Although I am starting to get used to the feeling of wearing wrist braces almost all the time it is still very unpleasant and difficult to work with. Writing notes in class is difficult and because of that sometimes I have taken off the wrist braces so I do not get too far behind. Similarly in lab, I cannot wear the braces because it is a safety hazard to work with them on because I lose the ability to safely hold and transfer lab ware. So many things we take for granted such as tying our shoes, putting on our clothes and writing become way more difficult when the mobility of our wrists are restricted!

~Sean

First Post in Stage One

Hello everybody! After wearing these braces for the past couple days I now have realized how inconvenient they really are. Things I take for granted like writing, typing and tying my shoes are now an ordeal. It's difficult to pick things up and maneuver them the way I want to. I know this is just the beginning of the disease, so I know things are only going to get worse.

Sean

Week Three (CON)

The week of reduced knee function wears on as annoying and frustrating as ever. I've spent all week trying to get up stairs and failing as well as walking across campus with a lovely limp. The brace completely stops my knee from bending, which you don't realize how much you rely on your knees until they're gone. Another frustration I face is people staring at me. I get a lot of looks in the direction of the brace and I want to tell people I'm not actually hurt but when I do that makes the accusatory glances even worse.

When they think you're injured they take pity on you that I feel I don't deserve that. So I explain the experiment to them, letting them know it's not really an injury. Some are interested, but most get upset in a minimal way. Overall this experiment is very stressful and upsetting in a way, and also very enlightening. It's shown me how people react to injury and how curious everyone can be when they see someone who is injured.

~Krisen

Week Three, day three

So this week is the start of phase three for me. Which means I have begun wearing a massive knee brace containing three metal bars designed to completely stop my knee from bending. And trust me, it definitely works. As of right now I have to talk all stairs one at at a time, which means I take three times as long to get up a flight of stairs as all of my friends. And to boot I have to prop my leg up in class because it sticks straight out. Sitting in a lecture hall with tight seating is not easy if your leg doesn't bend let me tell you.

This week has caused a lot of stress and frustration because I often have to go out of my way to find a way around stairs. Some places it's taken me five to ten minutes just to find the elevator, not counting the time it takes for it to get to me. Walking across campus wasn't much harder than it normally is, but I had to almost drag my foot across the ground because I can't bend it up like you normally would to walk. I'm glad I'm only in one brace this time around though because it gives me at least some semblance or normality.

~Krisen

Half Way Done!

I can't tell you how happy I am to be able to say there are only three days left of me in this brace. The frustration and anger just builds every day that I wear it. I tried to make perler bead crafts tonight, and it worked out pretty well, but I was struggling the entire time to lay the beads right. Add to that the frustration of setting up a fish tank in braces, and getting all of my clothing hung up as well. To be honest I just want to take them off and not put them back on, but I have to keep going for the sake of research.

Using the mouse for my computer is very difficult without the use of my wrist. I struggle to text and have to hit one letter at a time instead of fully using both my thumbs. It's extremely hard and very frustrating beyond belief. Like I said, I'm looking forward to taking them off and passing them down to the next member of our group.

~Krisen

30 days, week 2 (Con)

Hello again guys, as you know I've been in wrist braces all week. I've just been getting more and more frustrated with them as time goes on. My family has 8 puppies that are six weeks old and picking them up without the use of my wrists is extremely difficult. Opening my pills takes way to long, and doing my laundry is also a hassle.

I'm not going to lie to you guys, I actually took them off before writing this because I couldn't stand the idea of trying to type of my laptop again with those braces on. My wrists feel free and I love the feeling. I couldn't image having to deal with that on a daily basis, without the option to just stop. I'm going to make this brief because it's late and I need to sleep but overall I feel frustrated and just in awe of even just this one thing that these people have to go through. It's a lot harder than I ever considered it would be.

~Krisen

30 days of FOP, Week 2

I will be the first of the four researchers to work through the full experiment that is being conducted and recorded here. Each person in our group is ushered into a step after the person before them finishes it. So once my week two is finished, the next researcher will be beginning week two. Our experiment includes four weeks of varying degrees of restricted movement in order for us to fully understand what it's like to live with FOP. Our week 1 was used for controls to see how different it is completely simple tasks with and without FOP. Week 2 introduces two wrist braces, one on each arm, to restrict the basic movements of our hands that we take for granted.

I am currently wearing the braces and will be continuously wearing them until Wednesday of next week in order to maintain the illusion of having lost the use of my wrist. It's taking a lot of effort to just type on my keyboard to write this blog entry this morning. I guess I never really realized how much our wrists move while typing, so having that taken away is a whole new mess for me. I have to keep my hand elevated above the keyboard rather than wresting my wrists on it like I normally do. If I rest my wrists I can't bend them enough to reach all of the keys I need.


 I have a couple of pills that I take daily and with the braces it took me almost 5 minutes to find a way to open the bottle that I can normally open in less than 30 seconds. By the time I got it open I was extremely frustrated and didn't even bother to close it up again. Without my wrists I had to roughly jab the top against my palm, but couldn't really twist it right so it was a struggle. My frustrations only got worse when I attempted to go through and fold all of my clean laundry. It wasn't too hard but still took longer than normal to finish.

At the end of the day I just feel frustrated and tired of dealing with the braces already.

~Krisen