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What’s something you wish more people understood about living with Parkinson’s?
The public often misunderstands the day-to-day experience of Parkinson’s, which can be isolating.
What’s something you wish more people understood about living with Parkinson’s disease?
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21 Replies
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I wish they understood the many and varied ways it manifests. For example the way an off day can mean significant memory and comprehension issues; or how anxiety levels can affect simple day to day activities. So many people see it as simply tremors, and are completely unaware of the issues with memory, anxiety, psychosis, etc.
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So many of the challenging symptoms you mentioned are invisible too, which makes it even harder for people to understand how much of an impact they have. Thanks for sharing.
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I agree with the responders, all of them. People don’t understand that PD is systemic and affects everything we do or can no longer do. I struggle with short term memory loss; it’s what led to my retirement. But everything slows down, and the slowing down is what I hate most about PD. Like one poster said, I don’t know who I am anymore. And as soon as I think I do, something else changes and I am no longer who I was yesterday.
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They don’t understand how sometimes I can’t think straight, and my DBS procedure seems to have affected my memory and I can’t remember how to do things. I wish people would be more patient with me.
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All of the above, but generally it would be great if the non PD world understood the way PD can affect everything about the body and does most days in one way or another and at the same time understand that we still have a sense of humour, ie: we’re normal folk!!
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Yes! People with Parkinson’s aren’t defined by the disease, it’s just a factor or component of daily life.
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The pubic needs more understanding of the different kinds and amount of pain PD patients experience. Muscle aches, joint pain, spasms and cramps, neuropathy, sciatica, headaches and migraines, and that all-encompassing every cell in your body is aching kind of pain. We can have some or all of this at varying levels every day.
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The silent symptom Fatigue!!!
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I find it so difficult to explain my overwhelming and ever changing fatigue. I think my friends and family think I’m sleepy. And sometimes I am but it’s a much more complex physical, psychological, and cognitive experience.
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Sometimes I feel productive and engaged the next I am overwhelmed by simple tasks. Also, at the end of meds I tend to fade.
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I especially agree about the fatigue. I have been taking exercise classes at the local YMCA and a guy in my TRX class keeps saying “one can do anything if they just put mind over matter.” I recently have had muscle fatigue so badly that I had to skip some exercises. My balance has also kept me from the Bosu ball exercises.
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That there are a multitude of symptoms its very hard keeping up with it all. I’m no longer the person i was! i dont know WHO i am now anymore.
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The one thing I would like people to know is that the disease can manifest itself in a variety of ways. Some people show tremors, some slowness, and some can have walking issues. The most significant event I would like people to know is that PWP can be nervous about doing a task that is mundane. The source of stress in PWP, can be anxiety over Parkinson symptoms getting worse. We tend to look ahead in a compulsive way.
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I wish those that care about me would take more time to understand the disease and the different ways it can show up. Just because I don’t behave like your in-law who has PD doesn’t mean I don’t have it or that I’m faking it. My medication took my tremors away so now there are no visible signs of the disease unless you look very closely. The fatigue is disabling. Yesterday I played down for an hour between driving Lyft shifts and accidentally slept 9 hours come on now , who accidentally sleeps 9 hours. And I was still tired. I can’t get most of my daily living activities done and work two four hour shift driving. Something is always left undone and lately it’s Been showers because I fell in the shower and I was alone and it really scared me so now I only shower if someone else is here. And that sucks! pD has a lot of invisible symptoms. It would be nice if someone asked how I was doing and really wanted to know what I was experiencing.
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That makes a lot of sense to me. Parkinson’s can show up in so many different ways. Have you tried having conversations about what it’s like for you to bring your loved ones into your world?
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Would love it if they stopped saying, “he looks great” as he sits in his chair. They don’t ever see how he doesn’t function physically or mentally if they visit for 30 minutes or less. Most of the family does nothing to learn anything about this disease. And I wish that in 2011 his neurologist when I asked,” what is our worst case scenario”. Had answered instead of deflecting, with, “everyone is different”. Wish the doctors would tell everyone, do a will, p.o.a., do what you can to protect your assets. Look into caregiving services and hope you don’t need them. The profession needs to be up front and honest.
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I was diagnosed with Parkinson’s disease in 2009 in Japan after the first neurologist that I saw said to me 99% no Parkinson’s disease. I now wish I had listened him. I recently suffered a lacunar stroke due to cerebral small vessel disease a form of vascular Parkinsonism. I also suffered a Central Retinal Vein Occlusion or eye stroke as a result of my blood pressure, cholesterol and blood sugar not being properly treated. This is something that could have been prevented if properly diagnosed and treated sooner. Bottom line is to see a neurologist and primary care manager who aren’t just fixated with the Parkinson’s disease and explore other possible causes for your Parkinson’s disease symptoms. The cardiologist that I saw said my heart was fine and to stay hydrated because it was the Parkinson’s disease. Subsequently another cardiologist identified moderate atherosclerosis and plaque in the carotid arteries along with valve regurgitation issues. Keep exploring until you get tge right answers. Some neurologist like to treat everything even when it’s obvious you need to see a vascular neurologist.
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It seems that no one around understands the multiple symptoms and the effect of on and off times. They see me walking poorly and think that’s the sum of it. They also have expectations of doing daily tasks that fails to comprehend the mental and physical challenges and get annoyed that I’m not pulling my own weight. Like I’m falling short due to laziness! And although I have explained numerous times when meds work and don’t they continue to plan activities that fail to take those account off times.
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No one sees the constant pain we are in. Not even our doctors. I just wish people could spend a day in our bodies.
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I wish more people understood that the parkinson symptoms change from day to day. For example, I may have no trouble walking one day, and the next day, I have to use a walker. So, they look at me with doubt and confusion. If they are feeling confused, you can only imagne how frustratitingit is for us! I don’t know frm day to day how I’m going to feel, until after I wake up. Dont get me started on how everyday aches and pains can morph into a something else much worse. I wouldn’t wsh this on anyone, but sometimes I wish they could walk in my shoes just long enough to understand.
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I I like to comment about knowing that the symptoms can change from day-to-day when I am on I am on and when I am off, you know there’s a problem. People’s expectations can be misguided based on when they see you and how your symptoms are presenting.
I wish that people would not be afraid to ask me about my symptoms or how I feel because that may give me an opportunity to educate them on The disease.
I wish that all patients knew the importance of keeping their swallowing and speaking muscles in shape to avoid choking and aspirating. Voice therapy is like SPEAK OUT! Therapy program and LSVT are critical to quality of life.
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