The old expression, “Just like Riding a Bike,” is flat out bull-shirt. How do I know?… let me explain how I came to this conclusion. When California was getting ready to instate the COVID-19 “shelter at home” order, my family and I decided that it would be best for me to be close to them. This would allow them to help me out and I wouldn’t be alone, stuck in my apartment in another state.
I packed up a suitcase with stretchy pants, anything with an elastic waistband, comfy t-shirts, and fuzzy slippers because house arrest doesn’t have a dress code. My furry co-pilot Crash was strapped into his harness and booster seat… yes, my dog has a chair that seats him up higher so he can be at the perfect height to hold his head out the window. In the backseat was my canary, Dexter, you know like the T.V. show about a blood splatter expert who is actually a serial killer but only murders guilty people…I digress.
Before my dog, bird, and I was on the journey to be quarantined at my parent’s house, my Dad had been telling me about the new electric bicycles they had just purchased. I was psyched to check them out. Never once thinking about my ability to ride a bike. I had learned how to ride as a child and of course, you never forgot… hence the saying.
The next sunny morning, I strapped on my helmet and saddled up. I was a little nervous, but excited to ride with my family. My Dad gave me clear directions and a demonstration, just like a was his 8-year-old little girl again. He held the bike while I got on. Then with a nod to my Dad, I was off like a hawk swiftly flying through the breeze… ok, maybe not. I made it down the driveway into the street and then tip over with the bike landing on me. So much for my flying hawk dreams.
After my Dad pulled the bike off of me and helped me up, I started to tear up. Not because of the fall itself even though it was just the day before I took my first Parkinson’s fall, so I just added to my scratches and bruises. No, I cried because I knew that this was one more thing that Parkinson’s has quietly stolen right out from underneath me. I didn’t know that I couldn’t ride a bike anymore, that I didn’t have the balance after all. I mean, it had been years since I rode a bicycle, but they say you never forget…
My inability to ride a bike, made me think of other things that I used to be able to do. Sometimes my brain tells me something like get up from the chair, shift my weight onto my other foot, or walk to the kitchen for a snack. Then my body doesn’t follow through or I don’t feel strong enough to do the action my brain directed my body to complete… except getting a snack from the kitchen, I always seem to be able to do this flawlessly.
I was talking to a friend about my fall and she gave me a perfect example. She shared with me that she needs to use a walker to get around the house because she had a few tumbles in the past. When her husband catches her trotting around the house without her walker and really leans into her about putting herself in a possibly dangerous situation. But she tells me, sometimes she doesn’t even think of it. She has walked on her own in the past. It’s like her brain remembers how to initiate the command, but her body can’t keep up which leads to falls.
In true Perky Parkie style, I will find a modification for losing my ability to ride a bike. I am already looking into an electric tricycle complete with a basket in the back for Crash and a basket in the front for Dexter. Parkinson’s may think it has got me down, but I’m winning this battle. I am curious, what has Parkinson’s stolen from you?… and have you found a modification to regain some power that you’ve lost?
used to ride bicycle 20 miles most day now one trip around the block and leg muscles tense up
I guess I am really lucky because I still ride my motorcycle!! I can ease up to a stop light and balance on the bike at a slow creep, then accelerate when the light changes, but I fall on my ass when I try to put my pants on without leaning on a wall or holding onto something. I don’t know why this is true, but a I don’t know a lot about why PD is playing games with my body. I test my reflexes before every ride, and most of the time they meet my minimum level to ride, sometime they don’t, so I stay home and polish my motorcycle. This will probably be the last summer I can ride it, as I refuse to be a hazard to myself or others on the road. I can’t write worth a damn, (I can write, just can’t read what I wrote).
I enjoy your articles, keep churning them out, they give us all hope.
Mark,
That’s great that you can still ride. I know that my Dad lives for riding his Ducati, and respects that one day he won’t be able to forever. So just got to appreciate every day!
One if the first symptoms of my Parkinsons 7 years ago was weakening my voice. Ever since then I’ve pursued speech therapy – sometimes not enough. I now I do”loud Crowd” every week – using zoom online. It works, but I must be consistent to maintain clarity. Life is good when I admit that Parkinson’s unwanted gift is shortcomings, so I than adapt in many situations.
Roger,
You are so right, you have to be adaptable.
I love how you turn every Parkinson experience into a learning experience.
Nick, thank you! I’m happy to hear that you’re enjoying my blog.
Hi Allison. I have lost the coordination of my hands and the ability to type on a keyboard or the iPhone with both hand. I also don’t speak clearly enough to calibrate Siri on my phone. I do love the auto correct function on the iPhone because it gets used to my word choices and history. I can only use my right thumb to type, and usually the word I am looking to type pops up in the suggested word list. The iPhone is a true smart phone 😀😀
Chris,
I think Parkinson’s will definitely be much harder without today’s technology.
When I am having an off time (which is nearly all the time) I use a stylus pen. it is easier for me to hit the right key.
