Change of Meds

[ElizabethDavis50]

Hi beautiful people! My mum is in the hospital. They think she has somatization issues and that she is making up her symptoms. They say she can move she just doesn't want to. I trust my mom and she said that when they changed her meds from carbadopa levodopa to Mirapex, it's like the stiffness increased and she feels wobbly or frozen. Has anyone changed from carbadopa levadopa to mirapex with successful results? Kaiser in riverside California doesn't seem to be knowledgeable with Parkinson's patients as I'm learning more from this group to help her than from their medical advice.

[parkie13]

askapatient.com/mobile/view...

[ElizabethDavis50 in reply to parkie13]

Wow thank you for this link! How scary to go through those horrific symptoms with no relief. I won't give up until my mom has a little better quality of life! Thanks again 😊

[parkie13 in reply to ElizabethDavis50]

Don't know how old your mother is, however they did not recommend Agonist for older people too many side effects.

[ElizabethDavis50 in reply to parkie13]

67 almost 68

[parkie13 in reply to ElizabethDavis50]

They should not have stopped levodopa abruptly. Please talk to a neurologist. It is dangerous to stop levodopa abruptly.

[Hikoi]

This is ludicrous, unbelievable. C/lL is not interchangable with Mirapex. They are two different class of meds and work in different ways. Neither should be stopped abruptly.

I dont know the circumstances or details but don't give up. A facility/hospital that says PD people put it on has absolurelty no clue. Your mother should be assessed by a neuro.

And yes she will feel all the things she is telling you and could feel trapped in her body. Very frightening. Why did they stop C//L, it is still THE best treatment available. Despite what you read here about protein, take it with food if tolerating it is a problem. Its better than not taking it and in time our bodies get used to it.

[ElizabethDavis50 in reply to Hikoi]

Hello,

They told her that carbadopa is too much on her intestines and causes her severe constipation. She's never taken it with protein always on a empty stomach etc like her nuero suggested. When she is released and walking again I will make sure she does take it with protein.

[Hikoi in reply to ElizabethDavis50]

Elizabeth

Carbidopa alone is not associated with side effects. ..... side effects are generally associated with carbidopa and levodopa therapy and yes that can cause constipation BUT constipation is also caused by the Parkinsons and just about everyone with PD at sometime has constipation. PD affects muscles and that includes the muscles in the gut, they are on a go slow so food moves very slowly through the system (constipation). I have never heard that given as a reason to stop c/l. If this was the staff not the neuro that told you this then as I said before they are showing how little they know about PD.

When your mum does start C/L if she needs food with it, it doesnt need to be protein, i would probably have carbs.

Good luck

[park_bear in reply to ElizabethDavis50]

I second everything HIkoi has said and will add that Parkinson's also causes constipation by drying out the G.I. tract. The remedy for this is docusate sodium also known as Colace.

In my opinion you need to do whatever you can do to get your mom out of that place because they are hurting her. They have no idea what they're doing when it comes to Parkinson's.

[ElizabethDavis50 in reply to park_bear]

They truly are hurting her. Today they were giving her mirapex and sentiment and the combination of the too is making her feel terrible. They are upset that she is in too much pain to walk. Open enrollment to switch health care plans ends this week I'm going to find a better facility that has nuerologist that actually understand PD and know it's not easy to deal with the pain and stiffness all day every day.

[park_bear in reply to ElizabethDavis50]

Yes finding a better facility is the top priority. If you have time send the current team a written demand to return to her original medication schedule with appropriate tapering of the Mirapex, and narrating how your mom has deteriorated drastically since entering their care. Send a copy to to relevant parties overseeing the hospital including medical Chief of Staff and hospital CEO.

[Bailey_Texas]

just changing makers of c/L drives me wild. So going cold turkey from one med to a totally different one can cause all kinds of problems. Have a nero look at her remove here from where she is at to better one. I had side effects that put in the er and my nero and 5 others had never seen before and none thought i was faking.

Good luck

[M1tz1]

I'm so sorry. I feel for you. My husband is a late diagnosis Parkinson's patient. Must have had it for years but it presented as something else. He's so rigid that he cannot stand or walk and battles to swallow. He was put onto Sinemet and that sent him to sleep deeply. After a month of his sleeping all day, I managed to persuade the Dr to change it and he was put onto Madopar. Been on it for a couple of weeks and it's also sending him to sleep. The point of what I'm saying is that meds have dreadful effects that the patients experience but others don't take seriously.

[ElizabethDavis50 in reply to M1tz1]

She also has trouble swallowing and her voice is weak at times. She's only 95 lbs so most doctors tell her most of her issues are she's getting old but before Parkinson's diagnosis in 2011 she was running wild like a young teenager. Now one day she can cook and clean for two hours then the next day she can't walk barely talks clear and can't get up to use the rest room alone. Faith and determination will see me through in helping her find comfort

[M1tz1 in reply to ElizabethDavis50]

Bless you, Elizabeth. Hang in there.

[MWLE]

Omega 3 with every meal and other health fat helps with my father's constipation.

Get her to a neurologist to correct what those doctors are doing to your mom.

Good luck!