchair and my strain is quite mild, but it still affects me and i find getting around school with the stairs quite challenging.

    Lauraxxx

    LBizzey
    Participant
    Posts: 18
    Joined: 04/01/2011
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