What Is It Like to Live with Parkinson’s Disease?
I read a post recently in a Facebook group for people with Parkinson’s disease. The poster asked fellow group members what their response would be to others when asked what it is like to live with PD. Their answers are incorporated into the column.
Because Parkinson’s is so unpredictable, it is often hard to make definite plans, and you sometimes have to cancel at the last minute. People don’t realize how extreme the pain that comes with this disease can be, and how it can affect your day. You may look good, but you may feel entirely different from the way you look.
Pain has a way of wearing you out and sometimes bringing you down. It can lead to depression, and if you have Parkinson’s disease, you are already more susceptible to depression. It is important to surround yourself with others who are fighting the same fight. Parkinson’s is more than just a movement disorder, and the non-motor symptoms can often be more debilitating than the tremors or dyskinesia.
Stress increases the symptoms of Parkinson’s disease. However, symptoms come and go at varying intensities, so what may be causing you to have a bad day today may disappear tomorrow.
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Don’t give up.
At times, not giving up is easier said than done, especially when you feel alone and abandoned. You may feel your friends and family have abandoned you, but it’s often more a case of them not understanding your new journey. It’s probably best to give those people in your life a free forgiveness pass and move on as you make new friends in the PD community who truly understand what living with PD is like.
Parkinson’s disease causes grief, but we can choose to live joyfully and intentionally in spite of what we feel has been taken from us. It is not a death sentence, and we must learn to readjust to our “new” life. And a new life brings new opportunities. As one person said, never lose hope and keep the faith because God is doing miracles every day and you may be the one He is working through to accomplish just that.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Sharon L Krischer
Sherri, I hope it was my blog that you were referring to: Twitchy Woman, My Adventures with Parkinson's. In April I posed that question on a FB page and compiled the answers into two blog posts, What does it feel like to have Parkinsons? parts 1 and 2
https://twitchywoman.com/2018/04/09/what-does-it-feel-like-to-have-parkinsons/
and https://twitchywoman.com/2018/04/11/what-does-it-feel-like-to-have-parkinsons-part-2/
Since we often cover the same topics, I wrote the following at the end of Part 1:
Today, in the “some bloggers think alike” department: blogger Sherri Woodbridge posted an article in Parkinson’s News Today on the same topic titled: I have Parkinson’s Disease and This is How it Affects Me (Part 1)
Sherri Woodbridge
Hi Sharon - I am not sure I understood your comment except to say we all do at times do think alike and have the same timing on ideas. I think part of it is we all basically get/read the same inflow of information and can tend to present it with our personal slant to it. Hope you are doing well.
Maria
Do you suffer from neck do you suffer from neck pains? Maria
Sherri Woodbridge
Hi Maria - yes, i do suffer from neck pain. Pain in PD is very real. I use arnica gel which often relaxes the muscles so they don’t get so tight. I am not a doctor, so can’t say much else but it has often times helped me.
Ezra
thx for writing this article it's interesting to see what life is like for people with Parkinson's it also helped me with my school project lol
Norm Legro
My Parkinson's meds caused my feet and legs to swell. My MD gave me Lasix for the swelling and I got gout. Swollen legs caused Dr to diagnose Congestive heart failure. Bummer !
Got home after taking double dose of Lasix to receive voicemail from Doc that oops error was made I DO NOT have Congestive heart failure! Good thing I was not depressed enough from the misdiagnosis to do something drastic- as both Mom and Grandma died of this.
Carol
What kind of pain can I expect to have with Parkinson’s? I thought my biggest problem was going to be dyskinesia and depression. I just got diagnosed about 6 months ago - I’m 82. I’m taking Sinemet and it seems fine so far.
Carol
Sherri Woodbridge
Hi Carol - each person’s journey can differ. There’s no way to say with certainty that you will have any pain at all, so enjoy your great days and huddle together with us on the not so great days for support. We will get through this!
Meri
Hi-
I am 51 and was diagnosed in December of 2019. I found this group while looking for some sort of clarity on if my pain should be this extreme. I have not been sleeping well at all lately which leads to a vicious cycle of pain and exhaustion.
I have a virtual follow up with my neurologist next week- any suggestions on what to ask for help with first? Sleep? Pain?
Thanks for any advice!
Meri
Sherri Woodbridge
Hi Meri - Thanks for reading my column and reaching out. I go through spurts of not sleeping well also. These things have helped me: taking magnesium (powdered form in citrus flavor) before I go to bed, taking an extended release tablet of carbodopa/levodopa, going to bed about the same time each night, staying away from sugar/caffeine after dinner/before bed. The pain in PD will cause you to lose sleep so I would address that first but I think you should be able to address both the pain and the sleep in the same visit. I can’t imagine not. Good luck!
Helga Arlington
Hi - what sort of pain are you referring to? I have nerve pains in one leg - not agony but unpleasant and exercise often makes it worse rather than better. Started out as a regular twitch but now is all over the place. Is that likely to be a part of my Parkinson’s? (Diagnosed nearly a year ago).