| Question |
Posted |
Author |
Replies |
Last Post |
|
Sat Jan 5, 2008 3:00 am |
|
3 |
| Wed Jan 23, 2008 11:13 pm |
| shaztazazam |
|
In the last 2 1/2 years since our little girls SMA2 diagnosis, we knew it was going to be a huge life change but I secretly thought that by now - she has just started fulltime mainstream school - life would be settling down. However, we just consantly feel at her beck and call and her constant cries for 'MUM' either becasue she's dropped something, has slipped or needs the loo, are wearing me down. She also gets so cross and frustrated and our punishments and treat withdrawing techniques have no affect.
My husband and I also worry about the affect on our 7 year old daughter who must surely bear the brunt of our lack of patience. We always seem at the end of our tether, so even when Holly asks a simple thing, we can be very short with her.
These years in your children's lives are meant to be the ones to treasure but we just feel so guilty that we don't seem to be able to create a family life that is worth treasuring or remembering.
Does anyone know what we mean? Can anyone offer any advice on how they got through this? Louise |
 |
|
Thu Nov 8, 2007 1:08 pm |
|
1 |
| Sat Nov 10, 2007 3:16 pm |
| Jean |
|
| Hi everyone, my daughter is 6 years old and has SMA III. She is in mainstream school and is due to go on a school trip soon. School have said that it is too expensive to get a coach that is set up for her to use a wheelchair. They are proposing to send her down on a minibus with one other pupil. My problem is should they be using a coach that is set up for her regardless of cost? or is there somewhere that can help with the additional cost? I dont want to be the one to tell her that she can't go on the coach with the rest of the children because she needs her wheelchair. Thanks for reading x |
|
|
Mon Nov 5, 2007 10:51 pm |
|
0 |
|
Hi everyone,
we are planning a trip to the States soon (flight over 12 hrs long). Our daughter has SMA II; we are taking her electric wheelchair with us.
Has anyone taken a wheelchair on an airplane before? Any problems/recommendations? (the only one I can think of is 'take off any removable parts')
Another worry is the health issue during such a long flight.. I heard, (after we booked the tickets, of course), that during longer flights bacteria circulating through aircons do not do any favors for people with weak immune systems.. Has anyone got any comments? |
|
|
Sat Oct 27, 2007 10:24 pm |
|
3 |
| Sat Mar 8, 2008 3:40 pm |
| Steph |
|
Hi,
My 5 year old daughter has type 3. She attends a mainstream school but has a full time assistant to support her. She is fairly mobile although she falls a lot but does not have a wheelchair at school.
My question is has anyone else had experience of their child getting very tired at school? How did you manage this? Did they have to miss school or was something put into place at school to help?
My daughter gets quite tired as the term goes on. She then tends to fall more and even broke a leg after a fall in the summer.
I'd be very grateful to hear about other peoples experiences or advice. |
|
|
Fri Sep 28, 2007 10:34 am |
|
2 |
| Tue Dec 11, 2007 2:09 pm |
| Ian |
|
Hello - we are considering laminate floors as the powered wheelchair has destroyed our carpets (coming from outside in and taking the outside with it!) Has anyone advice on flooring we should consider
Thanx |
|
|
Fri Sep 21, 2007 9:12 pm |
|
0 |
|
| My son is 6 and his handwriting isnt very good we were wondering if there is a type or shape of pen that would help his writing as his grip isnt very strong, any suggestions - thanks |
|
|
Fri Sep 21, 2007 3:28 pm |
|
0 |
|
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 |
|
|
Mon Sep 17, 2007 2:06 pm |
|
0 |
|
| Has anyone had any experience they would like to share regarding the funding of an annex for the purpose of independant living by a family member with SMA type 2, aged 17 years. Our son has decided not to go away to college but to study at our local one. He is a teenager and in need of some 'alone' time away from his parents. Because of this, we have chosen to look at extending our property to accomodate this desire by way of an annex. This way he will be able to be away from his parents but still have our support and care on site. It is looking likely that we will not be eligible for any financial help toward this project because our son already has a bedroom of his own in our home. Can anyone advise us on any other funding which may be available to us for such a projcet or has anyone out there got a similar story with a successful outcome to offer us as hope! |
|
|
Thu Jul 19, 2007 3:36 pm |
|
2 |
| Sat Jan 26, 2008 9:40 pm |
| Jill |
|
| Hi. We have just started the process of looking for a powered wheelchair for our son Finn who is 2 years old and has type 2 SMA. I would like one with a high/low function. Reps are coming to visit us in the next few weeks.We are looking at snapdragon, permobil, balder and invacare. The snapdragon seems good as it has a standing facility and can lower so Finn can sit on the floor. I have heard that the balder is good but is heavy and difficult to transport and expensive in terms of adapting a car as special clips etc are needed. Any advice anyone. |
|
|
Fri Jul 13, 2007 10:41 pm |
|
1 |
| Tue Jul 17, 2007 11:55 am |
| Jean |
|
Hello everyone,
Motivated and enlightened by the 2007 conference I need some help in actually executing some of the good ideas gleaned from there... eg the idea of sending a letter to as many charities as needed to raise funds for an electric wheelchair HOWEVER what about the logistical and operational formalities of the whole undertaking:
- Any ideas on how to write such a letter? What to include, or where to see a template example?
- Would you suggest writing letters on paper or emailing?
- Do I have to have the whole kit configured & specified?
- What precautions do I take to ensure I'm not considered a potential fraud?
- What criteria should we fulfil to improve our chances?
- How are their donation/payment made? Direct to the chosen company (in which case do you give a deadline?) or to our bank account (whose? mine, make a special one for Samantha, (our daughter) in this case what conditions do I need to fulfil?) or some other way? How is this treated for tax purposes?
- What do the charities expect in return?
- Is there anything else I haven't considered?
I hope the knowhow gained here can be transferred to other fundraising ideas, I just have no idea I'm afraid of how to go about it. I look forward to your replies :)
kind regards,
Patryk |
|
