This blog post is going to dive into what Parkinson’s disease feels like. I am going to do my best at describing how it is for me.
After getting past an initial reaction upon learning that I have Parkinson’s disease, many people will often want to know how it feels to have PD. I typically tell them symptoms such as rigidity, bradykinesia, etc.
However, those symptom terms are just words and phrases.
What does Parkinson’s actually feel like?
STIFFNESS AND RIGIDITY:
THE LONG CAR RIDE ANALOGY:
You have been in a car for a long ride – ten hours straight with no rest breaks. What happens when you get out of the car after being in the same position for a long time? You feel stiff and like you can hardly walk. It was also probably a bad idea that you lifted weights and ran on the treadmill this morning before that long ride, because your arms and legs feel shaky and weak.
Now that you are out of the car, you have to tread in thick mud that feels like quick-sand to get to the bathroom inside the hotel. This is how I feel when I get out of bed or get out of a chair, even if I was only in the chair a few minutes! Before medications and when the meds either wear off (or I have a motor fluctuation breakthrough), I will feel like this even without sitting first – my walking and movements will feel this way, so that is what my stiffness and rigidity feels like.
DEXTERITY AND FINE MOTOR CONTROL:
THE CLAW ANALOGY:
Have you ever operated one of those arcade machines that allow you to use a joystick to operate a small crane that has a claw-like grabber to attempt to pick up prize items such as toys, stuffed-bears, plastic dolls, or other items? Do you feel frustrated when you think you have it in the grasp, but it falls out of the grasp of the mechanical claw and then back into the toy area from which it came?
What if you had to use a wrench to pick up items, open jars and bottles, and navigate a small pill from a bottle to the palm of your other hand – on a daily basis? This is how it feels for me to try to open bottles, and do fine-motor tasks.
ACHES AND PAINS:
THE FIGHT ANALOGY:
You have just been in a fight with a Judo and Jujitsu master who has taken you and then has thrown you like a rag doll to the ground from above his head. After hitting the concrete, you have been kicked and punched in various body locations.
After waking up from being unconscious, you feel battered and beaten, only to go face the tasks that you have to accomplish today. Yet, this keeps happening night after night, where you wake up feeling like you have just been in a good fight, but on the losing end! You also must have walked home from the fight on a gravel road, because your feet feel like they are hurting from the rocks and wear and tear of the walk home. This is how I feel many nights, mornings, and randomly in the daytime.
THE LONG SWIM ANALOGY:
After spending a whole day of many miles of swimming, you notice your legs and feet are cramping. Your toes curl, while your leg has the worst charlie-horse that you have ever felt, and you simply can’t walk because of the pain. Even your shoulder, neck and parts of your back, feel like somebody has twisted them because of cramping, tightening of muscles, and stiffness. This is how I feel many days, minus the swimming and water part of the story.
THE JACKHAMMER DRILL ANALOGY:
Your very good friend had broken an arm and asked you to help drill some holes in concrete in order to get the basement ready to put some new walls in for the new room. You are handed a jackhammer drill that vibrates rapidly back and forth and asked to make sure you drill holes exactly in the spots marked with an “X” on the floor. This project takes way more time than you thought it would.
After you leave, you notice that your hand/arm is vibrating. You also notice that you can’t adequately write, push a button, or even coordinate lifting nor drinking your hot coffee. This is how my tremor feels.
THE IRON MAN SUIT ANALOGY:
You are invited to a costume party. The party is tomorrow, but you have no costumes! No worries – because your friend kindly provides you with his Iron Man costume, which you accept and then take home to dress in tomorrow, so that you can be Iron Man or Iron Woman!
You are also asked to bring a main dish to the party.
Unfortunately, the next day – you run late to the party, as it had taken you a long time to get the outfit on. It was also hard for you to carry the dish.
After you arrive at the party, you notice that you are walking at a snail’s pace. Everyone is hungry and angry at you, because you are late! You seem to move slower than a turtle, as you try to navigate to the kitchen. This is how bradykinesia feels for me.
OVERALL, WHAT PARKINSON’S DISEASE FEELS LIKE:
THE BEAR MASCOT ANALOGY:
After spending a whole week of: having to go on ten hour car rides, opening things with a wrench, having mornings of waking up after fighting Judo masters, having days of swimming for ten miles, while having other days in which you spent many hours of helping your friend out by using a jackhammer wrench to drill holes in his concrete basement floor, and having just spent an all-nighter at your other friends’s party wearing an iron man costume…
You finally are told to help out at charity event by walking around every day this next week – in a bear costume!
You put on the bear costume and you notice that – in it, you feel stiff, rigid, and slow! In this bear costume, you also notice that: you can’t really swing your arms, you feel heavy, you feel achy, and you feel like a zombie. To make matters worse, others around you, can not understand what you are saying, nor can they make out your emotional expressions (as they can’t tell if you are happy, sad, or angry). You walk around feeling physically and mentally exhausted!
Yet, you attempt to do what needs to be done and try to go forward in this bear costume, hoping that you will not trip on something and that you can make it through the day despite this big limitation! You wonder what your next days, weeks, and months will look like (will they be like last week?), and then wonder if you are up for the challenge – and somehow, you are!
Those analogies above, my friends, are how Parkinson’s disease feels (for me anyway)!