Parkinson’s Disease—Going Beyond the Tremor

Parkinson’s Disease—Going Beyond the Tremor

We conducted a large survey of people who have Parkinson’s disease (PD), and asked many questions about what it’s like living with a chronic health condition that affects people so uniquely. Here are the highlights from what our community shared with us:

Going Beyond the Tremor

Tremor can sometimes be mistaken for other conditions

Many symptoms of PD overlap with other conditions, which can sometimes lead to misdiagnosis. About one-third of respondents initially received an inaccurate diagnosis, including essential tremor (31%), depression/anxiety (27%), and benign-essential tremor (15%).

Going Beyond the Tremor

Each person with PD struggles with a unique set of symptoms

Parkinson’s is a highly variable disease, meaning that different people have different combinations of symptoms, and those symptoms can be at varying severity levels.

Going Beyond the Tremor

People with PD tend to experience a myriad of symptoms that go well beyond the typical tremor and other motor symptoms. There are also considerable differences among men and women and their experiences with PD symptoms!

Going Beyond the Tremor

It can be frustrating coping with a disease that encompasses such a wide range of symptoms. Many people feel that dealing with these symptoms can be physically and emotionally draining

Going Beyond the Tremor

Many people with PD exercise to help manage symptoms

While exercise is important for everyone, it plays a crucial role in people with PD. Regular exercise can be essential for people with PD to maintain balance and mobility, and it may help slow the progression of the disease.

Going Beyond the Tremor

The most common types of exercise are walking (64%, flexibility exercises or stretching (53%), biking (35%), gait and balancing training (28%), and strength/resistance training (26%). Women are more likely to exercise 2-3 days per week or more to control their symptoms than men (71% vs. 55%).

Going Beyond the Tremor

The Parkinson’s Disease In America 2017 online survey gathered insights from 1,152 individuals currently suffering from Parkinson’s disease to better understand their symptoms and management of this condition, as well as the impact on their lives.

Comments

View Comments (7)
  • cbrunk
    2 months ago

    My friend goes to Rock Steady Boxing and it has made such a difference. She is such a fighter with a ton of faith. She does not have tremors, but she does fatigue easily and her emotions are elevated as well. I am grateful for all the good information that I can pass on to her.

  • Jessica.Hall moderator
    2 months ago

    @cbrunk your friend sounds like she has an amazing outlook on life with PD! I am so glad she is enjoying Rock Steady Boxing- I have heard lots of wonderful things about RSB and helping those with PD. We appreciate you being here and passing along info to your friend. If there is ever any information we can help you locate for her, please don’t hesitate to ask! Wishing you both well. Kindly, Jessica-Parkinsonsdisease.net team

  • dulcimer
    6 months ago

    I go to Rock Steady boxing as often as I can. You can bring a “corner man” for free to box along with you and be there if you need assistance. We warm up, do 8-10 rounds of boxing with breaks inbetween, a few rotations involving core work, strength, and balance. Then we cool down and bring it in for a cheer. There is so much comradery, empathy, and support.

  • Marcia
    1 year ago

    Thank you for wonderful facts and ideas to help with PD. Each person has different ways they can deal with PD and each PD has different in symptoms. One day at a time doing the best one can do to fight for a cure.

  • Lauren
    1 year ago

    I find that exercise helps me as much as or maybe even more than my meds. Side effects are better too…have lost some weight and have some muscles where I never knew I had them : ) I am early along in my PD and and am only 55. I recently got certified to help teach boxing to help other PWP because I feel so strongly that exercise is important. I am much more flexible, my tremor is less, I have better balance and I have more energy than I did a year ago. I think exercise should be a requirement not just a recommendation for PD and I sure wish that insurance would cover it. I also wish that the doctors would stress the importance of exercise on the day of diagnosis. It gives some hope that there is something you can do to fight it.

  • DonnaP
    1 year ago

    My dad has been diagnosed with LBD/PD for past 7 yrs. He is in a skilled nursing facility now because he is very fatigued and rigid and needs help just getting out of his recliner! He’s getting depressed realizing he can’t do anything without help.He’s on many meds but is extremely anxious about everything! Even just reclining in his chair. He thinks he’s falling. It takes two people to lift him out of his chair to go to bathroom and he shakes so much he’s afraid he’s falling! He also gets what he describes as a foggy feeling in his head around late afternoon and gets very agitated and uncomfortable! He has no temp but feels like his head is hot and his arms are cold! Anyone experience this. His Drs don’t know why he gets so dizzy and foggy or how to treat it! Is this typical of Parkinson’s or Lewy Body?

  • chris.hall moderator
    1 year ago

    I’m sorry to hear about the problems your dad is facing, DonnaP. We have some more information about LBS and PD here: https://parkinsonsdisease.net/clinical/lewy-body-dementia-differences/.

    To get feedback from the community, posting to the forums here is a good way to do so: https://parkinsonsdisease.net/forums/. Thanks for taking the time to comment! – Chris, ParkinsonsDisease.net Team Member

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