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spinal muscular atrophy / genic deases

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15 years 9 months ago #4096 by ducky
i am glad you where able to do things... also sorry to here you are getting weaker...as we said may be one day... hope is a good things to hang on to :)

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15 years 9 months ago #4287 by Michelle
Hope is always a good thing to hang on to.

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7 years 1 month ago #64136 by ducky
Was not sure where to put this but here seemed right
My csma has now got to the cronic stage full stop
can no longer walk on stick in house i am on a frame and struggle to walk short distance
Went into hospital for 2 weeks had to have 24/hr care in 2015 and then twice last year all I seem to do is see different specialist
Am now on catheter full time inhaler full time and an infibulater also loads of new tablets
Must admit feeling depressed and sorry for myself
Can only tell members on this site about certain things not looking for smpathy just getting it all of my chest members here will understand as family and friends dont xx
The following user(s) said Thank You: racheymarie

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7 years 1 month ago #64148 by BUBBADOG14
I'm so sorry that your illness is becoming chronic, could the change in weather have anything to do with it? I'm using a walker now, my wonderful husband added a basket to it when I had my accident last March when my legs gave way and the fact I was carrying a glass caused my injuries to worse than could have been!! The basket is a god send!
I'm so sorry as well that your family are not being sympathetic or even helping you. To be honest my own Mother couldn't care less about me and it's only my husband and sister who are supportive from my family and my wonderful next door neighbour who is more of a Mother to me than my own Mother.

We are here if you need any emotional supportive and if I can help with finding any support or care closer to you or any questions answered just private message me or post on here.

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