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Hi I am a Nursing student in Yr 1 and I am about to start working with a two yr old girl with spinal muscular atrophy. I was wondering if someone could tell me how should I act with her, can she feel if I massage her or tickle her tummy? I know that people with SMA are intellectually able and in most cases quite advanced mentally but I would really appreciate it if I could hear from a mum or caregiver. Someone who has SMA would be a great help too coz you would definately know. Thanks
Posted: Thu Oct 14, 2004 9:31 pm
  Author:
sophie
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Hi Sophie. SMA primarily affects the motor cells, see http://www.jtsma.org.uk/medicalinfo.html, as opposed to the sensory system. So your patient will no doubt appreciate some good tickling fun! Don't be nervous - I'm sure you'll find her very appreciative of a lighthearted caregiver! You haven't said what type of SMA your patient has; my daughter had type I and she very much enjoyed touchy-feely play - she couldn't move her limbs and she seemed to appreciate it when we did! I'd imagine a 2 year old will let you know what she likes... If you'd like any more info, please feel free to click my email link at the bottom right of the page (Email the webmaster) or post a question directly to the JTSMA staff from the Contact Us forms.
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Fri Oct 15, 2004 0:07 am
 
Site Administrator
Hi Sophie,
I am a teen with type 2 SMA. I remember when I was younger I used to love my mom pretending to dance with me - even if she was just moving my arms around vaguely with music in the background. Think of anything the average 2-year-old would like and try to adapt it! Hide and seek is always fun :)
Good Luck!
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Fri Sep 2, 2005 11:47 pm
 
Aisha
 
Hi Aisha,
Thank you for your reply! I have been working with my little girl for a while now and she has taught me many things! We always have lots of fun and we LOVE dancing!!! One thing I know for sure is she is well advanced many people I know, this shows strong through her patience, acceptance & wonderful sense of humour! Thank you for your reply, I welcome any suggestions and advice.
Cheers!
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Sat Sep 3, 2005 2:02 am
 
sophie
 
Hey.

I am also a teen with SMA Type II. I know that as a child I loved dancing about, although it was always only arm movements. I liked jokes and playing like a normal child even though these were not physical activities. Puzzles like jigsaws and colouring in were things I loved to do, I also liked play-doh!

Hope this helps you.
~x~
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Fri Sep 30, 2005 2:07 pm
 
Michaela
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