There’s an overabundance of scary things in this world. I know that I look like a skilled assassin ready to attack, but the truth is… I have many things that get the hairs on the back of my neck to stand up and shout, “ruuuunnnnn!” Like, take for example Pennywise the Clown from Stephen King’s movie“It”. Now if that doesn’t make you crap yourself, you may not be human.
Growing up, I can remember having slumber parties with my girlfriends. Blankets and pillows tossed in the middle of the floor, peppered with junk food that would fill us with so much sugar it could make an elephant diabetic. I would wrap myself in a blanket and plant myself right in the middle of my girlfriends because you know that the crazy clown killer will most likely pick off the strays that wandered away from the group.
I always felt like I was doing something deviant by watching a rated-R horror film. There was something exciting about sneaking in a movie that my parents wouldn’t normally let me see. I knew which friends had the “cool” mom who would actually go to the local video store and rent the scary movies for her daughter’s upcoming overnight jamboree.
I never really understood the terror my parents were protecting me from. I tried to act all cool like sadistic clowns had nothing on me. But then I would spend evenings plagued by nightmares about Bozo. Then I learned if I turned the sound off, covered my ears or put a pillow over my face with just a little space to sneak a peek … the scary stuff didn’t seem as bad. Who would have known, when you eliminate the creepy music and loud sound effects, watching “The Poltergeist” is like watching “Mr. Rogers’ Neighborhood“.
Nowadays, I have learned that there are much scarier things in life than a fictional vicious shape-shifter clown who can morph into your greatest fears. For example, there are large packs of rabid dogs, flesh-eating bacteria, spontaneous human combustion, or parasitic twins. But for me, it’s called Parkinson’s disease.
Think of how scary Parkinson’s really is… let’s break it down.
-It impacts your movements… to the point that you can literally freeze up.
-You can have a tremor so bad you can’t feed yourself.
-You can begin to feel like a burden on friends and family.
-You lose the person you once were.
-Facial expressions can diminish.
-It can make you feel weak and disabled.
-Medications can cause hallucinations or compulsive behaviors.
-You can lose your ability to speak.
-The loss of multitasking
-It’s a degenerative neurological disorder.
-No matter what you do, there’s no stopping the progression.
-There is no cure.
But out of all these scary things Parkinson’s can be…the most terrifying is the unknown. Just because you have the diagnosis, doesn’t mean that you will get every symptom listed above. Nor does it define how your disease will progress. The unknown means that you have no control over Parkinson’s, which is the scariest thing of all.
What’s the scariest thing about Parkinson’s for you?
I look forward to seeing your blog posts!! I have had Parkinson’s for 14 years. I had DBS in 2016!! I wasn’t afraid at all. Lots of faith in God and my doctors. Right now I’m doing Rock Steady Boxing and exercising when I can. I try not to worry about the future but that can be hard at times. I watched my Aunt and sister die from this disease so I know some of what’s going to happen!! I know everyone is different. I try to keep a sense of humor. What else can you do. Thank you for sharing your experience!!!
Hello Joanne,
That’s great that you have such a positive outlook and spiritually. Thanks for the comment!
I am scared that my personal progression speed might change and accelerate. I have seen this in others in my personal life…their symptoms are fairly quiet, and then in a matter of weeks/months the deterioration is much quicker.
I wonder “Will that happen to me?”
In the meantime I fight like crazy, and try to be positive as much as I can.
Hi Bob,
Yes, I see it often, someone is doing ok. Symptoms are present but somewhat under control, then they just deteriorate. Usually after a stressful event or another health issue comes to light. You can’t worry about tomorrow, only today. Make it a good one.
What I hate most about Parkinson’s is that:
has weakened my voice and there isn’t a day that someone says to me. “Slow down and speak louder, I can’t understand what you are trying to say to me.” I have taken voice PT, but my exercises no longer work any more because my throat is so weak.
