I have Parkinson’s. It impacts my daily life by my speech, my experiencing unbalance, and tremors. I’m constantly taking meds and it frustrates me about the same way that other things do, and it challenges me, including my walking and my driving. But to overcome and adjust, I exercise and rely on help.

Slow mobility and I take medication.

We do normal things day to day in our life trying to keep everything as normal as possible. I’m the patient, and my frustrations are the balance issue is a big one, and then when my medication starts wearing off, that’s an issue. If I get nervous or upset or anxious, my tremors start really bad. Normally, I can pretty much try to control them. I have to be really careful about where I step. The smallest thing can trip me up. So, that’s a big frustration too. It’s a frustration for my husband because he’s always telling me to be careful. So, that’s what I have to do. I have to just watch everything that I do, and I can’t be the carefree person that I was before this happened.

Hi. I just struggle with being able to move normally, and so it’s impacted my daily activities. I have to time my medication if I want to go out and go to the store, I have to make sure that I’m going to be able to move, not lose my balance, and it’s just so frustrating to not be able to just go out without worrying about anything. And also, I see around the house, so many things that I’d like to get done, and I’m just not able to get it all done like I used to be. It just all takes so much longer, just getting dressed in the morning is a struggle, so it’s just frustrating. And so what I have done, the only thing is… Well, I try to keep up with my exercises and also just adjust my medication to when I need to be able to move.

Her Parkinson condition impacts our day-to-day lives. We can’t do what we usually, ordinarily do. We used to take walks on the beaches, go shopping together and stuff. Her balance and gait are off now, so she can’t walk as good as she did. We try and adjust to it by we got her a walker and we got her in balance therapy and it seems to be helping but she’s nervous about going out in public and falling.

Each day, it can be a different. As the disease progresses, it can be frustrating. If my mom gets frustrated and gets irritable, then it can be challenging and sometimes it makes it difficult to reason with her. Although I know that I’ve been trying to be more focused on what her needs are and trying not to lose patience with her as she goes on to her day to day. So some days she’ll contact me more often than others and seems a little more needy, so it just becomes challenging from that aspect.

As far as our day to day life, there has not been very many changes for myself other than more doctor’s appointments and things like that. However, for the patient, which is my mother, there is a lot more challenges. She has difficulty with motor skills. So her job that she was working is a lot harder, it slowed her down. She has trouble keeping up with the kids in our lives, where she used to be able to just be right alongside them. She’s always had a lot of energy and been very limber and just quick to jump in. And now she has trouble with doing those things. As far as adjusting to those challenges, I think we’ve all adjusted somewhat, but there’s still quite a ways to go. My mother is learning to slow down and take things at a pace that she needs to, and I’m learning to be more patient with that because for a while, I expected her to just be quick, and now she is a little bit slower.

The condition impacts my everyday life, because of medications I must take at specific times during the day. I’ve experienced frustration and challenges with the non-motor symptoms of my condition, and I have learned to adjust by exercising and eating properly.

Hi. So Parkinson’s disease affects every aspect of my life. It makes me slow. It means that it’s hard to button a shirt in the morning. My balance is off if I haven’t taken medications. So sometimes I can stagger around the kitchen while I’m trying to get breakfast, let’s see, fatigue. I can only get about half of what I would really like to get done during the day. It affects my body language. People often don’t think that I am feeling what I’m feeling because it’s not what my face is emoting. I can appear disinterested when that’s not true, things like that. So those are just a few examples of frustrations and challenges. And you just adjust, you give yourself more time, you plan that you’re going to need to rest more than you think you are. You try to over exaggerate your body language to try to appear “normal”, things like that. So it’s not perfect, but you just get by.

I have to be more careful in everything that I do, walking, and eating, and be aware of what can possibly happen if I’m not careful.

The primary impact has been on the amount of time it takes to manage my illness and the effects of it, and how that’s taken away from the quality of time we have, and the quantity of time we have with others. For my wife, who’s lost a father and a brother to diseases early, her fear that I would go next and be the third person, male, in her life that’s left her. It’s very scary for her. The overall, I think we’re doing well with it because we’re thankful what I have is not worse. It could be.

Every day is a challenge. I wake up shaking and can barely walk. I take Sinemet hoping they’ll work. Some days they will work, some days they won’t work. Sometimes if they do work, they get side effects such as dyskinesia. I have tried taking less Sinemet to decrease the dyskinesia, but that didn’t really work.

His condition impacts my life by my reluctance to leave. He falls and that’s scary and he can’t always get up. So it’s frightening to leave him. Also, his physical decline has made it so I’m the one doing all the work, all the household work, all paying all the bills, cooking, cleaning, the yard work, taking care of the cars, which is a lot as well as helping take care of him. So that’s a big impact. The way frustrations and challenges, just having all that to do. And also the cognitive changes make some things more difficult and challenging just in terms of having to explain things or repeat things over and over that don’t get remembered and the frustration that he feels in not remembering them. And then trying to, for me to try to be patient is a challenge with those deficits of his. And what have I done to adjust? I’m trying really hard to work on patience and understanding the condition so that it’s easier for me to respond appropriately all the time. I’m trying to get some things like a Life Alert or something that would help so that if I’m not here or if I’m outside and he falls, it’s not so scary and stressful to both of us. Also for me to just try to do some things for me so that that maybe would help my patience. So I have some time to just get outside when I’m not doing caretaking things. And also as well as looking at what I can pay somebody else to do maybe. That’s one of my things I need to do that I haven’t really done much of yet.

Frustrating things are not knowing what to expect in terms of progression of the disease, effectiveness of medication. Also, frustration in finding ways to keep my loved one safe while helping her maintain her independence. And also access to direct support in terms of information and resources.

Some of the frustrations and challenges that occur every day living with someone with Parkinson’s is the unknown. Anywhere from the grooming, to the meal planning, to the medication. The challenges that we face right now is getting him up and out of bed and wanting to do things. We’ve began a schedule to help him cope. We’ve also planned the meals and set timers for medication.