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This topic has 7 replies, 4 voices, and was last updated 2 years, 3 months ago by Ryan Berhar.

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    • #16608
      Kevin Schaefer
      Keymaster

      For those of us with SMA who still live with our parents or families, it can be challenging to carve out a space of our own. Especially with all of the medical equipment we have, our houses can get pretty crowded. Still, as working adults or college students, we need space to work and relax. I thought I’d share with you all how I’ve managed this.

      My sister and I are five years apart (I’m the youngest of three), and her room used to be right next to mine. When she moved out for college, and eventually permanently when she started working and got married, I took over her room and converted it into my home office/hangout space. Then I keep most of my medical equipment in my bedroom. Once my parents and I worked out this setup, we took down part of the wall in between these rooms and had a sliding door constructed in that space.

      This system works out great for me. It feels sort of like an apartment space, and I spend most of my time at home in my aforementioned office/hangout room. I can work and play loud music here without bothering anyone, and I also have friends hang out here with me all the time. My brother also moved out a few years ago, so it’s just my parents and I who live here. My Mom and I also look after my niece during the week while my Dad, sister and brother-in-law are all at work. She’s two, and definitely keeps us busy haha.

      Having this space to myself is great, and it makes me feel more independent. Plus, I pay rent and for caregiving expenses that aren’t covered by the government, so I don’t feel guilty for still living at home. I have my space and work full-time, and I have caregivers and friends helping me throughout the week so my parents don’t have to do everything. I still depend on them for certain things and help on the weekends, but overall I’m more independent now than I have ever been before. Having my own space helps tremendously.

      What kind of setup do you have at home? Who do you live with, and how do you balance your independence with being dependent on them for daily care needs?

    • #16619
      Halsey Blocher
      Participant

      I live with my parents as well. At our house, the master is the only bedroom on the first floor, so that was automatically mine. It has a large closet where I can keep most of the medical equipment so that it doesn’t feel like it’s taking over my room, and on suite bathroom that I don’t know how I ever lived without! My parents usually work during the day on weekdays, and my brother is in high school, so my nurse and I often have the house to ourselves during the day. Even when everyone comes home, I still prefer to spend most of my time in the kitchen or living room. I’m a people person so I like to be where the rest of my family is.

      • #16634
        Kevin Schaefer
        Keymaster

        That’s cool. Yeah it helps to separate our medical equipment from our living space, so it’s good you have that option. I keep my lift, BiPAP machine and cough assist in my bedroom, and my vest airway clearance system in my bathroom. That gives me plenty of space in my office/hangout room for all my non-medical stuff.

        And yeah, I’m a people person as well, but I like having my private space for working and reading/watching movies. I’d watch more with my parents, but we have vastly different tastes haha.

    • #16620
      Ryan Berhar
      Keymaster

      Having my own space is something I’ve always craved. In the house I lived in for 16 years, I didn’t have much, because it was somewhat small for my five-person family. Since we moved to a larger house a little over a year ago, however, I have much more space. I also live at my grandparents’ house three nights a week, and while it’s smaller, I still have a decent amount of space.

      • #16635
        Kevin Schaefer
        Keymaster

        That’s good you have more now. For me I just need a good space to work and hang out in where I don’t feel like I’m in anyone’s way. In your parent’s house now, do you have a room to yourself? Or do you work and hang out more in the living room area?

        • #16643
          Ryan Berhar
          Keymaster

          I have a good sized room, and it’s nicely located in the corner of the house. In the old house, my room was right smack in the middle of the house, which was annoying.

    • #16627
      Adnan Hafizovic
      Participant

      I have one big room he is my living room,bedroom,dining room,all in one.And that room give me enough space.

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