Taken my ability to swallow. Every time I try to eat a meal my face is so stiff that I bite my tongue
I can’t even write my name on a paper because my hands seem to be alien to what I am trying to write
I have internal tremors in my legs and hands so that I can’t even screw something together or to try to wire anything
Not being able to remember things I recently did because of dementia
But, hey it could be worse..I would rather have Parkinson’s than having 4th stage cancer with only days to live. I prefer PD over standing in line knowing that you only have 2 minutes left until the soldier shoots you in the head. My relatives have suffered both of these.
I hate the loss of these functions in my life. Hopefully I will wake up tomorrow morning and say “hello PD, what’s your plans for me today?”
Hello Chris,
Yes, my speech is getting worse. I say it’s like trying to talk with peanut butter in your mouth. I talk too fast and mumble my words. These aren’t cool traits to have, but you’re right, it could always be worse. Thanks for sharing!
Just a few thoughts on having Parkinson’s,
The most difficult aspect for myself in my journey with Parkinson’s is how it has impacted my career path. I am a nurse with specialized training in venous and arterial access in critical and emergency care. With the tremors in my left arm ( I am left handed ) I am unable to do this aspect of my work. I am unable to accurately measure and administer medications, the list can go on. Accordingly I am no longer able to work as a nurse. This is not a poor me rant, but rather a little background.
Over the past couple years I have learned many ways to work around the body having a mind of its own. I have learned to utilize my right hand more, my kids laughed at me as I was working on relearning how to use my right arm especially my son calling me a spastic pin ball. I actually find the journey a fascinating one. Although my tremors and other bodily movements are annoying at times, I find myself learning to compensate and learn work arounds.
I can only speak from my own perspective, but the diagnosis of Parkinson’s is not the end of life and the enjoyment of living, but rather a new beginning. It opens new avenues to learn and explore. But more importantly it made me realize I had been putting too much effort into the wrong things. I now find that family and friends are the most critical component to living with Parkinson’s.
Hello John,
I couldn’t have said it better. Thank you for reminding us how important family and friends are to our overall health and sharing your story.
I am realizing that pd is a disgusting disease. Have had it for 20 years and see the changes becoming more noticeable. I am petrified of the what if….wish I was able to forget that I have PD for a day. I need a break from the constant worry.
Had DBS surgery 7years ago! It was life changing !
Hello Eileen,
That’s one thing I realized about my life, there isn’t a day I don’t say the word Parkinson’s. It’s such a drag.
As you said, the unknown.
i’m not scared by the major progression except for dreading the day i am put in an assisted living facility by my children. i was diagnosed 22 years ago and did quite well until about year 18 and started to progress much faster. mental and physical fatigue much worse, feet are rigid all the time, abdominal rigidity Becomes very painful when off. i’m taking 100-150 C/L every 2hrs and switch to 50/200cr a few times a day to extend on time. can’t tolerate agonists, mao-b inhibitors, amantadine so stuck with C/L. I go off in less than 2hrs but cqn’t take a higher dose or more often siince 200mlmwill lower my BP too much, so taking C.L every 2hrs, going off before i take the next dose. after eating anything, not just protein i have to wait 2hrs before taking the next C/L so ii eat small breakfast and large dinner. often i won’t come on taking a dose 2hrs after a meal, if the dose doesn’t kick in in 90minutes i’ll take 100C/L. to be safe i take my wrist BP before every dose and if BP is too low i’ll wait 30min and take it again, but if i’m having too painful abdominal rigidity so i have to take C/L right now ‘l,ll l take 300CL, wait an hr and take 50mg if i’m not on yet. suffice it to say every dose can be different. . so quite a roller coaster ride and i’m used to it. i don’t think about al the activities i used to do, skiing, biking, soccer, hiking, basketball. i exercise t home with stretchbands, statiionary recumbent bike and toe raises, knee bends and other exercises. i’, in pain from rigidity all the time and painflll abdominal rigidity and more recently lower back pain often makes simple chores like dishes exhausting..
