AskNurseLinda — Reeve Connect
Reeve en Español
Comunidad de información y apoyo para las personas que viven con parálisis y sus cuidadores en español.

AskNurseLinda Information Specialist

About

Username
AskNurseLinda
Joined
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Roles
Moderator, Information Specialist
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118
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10
What is your primary relationship to paralysis?
Caregiver family or friend
Type of paralysis
Other
Has the person with paralysis ever served or are they currently serving in the Armed Forces (U.S. military)?
No
Posts
158

Activity

  • stephaniekathrynn
    i’m going to try to make this a short as possible!!
    hi Linda, how are you? I don’t even know if I’m writing this in the right place or where or what anything at this point so I’m just gonna write and see what happens. I’m Stephanie from bucks county PA. I’m 25, on April 12th I became a c6/c7, tetrapalegic. I went to Moss rehab for two months. I made good progress! Pretty quickly too, June 30th I was discharged in my house was not finished so I was sent to a very VERY bad nursing home. I got my bed and Hoyer lift delivered and immediately discharged to my moms house. Where I stayed in her living room. I didn’t have home care for about six days I think. Homecare was from the local hospital and not specialized in spinal cord injury. I was grateful for anything because at this point I have been in bed for about 10 days straight with no therapy, nothing but my mother. We had the wrong Hoyer pad the set up wasn’t exactly safe for my mom to get me in and out of the bed by herself, With the floors carpeted, and not much space to maneuver anything as our house is a small rancher. Once homecare came not much changed therapy was only two or three hours a week all spread out, i’m not at all benefiting me. All day and night I was on the phone on the Internet trying to find somewhere anywhere to go that has spinal cord therapy or help or anything at all. I was emailing my therapist and people from moss every day they finally called back they couldn’t help me. I heard about a rehab close by, My home care therapist recommended it so I’ve been here for about a week now.. I have been in bed for 25 days today. I try to do as much as I can to move my upper body. The bed I’m in is definitely not good for me, their not allowed to do the Bowel program.. none of my nurses understand autonomic dysreflexia as I’ve had it the past three days. They won’t even give me a Nitropaste unless it goes up to the 170s !!! Any sort of therapy they offer, I get to the edge of the bed and my blood pressure drops so they end the whole therapy. My medicine is all over the place, I have to teach everyone all day and all night how to take care of me and it still doesn’t feel safe or at all fair. I have declined tremendously. I’m not sure why but since the day I fell I’ve been completely positive and super strong through this. And I will continue to do that, I just don’t even know how.  It’s legal for any person to be in the care of people who literally don’t know how to take care of them. I want to change that, I want to talk to other people who either are or have experiences and what they’ve done. I need help!!! I know this is so long so if anybody actually read this, please give me ideas!! Thank you🙏🏼🦋
    ·
    July 24
    • AskNurseLinda
      AskNurseLinda
      Hi, Stephaniekathrynn, Oh, my, it saddens me to hear about your situation. Unfortunately, I hear this all too much. If you have a discharge manual from your rehabiliation facility, use that to your advantage as it should have the elements of care you require. Your healthcare professional, either MD or NP should be able to write orders for you to get what is needed in the short term. For the long term, you need advocates that can help you navigate these issues. One is your insurance case manager. If you do not know who that is call the number on the back of your health insurance card. Both private insurance or state supported payors have case managers for catastrophic cases. They can be valuable assets in assuring the care you need in your current facility or a facility that can provide it. Another asset is the Paralysis Resource Center (PRC) at the Reeve Foundation. These individuals know the ins and outs of rehabiliation healthcare as well as locations that might be near your home. Their number is 973-467-8270. They can help you advocate for yourself as well as on your behalf. This will be a good start. I am sure an unfortunate number of our community members have been through this. They can also share their experiences and successes. This can be resolved but often individuals need advocates. We all do. Nurse Linda
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