My mother has had PD for almost 22 years and while she has always had tremors, they were well controlled. She was put in hospital on January 28th for anemia and bronchitis and while there had one episode that lasted 5 hours before they finally stopped with new medication. This week she has had major episodes every night and we are having to give her more and more medication to get them to stop. She will fight them, and not let the medication work and won't relax. I have contacted her neurologist and also her primary care doctor to get advice, but also wanted some "real world" advice. I know every PD patient is different, but wanted to know if you have found anything that works.
She is currently taking Zanaflex for the tremors and we have had to add back the Parafon and Ativan in order for them to stop.
In end stage I was 56 when got now I'm 63 .i havering real time. Iim in nurseing home . Up until a year I was living next door daughter . I get with walker but I falling alot . Then I started having trouble swallowing they put in pig tube now I meds thought it . I was pleasure eating but can't swollow at.all .i don't have tremors I get real stiff n I get stuck . N I feel like dieing when my meds wear off ! M my
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My sister has gone to some of the support group meetings for me, and the one thing she was told is this:
PD patients need their meds on time, every time. If you go to the hospital ER, you may be waiting for some time. Be sure to take the key meds in their bottles - we keep them in his Aware in Care kit bag, in his car. There's also a card that says he needs his meds on time. We also keep updated med lists in each of our wallets. It's unsettling the number of times I've seen staff in one discipline (say cardio) not even look at the meds from another (say gastro) where there might be a problem. I keep a few of his key meds in my purse for an emergency. And I also notice more night tremors ( no day tremors) when he's really been physically tired. And I have been keeping notes and records on my iPad, - doctor visits, medication changes etc. I started a spreadsheet two years ago for the medication costs to be able to get a feel for when he is going to hit the donut hole and our monthly med costs will jump up.
She is currently on 4 different meds to manage her disease. She takes the instant release carb/levo 25/100 every 4 hours starting at 7:30 am. She also takes Azilect at 7:30. She takes the CR carb/levo 50/200 at 1:30 am. The only other med she is on is Prozac to help calm her anxieties. As well as the meds, she had the Deep Brain Stimulation (DBS) surgery in Aug 2012. That essentially took away her tremors and dyskinesias.
The one thing I would recommend about the hospital is to go to the National Parkinson's Foundation and get the Aware in Care Kit. It is free and is full of helpful information regarding what to do if your loved one goes to the hospital. I haven't had to use it yet, but her balance is horrible and she falls almost every day at least once. Granted, we have no stairs and everywhere is mostly carpet...but she seems to always fall into something hard. God bless her!
Anyway, hope I helped somewhat. And if anyone has any ideas for me, let me know. Hugs to all!
Thanks for the responses.