A question for the Parkinson's Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

My greatest supporter is my husband. Also equal to that are my children and my friends and, of course, my doctors. They all allow me to be me. And most of the time they overlook my illnesses and just focus on everyday things in life. Or when worst gets to worse, we just laugh and say, “Parkinson’s brain.” That happens when I’m off, on my off days.

My wife is my biggest supporter and what she does is she knows when I’m tensed up. She lets me relax and does my chores for me and will take good care of me.

My biggest supporters are my sister, my best friend and my husband. They’re always looking out for me. They’re making sure everything is good. My friend goes to the doctor with me when I have to go. They go to the grocery store with me. They help me to do my shopping and do everyday daily things that I do. I don’t know what I would do without these people in my life. They were definitely a gift from the spirits beyond. They try to keep a positive attitude for me and just keep going. They do everything to make sure that I don’t get upset about anything because I have a tendency to do that, make me laugh, keep me busy. That’s how we’ve been going through my journey. I try to continue to do things that I did before my Parkinson’s diagnosis. I love riding roller coasters and doing outdoorsy things, camping, swimming. That’s what we try to continue to do, just make it as normal as possible.

My biggest support is definitely my husband and my four children. My husband just knows how I feel without me even saying anything. He knows when my medicine is wearing off and he’ll help me. He notices when I need help, I don’t need to ask. He’ll help me out of the car or help me getting dressed. He’s very sensitive to it and it has been just a great support. And my children are very understanding too. So I’m truly blessed.

The biggest supporters are our son and daughter. Over all the time to help her, they’ll take her out, shopping, I’ll get a list together and we’ll go out and get the supplies that we need. Food, clothes, et cetera. If I’m working, because I’m still working full time, so the kids are our biggest assets. And support is to help with this. They’re always here day to day, and that’s how we’re making it through this so we’re not getting stressed out all the time.

I would say all of the above are the biggest supporters. I would say doctors. I would say my friends. I would say some family, but not all. But I would specifically say my friends because they helped guide me through it. They tell me everything will be okay when I get stressed out. They tell me I’m doing the right things. I can contact the doctor at any point and get his information and get his feedback if I have any questions. So I think we have a pretty good support system in place to assist my mom.

I would say that the biggest supporters have been the doctors and honestly, the friends that she has met through her Parkinson’s classes and things like that. They’ve been very understanding of what she’s going through. Very supportive when she’s feeling down. Very encouraging when she needs it. And just overall a lot of support from those two.

My biggest supporter would be my doctor who has helped me find the correct medication that works for me after many touch and go attempts with other medications. My friends, family are also very supportive, knowing my condition and making sure that I am doing well and checking on me. The other people who are supporters are my women only Parkinson’s support group members who are going through the same thing that I’m going through, and they know how to deal with this.

Biggest supporters. I would say my doctor. My doctor is very thorough, my movement disorder specialist. She looks at all aspects of my life. I’m still working, so she looks at that. Am I able to perform my job? She always has good suggestions about medication. She listens to how my life is going, things like that. She’s always offering resources. It’s usually a pharmaceutical resource, but resources nonetheless. My family, my family loves me. That’s just the best way to say it. They don’t always know what to do, but they love me, and I know that. Support groups. I am in two support groups that I’m active in and also some Facebook groups. Those are just terrific, just to hear other’s perspectives and to know that there are people who get it. My family, as I said, doesn’t always get it. But the people I’ve met in support groups, they get it. So that’s always really helpful. So I think that’s what I can say about supporters and how they do that.

A family member who took me into his house after my surgeries to care for me and subsequently calls me every day to check on my condition.

My wife, Esther, has been my constant supporter. She’s the consummate caregiver. Because my problems are not terribly bad, she’s been able to handle them with quite good aplomb. I’ve had good support from several friends, and from my nephew in California. Everybody knows that the longterm is a negative, but in the short term, it’s not as bad as it could be. So people support me by not asking how I’m doing and not asking if I have problems, making the assumption that if I have something, I’ll mention it to them.

My family and caregiver have been a huge support. My children always help clean the house and help with daily chores that need to be done. And my caregiver quit their job to become a full time caregiver.

Friends and family have been very supportive, but mostly in an emotional way. There hasn’t been a lot of physical support or anything, but emotional support is very important. It’s been family and friends. We don’t have any family nearby, so physically they can’t do anything and friends have offered support, but haven’t to come and stay, provide some respite. Haven’t really done that. There’s one friend that has done that on occasion, which has been extremely helpful. That is probably the best example of how people have supported and could support, is just come over for a while to give me a break.

My biggest supporter is I suppose, my brother. And he helps by helping me take care of my loved one, who is my sister. My loved one’s doctor has been a very big support. She is always accessible. She is always available to explain things. And also, my extended relatives are emotionally supportive, but as far as specific concrete support, it would be my brother. He helps me by taking my sister on vacation with him, to his house. So I get a respite. And so my sister, who is the one who has the diagnosis, also gets a respite. And also, I tried to access therapy and I went once and the therapist told me that what I was feeling was normal, based on the diagnosis of my loved one. And there really wasn’t anything that she could do for me.

One of the biggest supporters would be his doctor. A team of doctors came together, sat with us as a family, explained what was going, on and what treatment options were available to us. They’ve given us numerous studies, information on how to cope with someone living with Parkinson’s and how to take care of them. The next biggest supporter would be family. They help anywhere from grooming, to bathing, to doctor’s appointments, to helping with meals, medication pick-up.