A question for the Parkinson's Community

Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?

Answers from the Community

My caregiver is my husband. He is supporting along with both my physical and mental problems. He allows me the freedom to conquer or fail when I choose to take on projects. I try to take the lowest possible medicines to alleviate my symptoms. This is working for me at this time.

I take four medications every day to prevent the rigidity I feel with Parkinson’s, the approach my doctor decided was the best route.

We manage my Parkinson’s by making sure that I take my medication on time. I do yoga exercises with the DVD. I do my best not to get upset. I’m trying to take life one day at a time actually, just take care of myself and keep on going. My doctor, I see every six months. We go through the generalized Parkinson’s motions of walking so she can see how I’m walking, my memory, she checks my tremors and she gives me my medication. And that’s what we do.

So I’ve tried for a long time to manage everything without taking medication and then I started it and I’m still taking medication. I tried different ones. I had some side effects with one of them, so I discontinued it and I’m just taking one now. I still try to not take as much and so I have a lot of off times where I’m not feeling well. I’m just worried about taking too much medication. I have a great doctor and she’d probably tell me to take more but I’m just worried about having to take more and more as it gets less effective. So I just… The other thing that really helps is exercise. I try to exercise every day.

We manage the conditions, she’s seeing a counselor to help her with her mental stability, because she gets frustrated that she can’t do her day to day tasks as she ordinarily would. Her medical treatments of physical therapy, speech therapy, counseling…The doctor decided that this was the best approach for the condition that she has and what she has been going through and what she has told them about her Parkinson’s and how it’s affecting her. So, they came up with these ideas.

So currently right now we are taking medications to help maintain her independence, so that keeps her from not tremoring as much and we decided on, plus physical therapy and speech therapy, and we decided on this aspect based on her age and based on the plateau stages that she goes through at any given time.

Currently she is taking levodopa/carbidopa and doing physical therapy I believe it is, but it’s more just like a dance class and movement class. We decided on these with her doctor. They seem to be managing the best and he didn’t want to do anything extreme right now, until we see how the medications work, and the physical therapy, and dancing, and all that help.

I manage my condition with medication, exercise and eating correctly. My doctor tried various medications to find the correct one that works the best and this has helped me significantly.

My primary ways that I manage this are medication. I take Selegiline. I take Carbidopa/Levodopa. And I take Mirapex. Those were all prescribed pretty early after my diagnosis, so I’ve been on most of those for about five years. Carbidopa/Levodopa only about a year. Let’s see, exercise is a big piece in management. What else? I take dietary supplements. I watch my diet. I try to get enough rest. Just basic things that everybody does to take care of themselves, but they’re accelerated, and they’re even more important for me. So, my doctor has recommended the medication protocol and the exercise, and then the supplements I take are based on my own personal research that I’ve done, by people who are naturopaths and other neurologists and things like that. So, and also some anecdotal evidence of things that worked for people I know who have Parkinson’s. So I think that answers what I do and why I do it. So thank you.

I attend therapy at a program once a week and take medication for my conditions. This was discussed with my Movement Disorder Specialist and he approved of it.

Yes, I’m taking carbidopa-levodopa three times a day, and pramipexole three times a day. They’re at low levels. Since they’re only taken three times a day, management is not an issue. But it serves as a reminder every day, when I take them or when she notices me taking them, that I’m going to be taking them for the foreseeable future and probably until my death. So it’s a constant reminder of the fragility of life.

We decided to increase my amantadine from 200 milligrams to 300 milligrams per day. My doctor said that increasing it should help the dyskinesia, but so far I have not seen any improvement.

He manages the condition mainly by medication, as well as some medical equipment. The reason they decided on that approach was medication is the first thing you do with Parkinson’s, usually. And it was extremely helpful. It made a drastic difference in his mobility at the beginning. But as the disease progresses, it becomes more difficult, and we’re hopefully going to find some other medication changes, or some other therapy that will help. But I think it was just the first go-to, and it really did make a difference.

My loved one takes three different Parkinson’s, actually two Parkinson’s medications, and one medication to aid memory. My loved one has attended Big and Loud physical therapy, and she is currently attending regular physical therapy. Also walking and keeping moving as best she can as directed by the doctor. The medication and the treatment were agreed on with the doctor and my loved one and myself.

To start with, he started with oral medication. The oral medication became too much for him to handle. So then he began with a patch to help with the symptoms of Parkinson’s. But because the patch was unresponsive, we talked to his neurologist about other treatment options available to him. We did our research and came up with the VNS implant. At this time, he currently has the VNS implant as of last year, and it has helped with some of his symptoms moving forward with his Parkinson’s.