YOPD

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    Fragile Days #MenieresDisease #Hyperacusis #YOPD #Dystonia

    It was 80 degrees and sunny. Such a nice day. A dramatic change from the days I’ve become to used to lately. While we have been having a nice run of rain free days, today was especially glorious.
    I lit the grill on the deck, felt the heat on my face from the sun and then the neighbors appeared. Not to my eyes, but to my ears. They were running the weed whacker. The sound of the small engine whirring and the spinning of the cutting wire through the grass was wreaking havoc with my hyperacusis.
    But we needed to eat and I wanted to make a nice meal for wife. I kept at it, going outside only when necessary to check the meat on the grill. I passed inside to the kitchen, then out to the deck. Exposing myself to the pains of the sounds.
    My wife has been working so hard lately, I wanted her to sit still and relax. I finished cooking, we ate and I must say it was wonderful. My head was swimming a bit. I felt as though my brain were beginning to slip. Like gliding on a banana peel.
    After dinner, I sat down and remembered I was expecting a delivery. I tracked the package and was alerted it had been delivered. I got up to go outside and get it, and my wife asked me to also check the mail. I opened the door. The weedwhacker was not operating so the environment seemed safe. I walked down the driveway to the mailbox. The neighbors were now working on their lawn mower. Trying to getting it started. I new the clock was ticking. I needed to get back in the house before they fired it up.
    I grabbed the mail and headed back up the driveway when a car drove by.
    It was the kind of car with one of those mufflers that lets everyone in a mile radius know where they are. The driver revved the engine, the power of it amplified through the muffler, carried on the broken sound waves straight to my brain.
    I stumbled, but didn’t fall. The world spun. The vertigo was instant. I fought my way through the dizziness surrounding me to get back into the safety of the house. But the damage had been done. I could not make it through the doorways without hanging onto them for stability. The rotation, the spinning, the lack of gravity. The end of a glorious day. This attack lasted 12 hours.

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    You spin me right round TV, right round.

    Derek Hough was spinning in his kitchen. I don’t know if he was singing, or dancing but he was twirling a hand held camera and spinning and then I was spinning. Immediately. As soon as I saw what was happening, I was in complete rotational vertigo. I was in lockdown mode. I was spinning. I needed darkness. I needed to ride it out. The sound faded. I was unable to communicate. Deb sprung into action. Got me the Ativan, put it under my tongue. Got my walker, placed it in front of me and I was now on my own. In the darkness. Trying to remain calm. Trying not to move as every little movement brings with it a shift in position to which my body violently tries to self calibrate. Every micro movement results in additional vertigo. I feel like an astronaut on an extra vehicular activity. A spacewalk. I am weightless, it is pitch black, I have no idea where my body is positioned in space. The hardest part is the awareness of how awful this is. If I am riding it out right, I feel the waves of nausea. I know how to breathe (deeply), how to move (slowly). I have to make it up the stairs. The most daunting of the tasks. I know that I am safe in bed. I will need to be there for the foreseeable future. It just lets my brain know for sure, I will not fall. I feel like I am falling and the bed is stabilizing. But it is a staircase away. And I don’t have any spacial awareness. But I do have a walker and wife who will lead the way. We make it to the foot of the stairs and I begin the ascent. It does not feel like there is a change in height. I do not feel like I am advancing with each step taken. I could be on a slow moving stair master for all I know. When I reach the top, I am now challenged by navigating to the bed room. I feel for the walls and walk along side them until I reach the door jambs. Then I have to orient myself to the break in the wall that is the doorway. I have to slightly push my foot forward along the carpeting. It’s still there. I take a trepidatious step forward and then another. I felt for the dresser, knew I was getting close to my target and then there it was. I had made it to the mattress. I had to sit on the side of it before I could fully consider laying down. The blindfold still on, the sound gone but for the tinnitus and the constant feeling I’m about to spin off the bed. I gain enough stability that I feel the weightless equilibrium and decide to maneuver myself fully onto the bed and into the prone position. I made it. The spinning returns but I breathe through it. The pill is helping. The darkness is helpful because I get no visual reinforcement of the motion. I now wait for sleep. This attack lasted for 4 and half hours. #MenieresDisease #Vertigo #YOPD #VestibularMigraine #ParkinsonsDisease

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    Yesterday...I had the best day! ❤️
    I did ALL the things.
    I had a delicious and meaningful lunch out with a friend.
    I then had an appointment that wasn’t a medical appointment.
    And then, I went to the Rayder basketball game.

    Today...not so much.
    I’m doing NONE of the things.
    And, the best (and probably only) thing I can do to curtail this hot mess is to curl up under a blanket and get out of my own way.

    And this is just how life goes these days.
    This is raw.
    This is authentic.
    This is life with Parkinson’s. #ParkinsonsDisease #YOPD

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    No Parkinson’s, screw you. 1 of 3

