When people first meet me, they usually say something to the extent of, ‘”You have Parkinson’s? …But you look so normal.” This comment always makes me giggle inside a bit, because if they only knew… Muahahaha! What is “normal” anyways and who decides what qualifies as “normal”? I have always tried to blend into my environment. Laugh when it’s appropriate, smile when it’s not creepy and make eye contact while occasionally blinking. But I am pretty sure that not many people know just how much energy I am putting into appearing to be normal.
From the moment I wake up, I begin the process of normalification… And yes, I did just make that word up…. just roll with it. I begin by getting my medication in my body. So I line up my variation of medication that I will take in the morning, pour a bowl of cereal and get to poppin’ pills. Now for all those people who say, “I just get out of bed, grab a cup of coffee and go to work… You’re normal! But for me, I have to sit there and wait for my medications to kick in.
Then the grooming process begins… I know, as difficult as it may seem, I don’t wake up looking this stunning. I have to remember to take one task at a time or I will get lost in an activity. What this means is if I don’t focus on one thing such as taking a shower, I will get distract by something irrelevant… like noticing a sweater on a chair and then proceeding to do a load of laundry when all I really needed to do is to just get in the tub.
I finally get out of the door, showered and medicated. But now I am dyskinetic… this is when the fun really begins. When I arrive at work, I can feel myself dancing around like I’m doing the pee-pee dance. I try to focus on slowing down my movements while I talk to a co-worker, “They are seeing my dyskinesia, hold still for 10, 9, 8, … see I look normal… 7, 6, 5, … oh shoot they just looked down… 4, 3, 2, … cross your arms… 1… wait what did she just ask me?”
Then I see my first patient of the day (still dyskinetic) I bop around in my chair. A patient makes a comment about me appearing to be distracted and that they’re feeling rushed. I have to take time to explain that I am listening and I am present, it’s just my Parkinson’s is acting up. I sit on my hands in a poor attempt to slow the involuntary movements.
I go to lunch with a co-worker. As I walk up to the restaurant, a little voice in my head says, “Swing your arm, don’t clomp your foot down, smile… too much, don’t hunch forward and think about what you’re going to say as you approach.” Are you exhausted yet? I am just by writing this post.
Our food arrives at our table. I am now slow and rigid. I reach into my bag and pull out my pill case, which I must have with me at all times. I pick out my cocktail of lunchtime medications and start popping pills, again not normal. I have a difficult time cutting my food and my rigidity is causing a headache. I reach for the breadbasket and toss a piece in my mouth, which of course goes down the wrong pipe. Now I am turning bright red trying not to have a coughing attack… I fail… time to try to cough up the food I couldn’t swallow. I feel a wave of nausea rush over me. This means my medications are kicking. I feel like I am going to yak, I kindly excuse myself to powder my nose. Hit the bathroom door and begin to vomit. After washing my hands and rinsing my mouth, I return to my co-worker and smile as if nothing has happened.
I’m now dyskinetic again. I am speaking fast and sweating like I am high on crack. But I must attempt to look normal… once again, failing miserably. I am meeting a friend for dinner and order a filet. Staring at my plate focusing on swallow my food properly, I look like I am concentrating on solving world hunger. Now the protein I just ate in my delicious steak has wiped out my medications. I am slow and rigid again. I look uncomfortable, but making a valid attempt of getting my words out of my mouth in a coherent manner. I force myself to smile and raise my eyebrows, but all I get is this wide-eyed frozen look…. and I don’t mean like a Disney princess with an adorable snowman friend named Olaf.
I say good night to my friend and go home. Crash is waiting for me at the window when I arrive. Now I don’t have to put any energy into trying to look normal. He accepts me as I am and it doesn’t matter if I move slow, make weird faces, or have trouble getting my words out. I put on a pair of flannel pants and a t-shirt. No effort is needed to sit on the couch and binge watch Netflix with Crash. Tired from my day of expending so much energy just to blend in. I move to my bed, fall asleep and wake up the next morning just to start it all over again. But I look so normal?
Fantastic!
Happy New Year Perkie! Hi love you and have total admiration for you and how you inspire everyone.
I pray that 2019 will yield a cure for Parkinson’s; regardless of symptoms!
I lost my husband to Parkinson’s on Christmas Day. He was 75 and had battled a very fast progression for the last 15+ years. He never gave in.
