7 Things That Really Bother Me About Life With Parkinson’s
Parkinson’s disease (PD) is a tough life and not to be taken lightly. With all the serious aspects of PD that manifest in our lives and the effort needed to manage them, it’s hard to find time to be light and playful.
With tongue in cheek, following is a list of what irks me about this chronic illness.
First, what really bothers me is waking up every day feeling sick. There’s never a break. Unlike the common cold, there’s not a starting point, a descent into illness, and then crawling out of the mire and into a recovery state of not feeling sick.
I guess that’s what puts the chronic in chronic illness. It’s always there.
At the top of my wish list is one day a week of respite from PD. It would be so nice to have just one day to wake up and feel good. Just a short break from having to focus on PD all the time. Maybe have a normal set of emotions without intense fluctuations.
There is a difference between true respite and escape. Respite is healing. Escape is mostly avoidance. When I was chasing after “feel good” actions, like video games or TV viewing, I was grasping for that chronic illness respite. But I never found it down that path.
I discovered that instead of feeling better, prolonged computer time is a trigger for seizure activity. It may seem counterintuitive, but instead of relieving my PD by grasping, I had to stop and sit with feeling miserable — just the opposite of what I’d been doing all my life.
The second thing that bothers me is when a medical provider says, “You don’t look like you have Parkinson’s.” Several providers (excluding my current neurologist) have said if I don’t have all the cardinal physical symptoms, then I don’t have Parkinson’s.
I thought I’d start wearing a T-shirt that says, “I work darn hard to look this good with Parkinson’s” in bold yellow letters against a black background. Either that or I fully assume the sick role and walk into a provider’s office hunched over like Quasimodo or shuffling like Charlie Chaplin.
Readers writing comments about my columns often identify medical providers who argue against, or deny, patient-reported symptoms. The mismatch between the story the patient needs to tell and the one the provider is looking to hear creates dissonance. As a combat vet and abuse survivor, I suffered very few PTSD-like symptoms until having to deal with this provider dissonance. I have left more than one office wanting to scream at the top of my lungs, “Can you hear me now?” That didn’t help, so I write.
The third thing that bothers me are those little packets of ketchup or mustard that come with burgers and fries. I can never get them open. Whatever sadist designed them wasn’t thinking about an old guy with Parkinson’s. I try to tear the top to separate the plastic, but it doesn’t cooperate. The fingers just don’t grasp and tear as I try to avoid squirting the contents over me and my nearby partner. Now I keep a small paring knife in the glove compartment.
The fourth thing that bothers me are sweatpants with drawstrings. Try moving your hands to unlock the Gordian knot when you can’t properly control your movements and there is a bathroom urgency. Cross-legged, straining not to lose it, I yell for Mrs. Dr. C, who untangles the drawstring just in time.
The fifth thing is stubbing my toe all the time. A doctor could have said, “You’re going to be smashing your toe into lots of things, even a flat floor,” but no one spoke up. I now wear protective footwear.
The sixth thing are the surges, most likely seizures. This invisible symptom, an electrical storm in my head, makes normal living impossible. If you saw me having the seizure, you likely wouldn’t know. I’m thinking of getting a special pin I can wear on my chest. When a seizure is about to happen, I can press the button on the pin and turn on the light that warns, “Hey, folks, brain’s on fire. Step back and give me space to recover.”
The seventh thing that bothers me is the isolation that comes with having a chronic illness. It sounds so cliché to say, “Nobody knows the trouble I’ve seen,” but there it is, no getting around it — so I keep writing.
Please share your list of bothersome things in life with Parkinson’s in the comments.
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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Kay
Does Parkinson's cause seizures? I wasn't aware of this. My sibling with MS gets them sometimes at night from sudden auditory sounds, but I've never heard of seizures caused by Parkinson's.
Leslie Disley
I agree with all of these, but they are made worse because I have also lost my sight, and have uncontrollable blood pressure.
Deborah Burke
I am a PD medical provider. I really appreciate the above, because after years of recognizing that PD causes symptoms that are not noted in the literature, I did not know about stubbing one's toe. OW!
