Forum Replies Created
March 29, 2011 at 10:55 am #78485Re: Younger MD sufferes, advice and a friendly chat!!!
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!
lAURAMarch 18, 2011 at 10:24 am #78480Re: 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!!!!February 7, 2011 at 2:54 pm #77944Re: POLL – Non-invasive Ventilation
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!!!!January 11, 2011 at 9:57 am #78470Re: Younger MD sufferes, advice and a friendly chat!!!
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!!!January 11, 2011 at 9:53 am #78469Re: 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.January 10, 2011 at 5:51 pm #78464Re: Younger MD sufferes, advice and a friendly chat!!!
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???
lauraxxJanuary 7, 2011 at 1:10 pm #78461Re: Younger MD sufferes, advice and a friendly chat!!!
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.
lauraxxJanuary 7, 2011 at 1:06 pm #78440Re: 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!!!
LauraxxxJanuary 6, 2011 at 11:40 am #77931Re: POLL – Non-invasive Ventilation
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.