Hi... new here!

[CarolinaBlueRN]

Hi everyone...

I'm a home health nurse with a patient who is soon to be 22 years old and was born with SB. She is paralyzed from the waist down. My heart goes out to each one of you. You are courageous and passionate individuals and I salute you for reaching out to help each other and and yourselves. My hope is that I will learn about SB by reading your posts... and that you will help me help my patient. I love my patient and want to do everything I am able to do for her. While I won't divulge any of her information (I'm not going to violate any of her HIPPA rights), my goal is to find information and people connections who can to help her. My patient doesn't have much in her life that she looks forward to doing. She has lost her youthful passion for life. She has smart, educated aides who stay with her throughout the day, but they allow her to sit in her apartment and eat junk.

I need to get going... but will check back later to read more of your posts.

Thank you.

CarolinaBlueRN

[Dodger67]

Hi and Welcome on board :happy065:

I'm going to chop your post into bite-sized pieces and respond to each one in turn (you might not like some of what I have to say):


I'm a home health nurse with a patient who is soon to be 22 years old and was born with SB.
Awesome! The only other medical professional who posts here is Dr. Xiao, he's a urologist or neurosurgeon, I'm not sure which but he's the innovator of an experimental procedure intended to restore voluntary control to neurogenic bladders. His posts are unavoidably infrequent and naturally limited to his particular expertise.


She is paralyzed from the waist down.

Thats so vague its actually useless info, sorry. So her lesion is anywhere from mid thoracic to mid lumbar, so where is it, does she have hydrocephalus, chiari malformation or tethered cord issues?


My heart goes out to each one of you. You are courageous and
:6775: I'm afraid you'll find that such sentiments tend to be rejected with disdain (if not outright contempt) here.:puke: I'm sorry, but you're going to have to lose that attitude if you really want to run with us.:signs120:

passionate individuals
Too bad you're not allowed in the Adults section, some of the the rants and rages there are truly spectacular. :scream: :bluesbrothers::Banane21::arrgh:


and I salute you for reaching out to help each other and and yourselves.
:3a:Thats why we're here.


My hope is that I will learn about SB by reading your posts... and that you will help me help my patient. I love my patient and want to do everything I am able to do for her. While I won't divulge any of her information (I'm not going to violate any of her HIPPA rights), my goal is to find information and people connections who can to help her.
You've come to the right place, we know everything thats worth knowing about living with SB. :sign0023: Just kidding, but seriously we do have what I believe is an unequalled body of experience and resources collected in one place - right here. :fyi:


My patient doesn't have much in her life that she looks forward to doing. She has lost her youthful passion for life. She has smart, educated aides who stay with her throughout the day, but they allow her to sit in her apartment and eat junk.
Seems to me like a classic case of being crippled by excessive help and care.
At her age it won't be easy to rehabilitate, she needs serious and urgent intervention.:help::2aa:

[hope&faith]

Welcome, glad you found us! I commend you for looking around and wanting to find out more information from people who are experiencing the effects of SB! I am a relatively new mom of a son with SB and continue to learn from the wonderful people on this board! My goal is to raise my son to be an independent, productive member of society just like his twin. I think a lot of parents/families make the mistake of "babying" the person with SB or other health complication, disability, what have you. Is this what might have happened with your "patient" perhaps?

Can you tell us any more about your "patient?" not name or anything violating Hippa but just in general? Besides the logistics of SB, does she have family? involved? or too involved possibly? friends? occupation? other health issues? At the age of 22, she certainly sounds quite isolated.

Holli