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Listing Questions 1 to 10 of 25 | |||||
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Tue Jul 15, 2008 10:32 pm |
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| my son was diagnosed with sma type II at the age of 19 months. But after talking to a few people about the strength he has and the mobility he's still got i'm woundering if it could be type III. My son walked at 10 months old holding on, i had no concerns about his mobility as he could climb the stairs and get about aswell as anyother healthy 10 month old. when he got around 12 months old i noticed that he'd given up walking altogether and just crawled every where, he was still a good climber, still getting up the stairs and i still didn't have any concerns about him!! i just thought he was lazy and couldn't be bothered!! but when it came to him being 18 months i took him to the doctors to get reasurance that everything was ok. after 4 weeks we got the diagnoses that it was sma. The doctor at the hospital told me it was type II but i really don't believe that he has had much contact with sma and could be wrong. please could anybody help me that has type III so i could compare my son to themselves. or anyone who has been diagnosed with type II and walked. my son is now 21 months he can crawl, stand holding on and get up the stairs (although slowly.) Is there anybody that can do simular to my son, thankyou for reading my question. | |||||||||
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Fri Jun 13, 2008 8:41 pm |
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| this is the first time ive done this dont know what in doin.Its that time of year again when all the kids are outside playing and george is having fun but stranded if someone isnt with him or he falls over. george is 3 yrs and has type 3 he can walk but is better holding on to somthing like a wall or someones hand. we push him on a bike or pushchair or he has got a electric toy quad bike which is a bit more independant. he waks with a rolling gait has peidro boots. waiting for new ones with higher support. he loves swimming lessons, upper body strenth is really strong actually. What can I do to help him get around outside i feel so sad but joy at the same time of course!!!!!!!! | |||||||||
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Fri Jun 6, 2008 9:59 pm |
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| My daughter has type 3. She has recently started on a pilot trial taking salbutomal to see if it will increase her muscle strength. I would be really interested to hear of anyone else who is taking/has taken salbutamol. What affects has it had? What do you think of it? etc | |||||||||
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Mon Jan 7, 2008 3:10 pm |
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| Im 23 and have some form of SMA but the docs were never sure which one as they said I am baffling. I was diognosed ages 3 I think. The Docs told my Parents that I would be confined to a wheelchair by the time I was 7, so you can imagine their faces when i WALKED into their office aged 10. They then said that by the time i was 14 I would be confined to a wheelchair. WELL.... Like I said I am 23 years old, I can walk fine, I cant do long distance and have to try and avoid steps but apart from that its all good. I dont use a wheelchair, in fact i REFUSE to use a wheelchair!!. I work full time as an Administrator in a Youth Centre which I love! Iv just applied to learn to drive but it may take a while as I need a few adaptions so Im searching the web for funding at the mo which is easier said than done :( The way i look at things........ So I cant do everything my mates can do..who cares, they dont. In fact you should see us all after we have had a few bevvies and they are trying to help me up the stairs. Its hillarious!!! Im not stupid tho, I know I could get worse as i get older, but I'l cross that bridge when i come to it. For now Im just guna live my life, my way!! | |||||||||
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Tue Nov 20, 2007 6:50 pm |
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| Hi, this is my first time on this site and wondered if it is the sma that is causing my incredible back pain.When i sit up straight it feelslike there is an enormous weight pressing down on my spine(its from the neck down) it feels as if the spine is being crushed with severe discomfort around the ribs. Also at night it feels like i have weights on my chest crushing the bones, and it is harder to breath laying flat. Any advice would be most welcome. I had polio as a child so my spine wasn't strong to begin with. | |||||||||
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Fri Sep 21, 2007 3:30 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@jtsma.org.uk 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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Mon Aug 27, 2007 10:13 am |
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| I had a child diagnosed with SMA Type 1who died 4 months ago at 8months.I find hard to understand how can an adult be 'perfectly well' all his life and suddenly be diagnosed with type III. Are there any syptoms beforehand? | |||||||||
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Thu Aug 23, 2007 1:16 am |
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| Hi, my daughter Aimee has type 3. She is 9 now, attends mainstream school & doing very well. Aimee has a stairlift which has proved fantastic in helping her gain access to her bedroom & uses a wheelchair for long distance walking (though her steering is awful)! The question I'd like to pose is, Aimee's physio has noticed that her spine has started to curve quite considerably within the last year...though it is not "fixed" with correct posture. Aimee walks on tiptoe whenever she gets the chance, something I'm always repremanding her for, as I fear this may be contributing to her scoliosis. Aimee like most children with type 3, is extremely on the lean side, although she eats like a horse! She wears night splints to keep her ankles loose, but her balance seems to be worsening & her "rolling gait" is very noticeable, also, she has really slowed down with her walking. She has an appointment with her consultant (Neil Thomas) at Southampton Gen in Nov. In general, her health is excellent...rarely catching a col, though when she does, it knocks her for six! I feel most anxious about her scoliosis & how her mobility has declined. I thought this was something that may present itself during puberty...I really feel she is a long way from that, so I'm hoping there is someone out there who can possibly shed some light on as to why this is happening so soon? Aimee has daily physio, goes swimming, horse riding, good balanced diet & a very active life. I must admit, I am really concerned, so any thoughts/opinions, would be gratefully received. Donna Grayson | |||||||||
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Fri Mar 16, 2007 1:20 pm |
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| My 25yr old son Darren has SMA type 111, has low weight and is skinny. We are looking into using Tolerex or UK equivalent for muscle and weight gain. | |||||||||
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Wed Mar 7, 2007 1:31 pm |
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| having just recently been diagnosed with sleep apnia and been issued with a c pap machine, i was wondering if anybody had any tips for actualy falling asleep. i am finding it very difficult to get to sleep with the mask and the wind up the nose. i have the adult onset type of sma. and apart from a few mobility issues and general weekness i am not so bad. if i can just get my sleep sorted out, it would go a long way to making me feel... human,,, again. thanks rebecca | |||||||||
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