i have automomic problems too. if the temp is less than 70 deg and i exercise my hand temp goes down to 85 and at times my forehead temp goes that llow. thus i don’t go outside for long in cool weather. yesterday i rode my recumbent bike to 25min in a room whose temp was 60deg and had to quit since i was feeling brqin dead. my oral temp registered 90deg. my forehead temp was 95deg. so if i couldn’t get heat i’d have to stay somewhere else that had heat. i also experience a permanent increase in pd symptoms when under anesthesia and when i get any kind of immuniization; just had my covid booster#2 and my balance is worse. wiill get worse after my flu shot.
you might ask why no dbs? i’m allergic to the metal in the case that holds the controller and battery. to see if i was allergic,
i had the case taped to my arm for 3 days and i developed a rash.
constipation got worse recently, i have to take a laxative everyday. my vision in my left eye is bizarre, tendrils come out of stationary objects and objects wave like leaves in a breeze on a tree.. my opthamologist and neuro assume my pd is causing it and there’s nothing they can do.. i have to exercise my voice everyday otherwise i can onlly whisper.
i freeze at every doorway and it’s difficult to start walking. ii have solved that problem with a simple walking stick add on. i bend a foam “noodle”, this is a piece of foam like you use to insulate pipes but you can get what you need at the dollar store used as a pool toy. bend it so there is about 8″ at the bend that can be slipped over the end off the walking stick. there should be about 18″ of the noodle after the b4end, make it longer and then trim off some if it’s too long. the way you use this “hockey stick” is you place it in front of you and step over it. no matter how off i am, i can strep over the noodle. after you are happy with the length of the noodle that is vertical on the walking stick and horizontal on the ground use duct tape to attach the noodle to the walking stick. i suggest you don’t use black or grey tape because people may think you are using a hockey stick, a light green tape would be good. you can add stickers, streamers or what ever to make it look less threateniing. no matter how off i might be this always gets me going. one last thing, the noodle part you step over might be too high -you bump into the noodle – so check this out before taping it onto the stick, if too high you;ll have to take off a slice of the noodle fasten the noodle so it doesn’t rotate and cover the noodle with tape, it will tear apart without the tape covering.
Hello Gorfon,
What a story you shared with us. One thing that I find inspiring is your will to face the battle head on. You have found some guidelines about taking your Carbidopa/Levodopa that work for you. You modified your walkind stick. You have taken the time that you’ve had… a whole whopping 22 years with Parkinson’s and challenged each symptom that came your way. Thank you for sharing your journey with us.
Yes the emotional and psychological impact of the diagnosis is the worst. 💯 agreed. I’m almost 2 years in and thankfully haven’t experienced much progression. I’m more grateful than ever for what I do have but I seem to have an undercurrent of anxiety of the “unknown” of the disease. You are gifted, Alison, in being able to provide humor but raw truth at the same time. Thank you. 💜
Hello Alisa,
Thank you for your kind words. It’s nice when you come to the realization that you are not alone in all this messiness.
You hit the nail on the head.
I agree. The scariest thing about PD for me is the unknown – makes it almost impossible to plan anything. Even scarier than seeing The Exorcist on a blind date when I was in college. Very. Bad. Idea.
Hi BB,
Ha Ha! Taking a blind date to see the “Exorcist” does seem to be a very bad idea!
For me (a single mom who adopted two daughters Internationally) I’m terrified of losing my independence. Currently on disability for pain in hips and legs that doctors can’t figure out how to address. The other day while taking my 15 year old daughter to school, i almost ran a red light. Just didn’t see it. That got me worrying about losing my license due to PD, which spiraled into thoughts of losing the ability to live independently… ugh. One day at a time. And to the gentleman who is getting DBS, it’s the best thing I’ve ever done for PD. I can hardly believe that I was nervous about it.
Hello Karen,
Being a single mom must be tough with Parkinson’s. You have something that depends on you and you can depend on your health. I admire your strength. One day at a time.
okay–for the time I have been diagnosed, my symptoms have been mild. Exercise is the best cure for me–that and remaining interested in things outside myself. I don’t find listing all the scary potential events at all helpful.
Hello Terry,
That’s great that exerercise has beeb so helpful for you. It’s definitely a great way to slow the progression of Parkinson’s and helpful when faced with your mental health.
