There is a steady decline in the pace of my life. It comes in many forms. I began noticing about 5 years ago that I was moving slower than the world around me. I know that Parkinson’s disease is a degenerative condition and the irreversible deterioration will ultimately be my demise… yikes! Perky, you’ve gone dark…. but I didn’t expect it to be so effortless.
It takes work to keep up with the decline. I remember being diagnosed with Parkinson’s by my Neurologist and him saying, “You will probably go 2-5 years before having real difficulties. It will be a slow progression.” I didn’t fully understand what he meant. But now I get it. It is like the star jasmine vine that I have at home. One day, it looked like this meek, harmless, little plant with green leaves. Then within a few years, it has climbed high, slithering in all directions, gripping its way to the roof of my patio.
At the movie theater, I’m waiting in line for the moment when I have the crucial task of choosing between Twix or peanut M&M’s. I approach the counter with the smell of hot, oily, buttery popcorn assaulting my nose. I go directly for the Twix. I know, a bold move. I am shuffling through my wallet, “I thought I put a $10.00 bill in here… where is it?” I can feel the hot breath of the person behind me on my neck, which makes me feel rushed. The more I try to go faster, the more I become uncoordinated. Now the clerk is waiting for me. All eyes on me. I pull out the cash and hand it to the man behind the counter. In return, I get what feels like a million coins which I then predictively proceed to drop. With a huff of irritation from dragon breath man behind me, I go into full freak-out mode. I just can’t move fast enough.
Security check at the airport is the worse in my new world of sloth-speed. For example, my Dad and I went on an adventure to Europe. Just the two of us. It was a thrilling exploration of Paris, London, and Amsterdam… which involves a story about a coffee shop and a man with no eyelids… but we will save that for another day.
Going through security, I have to do the mandatory dance of taking off my shoes, removing my belt, pull out my laptop and iPad, tell the TSA agent that I have DBS so I can’t go through the metal detectors. It’s a highly stressful time because all the other people trying to get to their flight are watching me slowly struggle to balance and take off the required items. They move their trays down the conveyor belt, ramming their luggage into my tray. I tell them to go around. My face is bright red and I feel sweat forming on my face. Keep it cool Allison.
Most of my adventures that trip involved me being behind my Dad. I found it difficult to keep up. I could force myself to walk faster, but I couldn’t keep up the speed. My photo album from that trip is filled with shots of my Dad’s backside. It was at that moment that I knew I was slowing down. Most of the time I’m last to reach the door. It’s almost like moving in molasses… but not as deadly or tasty as the molasses flood of 1919. When I walk my dog Crash, I recognize the effort I have to put in each step. I can see why many Parkies don’t exercise because it’s a full-time job keeping up with the rest of the world. It’s like everyone is speeding around us as we just try to look somewhat normal.
I’m curious… am I the only one feeling like their living life in slow motion?
I felt similar issues at the airport this weekend in the Dominican when I got selected for additional screening. I was already out of whack from the drive and the main counter. I’m so glad I was able to call my wife to take over for me. When the frazzle hits, that’s it.
Take care and watch out for the molasses (never knew about that)!!
Dan,
Wow! Talk about stressful.
I’m 50, diagnosed at 42. In this past year or so, my symptoms have worsened. I’m either “Shaky Sloth” or “Energizer Bunny”. Bunny mode is when dyskinesia rules the roost also. My husband and 15 yr old hate it when I’m what they call “Spazzy”= dyskinesia. In Energizer Bunny mode, I get things DONE- cook, clean, errands, shopping etc. Spazzy time is also when I fling & flail, wobble and slam in to things, leaving colorful bruises behind!
Kathy,
I’m with you! I would rather be dyskinetic than slow. Sloth speed can get frustrating.
You say you are not contagious , but your attitude is contagious ! Keep it up!’
I thought I was youmg at 42. But you are younger than I .
Monica – YOPD . for 15 years.,Diagnosed in the 4th stage
Monica,
Thank you for your kind comment!
No yo uare definetly not alone in feeling that way. We all try to keep up and put on thatbrave face, but the faster we walk the mroe I feel like I am simply trying not to fall. Our caregivers God Bless them all even don’t understand, most put on that same brave face and say things like “its ok”, or “I understand”, but there is no way no ggod way to explain it, no good and easy way to make it easier on ourselves or them. Thanks for the Blog made me feel less alone.
Curtis,
I am happy to hear my blog has helped. Thanks for reading!
Yes and no. Yes – you are alone in the more and more slow situations of your life, alone in panic and sweat on your face. That is the world of experience. And no – you are not alone feeling like living in slow motion. That is the world of sharing, the world of universal knowledge and humanity.
Know exactly how you feel! I seldom can walk without my cane or walker, and then slowly. If I try to rush I usually fall, so I’m moving at a turtle’s pace most of the time. I don’t usually go anywhere in the mornings because it takes me so long to get ready, then I’m exhausted before I even leave the house. I guess at 85 I should be slowing down anyway!