I’ll miss him for ever and I will continue to be an advocate for the cure, for real assistance to those dealing with the disease. It’s my sole purpose now.
I’m so sorry for your loss. You’re husband sounds like a brave man. I know that he will be missed. Thank you for your dedication to helping other Parkies in need… we need more people like you in the world. Happy New Years Day!
Thank you — your posts help me feel less alone.
Thank you for reading, J! Happy I could help!
From reading this post, I just found the 13th (or is it the 40th) thing to never say to anyone. including those with and those without PD.
I think that it is so much better to say that you look exceptionally beautiful today and hope that they do not take that the wrong way. (Today? Don’t I always look exceptionally beautiful?)
You are so right, what is “normal” to you may not be “normal” to someone else.
It’s so nice to read a blog that is funny yet truthful. So many of the blogs I’ve read from people with Parkinson’s don’t really seem real to me. They are overly optimistic, cheerful, like they have it all under control. That kind of writing doesn’t help me, it just makes me wonder why I don’t have it all under control. It’s a rough road and it shouldn’t be painted like it’s all fun and games. Let’s be truthful about it. Thank you for telling it like it is. I get so frustrated sometimes; like you said, it takes a lot of work to get presentable for the day. Some days, it’s the end of the day (almost) by the time I get that done. I’ve never had to push myself so hard to get so little done. But I am grateful for what I CAN do now, knowing that in the future, I’ll look back on today and think “Wow! I wish I was feeling as good as I was then!”.
It is kind of shocking to realize the effort we put into just to doing everyday activities. Continue to remember what you can do. Wishing you the best!
I love reading your bogs. Your sense of humor brightens my day.
At a recent doctor visit, she said that I looked great and after watching me walk said that if she did not know me, she would never guess I had Parkinson’s. Now that day, I was shaky driving in, hungry and meds hadn’t kicked in. My left foot was doing the shuffle.
I told her to take off her rose colored glasses..
Isn’t it crazy how every day can be different…. even every hour? Thank you for your comment!
I assume this doctor was a Parkinson’s doctor? You’d think they’d know better. I wish I could have a Parkinson’s doctor that actually had Parkinson’s so I could feel like they actually knew what it was like to have it. I feel like they really have no clue.
This is a great slice of your life! Also a great example of how people may have struggles going on inside that the outside world doesn’t see.
Isn’t it funny how much we can hide from the outside world? Only those really close to us get to see the real struggle.
Allison you have written many superb blog posts but this one deserves the Parkie Pulitzer for its importance in portraying a typical Parkie day, beginning with our desire to look “normal”. You basically described my daily life for the past 19 years in a way that only you could do. Fellow Parkies gain re-assurance and non-Parkies gain understanding from reading this post. Well done!
Thank you Dave! I will take that Pulitzer! I would like to thank….
This blog deserves applause….clap clap clap …just wish I could put into words, these consistent thoughts.
Thank you for the 👏 claps!
Enjoyed your blog and would like to see more. I am 80 years old, diagnosed two years ago. My symptoms are very mild. I attributed them to aging, but my daughter and my doctor had different ideas. When I read about yours, I see undeniable similarities. My worst symptom is no longer being able to write legibly; can’t even read the notes I write to myself! I have a wonderful living arrangement in that I have a great apartment attached to my daughter and husband’s house. But they work evenings, Leaving me alone so much I almost look foreward to having hallucinations as I would welcome the company!
That is so great about your living arrangement! You can stay independent but relevantly safe. Thanks for your comment.
My husband has Parkinson so I am an outsider looking in. He experiences things you didn’t talk about here. Of course he has the tremor. But he is also so slow in his movements and his speech sounds like mumbling to me. He sleeps most of his day away when he’s not at work. Bed by 7 pm and up by 6. I try to be patient but it depends on my day too. He has a doctor but refuses to take the Neurologist meds because of side effect but he does take plenty of others. Sorry for the venting but most things I see aren’t current and its hard to get a reply.
Vent away! It’s unfortunate that he won’t take the meds that could give him some of his life back. He’s fortunate to have you in his life. I wish you the best!
