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Parkinson’s Disease—Coming to Terms with the “New Me”

Parkinson’s disease (PD) is incredibly complex—each individual experiences a unique set of symptoms and disease progression varies person by person. Many people with PD are often left wondering, “What’s next for me?”.

We wanted to learn more about what it’s like to live with Parkinson’s, so we asked our community members to share their experiences. For the Parkinson’s Disease In America 2018 survey, we gathered insights from 1,165 individuals who are currently living with the disease and 515 caregivers. Here are some highlights from what our community shared with us:

Parkinson’s symptoms go beyond a tremor

People with Parkinson’s experience a myriad of symptoms—beyond the typical tremor and other motor symptoms. The most common symptom reported in the survey was fatigue (71%). People with PD also experience sleep issues, micrographia, bradykinesia, balance issues, constipation, and more.

Parkinson's Disease In America

 

Cognitive issues are also a real concern

One third of people with Parkinson’s experience cognitive changes over time (32%). Of this group, one in every five reported that these cognitive changes had a significant impact on everyday life (21%), which is understandable! It can be disconcerting to feel like your brain isn’t working the way it once did.

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With all of these symptoms to manage, quality of life can be affected

With such a wide array of symptoms experienced, many people with PD feel frustrated and overwhelmed. Their general health and well-being is not as good as it once was, and it’s easy to feel defeated.

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Receiving support for the “new you”

One way to help come to terms with the new you to is accept support from your loved ones. Asking for help can sometimes be challenging, but it can be incredibly helpful for your mental and physical well-being. In fact, 8 in 10 respondents had someone who helped manage their Parkinson’s disease.

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There are also ways to receive support beyond turning to family or friends. In-person or online support groups are a wonderful way to find others who can relate to what you’re going through, and many respondents found that support groups were beneficial for their well-being.

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Many people with Parkinson’s also find answers to their questions through other resources, like their healthcare providers or even online.

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Remember, you are not alone in this fight against Parkinson’s disease. We also have a supportive community right here at ParkinsonsDisease.net. If you’re struggling to come to terms with the new you, don’t hesitate to reach out to us on Facebook or in forums.

The Parkinson’s Disease In America 2018 online survey gathered insights from 1,165 individuals with Parkinson’s disease and 515 caregivers to better understand symptoms and management of this condition, as well as the impact on their lives.

Comments

  • neil1610
    3 months ago

    The article was helpful indeed

  • Betz
    3 months ago

    I have recently started on Sinemet and Domiperdome. It gives me strong headaches. Will these headaches go away as I get used to the medication

  • Hubby
    5 months ago

    Hi Jessica.
    I feel that the uniqueness of this disease makes us all feel alone at times. That nobody else understands.
    That is why I no longer look too far ahead.
    I’m going to enjoy today as best I can and worry about tomorrow…… tomorrow.
    I’ve only got one life so I’m going to live it. Parkinsons or not.
    Regards
    Hubby

  • Hubby
    5 months ago

    I hate this disease. It has ruined my life.
    So I have started a different life.
    I accept the new me as a rebirth and as I can do nothing about it I’m going to have the best time that I can.
    There’s simply no point in doing anything else
    Peace and love
    Hubby

  • Jessica.Hall moderator
    5 months ago

    Hi @hubby, we appreciate you being here and sharing with us. I think your new found approach towards life with PD is an inspiring one and relatable. Please know this community is here for you any time you need. Wishing you peace and <3 as well. Kindly, Jessica-Parkinsonsdisease.net Team

  • KellyW moderator
    7 months ago

    This is a great article! From a young onset perspective, not only are all of these issues an every day reality, PD also affects your ability to work, raise children and live a full and social life.

  • jimcombs
    10 months ago

    Excellent resource. I look forward to participating and utilizing the PD network. Thank you for your service and assistance.

    Jim Combs
    Wallingford, Pa

  • shakyflynn
    1 year ago

    I am a Nam Vet USMC was affected from agent orange. Started with tremors about 2 years ago.About a year and half ago started having falling down events. First fall received 8 stitches on my first fall.The bathroom seems to a popular place for falling.Found a neurologist and have been on carbidopa/levo and Selegiline. The episodes seemed to have slowed down also my ptsd episodes have slowed down also. I started physical therapy and it helps my shuffling gait

  • Chris H. moderator
    1 year ago

    Sorry to hear about the falls you’ve experienced, @shakyflynn! Really glad to hear that these episodes have been slowing down. Appreciate the time you took to weigh in! – Chris, ParkinsonsDisease.net Team

  • Ronda
    2 years ago

    Hello everyone I’m having some new symptoms. I’m hearing things sometimes and I’m had a couple of nights of hallucinations they really scare me, I got up last night and turned the light on I finally got some sleep today I had my first experience with tremors boy did that inlighten me And tonight I’m shaking alittle and I can’t get to sleep. Can someone explain what’s happening

  • KellyW moderator
    2 years ago

    Hi Ronda. I wanted to add one additional piece of advice to Chris’s comment. Have you started any new medications or changed dosages since you started having the hallucinations? If the timing coincides, definitely raise that point with your doctor.
    Regards, Kelly, ParkinsonsDisease.net Team Member

  • Chris H. moderator
    2 years ago

    Thanks for reaching out here for more information, @ronda! I can’t imagine how scary that must be. We actually have a great article that explains more about hallucinations and PD here: https://parkinsonsdisease.net/living/how-to-manage-hallucinations/. Since you mention that these are new symptoms, we strongly encourage you to speak with your doctor and/or neurologist. Please keep us updated! – Chris, ParkinsonsDisease.net Team Member

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