Hertman,
Wow! 85 years young… now that’s great.
We live in a very impatient world ! Rush-rush-rush and we really don’t accomplish anything more, except high blood pressure and ulcers. We parkies have been given a gift of mandatory slow-down…look around, see what you wouldn’t have if you were running by versus shuffling. Enjoy honoring others by inviting them to go ahead of you. Smile at their grumpy, “I’m in a hurry ” faces…you’lll surprise them!
Rebecca,
What a great way to flip that negative rush people throw out there! Thanks for sharing.
Allison thank you for giving so much of yourself to our Community. You are an inspiration. Helping everyone to see positive aspects of what might otherwise be a steady diet of “Darkness” and negativity, keeps us in the “Light”.
“We can easily forgive a child who is afraid of the dark; the real tragedy of life is when people are afraid of the light.”
― Plato
I also wanted to share with the group that I recently got involved with an incredible group of PD Rock Steady Boxers (RSB) and participants in high intensity exercise. They are an upbeat group who are quick to Wolfpack and share their experiences and friendship in an effort to make my journey easier and well defined. It has really helped. As a recently diagnosed PD pup, I learn from them. I would recommend the RSB regimen to all.
“Be kind, for everyone you meet is fighting a harder battle.”
― Plato
Wayne,
Love my RSB South OC peeps! What an awesome support system! Happy to share the same help!
No, you’re not the only one.
I know exactly how you feel and the more I try to rush the worse my coordination gets. My fine motor skills when I want them generally when I’m searching for coins, seem to magically disappear. Consequently I use a lot of bills unless there is nobody behind me which eventually leads to the 50 pound purse. But then I can consider that my upper body workout so maybe that’s a win! I tell myself I’m going for a walk but it’s more a stroll. It’s ok to slow down….as long as it’s not in the middle of the crosswalk! I still want to travel so in the airport it’s cane, wheelchair, early boarding and any other assistance they offer. I’m gonna do whatever it takes to do the things I want to do.
Roberta,
Love your attitude! You’re going to continue doing what you want, but with modifications.
My big slow down eye opener was realizing how much slower i am getting*())))) into and out of my car..it brings back the memory of a dear friend asking..”why are you always in such a hurry to get things done?” Couldn’t come up with an answer but now i realize that my body must have known PD was in my future. Best wishes to you!!
Elaine,
Thank you!
The Slow Monster for me comes in the morning when I am traveling or on vacation. I can’t make the 8:00 breakfast, early flights, early anything. The results are that I don’t go. There are so many places I would like to see, but not the energy to see them.. How do you handle these things? I am a slow person in a fast world.
Mary,
Getting started in the morning is challenging for me too. It’s difficult to make plans.
No you are not alone, I often feel that way. I try to laugh at it but sometime you just can’t.
The slowness also stops many activities you previously had enjoyed. I can now understand depression but you have to get out of that through acctivities, therapy or even medication. No need to look down on yourself, you already carry a heavy load. All the best, it’s tough but you are tougher.
Thank you Casey!
Hey Perky I have put an article in our front door window. It describes how I am slow. This explains why I am slow and keep people entertained. I’ll try to send it to you. Hang in there and keep smiling.
Definitely you are NOT the only one experiencing a slowed pace in your daily ambulations. Like you, I also feel uncomfortable in situations where I might feel I’m holding others up-particularly with my son, who has ADHD and prefers to move, speak, and think at high speed. He, at least, is aware of my condition and consciously works to allow me the time I need. He’s had lots of practise, seeing me cope with PD’s changes over 14 years. My other son and I travel together on lots of short trips, as he has an eye condition requiring frequent followups in a larger centre, where I also visit my movement disorder specialist. We have the process pretty well coordinated, starting with a request for assistance at the airport when we book; I can always change my mind when arriving at the airport, if I’m having a particularly good day. I travel with a cane, and often it seems to clue others in to give me a little extra time and space.
Therese,
Thank you for sharing!
What’s the rush? I’m strolling through life. It’s quite nice when you look at it that way. You missy have bigger things to worry about like paying cash for something. Who does that still? I can’t even remember what money looks like. Is it still green? Paying for candy at the movies? Umm, you need to sneak that in like baby Jesus intended. May I suggest Skittles instead. Look into getting Global. It comes with TSA Precheck. No more taking off things or pulling out the laptop. Finally, find a hole in your community and fill it. You have the personality and skill to do it, so do it. I got sick of talking and started doing. We don’t have free Parkinson’s exercise and boxing programs in my community, so I started them. Now life is flying and I feel more alive than I’ve ever felt. Just my 2 pennies…Smitty. 😉
John,
Great idea about the Skittles! And I need to check out TSA pre-check.
I understand… Love how you wrote it
Thank you Roy!