THANKS so much for an account of your daily life. My brother has had PD for 18 years and my sister for ten years. I still can not imagine what there daily life is really like. What amazes me about your account is the strength of you spirit as I am constantly amazed at that same strength in both my brother and sister. The ability to summon the will to go through life’s daily routine with all its challenges, indignities and frustrations is such an wonderful inspiration. Thank you so much for sharing a daily experience,
Thank you for your kind words! I’m happy to hear that you enjoyed a glimpse into my life.
I can so relate!!! I “look normal” but if they only knew the effort! Only my husband and kids see me in my true state. Waking up walking hunched over to get to the bathroom until meds kick in…then I’m upright. Faking the arm swing…do that, too! Thanks for sharing. Gotta have a sense of humor…I’m only 43!
You got to have a great sense of humor to get through Parkinson’s!
I wish I wrote as well as you, because you just said so much of what I feel and do to protect myself. One of the comments mentioned knowing “others see the symptoms” and I so realate. I start a meeting looking like I am “”normal” and an hour later I am bouncing all over, dyskinetic.or full of tremors and frozen, unable to move other than tremoring like a fool. And now since the meeting is almost over, do I really want to explain the elephant that entered the room? Thank you for your expressing so well what others feel!
Thank you for your comment!
I appreciate your treatment of this subject, which on the surface is humorous, but you uncovered the truth of how it actually hurts a bit. The implication is that how we appear as patients with a movement disorder is more important than the deterioration of our brain and overall health decline that takes place in Parkinson’s and atypical Parkinsonian disorders, such as what I have. Bless you for your blog! Dan
Dam, isn’t that the truth. The surface has humor, just to make it a little easier to swallow, but underneath is pain and fear. Thank you for your comment.
Great post and one that I can certainly relate to! What I have experienced is that trying to look “normal” can cause stress which exacerbates my symptoms. I therefore am working on accepting that it’s ok to not look normal.
Thanks Perky
Giving myself the ok not to be perfect has been a challenge for me!
One more thought. Allison, I hear your enthusiasm about the challenges and about living. I love it. Of course you might not always feel that way. We can’t always. But I do feel apathy in relation to a lot of things. Do you or anyone feel apathy which doesn’t seem to be based on the events. Or is it just me?
Oh yes! That’s something I should have added. I’ve written a blog about my apathy and I’ve ran into many Parkies struggling with your same frustration. https://www.parkinsonsinbalance.net/2016/08/apathy-i-dont-feel-like-writing-a-definition/
Hi I just found your blog and I am exited to continue to read. My apathy is horrible
and I’m really wanting to hear from real people,not just those on the medical sites.
Thanks for sharing your story. I’m anxious to get to know you more!
Totally relate! Thanks for writing what we all feel..
Thank you Maria!
Yes, yes, yes, and that too. You know me, and how outgoing I am, but like you, the effort it takes to normalize for the world is greater every day, and as such, I find myself wanting to just stay in doors. Great insight once again Allison. Keep them comin’.
Thanks Pete! Let’s get waffles soon!
Love this… You made me laugh drinking my morning coffee!
Hopefully coffee didn’t come out your nose! Thank you for your comment!
Word!!!!!
That’s my life
You hit the nail on the head of my exisotent
Word back at you!
Thank you for another informative and entertaining account of your daily life Allison.
Reading the varying tones of the comments submitted, I see a sampling of how society and those of us within the PD community may view or express our/ their understanding of Parkinson’s… our individuality and uniqueness as the sole proprietor of our version of PD means we may have to improvise to address our symptoms, when conditions are not ideal…I’ve had to do that in order to establish some sort of ‘new normal’ in my day.
Curiosity, confidence, fear, resilience, unpredictability are just a few of the themes we may experience in a week or even a day when dealing with a disease that has complicated what we once knew as a perfect day.
Your blog and the honest presentation of your daily life attracts those of us that have been there, are there, approaching there or may never get there… due to so many factors that living with the unpredictability of PD presents and how we are as individuals.
Thank you for your devotion and sincerity
Thank you Shane! You’re right by saying it’s the new normal… now if we could make Fro Yo as an everyday condiment the new normal…
I’m all for Fro Yo as an essential condiment. I have no lobbying power or influential contacts since I’m living north of the border. I’m not sure if the relationship that the FDA has with its Cdn counterpart can expedite the introduction of Fro Yo as a possible ‘PD Comfort Food’….taking baby steps first…
Seriously, I continue to enjoy the honesty and the candid comments from your subscribers. I worry about those that may have given up on themselves. It’s not an easy prognosis if you fixate on a worst case scenario and let it be your focus…… Yet so much good can be found in the days we are living now with a lot of it being the people within the Parkinson’s community.
