I am very intrigued by your MDS saying he can see brain changes on the mri from the mirapex-if you can find out what changes he sees by asking him, please let us all know! I would be curious as to how the MDS can tell the brain changes he sees are attributable to the mirapex as opposed to PD progression or something else.

We have tried stopping mirapex several times and the pain is unbearable, even trying to reduce the amount we took was a mistake and we had to go back. We would love to get off of it, because of the brain fog, sleepiness, and other side effects, but just cannot seem to do it. Let us know how it goes for you, and if there is anything you do during the weaning off phase that helped get you through it. Thanks!

I am confused - you say 'we' - do you and your partner both have PD and take the same meds?

Trixiedee

Lurking, I actually do not have PD, I have segmental spinal myoclonus, they put me on the mirapex and kept upping the dose to where I have been on the max dose 1.5mg q 8hrs. I was having "blinking out spells" short periods of time where I knew I was missing parts of time but didnt realize it until a few minutes after I came back. this usually happened about 1-2 hours after taking the mirapex.
Not sure what he was seeing but at age 55 he stated "you are to young to have these kind of changes" He doesnt feel the mirapex is actually doing any thing to stop my leg as my leg is still going but that it is hampering getting the epidural drugs out of my system. he had seen a mri of my brain which he thought he had requested the recent one but it was actually one from 2003 when I was in car wreck. I had brought with me my copies of the new ones he had wondered why werent done(long story) but with seeing the new ones he just said "it was changes from the meds" and he wanted me off them asap. My first 24 hours dropping from 1.5mg tid to 1mg tid went fairly well until hit hour 28 I was walking down hall at work and it suddenly went like a finger painting and swirlled in color. it felt like someone drove a spike through my head. I could look down in front of me but if I looked out the world became a bad finger painting. I called PCP and nurse said to take 1/2 mg and see what happened after about 3 hours I could see at a distance again. As the week went on it became less of a headache literally. Last thursday my leg did cramp up and ended up taking valium and tramadol to pass out as I couldnt take the pain.
I am now on week 2 of the step down as of today and only taking 1mg bid. Had a headache but just took tylenol extra strength and it eased enough to tolerate. So today hasnt been to bad. Leg is clenching harder so think probably there will be a cramping spell to come. head is doing better, part of the problem i have been having is that my right eye from time to time will get double vision and it is cockeyed across not side by side but at angle across my straight vision. this has been going on since the "fly vision" when they tried to put me on lyrica.
I am eating my fava beans and until I get a reason that I shouldnt then I will continue but MDS did not say I shouldnt be eating them. Not sure if it is related or not but since started the beans I have not had a bout of my liver dumping a ton of bile into my stomach so that alone is a blessing.
Hope this helps if I can get an answer as to what the changes are I will post them.
Good luck and God Bless.

Growing Medicinal Beans

states most of l-dopa in the green pod of fava
'
http://home.cogeco.ca/~allan/medicinal_beans.html

Good news. I got home after the torrential rains and found gullies from the path of the water running thru the garden, But,the fava beans were still there.....They "held their ground " just like we have to, and kept on growing thru it all. I planted about 6 more pounds of beans this weekend...Pray for a good fall crop. Blessings!

My dad lives in Edmonton, Canada and we are unable to get fresh fava beans there. I am trying to get him to eat fava beans from the can but he says that it tastes bland and it is hard to get thim to eat it.

I was wondering if he put the beans from the can in a blender and made it into a juice. Has anyone tried that?

Thanks,
Sharmila

Aunt Bean
Thank you for bringing Scott to the support group. I would have liked to have heard more from him, but he had to leave.

I wanted to thank YOU publicly, Aunt Bean, for sharing all that you learn with others. Your aspiratio n is not to get rich, but to offer PwP an alternative to the gold standard of "best medical treatment, " which at this time is carbidopa/levodopa (Sinemet).

Scott - get in touch with me or Aunt Bean again soon, and we will take some time off for a long chat.

Peggy

Enjoyed having Scott to the farm so much and he was such an encouragement and help ...hope he will come back and bring his family sometime....we can all learn from him.
I can't stress enough...eat right/ exercize!!!!

have not tried that but since I think they taste like kidney beans I use them in salads and any place else I would put kidney beans. I have even mixed them with diced tomato and cucumber with a little ranch dressing not bad.

Have you tried sprouting the beans? You only have to eaqt about two or three ...good stir fried with onions &garlic or steamed 6 minutes and frozen...eat straight from the freezer as needed..that is what my friend is doing... they work , too.