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What MyParkinsonsTeam Members Would Tell Those Who Have Just Been Diagnosed

Written by Torrey Kim
Posted on June 16, 2021

We all respond differently to information about our health. After learning you have Parkinson’s disease (PD), you might be stunned, scared, or even relieved to have answers that explain the symptoms you were experiencing. No matter what you’re feeling, you’re not alone. On MyParkinsonsTeam, there are thousands of others who have been in your shoes.

You can’t figure out everything about PD at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and making a plan for managing your health can improve mental and emotional well-being.

“Newly diagnosed and going through a roller coaster of emotions, with a huge dose of ‘why me?’” one MyParkinsonsTeam member wrote. Another said, “It’s hard to have a good day when you are newly diagnosed. So many questions and so many fears.”

To get some information on how to respond to a new PD diagnosis, check out the following tips shared by MyParkinsonsTeam members.

It’s OK To Be Worried About the Unknown

Many members of MyParkinsonsTeam advise the newly diagnosed to take their time when absorbing the reality of having PD.

“What you are feeling is normal,” one member said. “We were all frightened, and to be honest, most probably still are. This disease is fear of the unknown. The best advice I can give you is to try and have a positive attitude, exercise, and keep as active as you can. Don't think of the worst because it may never happen. Think about what you can do to maintain your strength. It's not easy, and you will have good and not so good days — but people on this site can go through it with you. You are not alone.”

Keep in mind that it will take time to get used to your diagnosis and your new reality. “There is a lot to learn, but you don't have to learn it all the first week,” one member advised. “There is life after a PD diagnosis. I was diagnosed with PD 22 years ago, and I’m still living a very active, full life. Just take it a step at a time.”

In addition, members like to remind those who are new to Parkinson’s that they may find their disease course following a very different path than that of others — and that’s normal. “It is important to remember that Parkinson’s is not a ‘one-size-fits-all’ disease,” one member said. “It is a different experience for everyone. Not everyone has severe tremors, and not everyone experiences cognitive decline. What I tell people is that Parkinson’s is just an inconvenience, not an obstacle."

Find What Works for You

Because of the variable nature of PD’s disease course, many MyParkinsonsTeam members note that managing the condition requires some trial and error. “I have had Parkinson's for over 20 years — this is a very sneaky ailment,” one member said. “It attacks if you are resting too much. You must stay active, exercise, walk — anything to fight it from gaining a tighter grip on you. It is a daily battle. Some days it wins. I keep it from further gains on me by singing and talking to others. I have found several ways of unlocking my fingers when they clench tightly, and how to stop the bad twisting of feet and legs.”

Another member noted that once you start working to accept the condition, you can begin to find solutions that help your particular symptoms. “Find out what you can safely do and continue your life,” they said. “Don't let this disease ruin your life. I know it can be very hard to accept some of its limitations, but remember who you were before this disease hit you and try to be as close to that person as possible. You can beat this terror with a positive attitude and determination.”

Some members have shared specific strategies to help improve their symptoms. “Try putting your hands in hot or warm water,” one member said. “Heat usually works for me.”

Other members find that their PD symptoms are vastly improved by staying active. “Exercise is the best medicine — you must do this every day — maybe for at least 30 minutes if not longer, depending on where you find yourself now in your Parkinson's journey.”

In addition, making time to rest can help those with PD better navigate their day. “I find that if I get tired, I take a nap,” one member said. “When I feel good, I cook or shop. Take one day at a time and listen to your body.”

Remember to talk to your health care team before you start any new activities, including exercising or adopting a new diet.

Give the Treatments Time to Work

Some MyParkinsonsTeam members feel it’s important to note that the effects of new medications won’t kick in right away, but that patience pays off. “It takes a while for the meds to work, but they do help,” one member said. Another added, “I agree — it definitely takes a while for your body to adjust to the meds, but eventually it will.”

However, another member said, the effects of PD can change from one day to the next, so you shouldn’t get discouraged if you have a bad day. “One day is great, the next is not so great. One day your meds work like a charm. Two days later they don't kick in for hours. The next day they are working great again. It's the inconsistency that makes daily living difficult sometimes. But you get used to it.”

Do Your Research

One overarching point that many MyParkinsonsTeam members like to share is that you should get to know as much as possible about your condition. “Take it one day at a time,” one member said. “Live as you want. It's just a life less ordinary. Research, research, research. Go to your doctors’ appointments with questions.”

Another member advised finding a movement disorder specialist to visit, since they usually have the most accurate information. “Learn everything you can about PD so you can keep up the good fight,” they added.

Most importantly, members of MyParkinsonsTeam like to stress the fact that they are there for one another. “You are not alone,” one member wrote. “This is a great website to ask questions and share how things are going … Hang in there and let us know how it's going. We all seem to be taking it day by day.”

Talk With Others Who Understand

MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 76,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s.

What advice would you have for someone who has just been diagnosed with Parkinson's? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on June 16, 2021
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Torrey Kim is a freelance writer with MyHealthTeam. Learn more about her here.

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