I Have Parkinson’s Disease and This Is How It Affects Me (Part 1)
First in a series.
You have Parkinson’s disease (PD). If someone were to observe you, what would they see (external symptoms/issues) that is attributed to having Parkinson’s disease? What wouldn’t they see (internal symptoms/issues) that is attributed to having this disease?
This is not just my story. This is the story of all those who live with Parkinson’s disease, to bring to light what it can be like daily for those who live with this debilitating disease.
I have Parkinson’s disease …
You might see me shake, or show a tremor in one or more of my limbs. You might not see me shake at all. We’re all different as People with Parkinson’s (PWP). We all wear this disease so very differently.
For example, a fellow PDer has one leg that drags as they walk, while I don’t have that problem so much. Instead, I tend to shuffle, giving you cause to think I resemble a penguin as I saunter down the pathway. Some can’t saunter and some can’t shuffle. They feel like cement wraps their feet, and they are walking in loose sand along the shoreline.
If you’re walking with me, you may notice I stop and then struggle to get going again. It feels as if my feet are glued to the floor. I mentally have to retrace my steps to get going once more. But you won’t see my war to walk because it takes place on the inside of me. The me you can’t see.
Sometimes I win and keep walking. Sometimes the little monster inside of me (PD) wins, and I stop. Just about then, I start sweating. You start worrying because the beads of perspiration are running down my face like an ice cream cone on a record hot day. Don’t panic. I’m not having a heart attack, as some have voiced. It’s called hyperhidrosis and it is just another blessing of having Parkinson’s disease.
I may not appear to have Parkinson’s by your definition, and to that, I might inquire, “What should Parkinson’s disease look like?” While you are busy formulating an answer in your head, this disease is busy ravaging my body in ways you cannot understand, although you may try.
Someone who has PD has likened it to wearing a lead bodysuit. You have the will to get where you’re going or do what you want to do, but your body is determined to get you there by the slowest means possible (if at all), while exerting the most energy you have. It’s as if your life has switched to slow motion and everything takes so much longer. You expect to look in the mirror and see the likeness of a 70-year-old, yet you’re only 42. Life can be hard.
When I first began to suspect something was going on inside of me, I felt like my insides were shaking all the time. There most likely are as many people with Parkinson’s who experience external tremors as there are who experience internal tremors. You can have one, both, or neither, and still have … Parkinson’s disease. Most people don’t know about internal tremors, as you can’t see them.
Some other symptoms of PD you will never see are cognitive issues: failing memory, anxiety, feelings of apathy, and depression, to name a few. Some of these issues don’t occur because we are sad and blue about our predicament, but more than likely, they are a symptom of the disease itself, not a reaction of how we are handling it.
Look for the second column in this series at Parkinson’s News Today on Wednesday.
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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.
About the Author
Chris Merle
Bless you and your journey - thanks for sharing - the insight is so valuable.
Sherri Woodbridge
Thank you so much for your encouragement!
Heather Mills
Hello! I sent you a Facebook message with some questions I have. I hope you might be able to enlighten me on some things I’ve been experiencing with internal tremors.
Sherri Woodbridge
Hi Heather - I answered you at FB...
Tammy Gray
I wasn’t able to read your whole story. I M at a loss. I have been having internal tremors for two weeks. Every since I had the covid vaccine.
Tammy Gray
Hey. I just started experiencing internal tremors. I am lost. Mine started the day I got my covid vaccine.
Darlene Greezicki
Thank you. I always seem to be sweating no matter the temperature. I have a fan close by. I often go out in the winter with a light coat while my husband wears a parka! It’s like going through menopause all over!
Sherri Woodbridge
Exactly!!! And who wants that!?! :)
Paul Hartmann
I particularly appreciated your comments about "internal tremors". I have found these difficult to deal with and explain to family members. What upsets me most about them is how they disrupt my thoughts and interfere with whatever I'm trying to do. They rob me of time.
Paul
Sherri Woodbridge
Paul - thanks for commenting and what a great way to describe the internal tremors!
kim
Hi im Kim, I'm 53. I haven't been diagnosed with Parkinson's disease, but was tested about 5 years ago as I have a tremor in my left hand and sometimes I can't do anything with it. I'm left handed with makes things difficult. Since I was tested, I have gradually got worse I feel like im shaking inside and when I go out walking my neck feels really stiff like I can't relax and i feel very panicky. Sometimes my head starts to twitch . I've recently start to lose my balance and fall backwards. I'm always tired and find it hard some days to do a days work. Do you think this is Parkinson's, and should be checked out again.