I used to be an avid runner. It was hard to admit to myself that my running days are over. I can still walk (lurch) so I have taken up rucking. Ruck races are just people walking with a weighted pack. I am hopefully flying out in October to Austin texas to participate in my first race (walk, hike) with my son and his girlfriend. Changing my standards of fitness not giving up!
Sandie, I’ve never heard of rucking. I’m excited that you found something that will work for you. Got to keep moving!
I am very interested In the bike you show in your blog. If you actually get that bike, would you be able to post the information on where to get it? I read your blog every month and love your attitude in regards to your PD. Hope to be there one day.
Andrea,
For sure if I get it, I will let my readers know how it worked for me.
It’s available at most bike shops now. The reason I didn’t get it was because of its size and weight. It was too much to handle if I wanted to take it anywhere (which was my desire). It’s perfect though for using around the neighborhood.
I even tried training wheels to keep my bike ride a part of my life. It was the turns that threw me for a loop! Dancing is a coordinated effort I can no longer do. I miss it so much. And jumping jacks! Who would have thought?? I now have worked enough hip exercises that I can shake my “booty”, and dance for at least one dance. The jumping jacks? I do the modified version, where you step instead of jump.
Annie,
Yes, jumping becomes a challenge. It kind of sneaks up on you, because we don’t usually jump everyday. But it’s good that you found a modifications. Keep up the good work.
Your story is so much like mine it is scary. Sometimes it’s not good to compare stories by Parkinsonians (sorry, I can’t get myself to say Parki) who are farther along this scary unpredictable, insane journey we are on,because we might worry about something someone else is going through, and you don’t know in what order you will go through those symptoms, if at all. It all depends on the path that those brain sucking zombies take through your brain. and how fast they gobble up your dopamine receptors.
I lost the ability to ride a bike early on, although my family was never into biking, Finding out the hard way that I couldn’t swim any more was quite dangerous: in my friend’s pool I was on my way into the deep end with my then 2 or 3 year old on my shoulders. That was scary! I could still float on by back so I backstroked over to the edge making sure her head stayed up and handed her off to Daddy.
I am giving up a ginormous amount of stuff this year. I can’t knit, or crochet or sew anymore. I don’t drive anymore, not even a scooter, because I might suddenly go dysonic or dyskinetic without warning.
That isn’t to say that your symptoms will be like mine. I am in the on and off stage, so I am like your friend, sometimes I can walk very well, and I forget my walker.Then I have to get rescued.
Your Dad sounds like a great guy.
Karen,
How scary was it that you didn’t know that you couldn’t swim anymore. I’m sorry you’ve given up so much lately because of your Parkinson’s. It hard not to think about it. Thanks for sharing.
Parkinson’s Disease has stolen my fine motor skills that were so essential for my career and ended (or so it thought) my career. (I am a nurse anesthetist.) Imagine someone responsible for your life while you are having surgery who can manage your airway or start an IV line. But as I had printed on my workout shirts, “Parkinson’s may slow me down but it can’t stop me!” In an effort to beat back the enemy, after 27 years, I went back to school for my doctorate which I should finish in 3 months. This required some effort as tying became a challenge, but I adapted with voice command typing. I am now looking into teaching my replacements. Also, I have found that drawing helps improve my fine motor skills as well as my writing. Besides, the OT exercises just left a row of curvy lines. Now, I get something better, art. I have chosen the path that I believe you, Allison, have taken, to look at what we can do rather than what we cannot do. And remember, “You don’t have to go fast, you just have to go.”
Doug,
Love your quote. Thanks for sharing!
A couple of years ago while camping , I tried to ride my cousins scooter never thinking about no balance. Made it around the loop, not sure how, stopped and was shaking so bad it was hard to move legs to get off. Haven’t tried another bike, but the electric 3 wheel bike I will look up. When camping for the last couple of years we always walked. Never go nowhere without my walking stick. Thanks for sharing!
I used to be very sporty, before mrs. PD moved in. Now I am trying to be very creative in replacing things I’ve lost with something new that I might not have tried otherwise. This week I made homemade yogurt! This week I practiced my unknown topiary skills on an Alberta spruce in the backyard…I have to be intentional, because sometimes the inertia and the weight of PD is more then my will power. I would encourage you to try the bike again, perhaps with your daddy running by your side like he did when you were little. But if not, there are other fish to fry that maybe more tasty …
Rebecca,
Homemade yogurt! Now that’s a skill that you don’t want to lose! Yum!
Love your insight, perspective and humor, and I look forward to your posts on Twitter. I’ve fallen a few times but can still do just about any activity depending on the day. What I can’t do is anything as well or as fast anymore and everything is day bro day. Yesterday I felt as though I was embedded in a giant concrete block and couldn’t move all day. Today I went for a run. Its all so crazy! Good grief.
John,
It’s amazing how much your body can change… everyday is different.
I can relate. Gave up on trying to ride bike because I do not have much balance anymore.
Falling down stairs is another problem. I used to be able to run up and down stairs, with close baseket of close. I now have to hold the railing going down stairs because I miss a step and fall. So far only one small fracture.
It does get be down that I cannot do what I used to, but I am still standing and count my blessings for what I can do.
