Anyone taking care of a Parkinson's patient? Need some advice/suggestions.

Linda m... Big hugs to you..if was by you, I'd hug you in person. I'm so sorry about your situation. My father is heading that way too. It must be scary and I wish there was a cure for everyone going through this. I am glad you are on here. People here are understanding and caring. I hope reading this forum brings you some kind of peace. You've touched my heart and I am sending big prayers your way.

I also agree with Pam. I lost my mom Jan. 5th and her tremors would get so bad at times she had trouble feeding herself. I would go over all the issues with her home health RN and Doc. but never really got anywhere. The meds they gave her caused heart problems on top of everything else. If I could do it over I would have been digging for more answers rather that going with the RN's and Docs advice.

I have Parkinson's I got when I was 56 n now I'm 63 . I don't have tremors .im in nursing home .up until now living by. Self withh aid . But falling a lot .i can't swollow anymore they feed tube. My noerolgist Says im max out on drugs. I just freeze job . I'm end stages . I so weak I get stiff. Ii feel like dieing when meds wear off.

I have Parkinson's
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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tube .

My mom takes Carbidopa/Levodopa 2 pills 3x daily AND mirapex 1 pill 3x daily and this combo has really helped. Before she was on a lower dose and a mess. Doing better now, at least as it relates to Parkinson's, not her dementia. I also requested taking her off the Ativan, made her sleep all the time and she wasn't anxious.

My father had PD with the typical tremor with some years, started on Levadopa but typically it loses its effectiveness after awhile. It's been some 30 years, so I don't know anything about the newer meds. He didn't have obvious memory issues, but my brother had memory loss as a first symptom of PD. I would ask about the Levastatin, as some of the side effects are memory loss and hand tremor (I had both with it)--just what you don't need with PD. Frankly, the cholesterol issue is not as big a deal as the PD.

My husband is in the early stages. He takes Ropinerole 12mg ER once a day, Remeron and gabapentin (he also has peripheral neuropathy) to aid sleep and Azilect daily.

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.

Dad has had PD since he was 63 and he will be 77 this year. He's on 1 1/2 carbidopa/levodopa 25/100 (small yellow round pills) at 6:00 am, 10:00 am , 2:00 pm, 6:00 pm and 10:00 pm. He also takes Amantadine at 6:00 am, Rivistigmime at 6:00 am and 6:00 pm, Vitamin B-12 at 6:00 am, and most recently Levostatin for high LDL cholesterol. At 10:00 pm he takes a 5 mg melatonin to help him sleep and at 10:00 am he takes a 50mg Zoloft to keep him from being so grumpy. It's a constant struggle to keep him safe, awake during the day-sleeping at night, and the dementia from progressing. He falls some...but not as bad as he used to and we have full time care-givers with him and his wife most of the time. We have FINALLY gotten her to the point that she's not so nasty to the caregivers so we've managed to hold onto the same 2 for several months now. I almost (but not quite) have my life back.

My dad is on carbadopa\levadopa, comtan, ropinirole and trihexyphenidyl. He has had parkinsons for 9 years. The meds have controlled his tremors. Now his memory is goibg and the neuro has us weaning off the trihexyphenidyl in hopes it helps it be a little better. This combination has seemed to work especially for tremors though he does have the parkinsons freeze. I have him count his steps which works for now. Just recently we added Celexa. He was an active person playing softball till he was 71. He will be 78 in May. Things are going downhill which is expected but yes it's different with each patient. This combination has been working. But now need a caregiver at night so my husband and i can sleep some. Good luck to you. Plus make sure her neuro specializes in parkinsons. Hope this helps. Big hugs sent to you.

I care for my almost 74 yr old mother who has had Parkinson's for about 14 years. I feel with everyone out there who is having a hard time. It seems her mind is going little by little. Not sure what to do.
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!

