Parkinson’s is a thief. It waits until you’re not paying attention and then steals tiny parts of your life. You won’t even know that you’ve been robbed until it’s too late. It’s the perfect crime.
It’s the small things
Parkinson’s disease is a whole lot of things that make up one big mess, but the impact isn’t felt for months or even years for some people. It just takes and takes, and you might not even notice what you’ve lost until one day you realize that you can’t do something that seemed so easy before Parkinson’s. Like riding a bike.
My Dad had a previous post of a picture that was on his Facebook newsfeed… they call it “memories.” The picture was of a daddy and daughter trip we made to Amsterdam in 2014. We got a good chuckle when reminiscing our bike trip around the city, through the red-light district, past the outdoor public restroom…yes, I do mean public. I didn’t know at that time that I was being swindled. Now looking back, that was the last time I could ride a bike.
Then there are times when the little thief leaves a calling card behind, just to mess with you. It wants you to know that it’s Parkinson’s stealing your valuables. You might not recognize it right away, then one day, while exercising for a bit, you take a seat to rest. When you stand up to continue your workout, you feel light-headed, dizzy, and almost pass out. That’s what we call in the biz low blood pressure, orthostatic or postural hypotension. Well played Parkinson’s… well played.
Being inside our bodies, we aren’t always aware of the way we look to others. We’re just trying to get through our days to the best of our abilities. Fun game to play… video record yourself, then watch it. Life-changing. I did a recent zoom chat for a support group, and it was recorded. I thought I would check out the video… a big mistake. Huge. I had no idea how dyskinetic I was until I saw myself on the screen. I have been burglarized of my calm demeanor and left with a body that moves like a cat on crack.
Swallowing the swindle
Sometimes the fraud tries to mess around with my ability to swallow. It started with occasional coughing when I am drink fluids. Currently, I have to take small bites and try not to aspirate any food particles into my lungs. Parkinson’s has plundered my ability to swallow without concern. Fortunately, the robber hasn’t figured out I can still eat Fro-Yo with no trouble at all. You can’t take that away from me.
Do you think your Parkinson’s is a thief? Maybe it’s just misunderstood… but I keep swatting it down. What has been stolen from your life?
Love this!!!!!!!! Parkinson has taken all the things listed here, but also it stole a 20 year law enforcement career from me. I absolutley loved doign that and hated to leave, btu found myself becoming more and more of a liability to those that served with me. Simpoly not being able to do the things I used to as quickly and efficiently as I once did.
I have recently found that there’s a lot of us out there! We need to start a LE group for those affected by PD…
You have such a gift of word-paintings! A cat on crack nearly did me in — and reminded me that my sister had a very small/runt seal point Siamese cat and she would get behind it, reach over and hold it’s front legs up so it was walking upright — and then she’d start jabbing its front paws in the air and the way it walked was exactly like it was on crack! But I’d never thought of that phrase/image. Thanks again for all the great images you invoke!!!
Norma,
Happy to hear that you had a little giggle after reading my post!
so get an exercise bike! In fact, Peloton and the Cleveland Clinic have been participating in a research project of how exercise (on a stationary bike) helps with Parkson’s. So get back on, even if you don’t go far, in fact not even out of the room where your bike is, you can ride the world with some of the neat youtube videos. Check out Bike the World! keep on pedaling! 🙂 great analogy of the thief. thanks
Elena, what a great study that gives you a bike! I wish I knew about that sooner. Thanks for sharing!
One of my women’s support group members here in the south hills of Pittsburgh was accepted into that trial, but unfortunately was not in the half who received the free Peleton. She was disappointed, but did get a special fitbit style watch to wear 24/7 and has gotten some good information from it, and is gracious enough to be content with helping to build data.
Norma,
It’s a great way to collect data. Kudos to them for the trial.
Allison as a former law-enforcement officer with 30 years of service I have to say I love this analogy. We have to harden the target (us) to make the little crook’s job as difficult as possible. Of course we do that by being sensible with our meds, good diet, good sleeping habits, antioxidants, plenty of fluids, and primarily regular intensive exercise. Allison as always we greatly admire your courage and strength in fighting this crook. All the information that you share with your expansive Wolfpack helps make the crook’s job more difficult. Your openness reinforces that we are not alone in defeating this Little thief.
Wayne,
Parkinson’s is a sneaky little devil, but we’re one step ahead!
Allison, with over 30 years in law-enforcement I love this analogy. I also have enjoyed learning from you about all the ways that we can stop the progression and harden the target (us) from this little crook. Making the PD thief work harder and harder to achieve any level of success is our focus. Whether it is diet, good sleeping habits, antioxidants, plenty of water, and of course primarily intensive exercise at all levels, we must make the crook’s job harder and harder. Your courage and dedication to helping your expensive Wolfpack is always an encouragement. We do appreciate you, never forget or doubt that.
Hi Perky -I’ve recently been feeling ‘out of it’; that mysterious missing dopamine symptom. It’s changing my personality, so I have been told by my neurologist to practice acceptance. Good recommendation – so I say to myself, “this too shall pass”, pause, then I recapture my other self, and go forward. caveat: this isn’t always successful, but it’s the least I can dp. it. I’m grateful for what I dp have. .
Roger,
You must be grateful for what you do have because at the end of the day there are small victories that you can celebrate… even if they’re tiny.
II was diagnosed with young onset about 2 yrs ago. After taking care of both of my parents who subsequently died from complications due to Parkinsons, I went through a kind of grieving process for myself. Now, I will not allow this thief to own me. I have seen and felt what Parkinsons can steal from me but but I have my Arsenal ready; meds, excercise, family, friends, laughter, and my dog Floyd. Let’s not make it easy for this thief…fight back!