    I have Parkinson’s and Ménière’s Disease and hobbies. The hobbies are not as painful usually. I rely on the hobbies as treatment for the YOPD and Meniere’s. I like space. Astronomy. A great hobby. It shows me perspective. I like to look into the night sky and see something larger than the issues I deal with here on Earth. Unfortunately, my Parkinson’s is actively working against my hobby. I can’t bring the telescope out as often as I would like. As anyone with a chronic illness can tell you, you have to adapt.
    There is a home planetarium system. A nightlight that projects the stars onto the walls of the room in it is in. I thought this might be a good alternative to trying to get the telescope set up. I could sit in the comfort of my own home and look at the stars without fear of clouds, weather, cold, fatigue, dystonia, dizzy attack. I could layback on the couch, put on some music and just enjoy. I bought one online.
    It is a globe with a light in it. Simple. A kids toy. But a kids toy in need of assembly. Well, this is going to be interesting. I need to put this together, huh? Hmmm. A project? Ok. Let’s look at the instructions. I don’t speak this language. Must be the other side of the paper. Don’t speak that one either. Looks like the same language. Looks like I need to unfold these instructions. There seems to be a lot of steps. No tools in the package. Ok, let’s familiarize ourself to the components. A base, sure need one of those. A light. Yup. Screws, sure. Gotta hold it all together. Switch, of course need to turn it on. Computer generated film with folds to form a sphere. Ok. I see where we’re going. #YOPD #ParkinsonsDisease

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    No Parkinson’s, screw you. 2 of 3

    I’ll just follow the pictures box by box starting with the least amount done to the most amount done and just do what I see. Hey, this is pretty easy. I’m making decent time even for as slow as I move. This is a decent pace for me. I am making something with my hands. Sure I’m shaking a bit but this is in its own way therapeutic. I can see I’m building something. Now just put this through there. Take this screw and attach it through the base here and oops. Dropped the screw.
    Can’t seem to get it. I’ll just flip the base upside down and it’ll fall into my hand. Just place the screw here. Oops. Dropped it. Dang it, this is a tight spot.
    I can’t seem to hold the tip of the screw and place it into the hole at the same time. I can’t get the threads started. I notice my fingers are not capable of the task. Is the screw too small? Are my fingers too big? Is the shaking causing the screw to not go into the hole? Am I getting worse? Am I losing fine motor control? #YOPD #ParkinsonsDisease

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    No Parkinson’s, screw you. 3 of 3

    Better try the other screw hole. That’s it. I just need to start with the screw on the left side instead of the right. I mean, I’ll eventually have to put them both in, damn it. Dropped the screw. Flip the base. Deep breath, try again. Nope. Finger hit the side of the base that time. That was my fault. Flip the base, try again. Got a good grip on the top of the screw this time. Here we go. Yes! The screw is just inside the hole. Get the screwdriver. Just put the screw driver in the screw. Damn it, knocked it out. Flip the base upside down, let the screw fall into my hand.
    I know! I’ll put the screw on the screwdriver first! Then place it into the hole. Nope. Where did it go? I think it fell on the floor. Am I standing on it? Oh, here it is. You know what, I’ll try the other screw. I’ll go back to the right side again. Dropped the screw. Flip the base.
    To be honest, I’m getting a bit tired. I’ve been at this for quite some time now. So long it feels that these stars have long since burnt out. I don’t care how long this takes, I will not let Parkinson’s screw me out of building this planetarium. I will not allow my diseases to screw me out of seeing the stars. I will not be screwed by, damn it, dropped the screw. #YOPD #ParkinsonsDisease

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    You good?

    I’m not good at this. I’m not good at being sick. I’m not good at maintaining my balance. I’m not good at walking through doorways. I’m not good at sleeping through the night. I’m not good at being still. I’m not good at getting myself up the stairs. I’m not good at hearing knocking at the door. I’m not good at being in the car. I’m not good at having a conversation. I’m not good at being nonproductive. I’m not good at showering every day. I’m not good at asking for help. I’m not good at communicating my needs. I’m not good at releasing who I used to be. I’m not good at accepting who I am now...But I’m trying.
    #YOPD #Dystonia #ParkinsonsDisease #MenieresDisease #Hyperacusis

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    Apathy

    I never really knew what apathy meant. I was somewhat apathetic toward the word. I never looked it up. It wasn’t important to me. I do know what lazy means. Is this laziness I am feeling? Why do I just sit here? But I know about Sunday mornings. I know what lazy feels like. This doesn’t feel like lazy. This feels like more than lazy. This feels like I want to get up and do all the things on my to do list but I just can’t for some reason. I just can’t get up. I am encased here. Lazy has a bit of negative connotation to it. Am I lazy? I better get up so as to feel like I am not lazy. But I am so tired. My body is so heavy. My brain is screaming at itself to move. To do something. To not be lazy. If I could just get started, I could do anything. #ParkinsonsDisease #YOPD #apathy

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    Patience Patients

    What time was your appointment?

    Three

    Mine was 2:30. I got here at 2. You can never tell with this guy.
    Can you believe it? I’ve been waiting here for two hours. I went to the window just before you got here. I told the girl, I can’t be waiting here all day. I have things to do. But I’ve been here for the last 2 hours and I still haven’t been seen. I see people coming and going but they never call me. I’m gonna tell the doctor when I see him. If I see him at this rate, am I right? Hey! Why are you so calm? You’ve been here an hour yourself.

    I’ve never gotten good news at the neurologists office so I am assuming someone else is getting their not good news right now. I don’t care how they long need. I’ll wait.
    #ParkinsonsDisease #Dystonia #YOPD #MenieresDisease #ChronicIllness

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    Hyperacusis sounds awful

    Water dripping, gum chewing, coughing, shoes on a hard surface, fingers snapping, hands clapping a spoon in a bowl or coffee mug. The letter ’S.’ A ting, ping, pop, crash, slam, click and bang. Paper bags being shuffled or crinkled. Tin foil. Flip flops smacking feet. The ring on my finger against the glass I’m holding. The sound of the keyboard as I type this. All everyday sounds that I must avoid for fear of triggering a Meniere’s attack. All before going outside.
    If this is you. You are not alone.
    #Dystonia #ParkinsonsDisease #YOPD #ChronicIllness #yinyoga