Baby steps it is Shane! Thank you for your comment!
Love this post!
Thank you!
Allison,
Another great blog, it is amazing how you share so much of your daily struggles with all of us. That takes great courage and vulnerability. I know for a fact that the courage you possess and how you express it in your blog is transferred to all of us who struggle with our own symptoms one a daily basis.
Another true example of the kind of selfless, amazing woman you are.
Thank you for sharing and thank you for your vulnerability.
Cheers!!!
Thank you Cory!
Perky Parkie,, you really are amazing! I just love how you can find and express humor in really such a difficult subject!! I tend to get a bit negative when I experience the actions you talk about. Sometimes I think about how you would describe it and tell myself to change my attitude to be like you. This is a great blog. Thank you so much!
Oh Shar-bear! Thank you for your kind words. We’ve got to get together soon! Lots of catching up! 😘
Well put and all true. Add to this extreme constipation and not knowing when the laxative will kick in, hopefully not at work, out in public or during a traffic jam.
Careful life long trips! Ha!
Thank you for this post I really like your sarcastic funny way of speaking about Parkinson !
All the best for this new year
Wow. I’m not the only one. Thank you. I’ll share this with my family
Happy to hear that you enjoyed my blog.
Your story is enlightening and a little worrisome for others with Parkinson’s who are not yet at your stage of disease progression and also have a DBS unit surgically implanted, But being fully aware that no two PWP have the same symptoms at the same stage of their own disease progression.
So, which Parkinson’s symptoms and/or issues are exaggerated for your story for your written blog and which are not?
I understand that you have to keep the reader’s interest and drive the point of the story home.
Example: Like if you that you knew that you were going to have protein with your lunch why would you take one of your Dopamine pill like 30 minutes earlier than you would normally, thus allowing yourself, medication wise “ON time” overlap.
Or are you taking those extended release Dopamine pills?
Nothing is exaggerated, my blog is written from how I experience Parkinson’s.
Happy New Year to you too!
Hi Richard,
I can assure you that with how open, honest and vulnerable Allison is being nothing in her blogs are ever exaggerated.
In regards to how she or any of us take our meds, timing is always an issue and life on a daily basis does not always allow us to have those perfect 30, 45, or 1 hour time frame to allow are meds to kick in.
Speaking for myself, with my symptoms, I have my moments of bad timing but with everything else I have to manage because of my PC (Parkinson’s Condition), timing becomes a very sensitive issue. Especially due to the fact that I have to “function” at a job, where timing is not always on my side.
For me this blog like any other is informative, because it gives me insight to help me manage my daily struggle(s), the same way as Allison does.
Sorry, I do not read or see this as a worrisome blog.
I thought it was just me who did all these things — from trying to mask my symptoms to the constant self-correction to eating protein at the wrong times. I feel like I’m living a lie with all this pretending; and yet, I don’t feel that I have a choice because I’m too afraid of what comes after there’s no more pretending. I’m afraid of disappearing.
Until a few years ago, I’d always thought of myself as fearless. Now, fear is my constant companion. I’m afraid of living with this disease, of what I know it’s going to do to me, of how much it has already diminished me and the life I imagined for myself — and I was only diagnosed 3-and-a-half years ago! The worst part, though, is the lying. There’s no way my students & my colleagues don’t notice my symptoms. The pretending only perpetuates my shame and discomfort. It’s beyond exhausting.
Thank you for sharing your experiences and your wisdom with us, Allison. It helps me feel less alone to know that there are others who see the world in the same ways that I do.
You are not alone. There are many of us dealing with these challenges daily. Don’t feel shame, you didn’t do anything to bring Parkinson’s on and by the very fact that you read my blog and wrote a comment shows me that your overcoming your fear just by reaching out for others like you.
not sureif this was tslked about alresdy in yout\f hjundeds of comments, but do you frequently vomit,or is it ainly when somethiungweird happenslike at that restsursni will vomitsometimes ifki am out walking a grat distance within an hour or so of taking my meds.
?
I don’t vomit that ofter, but I do experience frequent times of nausea when taking my pills.