A question for the Parkinson's Community

Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Answers from the Community

My advice would be to get into the best possible physical shape you could and stay there. I would also tell them to seek medical help sooner. As of now, I feel grateful for the good days and my great doctors and a loving caregiver husband.

I would seek treatment earlier and not let it go as long before seeing a doctor.

If I could travel back to be the person I was, before I found out about this, life would be good. Life would be good. Parkinson’s has affected my family in many different ways. My son went into denial and actually quit talking to me for a while. So my advice to myself would be to keep it to yourself as long as you possibly can, because a lot of people don’t understand, it’s caused me a lot of grief. And how I feel now is, I’ve accepted my situation, I’m not in denial, I know it’s there, I’m careful about everything that I do. I have to be careful about picking up things, because if I pick up glass, there’s a possibility that it may just fall out of my hand for no reason, that type of thing. But as far as I feel now, I’m okay. I’m good. Thank you.

I think the best advice I can give is to just make the best of each day. I’ve been married for a long time and we’ve had some other problems, accidents and things that we had to deal with. It’s just a lot of challenges and you just can’t give up. You have to keep going and keep fighting. My biggest fear is becoming a burden. I’ll always be there for my husband and I know he’ll always be there for me. Right now, I’m a little discouraged because of it’s more knowingly, I’m not getting together with my support group as much because of the pandemic, so it’s been harder and harder to keep up the exercise but just keep on pressing and trying to make the best of each day.

If I could go back in time, I would tell my wife to stay strong and just keep pushing herself to do her daily things and try to outsmart the disease. I tell her now I probably should’ve done that from the beginning, but I didn’t understand the disease eight years ago. But that’s what change I would do. And I would tell her that I feel bad by not knowing what I know now about the disease, back then I might’ve been more of a help to her.

If I could travel back in time, I would tell her that everything would be okay and that we have to just be careful to listen to what the doctors say. I would probably want to see a movement specialist sooner than what we currently have done. And now I would describe to that person, how I feel now is that I feel confident with our doctors. I feel confident that we’ll take one day at a time and that no matter what I love her.

I think that the advice that I would give myself and her would be be patient. A lot of times we just wanted answers right away. We weren’t willing to wait. I would say that now we are much more patient, much more understanding that things don’t happen quickly, and just a lot more understanding.

I would tell them that you’re stronger than this condition. You will survive. You will lead a good life. You wouldn’t… Don’t let it affect you because you can do very well. And I would tell that person that I am happy, I am living a good life, I am stronger than this disease, and it will not take my life over.

If I could advise who I was when I was first diagnosed, I would say a couple of things. One, prioritize your personal relationships, and two, prioritize good physical habits like sleep and exercise and hydration. Describe how I feel now. I think how I feel now compared to when I was first diagnosed, I have answers now, but it’s not a simple thing. You’re in it for the long haul. And I guess the best piece of advice about that is get your head right with that. Some coaches talk about falling in love with the work and yeah, I think that’s appropriate. This is not take antibiotics for two weeks and you’re going to feel better. This is you’re going to have to manage this in a certain way for the rest of your life. And that’s very daunting, but there are ways to get your mind right to make that easier. That’s what I would say.

Be very careful with all of your activities and movements, because you never know when something could happen. Now I feel stronger with the knowledge of that.

The question reminds me of the old joke, so to speak. Nobody ever expressed regret in going to Paris when laying on their death bed. Travel more, be happier, be more thankful and love other people more. Not just your spouse, your family, but everybody. There’s not enough love to go around. Bye-bye.

To stay positive, exercise, keep living your life to the best of your ability. Don’t let PD take you down. Now I just feel scared because the PD is progressing. However, I’m trying my best to focus on the positive and keep going.

It hasn’t been that long since he was diagnosed, but I would tell him to exercise as much as he can while he can. That seems to be a really important element to Parkinson’s. He does have some other health issues that can make that difficult, and has, and did. I would tell him about how I feel, that it’s hard to watch someone you love struggle, and that I want him to be as mobile as possible for as long as possible, and that also we should do everything we can while we can because being a progressive disease, it’s not going to get easier to travel or do the things that we had hoped to do together.

I don’t know what I would have said or done, just to be patient. And if I could tell myself anything now it would just be again to be patient and recognize the signs and recognize that this diagnosis and the illness are going to be devastating when you have to deal with it.

It’s okay to have a disease. That doesn’t mean that it’s the world and we will figure out a way to get through it. How would I describe how I feel now? Some days it’s frustrating and overwhelming and other days it’s nice to have him.