I can’t stand the thought of progressing with this disease. I try not to think about it and just live each day but I am really afraid of what is to come. Ii guess the worst, to me, is losng the facial expressions. I have two little grandsons and more on the way I hope. I don’t want to be the scary grammy that doesn’t smile.
Thanks Allison for this post. Honest and real.
Hi Lori,
It’s pretty difficult to have masked face. So much of the communication we have with one another is through facial gestures. I’m sure you won’t be the scary grammy… you just have a really good poker face!
It’s all pretty scary and as soon as you accept that you can live with one thing and it isn’t as scary anymore, something scarier rears its ugly head. My biggest fear is being a burden to my family. When I don’t feel like exercising, that is the thought that gets me to the gym. We do need people to know about the scary side of PD. If people think it isn’t that bad, we will never get funding to find more treatments or a cure.
Hi Lauren,
It’s so true. The scary side shows the reality of what can happen with Parkinson’s disease. If there is more attention to its impact the better.
Allison, What do you say to people when they ask you, “how are you doing?” I could lie and tell them everything’s fine. Or I can tell them, “do you really want to know?” I don’t know if people really want to know. But I feel so fake but I say everything is fine.
Hello Gail,
Yeah, most people use that “how are you doing” as a greeting and have no intention of listening to your response. Maybe try replying “Today is a good day”, or “I’m still standing” or “I’ve had difficult month”. Just a thought.
Not knowing what will change next keeps me on edge. The fact that there is no straight trajectory, that I never know what to expect. I think to some extent we’re all somewhat fearful of the unknown whether we have Parkinsons or not, now I’m just more fearful. Still thankful for the life I have, but fearful. Heading towards DBS surgery and having someone monkey with my brain really scares me.
Hi Roberta,
It’s so true! And each person has their own version on Parkisnon’s. There is no owners manual. Wishing you the best outcome with you upcoming DBS surgery… it’s been a positive experience for me.
Roberta, you’ll be a new women I promise you, it has certainly been a very positive experience for me. It has been 8.5 years since I had the implant done and has made all the difference for me. Best wishes and I hope it goes well for you.
Hi Perky,
Thank you, a touch of realism once in a while can help us cope as well.
Thanks for what you do.
And thanks to all your commenters.
Hello Royall, My hope is that this can become a place where people can share their experiences. Thank you for your comment!
Thanks for this post. It really helped me.
It’s fear of the unknown for me, fear of ending up bedridden and unable to communicate in a nursing home.
It’s frankly terrifying me.
Sometimes, it seems like everyone else with PD is bright and cheerful and I am the only one lying awake at night, contemplating a horrible future.
Hi Re,
Oh no that thought is terrifying! Being trapped in your own body unable to communicate. Now, you’ve given me nightmares.
The thing that scares me is Parkinson’s Mask. The thought that I might not be able to smile at my grandchildren, and that others might think that I don’t care or am not interested in what they are doing or what’s happening around me. Because losing that true personal interaction is the thing that terrifies me, I do facial exercises every day to ward it off! 🙂
Hello Mary,
I never really thought about it until recently. I think sometimes people can think that I am bored or rude and you do lose the ability to connect with others. Thanks for sharing and keep up those facial exercises!
I’m scared to end up sat in a corner a shaking wreck….
At the moment I’m responding well to treatment and I’m 6 years in from diagnosis.
It’s the fact of knowing that, at the moment, it is impossible to beat. No matter how hard we fight, Parkinsons will be with us to the very end.
Hello Pamela,
Parkinson’s will hang on till our last breath. But that isn’t today, so hopefully, we can find happiness someplace in our lives until then.
inability to think clearly / dementia… the foot twitch, knee ache and crappy walk isn’t fun either (nor is the anxiety), but losing control of my brain scares the beejesus out of me.
Hi Dan,
After years of working with Alzheimer’s and dementia patients, I’ve seen the loss of memory and its impact on loved ones. You’ve added another scary thing about having Parkinson’s disease. Ugh!
