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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 may 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 unique 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 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

  • dherbst
    1 month ago

    Great information

  • Jessica.Hall moderator
    1 month ago

    Hi @dherbst, thank you so much for the positive feedback! So glad to hear that the information was helpful. Wishing you well. Kindly, Jessica-Parkinsonsdisease.net Team

  • bobaleen
    2 months ago

    I have been having problems with my meds. They don’t really work too well. I take 10 sinemet tabs per day. I can not tell if I’m on or off. My biggest symptom is freezing off gait

  • Jessica.Hall moderator
    1 month ago

    Hi @bobaleen, I can see how frustrating that must be. We would recommend speaking with your specialist about your symptoms, if you haven’t already. You mentioned freezing gait being one of your major symptoms, so I thought you might appreciate this information-https://parkinsonsdisease.net/living/freezing-of-gait-prevention-treatments/. Hope this is helpful.
    Wishing you well. Kindly, Jessica-Parkinsonsdisease.net TEam

  • Mishka
    2 months ago

    Thanks alot Chris I appreciate your input but for now I will just listen to everyone stories reading about others helps alot. I Am Not Alone

  • Mishka
    2 months ago

    Hi i am a 47year old female from South Africa i have been diagnosed with MSA im still very new to this. I was on Levidopa and prolux medication and it didn’t agree with me because I felt nauseous all the time. The doctor took me off from levedopa now I’m only using prolux and cloazepam to relax my muscles when I’m sleeping. I don’t have tremors yet but it affects my speech and I have slow movements and difficulty in walking i also have fatigue. I was a very outspoken person but now with difficulty in my speech I don’t feel like being in a company but Im glad I found the group i can share with

  • Chris H. moderator
    2 months ago

    We’re so glad you’re here, @mishka. The symptoms you describe sound really challenging. You’re always welcome to share here! In case you haven’t seen it before, we do have an article that talks a little more about MSA: https://parkinsonsdisease.net/basics/parkinsonism-parkinsons-plus-syndrome/. Take care! – Chris, ParkinsonsDisease.net Team

  • AngieHott
    2 months ago

    Hello Mishka and Welcome to this super supportive community! I am sorry to hear of your MSA diagnosis. Your post sounds so similar to my husband’s experience, although he was diagnosed at 50 with PD. He is also slow, and had rigidity. You mention “cloazepam” – he takes also finds that med benefits his sleep at night. It is a great help for his nightmares.

  • Mishka
    2 months ago

    Hi Angie. You talking about nightmares i didn’t know it’s part of the diagnosis because I have vivid dreams every night. Thanks for sharing

  • Andy
    2 months ago

    I a a new entrant to this forum. I am 74+ years old. I was diagnosed with Parkinson’s Disease 8 years ago, although looking at the symptoms I had then, probably the disease had started much earlier ( may be 12 years ago). God willing, I am able to keep myself active. I have been active with workouts and exercises (I spend on an average 1 hour per day in morning exercises that include yoga and breathing exercise. The exercises are holistic in nature. Besides I frequent the gym twice in a week. I am under the care of a Neurologist for medication. I could contain my allopathic medication with the help of herbal medicines for internal consumption as well as massaging.

  • Jessica.Hall moderator
    2 months ago

    Hi @andy and Welcome!

    We are so glad you joined our community. I hope you find the community beneficial and know that we are here for you. It sounds like you have a wonderful routine doing, and are doing some great things to take care of yourself, which is amazing! I am a yogi myself and love it! If we can ever help you locate any information, please don’t hesitate to reach out.

    Wishing you well and, again, welcome!
    Kindly,
    Jessica-Parkinsonsdisease.net Team

  • Andy
    2 months ago

    Thank you Jessica

  • Ishmael
    3 months ago

    I notice “loss of sense of smell” is absent from your lists. I was diagnosed 2 years ago. However, I lost my sense of smell more than 25 years ago.

  • Jessica.Hall moderator
    3 months ago

    Hi Ishmael,
    Thank you for your comment. This article was based on survey answers from those with PD, so not all symptoms were included. Loss of smell is one of the non-motor symptoms those with PD can have. I’ve included some information on loss of smell here, in case you were interested-https://parkinsonsdisease.net/symptoms/sense-of-smell-hyposmia/. Wishing you well. Kindly, Jessica-Parkinsonsdisease.net team

  • cbrunk
    6 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.

  • Mishka
    2 months ago

    I would like to know what is Rock stead boxing

  • 3bob6
    2 months ago

    I go to Rock Steady three times per week and can’t believe how much it has helped me. I lowered my medicine and almost feel like the PD is gone. I know it is not gone but at times I do wonder if I got a wrong diagnosis. That was not the case neformthe RSB classes. I always was reminded of PD.

  • Jessica.Hall moderator
    6 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
    10 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
    2 years 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
    2 years 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
    2 years 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 H. moderator
    2 years 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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