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Author |
Replies |
Last Post |
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Tue Jul 17, 2007 5:36 pm |
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4 |
| Fri Sep 7, 2007 9:14 pm |
| Lizzys Nana |
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| i am due to have a baby with SMA type 1 in september and was wondering if a cough assist machine is suitable for type 1, also has anyone had any experience with using them for type 1? |
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Thu Jun 7, 2007 10:12 pm |
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0 |
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| We have been told by christmas our daughter age 4 sma type 2 has got to have spinal surgery and every 6 months have the spinal rod lengthened. has any one else gone though this so young? need help and advise as i am scared! from her loveing mum |
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Sat Apr 28, 2007 4:24 pm |
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1 |
| Tue May 15, 2007 1:00 pm |
| Christopher J Cusack II Esq. |
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I may be looking at residential Care (or I may be pigeon holed into Nursing care) because I am having such a hard time finding PA's..
Worse case scenario - yes, hence all the "maybe's" - but still a more possible outcome than the distant blur it used to be on the horizon.
I live alone and rely totally on PA's. I have Type II SMA and have been a wheelchair user since 9 - 11 yrs. I use a ceiling track hoist and cpap, a powered chair and am very overweight. - Don't you just love me already !
Geography it seems (or even postcode lottery syndrome) plays a large part in the lack of candidates - let alone suitable candidates who apply for this job. I am in the industrial urban backwoods of Greater Manchester. A 'care job' here has the same target population as the mills did 60 years ago.
However, in looking around the 'net I see, not surprisingly that to move out of the community where I would prefer to stay, into a 'home', serves up just as many pitfalls and empty facilities.
Can you prove me wrong ? |
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Wed Apr 25, 2007 2:09 pm |
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6 |
| Wed Jul 25, 2007 10:22 am |
| Gareth |
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| Does anyone have experience of their type 1 baby moving from bottle feeding to NG feeding and then back to botle feeding? even if it's perhaps only 1/2 bottles daily for comfort? Speech therapist says swallow is safe at present. Any experience of the above would be welcomed. |
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Fri Apr 13, 2007 7:01 pm |
| Christopher J Cusack II Esq. |
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1 |
| Fri Apr 20, 2007 8:39 pm |
| Christopher J Cusack II Esq. |
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| Has anyone ever heard of or has tried cytolog? If so where can it be bought in the UK? |
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Tue Feb 27, 2007 9:15 pm |
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1 |
| Wed Mar 7, 2007 11:38 am |
| alison |
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| Our daughter has SMA type 2 and bone density problems, she has been put on infusions of Pamidronate but has reacted to them. The Doctors are trying to track down anyone else with sma who has used this drug to see if this is a reaction that is just Ellie ,or if it is a reaction that is common to to people with sma. Any replies would be gratefully recieved |
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Wed Feb 7, 2007 11:42 am |
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2 |
| Fri Aug 24, 2007 9:28 pm |
| indy |
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| Does anyone currently use, or has experience of using,the matrix seating system in their wheelchair.I have been contacted by a therapist at whizz kidz regarding this issue who would appreciate any feedback good or bad. Thanks |
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Wed Jan 31, 2007 2:18 pm |
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14 |
| Sat Mar 10, 2007 6:44 pm |
| Vivien |
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Hi
I'm a 29 year old male with type 2 SMA and throughout my life I have never slept well throughout the night. I need turning and moving every 30 minutes to 1 hour. I have very bad scolosis of the spine and wear a spinal brace during the day but not at night.
I don't sleep well mainly due to discomfort and wanted to know are their any mattresses that anyone could recommend? I sleep mostly on my right hand side and flat on my back. I get sore on my side after a while and would like something that would take the pressure away. I have tried the ripple mattresses which inflate and deflate but I don't like them because it knocks my sense of balance and I don't feel safe. I weigh about 29kg as I'm very thin.
Also has anyone ever had such severe sleeping problems? Sometimes I also get a sinking type of feeling at night but not often. Does anyone also get that?
I'm sorry for so many questions but I would be very grateful if anyone could help. |
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Mon Dec 4, 2006 10:32 am |
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1 |
| Wed Sep 19, 2007 5:55 pm |
| Lizzys Nana |
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| Hi does anyone have any information on a link with sma and lactose intolerance. I have sma 2/3 and have recently developed all the symptoms of lactose intolerance (never been a fan of milk) with chronic cramps even after eating cereal with milk. (awaiting confirmation it is this) so just wondered, im 31, is this just one of those things or does sma play a part because the intolerance is an inability to break down lactase?? |
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Wed Nov 22, 2006 10:06 pm |
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1 |
| Mon May 19, 2008 9:53 pm |
| JoJo |
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| hi my 17th girl elise type 2 has recently has a spurt and she is finding it harder to do things its more obvious now its kicked in so fast its scary and devastating to watch she cannot lift her arm up past her shoulder now or reach for things like she used to she lost the abilty to roll all the way and push up to crawling months ago so its like shes deteriating and i got told shed stabalise can anyone offer advice is this the normal path??? im sorry if it sounds silly but im just so worried :( and new to all of this xxxx |
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