Sherri Woodbridge
Hi - if I were you, I’d definitely get a second opinion! Whatever it is (as I’m not a doctor), it seems to be progressing. Start with a neurologist and if they believe it’s PD, ask for a referral to a Movement Disorder Specialist.
Riaan
I also get such spells and I'm a man -e specially when I eat
Sherri Woodbridge
Rain - they are annoying, for certain!
Gracie Soderberg
Your candid and caring way of writing from the heart gave my husband and I a deeper appreciation for his journey. Just started on levodopa-carbidopa. He suffers like a saint; we appreciate all that you revealed. For my part, I try to make him laugh. I believe that God has given me a special funny bone to make this happen appropriately throughout the day. Thank you for this insight. Waiting in anticipation for Wed.
Peace and Joy, Gracie
Sherri Woodbridge
Thank you so very much Gracie - your comment made my day!
Cecile
Thank you so much for sharing this. I feel better just reading it. I now know it’s not all in my head and I can explain better to others when i’m not feeling up to par.
Sherri Woodbridge
Glad it helped!
Wilma Whitlatch
Thanks for sharing. This helped me understand more why at times I'm unable to do as much as I'd like to do
Judy Coor-Ravella
Thank you so much, this was a great help. I suffer from fibromyalgia, but have recently began to have an internal buzzing sensation that can't be explained. I thought i was going crazy until I read your post it really helped. Thank you.
Sherri Woodbridge
Judy - so glad my post helped!
RitaClemmons
I’m 42 as well, I’m not yet diagnosed, but what you say fits my life. Thank you for your post. I see my movement specialist on Tuesday and hoping for an answer.
Sherri Woodbridge
Good luck Rita - let me know how it goes...
Susan
Hi. I'm 46 I've had on going symptoms progressed over last 3 years. Walking problems to start with internal tremor and jaw tongue speech tremor slowed eating .
I have had two datscan they show no evidence of PD.but show loss of dopamine but normal for my age (I'm 46)
I respond to levadopa well without it I do not function .I have rls and muscle weakness, tremor but no resting tremor and no text book symptoms but I know in my heart and my head I have PD unfortunately I'm struggling being diagnosed and the struggle daily is real.
Sherri Woodbridge
Hi Susan - thanks for sharing your story and I hope you find answers soon as the place you are in presently is a frustrating one. Have you seen a movement disorder specialist yet? If not, that would be my number one suggestion and don’t give up!
TammyGray
Need any info I can get. I can’t stop vibrating on the inside every since I had my covid vaccine two weeks ago.
Sherri Woodbridge
Hi Tammy- I am certainly no doctor so I can’t help you much except to recommend you getting in touch with your regular doctor first and going from there. It could very well me a temporary side effect of the shot. I would be interested in knowing what you find out.
S.T Stiller
Thanks for your comment ref internal tremors.
I’ve been thinking I’m going mad and trying to describe what I feel as resembling all my muscles dancing up and and down but the bones and limbs not moving. It’s comforting to know I’m not making it up, but a concern it sits alongside other PD symptoms. Thanks for writing this paper.
Karen
I have been getting internal body tremors and I had the vaccine 2 months ago, these tremors started 2 weeks ago and it’s is starting to scare me, do you think it’s related to the vaccine?
STEPHEN B JACKSON
I am a 76 year old man. I have been experiencing internal tremors in my legs for about three months. They are worse at night. I also have numbness and tingling in my feet and occasional tremor in my fingers on my right hand. I was diagnosed with vitamin B12 deficiency and am receiving B12 injections. My symptoms have not improved. My physician attributes all of these issues to the B12 deficiency. I am not so sure, I keep on thinking that I may have PD.
Pauline de Codes
Hi, I have had PD since I was 40 so 18 year, my motor was going fine for the first 3 years then I noticed the tremor,dystonia falls etc, also my internal organs started cracking the tremor, the twisting and releasing of my intestine, the pain I could do very little. Then my neurologist gave me my levodopa straight into my small intestine it is called a duo dopa infusion, I awoke
from surgery and did not need my frame, my daughter to shower and feed me I have my life back.
Recently though the PD has attacked my lungs, In have COPD and I seem to spend a lot of time in hospital with pneumonia, so yes we do get a lot of internal problems. But I have seen so many PD patients with such positive minds and that is great, so all us PD patients keep up the positive mind set the PD Foundation has come along ways. Sorry I keep mumbling along, so now it is my time to say Good morning as it is 5am and still awake
Bye
Pauline
Amy Lindberg
Stephen Jackson, have ur symptoms resolved yet w more B12?