Hi! We are all getting a wonderful gift through your writing! I’m starting my fourth year. Last year we went to ireland, this year we are going to Switzerland. The best advice I was given was to call ahead for a wheel chair. You get to skip the hassle of removing shoes! Yea!!! And fly through TSA!!! Double yea!!! Swallow your pride and ask for a chair, you won’t be sorry😛
Keep up the good work, you got this!!!
Eleanore,
Great ideas! Thank you sharing!
I can totally relate – in effort to reduce stress. I use a walker when I fly.. I am brought to the front of the line for check in and flying. It is wonderful
Jane, what a great idea!
I do 90% of the shopping for our family. I have gone to never using cash because I have such trouble getting it out of my wallet. It has been much easier just to pull out my debit card but now I get confused I don’t follow directions. And the cashier has to come and help me. It’s embarrassing so I gather all my things together I moved to an empty line where I can put my groceries and stuff down and focus on what I’m putting on taking out of my wallet.
Bob,
It’s good that you’re helping with the groceries. I wonder if before you get out of your car, you pull out your debit card. Just a thought.
No you are not alone. I try not to put myself with a lot of people too close too me. But when it does happen, my daughter and now granddaughter who is 11 take my arm and we stroll through the crowd. Sometimes its my off time and sometimes it is just panic that I can’t move fast enough.. My husband has always just taken my hand and that works too. Dogs are so smart. Our french brittany when he sees me first thing in the morning is to crawl under my legs to see if my body is working or not yet. Always walk him on the left side so he does not trip me. Keep up the good work writing! Your encouraging words make me feel that I am not alone in my struggles.
Carla,
Thank you for sharing your story. I’m happy to hear that you are enjoying my blog.
Oh dear, you are definitely not alone! Today was that biweekly horror that I fondly call…..Grocery day! My legs were so heavy that it felt like every aisle had six inches of sand on the floor. Disaster at the seafood counter as I dropped my clam dip on the floor. Collateral damage included 2 pairs of shoes, and the left front wheel of my shopping cart. Interesting side note, it doesn’t squeak anymore. The checkout experience reminds me of your TSA fun. Impatient anxious eyes boring into me as I unload cart, try to find my bonus card, then fumble with the little credit card reader. Why do those things have to be so small? Anyway, by the time I get home I feel exhausted and definitely need a nap. My son wants me to get my groceries delivered, but where’s the fun in that? I still enjoy picking out my cuts of meats and seafood, ya know?
Slow moving, heavy legged Parkies unite!
Thomas,
Wow! What an adventure you had at the grocery sore!
I feel old when I’m walking slowly, moving slowly, fumbling with coins or credit cards. I hate it when I’m asked by a clerk if I have a rewards card, because that usually means an extra hour (or seems like) at the counter trying to find it in my wallet!! The worst part of feeling old is that I’m not old!! My body is 70 years old, but me, I’m still 50-something. It’s a conflict, for sure.
Donna,
It’s sucky when you feel older than you really are. Life is challenging enough without putting Parkinson’s in the mix.
I get that ‘moving through molasses’ a lot… Even my speech becomes very slow and I sound really ridiculous. When I want to say: “careful; there’s a wasp on your arm”, the person I am talking to has already been stung. Twice!
I don’t really feel like I’m living life in slow motion, though; it feels more like someone is playing with the controls of my life: sometimes I suddenly go on fast forward and I feel and move like an 87 year old grandma even though I am 30 years younger than that. Sometimes the slowmotion button is being pushed and the molasses strikes me and my brain. And sometimes somebody hits rewind and I see the skills I aquired over the years just evaporating in front of me. Oh, woops! my pill kicks in and I am back to the time before my diagnosis.
Inge,
The unpredictable symptoms are the worst. How do you plan your life with Parkinson’s? You can’t.
I thought I was leading the search for Parkinson’s UK, not leaving you in the dust. Hmmm.
Dad,
You’re so right… we were on an adventure!
Nope not at all, you are definitely not alone.
No, I feel just like you. I hate going to the airport anymore. They make you feel so small and even slower than we really are. In the beginning, I thought this disease isn’t so bad and until this past summer, I was still a very fast walker, but now, I can feel my core and legs slowing down even as I try without success to make my old pace.. and I had DBS surgery this past June. Although my dyskinesia is gone and my off times are much better and I’m better off than I was, I still have off times and I am getting slower. I still work with a trainer twice a week and spin twice a week and walk, I can feel my body really slowing down. Balance is another issue all together so don’t even get me started on that.
Robin,
You said it! You feel small when you move slow. It’s good that you meet with a trainer 2 times a week. That’s very important. Thanks for sharing your story.
I’ve had an afternoon in slow motion. Whilst I wouldn’t wish it on anybody, it’s comforting to know that I’m not alone!
Gary,
I couldn’t agree with you more.
You sure are an excellent writer! So clever to be able to tell the pd story. I look forward to your work! Thanks
Thank you, Matla!
No it happens to all of us! I am taking care of my brother Jim. Trying to help him with exercise. Glad to hear you got to see the sights of Europe!!
Tim,
I’m happy to know that I’m not alone!