Living and Thriving with PWS: The Daily Struggles

I wanted to take a moment to apologize for my absence.  I’ve been busy the last few months doing many different activities.  I thought I would make this entry a focus on how daily struggles effect the life of an individual with PWS. What I mean by daily struggles are events that may occur day to day that affect one’s mood and feelings. This becomes more difficult when you have PWS.

First of all, none of us react well to change. Recently I found out that my calories were being reduced to 1800 for health reasons. I was frustrated by that fact. I was upset but I didn’t let it bother me as much because I will lose the weight and get to the bottom of my problem. I’m thinking about other things rather than dwelling on the calorie restriction, which is keeping me in good spirits.

Another struggle that many people with PWS have, like myself, is cleanliness. First of all, if our room isn’t tidy it’s because we forget to take the time to clean it. When we have a lot on our mind whether it’s day to day activity or something that recently happened, our rooms can pile up. Ways that can help us clean it to a more presentable manner is for staff to offer an extra hand with cleaning the room up. Another helpful solution is having furniture and/or storage totes to be able to organize our room more easily. Many individuals are gamers which means that they’ll have many games that may be on our floor or anywhere we can find to keep them stored. The last helpful idea is constant polite reminders to make sure we do take the time to properly clean our room.

My room has always been occasionally messy.  I’ll have papers like unwanted mail or informational pamphlets that need to be thrown out. Also my laundry can occasionally fill up my floor which tends to happen when I forget to put my laundry away.  I’ve recently got a nice shelving unit where I’m able to store my gaming systems and have some of my games on the bottom shelf. I also got a bigger computer desk for my laptop.  I’ve been able to manage the cleanliness of my room with the extra storage. Just another way of living and thriving with PWS!

By: Derek M.

*Living and Thriving with PWS is a monthly blog column by Derek M., a 24 year-old Latham adult resident with Prader-Willi Syndrome (PWS), who has resided on Cape Cod for over three years in a home managed by Latham Adult Services with fellow residents also diagnosed with PWS.