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SJ13
19th May 2013, 20:30
Hello All
Haven't posted for a while as Dad is very ill and 16 weeks from his diagnosis we are nearing the end. Dad is on a syringe driver for anxiety and pain and is completely bed bound. We can occasionally work out something he is trying to say or tell us and we are very concerned that Dad is suffering with stomach and bowel spasms as he is not constipated but pointing at his tummy and wants bed pans. I remember a thread somewhere on here saying that this was common with Rigs and that there is a recommended rate and a medication that can be given to stop the pain for him. Any advice would be gratefully received please just to make him more comfortable. Thank you so much. We have case conference tomorrow and I want to go in armed with information.
Sarah

Rory
19th May 2013, 22:17
Hi Sarah
I have a RIG fitted but thank fully no such spasms.
I do take quinine each day to stop other muscle spasms and cramps so it may work for your Dad - GP can prescribe.
Hope the pain subsides and dad becomes more comfortable

Rory
X

SJ13
19th May 2013, 22:51
Thanks Rory ... Wish I could find info that was on this site a few months ago.
Dad is very poorly and we are trying to get him home from hospice after case conference tomorrow afternoon.
I promised I would honour his wishes of wanting to die at home and we will ensure that this happens.
Can't believe we've reached this stage so quickly but really want to get rig & spasms sorted xx

MikeFD
20th May 2013, 00:23
Hi Sarah,

Not sure if this thread (http://forum.mndassociation.org/showthread.php?533-Peg-procedure&p=3283&viewfull=1#post3283) by Jeannie is the one you were thinking of. Either way, since your case conference is tomorrow afternoon, I'd recommend that you speak with MND Connect tomorrow morning and ask their advice. Hopefully they can give you a level of reassurance, together with some solid information, before the case conference so you'll be forearmed with relevant questions.

The MND Connect telephone number is 08457 626262 or you could email them at: mndconnect@mndassociation.org. A team member will be available to speak with you from 9am to 5pm and 7pm to 10.30pm on any weekday. Further details are available by clicking the MND Connect tab at the top of this page.

Best wishes,

Mike.

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