My hubby is in early stages of Parkinsons and just started on the Carbodopa-Levodopa. His neurologist explained that there are only 3 drugs out there specifically for Parkinson's and this one is the oldest. As he explained it to us, you start on the oldest, and use it until it no longer works or you max on the dosage, and then add the next best one. After 22 years, hard to understand why no one has ordered this old and basic drug to her meds? Also, advice for everyone re: meds and doctors or hospitals. Take a phone photo of each pill bottle, showing the prescription label. That way, you'll always have the info with you when you need to write down the current list. My Dad also, typed up lists of his meds and dosages, and printed out small copies which he carried in his wallet so he could just attach to his 'history' or hand to a doctor or hospital staffer. He put an 'effective date' on his list and updated it when his meds changed, with a new date on it. If done on computer, it's easy to edit, save and reprint it with a new date. I am noticing, at age 70, and now caring for two parents and husband, plus me, that it IS getting harder and harder to keep all this data and history straight in your mind! I think even keeping a medical history on computer would be a good thing and print it out whenever going to a new doctor, or hospitalization or on the first visit each year to the current doctors, when they ask you to redo all these forms for their records. And, YES.....I noticed on my mom's last hospitalization, that there were MANY errors in her hospital record! As a retired RN, I just simply could not believe the errors in history taking by various doctors and staffers. It's like no one was really talking to her at all, as I was there almost 24/7 and helped give the historical information. It seemed like many people just made up the info however they wanted to, or got two patients mixed up. Allergies were reported wrong. They even reported that my Mom had the wrong hip repaired!! And they said she fell when it was fractured, which was never the case and was clearly stated, because both my RN daughter and I were greatly surprised that she could fracture WITHOUT any kind of fall...and we asked questions about that all the time during her stay! Sad to see and I fear it will only get worse in time to come.

She takes Stalevo 3 times a day; a 150 mg in the morning and then 2 200 mg pills in the afternoon and evening. We just saw her neurologist a month ago and he didn't change any of her medications. She is already on Paxil for depression and Seroquel at night. We were told by the hospitalist not to give her the Parafon so we didn't and that is what apparently caused the tremors at home. I talked to her PCP and he said to add back the Parafon and we haven't had any more problems. We were in control of her medications at the hospital; they would have messed them up and she wouldn't have gotten them at the right times. We have noticed that if Mom does too much she will start tremoring, and if she is nervous or upset that brings them on also.

Thanks for the responses.

Mom and dad on carbo/levo 25 msg 3x daily. Works really well. Moms anxiety worsens the PD tremors, though. She is also on Zoloft and Remeron for depression/anxiety.

My mom was also on carb/Levo, worked great. We were prescribed this medication from her neurologist. As time progressed and we noticed the symptoms worsening at certain times of the day, the carb/Levo was increased and extra pills were added into the schedule. Worked wonderful.

Sorry, in my other statement, I should have said "Carbidopa" it was spelt wrong on my mom's list, can't win!

Hi! My dad currently lives with me. He is taking Carbidopa/Levadopa SR tablets 25/100mg. He takes 2 with every meal. He has a hand tremor so he uses a straw for drinks. He is 85 and has been on this medicine for 20 years. The important thing is the SR. They are time release tablets. His family doctor writes for my refills. He was originally prescribed this medicine by a neurologist.Take Care :)

What do you mean by episode, is it related to the bronchitis or the shaking? You are on the wrong medications, my mom had PD too. At one point the limbs on my mom's body were out of control and it was a build up of the medications in her system. My mom took Cabidopa for PD, it was my understanding to be the most effective. The last time my mom went into hospital they pulled up hospital records from years before (weened off of) instead of the current list of medications we provided at admittance. Watch closely, we found the hospital making all kinds of serious mistakes with the medications, my mother was a mess because of it! She came out way worse than when she went in.

Agree with pams totally. Medication and the right kind is crucial at this point.

I would be jumping up and down on the carpet demanding a med that is actually indicated for Parkinson's instead of two muscle relaxers (zanaflex and parafon) and an anxiety med (Ativan). Go to the Parkinsons Disease Foundation website pdf.org for med lists.