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Commenting is the best way to get involved. Jump in the fray!June 8
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Mentioning someone in a discussion (like this: @Name) is a great way to encourage dialog and let them know who you’re talking to.June 7
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Paul78 earned the First Comment badge.Commenting is the best way to get involved. Jump in the fray!June 7
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bmw937 earned the Photogenic badge.Little things like uploading a profile picture make the community a better place. Thanks!June 6
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AskNurseLinda earned the Name Dropper badge.Mentioning someone in a discussion (like this: @Name) is a great way to encourage dialog and let them know who you’re talking to.June 6
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Hello all you beautiful spirits my name is Paris brown but I go by my souls name which is Tree I am a 25 year old artist/activist from Chicago Illinois. I was shot and paralyzed July 1, 2012 at 2am my journey as a t5 paraplegic has been bumpy just like all of yours, filled with love , anger , depression etc.... in the firsts few years I was truly sad and almost hopeless i was shot during the summer leading to my senior year of high school and I almost didn’t go back but I’m glad I did I finished my senior year out strong graduated then went on to do a year of college but with no real support systems I dropped out after my first year. Fast forward to 2017 i was reciting a poem I wrote at an open mic I went to and got asked to be a part of a small documentary the Chicago tribune was doing of music and violence in Chicago that lead me to eventually be hired by a non profit organization in my city named Alternatives inc that’s focuses on youth and family services. Working with this org lead me to connect with black lives matter Chicago and that really sparked my activisms jump again to this year I’m no longer working for Alternatives they fired me partly because of discrimination and also white privilege but I still do activist work with a youth lead community organization called Goodkidmadcity u can find us on IG: @gkmc18 there u can see all the community work we do . I am also a recording artist I’ll post links to my music and Vidoes soon looking forward to this experience peace and love0May 28
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AskNurseLinda@marylegree, it is a great challenge to be a 24/7 caretaker. I have experienced this. A good escape is to read a book in down time. Serves as escapism. Sounds trite but it can work.
Even better is connecting with people online. It is amazing how many others are in the same situation. Just being able to discuss happiness and frustration is a diversion. The world can open up with commonalities.
You might also look into topics that are totally unrelated to your situation. If you enjoy a hobby, there will be an online group with ideas that have nothing to do with day to day living.
I might also suggest having people over which is good for both you and your spouse but preparation can be overwhelming. If you go this route, starting very small is best in my experience.
Sometimes organizations will have volunteers that will sit with a person. They do not do personal care but it might provide a free hour to go out or just sit outside in your yard. The first time is so hard to let this happen when you are the source of care but it gets easier.
Mary, there are people in this community that are with you and your husband. Nurse Linda -
AskNurseLindaHi, @Tree and @garrisonredd, Thank you for your activism for the community and other extremely important issues. People like you make the world a better place! Nurse Linda
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Lyndap earned the First Comment badge.Commenting is the best way to get involved. Jump in the fray!June 5
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wheelchairwarlock earned the Name Dropper badge.Mentioning someone in a discussion (like this: @Name) is a great way to encourage dialog and let them know who you’re talking to.June 4
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Commenting is the best way to get involved. Jump in the fray!June 3
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wheelchairwarlock earned the Photogenic badge.Little things like uploading a profile picture make the community a better place. Thanks!June 3
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Hi, my husband Rick is 49 years old, was diagnosed with Stiff Person Syndrome Plus. It's a rare neurological disease, that he has a very rare form of. Within a year of his first symptom he was bed ridden and can't move his arms, legs or neck.
It's been over 3 years since I quit my job to care for Rick. He requires 24/7 care and that's me. I do pay an aide to help me bathe him 2X a week and his Mother will sit with him once a week so I can get groceries. Other than that it's just me and him. I'm not meaning to whine and usually I try to keep a positive attitude and am grateful that he's here with me and fighting. Im just wondering what other people do to cope.0May 29 -
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HuskerBK81 earned the 10 Comments badge.No longer a one-hit wonder! It looks like you’re going places.June 2
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ColeandCharisma earned the 10 Comments badge.No longer a one-hit wonder! It looks like you’re going places.May 31
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JHPRC earned the 10 Comments badge.No longer a one-hit wonder! It looks like you’re going places.May 30
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Little things like uploading a profile picture make the community a better place. Thanks!May 28
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prc_donnal earned the Name Dropper badge.Mentioning someone in a discussion (like this: @Name) is a great way to encourage dialog and let them know who you’re talking to.May 29
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Commenting is the best way to get involved. Jump in the fray!May 28
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Commenting is the best way to get involved. Jump in the fray!May 26
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Hello, I'm Bryan, Pa-paw, father, husband, incomplete quad., going on 17yrs now, I feel like I've been through the ringer, I need to seek help & find new direction for my life, i lack self worth now, i'm strong mentally, but my isolation, mostly due to my rural home and transportation issues has me seeking others with same or similar issues, maybe some good advice. Not ready to give up, may need a hand up, tired of being so on the edge of nowhere....0May 26
