I just read a post from "Dane" who mentioned that the prescription "caridopa-levo" worked well for her husband. My mother takes Mirapex, but, frankly, I do not see to much change in her symptoms. Her new geriatric specialist is good, but just kept her on the same prescriptions that she had before. It would really help me to know what things have worked, as well as the side effects of these drugs from people who have "been there, done that." thanks, Lilli
The surgery was about 7 1/2 hours long. She was only under anesthesia for the first hour or so. She had to be awake the remaining 6 1/2 hours to follow the doctors' instructions (to determine the probe placement). After the surgery, her only complaint was about her back - she had to lay still, flat on her back, for the entire 7 1/2 hours, which gave her a backache.
About 3 weeks after the probes were implanted in her brain, she had to have a second surgery to implant the wires and battery. That wasn't a big deal; it was done as an outpatient and required minimal recovery time. The battery sits in her abdomen, about belly-button height, but most patients have it implanted near the collarbone.
With DBS, she now has about 80% tremor control. She still takes medication, but the dosage is less than half what it was. However, she now has a little difficulty with balance, which didn't exist prior to the surgery. I guess when they dig around in your brain, they can't always get it perfect. Overall, everyone is extremely pleased with the result and she is glad she had the surgery.
The process doesn't end with surgery. The stimulator must be programmed and tweaked occassionally until the brain heals completely, which takes about 4-6 months. Programming is simple to do. You have a device that looks like a TV remote control with buttons for up and down. You just place the controller against your skin near the battery and push the up/down buttons to adjust the stimulation. I have to tell you that the grandkids had great fun cranking the stimulation up on grandma to see what they could make her body do! (No, it doesn't hurt)
The surgery was a little over two years ago, and looking back on it, I can see that it had an enormous positive impact on her quality of life. She was nearly 80 years old when the surgery was performed, so although it was an arduous process, she came through it without a hitch.
Can you tell me what type of symptoms your mother had and how it changed after the DBS? How extensive was the surgery?
Right now my mom has hand tremors, problems with walking unaided, and swallowing issues.
thanks.
Lilli
Exelon patch: for early Alzheimer's symptoms. Very expensive. Unfortunately taught me what the infamous donut hole is. We did it for about 6 months, discontinued without any changes. Be sure and ask for the percentage that it is effective and the extent of the effectiveness.
Sinemet (caridopa-levo): Stopped when no longer seemed to help. If this is working you should see on and off times where the patient does very well and fades as the dose becomes due.
Ritalin: Mom takes 5 mg 2 times a day. The effects are opposite as with kids. This is the only thing that keeps her moving. I think she would sleep 20 hours a day with out and not be able to stand.
I, too, think the terms are often used too loosely. Doctors are so pressured, and many are diagnosing on the fly. Some of these diagnoses take a great deal of time and patience.
Keep us posted on your mom and keep coming back for support.
Carol
Thanks so much for the valuable info. The reason I wrote about her miraplex is that sometimes she forgets to take it for a few days and her symptoms seem about the same to me.
I have been trying to go through her prescriptions and eliminate or change those that are no longer effective. Doctors seem to rely on information from the drug companies. Pharmacists are more knowledgeable.
I am going to the Parkinson's webpage Deb listed above. I also appreciate your suggestion about the Movement Disorder Center. Mom has osteoporosis, as well, and walking is getting more challenging.
And I agree...both Parkinson's and Alzheimer's/Dementia seem to be an umbrella term that doctors are using all too loosely, in my opinion (especially when there are no definitive tests for either illness). Most doctors use observational techniqes - some are more skilled than others. I have had a few family members who were misdiagnosed by their family physician who was not trained in these very specific areas. That is why I rely on this site and others. It is invaluable to chat with people who have been in my shoes.
Thanks again,
Lilli
My mom was diagnosed about 5 years ago with Parkinson's. Unfortunately, she has progressed very quickly. So I have had a crash course.
caridopa-levo is the gold standard. Miraplex is newer, with success but also associated with some behavioral issues.
there is a dedicated site to Parkinson's caregivers: www.myparkinsons.org. It has threads dedicated to meds, plus lots of other information.
The other thing I would suggest is to have her evaluated at a Movement Disorder Center. You can search online for one near you. These are usually associated with an academic facility. While neurologists generally oversee Parkinson's, there are neurologists that specialize in Parkinson and Parkinson's like diseases. It can be a big umbrella and take a lot of fine tuning to keep the best quality of life.
Hope this is helpful and posts!
I'm sure you'll get some answers here from people with a parent or spouse who has Parkinsons. I do know that sometimes there is a great deal of experimenting before the best treatment can be found.
Hey folks - if you know of something, please help Lilli out.
Thanks!
Carol