Sharon
Sharon,
I’m exactly the same with you. I can’t go downstairs anymore. And go upstairs but not down. Guess it’s due to my spacial awareness being impacted by Parkison’s.
Sometimes my husband will ‘lean’ into me when I do something stupid around the house (like leaving something in the utility tub that our washer drains into and starting a load of laundry). Or if I forget to pick up something at the store or forget events (yes, I once forgot to go to a funeral). When I start to cry uncontrollably he’ll try to comfort me and say its no big deal. It is a big deal, because those are things that I would have never forgot pre-PD.
Kirstin,
Sometimes it’s hard for people that don’t have Parkinson’s disease to understand how challenging it is to lose something that you used to be able to do. You almost feel like someone is taking small pieces of you.
Your dog Crash? That remains to be seen. I might be interested in the serial killer bird too. I could send it on missions to wipe out people who cut me off in traffic! The possibilities are endless!
I enjoyed reading this and I have some thoughts, so I’ve decided to have everyone read this and then post my own blog post on it. What do you think? You love that idea! It’s the best idea ever! Smitty, calm down. You’re going to scare my dog Crash and my serial killer bird.
John, you’re just jealous of my dog Crash who can eat small children and my serial killer bird. Looking forward to reading your blog.
You’re trying to eat my dog. Your dog wants to eat my son. The bird is trying to kill us all. 🤔. Okay. 🙃
In my Rock Steady class, I found jumping jacks to be a challenge. Some days, I can manage maybe 15-20 without stopping
. Other days, I have to modify my jumping jacks. I move my arms and then one leg at a time. I was surprised to find that I CAN jump rope. Not great but if I skip I can manage to jump without stopping for maybe 30 seconds (forget jumping with both feet together!). I do yoga and have found that I have difficulty doing the warrior 1 pose on one side. Strange because I have no problem doing it on my other side.
Hope you enjoy the trike!
John,
Me getting off the ground can be a problem too. Just gotta keep skipping!
Dear Perky, My Husband has Parkinson’s, that is why I like your sight. Just wanted you to know that I cannot ride a bike either. They say you never forget, you sure do with or without an illness
I can identify! The very same thing happened to me.
I can’t play Pickleball anymore. If you aren’t familiar small tennis court, smaller paddle and a whiffle ball. It is a quick game, fast reflexes are key. So there lies the problem. Plus many people get injured back peddling to get an overhead. It was not worth the risk. That’s it so far as of today. ❤️
This reminded me of when I figured out that I couldn’t skip any more. Of course I hadn’t tried skipping in years, but in one of my first Rock Steady classes, we had to skip. I just couldn’t coordinate it. Since then I have gotten a little better at it but it seems like there is always something that PD and I are playing tug a war with. I like the bike with the baskets. I think we should all get them and start a new gang of bad ass bikers!
Lauren,
Love it! I would be a member of that group!
YES!
Lauren, that’s a great idea!
Jan
Lauren I like the idea of a gang of bad ass bikers. Go for it.
Really don’t need a basket for Dexter the Canary. He could perch on your shoulder like Inspector Clouseau and his Parrot. Another good thing about a three wheeler is there is always a seat to sit on and eat fro-yo under a shade tree. 😎
Dad, I like where your heads at!
Well I took my gazillonth fall the other day… it was my fault because I wasn’t paying attention. Thought there was a flat walk off the sidewalk to the parking lot…well there was a slight step down so I couldn’t catch myself and fell flat out on my belly earbuds went flying! I jumped up surprisingly and grabbed my earbuds and got in my vehicle. Didn’t scrape up or hurt myself too bad. What has PD stolen from me…a lot. My balance is terrible. I can’t carry anything with a little bit of weight or I lose my balance….i just lose my balance all the time. I had a great pregnancy but each year after I delivered i started to decline a little bit more. My daughter is about to turn 4….I am not the mom I want to be. I’m not very patient, I can’t run and play, I can’t go for walks in our development to the neighboring farm and see the cows or to the pond to watch the geese and they have baby geese now. I used to dance…tap and ballet on pointe…forget that. I used to play softball…forget that and I really do throw like a girl now. The list goes on. I’m in physical pain every day and it pisses me off! I’m so tired of PD and I want my life back….but we know how this goes so I try very hard to not be exhausted every day and enjoy every precious moment i do have to enjoy my baby girl and my family and my job and my life…it’s not always easy…most days I’m mad or sad about my reality but I try…hard. And if my husband would just give me a damn break maybe I wouldn’t be so stressed out, tired, in pain as bad, and not so angry all the time! He says he understands but really he doesn’t and just complains about me not helping around the house and he can’t do it all. I can’t clean because I lose my damn balance, feel like my back is going to give out, my knees are so stiff and the damn Dystonia in my right foot helps nothing…..
Shannan,
Wow! I’m so sorry you’re having such a challenging time. I couldn’t imagine have Parkison’s and a little girl. Hopefully your husband educates himself so he can be a strong part of your Wolfpack. Thank you for sharing your story.
Does your insurance have a care coordinator who can help you get services you’re eligible for? My insurance pays for me to have 13 hours a week of home chores and errands help from a CNA.