Peace,
First off, let me say, I LOVE your name! But you’re not ready to make peace with Parkinson’s! I too will not go down without a fight, although I may have to take an occasional nap! Thanks for sharing!
Aww Smitty. You seem down on yourself. Do I need to send you another candy care package?
Try not to look at the parts of Parkinson’s as the whole. It’s too overwhelming. If you see 10 10lb weights as a 100lb weight, you’ll give up. It’s too much. You can still ride a bike. This whole once you’ve learned, you’ll never forget is total crap. I forgot how to ride a bike. I had to remember how, then fall a bunch. It hurt, there was blood and bruises, but eventually I figured out how to ride a bike with Parkinson’s.
Whatever you enjoy most in life, figure out how to do it with Parkinson’s and give the rest to PD. It can have the garnish of life, I’m keeping the meal. 🧡
Thank you John. Haven’t seen you around online for a while. Happy to hear from you!🙂
Miss me bad, huh? 😝 I’m on Instagram. I’ll friend you.
Thanks for sharing. Keep up the fight
. Bud and Ginger
Thinking of you and missing our sessions with Gretchen. Boker says he has a ton to be grateful for and works hard every day to do good and do well. Hope to see everyone at a RSBSouthOC reunion someday.
For sure! See you in a couple weeks!
Sometimes I grieve t about the things Parkinson’s has taken from me- being able to cook a meal, the energy to play with my grandchildren, the ability to walk without a can or my fancy red Rolator! But I am glad to be able to breather, get out of bed, dress myself, and spend time with friends. I really enjoy your blog and. This Parkinson’s journey needs some laughs.
I am reading this while sitting in the car while the rest of my family is in the store. I planned to go in and drove them here, but when I got out, everything told me it was not ready. I am feeling better after the forces rest. I have learned not to go charging in to busy stores where there is so much to navigate. If I am not doing well, I have to intentionally plan every step. I am turning 50 in a month. Parkinson’s has taken many things from me. Not just me, my wife and 4 kids. I guess many parkies have been there. You think you are doing better, then you get reminded it is still there
Thanks so much for your blog. Your comments and observations are spot on especially for me in respect of the Zoom calls. It brought home how miserable my masked face must now look to others. No wonder people keep asking if I am alright all the time!
Your experiences definitely strike a chord with me.
Many thanks.
I lost my sense of smell and along with it an enjoyment of many types of food. I was a guitarist but no more. So many other things that if taken one at a time don’t seem so difficult but as they add up and they exact a toll. We just need to keep fighting and supporting each other is a great help. Good to know we are not alone.
A cat on crack 😉 Love the image and can now smile when hinking of my uncle who’s gone, no longer sadly but like this cat.
I owned and managed a small farm, raising animals for food, growing a one acre garden and doing repairs and updates as needed. I no longer have the stamina or strength to do a quarter of that kind of work. Now I have 8 small raised beds for a garden and do what I can to around the house. I have very little confidence and am afraid to be around people. Before I hosted dinner parties and receptions, was the primary organizer for a non-profit that drew national attention. No more.
I choose not to mope or cry or sit in a corner as a quivering mass of snot and tears. Instead I maintain a positive attitude and participate in online support groups. Why cry over spilt milk when you can laugh which increases dopamine! So wipe up the milk and make today the best day of your life! Collette
Couldn’t of said it better Collette! Thank you for sharing!
Re ‘making the most of every day’ — our Delay the Disease exercise class instructor never fails to end her classes with “It might not be a good day, but there is SOMETHING GOOD in every day!” It sends us off both physically and cognitively challenged, but with the challenge to see and name that ‘something good’!
Parkinsons: the greatest illusion and the ultimate thief.
Oh, David, I like that description!
It’s difficult for me to separate whether the loss of some of your function is due to PD or dare I say it…aging? Both are irritating, but at least aging is more predictable.
How dare you, Dad! I will be forever youthful!
I see this as a war, and I keep losing battles. I lost my ability to drive, to cook a simple meal for myself,, my ability to work in my profession, and I lost the battle to maintain y balance.
I’m still fighting and my wife and I have maintained a sense of humor. I provide plenty of material.. I am still get up by myself,at least most of the time.
Marc, I am happy to hear that you’ve kept your sense of humor. Keep fighting. Your wife sounds awesome!
I was a professional, touring guitarist/ vocalist for my entire life…no more. Even doing local gigs has reached a point where it’s getting difficult. I can relate to the video story. Every time I see a video of myself I cringe… When I was first diagnosed, you were a great source of information and comfort for me. I thank you for that…
OMG! I have said many times, that Parkinson’s is a thief that just takes and takes. I appreciate your blog. Sometimes we try to laugh about the changes and how weird we do things. However, it really isn’t funny, but better to laugh than cry. Though a good cry can be cleansing. Thank you. Barbara
Barbara,
What ever gets you through the challenges! I’m here for the tears or smiles!
Well said as usual I’ve also suffering thru the swallowing thing but I’ve got something new my blood pressure goes up when my. Sinemet starts to wear off ! And with a dilated aorta I’ve got to be careful with it! It came from me lifting heavy while not knowing I had high blood pressure! It’s crazy this disease! I hate It!!!
Mark,
Parkinson’s sometimes makes no sense!
Mark – after I had the DBS surgery, and was able to reduce my meds by about 50%, my blood pressure was consistently high! Finally, an ophthalmologist figured it out. PD and its meds keep your blood pressure low. Apparently mine would have been creeping up if it hadn’t been for the PD. Weird, huh? I am starting to figure out that PD affects every area of life in some way.
And Allison – I choke on my own saliva! I also have difficulty with juicy foods like watermelon, and foods with little unexpected particles, like popcorn. But I just bought a fantastic bike on FB marketplace, and am hoping to ride a lot when I’m off work or the summer!