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Sun Aug 10, 2008 5:49 pm |
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hi,
at the begining of june i had awfull pain attack, which turned out to be caused by my stomach and surrounding muscules. after few more tests it turned out i have hiatal hernia and esophagus narrowing. i`ve finally had visit at the specialist last week. he said he would opt for surgery, but he`s not sure how about me dealing with aneasthesia. that`s why i have question - are there any special procedures for patients with sma, preparing them to operation and dealing with post-op situation? i know everyone is diffrent, but i`d appreciate all ideas. |
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Fri May 16, 2008 11:24 pm |
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| Sat Aug 2, 2008 11:29 am |
| katinka |
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Our daughter is 7 and scheduled for spinal surgery at Stanmore in June.
I don't know what questions I want answered I just feel I want to make sure I haven't missed anything. Can anyone fill me in, help, offer advice, etc etc!
We've spent a whole day at the hospital and seen loads of staff but somehow you just want to talk to someone who's been through it all. They started by giving us the really worrying information about risk of paralysation and yes, death,......talk about scary stuff. . . and that's the info that's stuck, I'm not sure I took much detail in after that.
Anyone help?
Steph |
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Wed Apr 2, 2008 7:33 pm |
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yes here I am again complaining about my daughter's persistent night coughing (she is type 2 aged 7) - she is driving us all mad - and very exhausted!! anyone any new ideas? the brompton seem to have no ideas. . . she is on bipap all night (with and without humidity), bed tilted up as far as poss, they are proper coughs and not in her head. . . but she needs help to shift them . . . at least for an hour until the next batch comes along........ :-(
any new ideas gratefully considered........from her tired and grumpy mum |
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Sat Jan 5, 2008 9:40 pm |
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| Fri Feb 29, 2008 5:12 am |
| Rosserbunch |
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| Hi, Joan here, 41yrs old Type 2 Individual contact and have been finding it more difficult recently lifting my arms up and down when eating. I found that higher tables have helped - Ikea are great for height adjustable ones and I was also lucky enough for my work to make me some that suited my arms. I know can rest my arm on the table and push into in, hense lifting my hand/wrist up and down to my mouth. I have now become adjusted to this but it has now caused me problems when eating out in restaurants as generally tables are not that high. Have thought of getting some attachment that could be clipped onto either my wheelie or a table that I could rest my arm on and it would do the same job. Not sure who could make this??? Any other idea`s or tips??? |
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Fri Sep 21, 2007 3:29 pm |
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JTSMA Chair Max Huxham has been recruited as a patient group representative onto the TREAT NMD Steering Committee for UK Clinical trials. This is for the proposed clinical trial with the new European TROPHOS drug specifically designed for Types II & III SMA (http://www.trophos.com/),.
It would be really useful to be able to collect some of your views on the general concept of new drug development for SMA.
So if you would like to help you can simply send us an email answering these three questions.
1. How do you rate the importance of clinical trials for SMA - very important / fairly important / not important / no opinion
2. What do you consider to be the most important use for a therapeutic drug in SMA - for example; improvement in function, strength, range of movement, prevention of further deterioration, walking, breathing etc. please explain your thoughts.
3. What is your opinion on the use of drugs which reduce the effects of SMA but do not provide a cure?
If you have any other thoughts or opinions on the matter please feel free to include those as well. All emails will be dealt with in the strictest confidence and no names will be used in any resulting documentation
Please Email your answers to Christopher Reed. [To do this - please use the 'View Profile' link in the heading for this item and then the link entitled 'Send private email to this user']
By letting us know your thoughts we help the clinicians and scientists better understand how to give the best Help for Today and Hope for Tomorrow
Thank you.
Max Huxham Chair of Trustees & Chris Reed Director of Support Services |
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Tue Jul 17, 2007 5:36 pm |
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| 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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| 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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| 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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| 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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| 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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