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Community Voices
Community Voices

You spin me right round TV, right round.

<p>You spin me right round TV, right round.</p>
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Community Voices

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Community Voices

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

Community Voices

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

Community Voices

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

Community Voices

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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Patience Patients

<p>Patience Patients</p>
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Community Voices

Hyperacusis sounds awful

<p><a href="https://themighty.com/topic/hyperacusis/?label=Hyperacusis" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8900553f33fe994775" data-name="Hyperacusis" title="Hyperacusis" target="_blank">Hyperacusis</a> sounds awful</p>
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