| Question |
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Author |
Replies |
Last Post |
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Thu May 31, 2007 2:20 pm |
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1 |
| Fri Jun 15, 2007 7:18 pm |
| Lee J |
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| I'm 17 years old with type 2 SMA and I am going on holiday to Spain with my parents in early August. Our usual carer is unable to come with us - so we are looking for someone to spend a week/10 days in the sunshine to be a companion and carer at our own expense! Does anyone know of agencies etc. or individuals that may be interested? Ideally an young male carer to give me independence away from my parents! |
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Tue May 29, 2007 2:12 pm |
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3 |
| Wed Oct 3, 2007 6:45 pm |
| monica |
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| my daughter has a permobile c400 she has had it for 7 months. has any 1 experience changing tyres (front and rear) 2 - 3 times, within the 7 months |
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Tue Mar 20, 2007 10:39 pm |
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1 |
| Wed Apr 4, 2007 2:53 pm |
| Jean |
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Hi.Can anyone recommend any particular company/model car ramps for use with a powered wheelchair (Balder F280 Junior, 140kg)? Or at least any specific features we should look for (fold-out or telescopic, etc). What worked best for you? Any comments would be very much appreciated.
It's just we are getting our first wheelchair for our daughter and have no experience at all. (We've been recommended Portaramp. Any comments?)
Many thanks for your time. |
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Thu Mar 8, 2007 4:35 am |
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2 |
| Thu Sep 6, 2007 2:39 am |
| Lizzys Nana |
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Hi,
I have a 7 month old child with SMA1 and I know that there are children out there older than 1 or 2. I am interested in talking to you to see if there is anything I should be doing to help my little girl.
I am also interested in the quality of life for these children. My daughter still eats and is pretty much a normal baby (she is just not able to hold her up head, body or pick her feet up) but she eats as normal and is pretty much normal.
Please I am intereseted in what will come next. and if there is anythig you are doing different which may be worth a try.
We have not tried any durgs at all, as our doctors has told us there is no point as there is nothing they can do for her. I feel like we should be able to do something to help.
I know I am clutching at straws but if I hear from you as to whether there is or isn't anything else to do I think it will make me feel better.
Thank you
Roslyn |
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Wed Mar 7, 2007 8:11 am |
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0 |
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Hi,
I am a mother of a DD wo is 7 months old living with SMA 1. I am looking for other people who are interested in sharing ideas and just having a chat about life with SMA1.
Please contact me. My Husband and I are very positive and I would be interested to hear what others are trying out there.
I have my DD on a veagan diet and I am currently seeing a natropath/chiropractor |
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Tue Jan 30, 2007 9:38 pm |
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1 |
| Mon Feb 19, 2007 10:21 pm |
| Emma |
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Hi everyone,
Our 20-month old daughter Sophie (SMA Type-II) has started sicking increasingly often (not choking while chewing, but after meal-times), which worries me a lot. I cannot establish a connection between sicking and any particular food...
I will speak to our consultant at the next appointment about it, but also thought I'd ask 'the first-hand community'..
Our paediatrician suggested that Sophie has got milk intolerance and recommended a dairy-free diet for at least 3 months (although until recently we never had the sicking problem and Sophie's always been on formula milk+ cheese, yoghurts, etc).
I am very reluctant to go totally milk-free: the results can take several months to show up, and then it might turn out to be not milk at all..
We are suspecting reflux and I know there are some tests that can be done to confirm that. Can anyone give us any more info? Is the procedure stressful/painful for a small child?
Or may be someone has got other suggestions re sicking? What was the cause in your case and what helped?
Kindest regards
Veronika |
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Tue Jan 30, 2007 9:01 pm |
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5 |
| Sat Mar 10, 2007 6:30 pm |
| Vivien |
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Hi,
Has anyone got experience of using a Balder Finesse 290 Junior (or any other Balder) electric wheelchair? Any comments, good or bad, will be very much appreciated:
-are they reliable
-how quick/efficient are their repairs
-any comments on features, etc.
We are thinking of getting the F-290 Jnr for our 20-month old daughter. Balder's rep is coming round next week; we would love to hear of anyone's personal experience of using a Balder powerchair before then.
I don't hold my hopes up, but if anyone does reply - many thanks in advance for your time. |
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Tue Jan 16, 2007 11:45 pm |
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3 |
| Sat Mar 10, 2007 7:11 pm |
| Vivien |
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| Hi I have sma type 2, Iam confined to an electric wheelchair, and I have just got my provisional licence, I have found a driving instructer that gives lessons in a hand controlled car (b.s.m),when I pass my driving test, Iam going to get a car using my d.l.a money,the adaptions that I will need are, I would need a lift to get into the car or an electric ramp, and I will need to be able to stay in my chair and drive in to the driving seat space and then lock my chair into place by myself, can any one help me with any suggestions, does any one know if these adaptions are available. Is there anyone with type 2 sma that has passed there test and that can drive? Thanks for your help, Carrie. |
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Tue Nov 21, 2006 2:45 pm |
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0 |
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We found our first disabled holiday accommodation abroad by accident on the internet and took the risk, which turned out to be lucky. Our son Christopher is a disabled wheelchair user, and we now love to go on holiday, but were frightened for many years.
While looking for our next break we have found an apartment that is "disabled friendly", but the bathroom doorway is too narrow for a wheelchair to fit through.
We also found another that is perfect, were it not for the six steep steps leading up to the front door.
We are building up a free resource of disabled friendly accommodation that is only reviewed and recommended by a disabled person, family member or carer (No spin).
We need people to send information of where they have been and give us some feedback about them. If they have some photos that would be great as we all like to know what other places look like.
Our aim is that many other people in the same situation will also benefit from all we can collect and show.
We are collecting this information at http://www.wheelyaccessible.co.uk which is non profit and independent.
Thanks
WheelyAccessible |
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Mon Nov 13, 2006 10:05 pm |
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2 |
| Tue Dec 12, 2006 6:32 am |
| Lizzys Nana |
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| I would really feelcomforted if someone could tell me that their 3 year old SMA daughter - who can be so loving and good natured - gets so cross with me. Willow can be so demanding, wanting whatever shes asked for immediately, if I say in a minute she shouts, 'no now! or 'horrible mummy'. Then when we tell her off or punish her by putting her in a room on her own, she readily says sorry and we get a big tearstained kiss and hug! I'm with her all day and like many others I'm sure, constantly moving her from one spot to another or finding another toy, back and forwards to the toilet so the days are long so to get this, what seems like, constant unhappiness is really waring. Can anyone offer a glimer of hope and tell me she will grow out of it? |
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