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Topic Is this what happens when the Sinamet stops working? Go to previous topic Go to next topic Go to higher level

By sooboo On 2007.10.27 13:49
So a few weeks ago my mom started to see bugs in her food and her nuero decided that she cannot tolerate Sinamet anymore. She's been on it for five years. Well, now she can hardly move, feed herself, talk, and she just really doesn't seem all there. She seems depressed about her situation (although it's hard to know for sure). She is just going down so fast lately, I'm wondering if this is the new reality, or do we need a medication adjustment. She's on just about everything you can take for PD (Stalevo, Amantadine, Mirapex and also Namenda and Reminyl for confusion. Her nuero talked about Azilect (AKA Rasagiline) but she said that the two patients that she had put on it went totally insane and one did not recover. It does not state this as a side effect on their website. One thing that kind of scares me is that when she saw the bugs, she was totally convinced they were real, even though I kept explaining it was the meds causing hallucinations. It seems like her confusion is getting worse and I didn't think that Sinamet helped with that. So I'm wondering if there is more going on than just the effects of Sinamet withdrawal.

By Pearly4 On 2007.10.27 16:48
Wow - I thought my mom was on a lot of drugs! I've always wondered whether we'd get to the point where I'd have to suggest or ask about hospitalization for a medication holiday and then gradually adding things back. I'm not even sure they can do hospitalizations for that anymore though it seems even a psych admission at this point would even be a place to start and maybe accomplish the same thing if you can convince someone to do it. Some doctors just want to add and add and without their training and drug knowledge we're left in the dark as to whether something is really necessary or what is causing which. I find our pharmacist a great help in sorting it out - he's not a doctor but he can tell me things so I can go back to her doctor and ask intelligent questions.

As far as the delusions and hallucinations - you'll never convince her they aren't real, all you can do is roll with it. My mother had tiny, tiny bugs in her bed -- we tried everything to convince and finally went with it - she now uses a lint roller every night before going to bed to "catch" them and is perfectly happy with the solution. Doesn't cost much and reduces the headache load for us too!

By annwood On 2007.10.27 18:54
What a great solution Pearly4! We al need to be so creative when dealing with the dellusions because as you stated they can never be convinced that it isn't real.

By sooboo On 2007.10.29 01:27
Thanks for the advice. I guess part of me knows there is no use explaining it, but the other part gets upset that my (formerly) brilliant mom believes it! The lint roll is a great idea! She seemed a little better today. Her voice is stronger, but she's still not making a whole lot of sense. She'll start a sentence just fine, then it's like a switch flips and she loses track of what she's trying to say and then it all unravels into gibberish. I'm going to talk to the nurse at her assisted living place tomorrow and we see the nuero in a week. Another thing that has come up is that her financial advisor called her to make a routine decision. I have not activated my power of attorney thus far. I don't know if I can make these routine decisions without the PoA. My husband says I should do it when we are not in crisis, that way it's done, but I say I don't want to demoralize her by taking away her decision making abilties and besides I write the checks and she (kind of ) signs them. Advice? Thanks guys!

By Pearly4 On 2007.10.29 05:51
I have Medical POA and my brother financial POA -- I felt it was better that way since she doesn't live with him. He pays her bills and I try to include her in everyday decisions but she has so little money it isn't hard for us. I will definitely use the medical POA when the time comes -- but I wouldn't even try to give you legal advice - there are different interpretations of things in different states too. I guess I could only refer you to an elder affairs attorney or, here, I've found a wealth of information on the Legal aid web site. Seems her financial adviser trusts you -- I understand the demoralizing part - my mother is in a health crisis that may force us to enter into at least a temporary nursing home situation and she's finding that as hard as we are but sometimes this disease makes decisions for us.

By colettem On 2007.10.29 11:15
I had the same questions about POA with my mom. I went along as far as I could without it, mom would tell me "you just sign it for me", which I did for awhile. But when I had to talk to the homeowners insurance people, they wouldn't even talk to me without a POA on file. So that, along with a tax problem that came up, and just the uncertainty about signing her name led me to get the POA authorized. It hasn't changed anything in our way of doing things for the most part, it's more just a back up for when the time comes that she can't make a decision or when it's something I don't feel she needs to worry about. Plus she can't really talk louder than a whisper so she can't deal with things like insurance people on the phone. And now I can sign my name legally. I hesitated for so long because I felt that mom wasn't completely incapacitated, she still could make decisions and sort of sign her name. But the POA document that she had allowed me to make the decision as to when, and it's really made things a lot easier. It's really difficult to have to deal with financial decisions as well as all the health problems. None of this is easy to do, is it?:(

By sooboo On 2008.01.02 22:56
So my issue a few months back was whether or not to invoke PoA. I decided to put it off until after the New Year, but my mom ended up in the ER on the 30th for weakness and vomiting. She can barely talk, she sleeps most of the day, and most disturbingly is taking her PD meds through a tube that goes down her throat. They think she has an impacted colon or maybe a UTI, but they don't know. She was off all her meds for two days and no longer can swallow. This should improve after a couple of days with the reintroduction of the medication. All this happened over the holiday when her lawyer was out of town. I did find the advanced directive (in the back of a closet with my baby pictures) which says no permanent feeding tube, but the doctor said the tube is most likely temporary. The document also states that I can now make medical decisions for her and I guess I need two letters from her doctors saying that she can't manage her finances to invoke that part. All of this has been very upsetting. She looks really bad and I have to fight tears when I sit with her. I unfortunately could not see her today as I came down with the worst stomach flu I have ever had in my life, last night, which almost put me in the hospital. I put off invoking the PoA because I thought I wouldn't need it til much later. I went to the ER without the advanced directive and had a bad moment when they said she might need surgery. I know I have always done the best I can for her, but I should have been better prepared. Guess I already have my resolution for 2008.

By Pearly4 On 2008.01.03 07:49
Nobody is truly prepared for what this disease brings. I'm trying also - my mother's Parkinson's is so erratic -- as I read through this we were planning on nursing home admission, now she's insisting on going bowling! Doc says it's ok too! Really she's been on a "high" -- very upbeat mood, back to the day center, wearing makeup and finger nail polish - never saw her do that before. So far no other signs of sexually explicit behavior but wonder if that isn't on the horizon.

But back to you -- hate the thought of what is on the horizon in terms of her health. I know it isn't as simple as, oh, yes, here's the paper, just put me in charge. I know too that I trust her doctors to not do anything extraordinary - I have to or go nutzoid! I will do what I must, and we (my husband and I) have an appointment with the state elderly resources director to discuss what we're missing and need to get done before things come to a head.

By Ilovemydog On 2008.01.28 18:08
My dad takes alot of pills,,,,,,34 per day,,,,,,16 of which are the sinemet. I can't imagine what he would be like if they took him off that.
He started Azelect last March, he takes 1 per day. I for one cannot see a difference in him physically, but he says it works,,,,who knows,,,,when they changed the shape of his sinmet one month, different brand ,,,he thought they worked better,,,I know better than to argue.

By Pearly4 On 2008.01.28 19:34
You're lucky! Mine thinks we're slipping new pills to her or overdosing her each time they change them! Keeps insisting she's going to find someone else to manage her pills - if only!


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