My biggest fear is becoming so disease-focused, because of PD’s pervasive intrusion into my life, that it becomes me and “wins” versus my desire to live life fully with it as only an attachment. I’m forever battling the “pained expression, and “how are you?” conversations. I sometimes feel that people think there’s nothing left of me or my life because my life & priorities have changed. Moving Conversations from “what’s wrong” to “what’s right/new/what I’m thankful for” is my challenge. It’s not being pollyanna-ish it’s my choice for my attitude!
I totally understand this. I’m new to this disease but I don’t want it to define me. I want to be me the best that I can be.
So very true!
I must admit that I was more than a little surprised when reading your post and not finding it to be funny or uplifting. Rather, I found it to be an honest description of what living with PD is like. Scary as #*%!. To cope, I try my best to remain positive and not dwell on what may be but rather what is. For the present has enough challenges to deal with without my worrying about what the future may or may not bring. Reading your blog is one of the things I do that helps. Thanks for all you do for the PD community Allison.
Sometimes I have to show the scary side of Parkinson’s because it’s true. Thank you for your comment.
“No control” Yes…
Share the scare and won’t dispair: -It impacts your movements… to the point that you can literally freeze up.
-You can have a tremor so bad you can’t feed yourself.- but eat finger foods whenever possible
-You can begin to feel like a burden on friends and family.- we have at least an ounce of independence when we can accept our sependence
-You lose the person you once were. – accept the cahnge as inevitable
-Facial expressions can diminish. – roll our jaws and eyeballs, facial calisthenics =
-It can make you feel weak and disabled. – accept this and be stubborn about challengingloss of abiltities
-Medications can cause hallucinations or compulsive behaviors. – id you can, seek other meds
-You can lose your ability to speak. accept the loss but challenge it with voice exercises and group singing
-The loss of multitasking one thing at a time – accept simplicity and live with it
-It’s a degenerative neurological disorder.ya mon, we’re just travelling a different road of life than normies
-No matter what you do, there’s no stopping the progression.-ya mon, we’re just travelling a different road of life than normies
-There is no cure. – We’ll live life to the fullest that we could – fear faced is a fear erased
I worry about lots of stuff – but just accept whatever it is – it must be what we accept .
Allison, thankyou for posting this checklist of fears, they exist in our mids and bodies – but remember the word of FDR
“the only thing we have to fear is fear itself”
Great comment. Thank you for sharing.
Thank you!!! An absolutely terrific response, Roger!!! I plan to share your responses with my family and friends!!
Well said Allison. However it is just a little less scary and a bit more tolerable with the inspiration and humor you provide.
BTW – congratulations to Eileen and Wally from a previous reply. They are wonderful people.
Dave, thank you! Gotta love Eileen and Wally
You may have to change your blog name to “Mostly Perky but Sometimes Scary Parkie”. I happen to be recording “It: right now, to watch sometime when my wife isn’t home…she thinks regular clowns are terrifying enough, not to mention evil ones.
Lol! Very nice of you not to make your wife watch it.
You found all the right words for the fear, I think I could eve fine a few more. I HAVE BEEN SO LUCKY this past month with my daughter’s marvelous wedding ceremony and reception with about 90 of our family and friends and then this past week celebrating our 50th wedding anniversary in Hawaii with our children and grandchildren. Those two events brought me tremendous happiness and amazing memories I w ill keep forever. I overcame the fear of getting through these events with the help my husband, Wally and my children and your thoughtful encouragement ,Allison. You understood The fear I was feeing. I thank you for that and for givijng me the words to explain to others what is happening to me. Thank you to all of you and to Allison for the fantastic and wonderful experiences of this summer. /And please remember Allison, that the thought and prayers of so many of us you have helped are being sent to you with love..
Awwww, thank you Eileen! Hope to see you soon!
I agree, the unkown is the worst. I’m getting ready to have my DBS surgery and I’m really afraid of having it change who I am… my voice, my facility for language, my wit. I’m actually more scared of that than of the holes they’re going to drill in my skull. 🙂
You’ve got to just taking each new step one at a time, I think. The future can be scary but once it gets here, whatever it brings, at least you don’t have to worry about what it MIGHT be any more.
Hang in there, Perky!
Good luck with your DBS! It was the best decision I ever made!