Another new issue was "seizures" as an event inside ones brain/head. However, I have had people tell me about various presentations of events they call "attacks" also not in the literature. Examples: intense full-body shaking/tremors. Also, caregivers have reported noting abrupt cognitive disconnect. he person with seen as PD staring, seeming unresponsive but not without consciousness, or "passing out." These have gotten full workups with brain imaging, EEG, cardiac studies all without any findings. The observer does know something is happening, but the person experiencing the event just tells me that they are conscious but can't respond; no report of "brain on fire." Thank you for sharing with us.
Bob Sutcliffe
It’s annoying not being able to write legibly.
And, when I try doing something that requires a steady hand, that’s when I can’t control my tremors.
Bala R Pillai
Same as Kay. Is it a comorbidity and recognized as such?
Elf
I really, really hate not being able to turn around in bed.
Mike
Dr.C,
I have only been diagnosed with Parkinson’s for 18 months though my wife and I guess I have had it for longer. Your articles are interesting but in this one you sight symptoms I have not had. Mornings are manageable for me with exercise rather than feelings of misery. My emotions stay steady and I try to stay as upbeat as possible. Fortunately I don’t use little packets but for soy sauce. I try to avoid sweats in public preferring jeans width zippers. My shoes are made by ‘Orthofeet’ particularly for PwP’s so stubbing my toes is less an issue plus my shoes last longer! Dr.C you have provided the TBM thesis which helps me cope.
I have also begun accupuncture which helps some naturally Maybe you could give that a try for moods.
Blessings, Happy Easter,
Mike
Alan Tobey
Moving most writing to dictation has made a big difference ro me. Many popular apps support this, sometimes via an “accessibility” submenu in the Settings menu. And of course all the major OS programs have dictation options.
What surprised me is that using dictation restored much of the sense of “Flow” to my writing.
But it also makes it easier to enter sngle-letter answers to surveys and the like.
Finally, it’s easier to get comfortable with, and much more accurate than, such programs from just a few years ago.
So I’m now “telling” you with my voice “go check it out.” I’m sure you’ll be glad you did.
Sharon Maness
I really hate going to bed and not being able to turn over on my sides, and if i happen to get on my side then i can'g get up. And all the nightime trips to the bathroom.
Sharon Maness
I hear you about writing, mine look worse than a grade schoolers. I have my faughter do my groery shopping and i use the computer to write it out or she woud not understand it at all. Also when imake myself anote most of the time when i go to read it i can't.
Dr. C.
Hi Kay ~ We're doing the background research on the possible relationship and/or co-occurence of seizures with Parkinson's. Keep checking future columns. Maybe we'll find some interesting insights.
Dr. C.
Dr. C.
Hello Deborah - as a medical provider yourself we appreciate your openness to our exploration of PD symptoms that are not easily found in peer-reviewed science/medical literature. I'm sure your patients also appreciate your willingness to hearing their personal experiences with PD. Thanks for checking out the columns and hope you continue to follow our writings as we explore the PD patient world.
Dr. C.
Sue Tittershill
Having read the article about the possibilities, when having Parkinsons , i fully appreciate the journey you are on. I totally agree that loneliness is something which is totally encompassing . The honesty in your articles make this more manageable because you write about the things which others living with Parkinsons may feel; yet do not always wish to share due to fears of being judged further.
The dissonance you describe is real. Having been-diagnosed recently with Functional Neurological Disorder(FND) and non-epileptic seizures has complicated matters. There is a real lack of understanding shown within healthcare-which reinforces loneliness felt by those living with Parkinsons-exacerbating symptoms; and behavioural/mental health issues further.
Having read your posts, I feel a real sense of empowerment- Your honesty offers a real connection for others and it really does suggest a need not just for a cure;; but a greater understanding and knowledge from within the health community and not just the public.
Whilst the individual effects of having Parkinsons is very personal, it is possible one day the Parkinsons community may actually be considered a learning opportunity for others -where care, compassion and communication may return to practise and loneliness and alienation become things of the past.
May-be one day, our community will not only be seen; but also heard!
Thankyou for your posts-they truly reflect all things are possible.
Sue
Dr. C.
Hi Kay ~ I wrote a follow up column (link: http://parkinsonsnewstoday.com/2022/05/13/connection-between-parkinsons-seizures-possible/ ). I'm still trying to understand that possibility.
Dr. C.
Dr. C.
Sue, this is a very moving, touching and empowering comment. Thank you so very much.
Dr. C.