Quote:
Originally Posted by cmeender
My wife is currently in a duodopa study and is the first at the hospital doing the trial. She started on the 22'nd of Feb 2010 and is doing very well on the medication. The only issue she had is the tube pulled out once the first week and had to be put back in. Since then it has been going well. The great thing about it is no ups and downs. She is on all day long now which is great and rarely has any dyskinesia. The downside is the size of the pump and we do not know the cost at the end of the trial. Definitely would not like going back to taking pills every three hours or so and then getting dyskinesia as well.
She had some discomfort to start with because of the tube but that has been resolved and she is no longer on pain medication. We are still looking for better ways to carry the pump as the shoulder strap is cumbersome and she would like it to be somewhat concealed. If anyone has a good idea please let me know. The pump is 8 inches long 4 inches wide and 1 inch thick.
Have a great weekend.
Cal
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Cal,
Thanks for reporting back on this; it is encouraging to hear how well others are doing with this method. It is far superior to the oral delivery and is a long overdue alternative to brain surgery. Please keep us informed as to the pricing as it may apply in a long term use basis; I fear that Solvay may price it out of reach for many people.
Cal, do you know if it is mandatory that the pump unit (box) be carried upright over the shoulder like a handbag? I love to sew, so sewing ideas quickly come to mind. If the shoulder is not necessary, you might be able to find someone to make a custom fanny pack where it is secured around the lower waist or upper hip...almost like a belt. The other idea is to have someone create a little undergarment with an inside/hidden pocket that secures the pump while concealing it. The other idea is, if you can't hide it, flaunt it. There are many beautiful fabrics that we like; she could have a few "designer" bags made to liven things up a bit. Lots of possibilities.
I hope your wife continues to do well and feel better.
Laura