Post by bellapeikert on Sept 1, 2019 20:54:14 GMT -8
Hello everyone,
My mom (Bella) had a motorcycle accident in Germany (outside of Hamburg) 3 years ago that left her with Incomplete Quadriplegia. Here are some details about her injury:
Polytrauma involving severe cranio-cerebral trauma with diffuse axonal
cerebral damage, traumatic subarachnoid hemorrhaging as well as a
occipital condylar fracture left on August 7, 2016
Further injuries:
fracture of the arch of the atlas right,
C4 [CVB 4] fracture,
C5 [CVB 5] fracture,
C6/7 [CVB 6/7] fracture,
T6 [TVB 6] fracture
She has some voluntary movement in her legs and has not lost the sensation of feeling when touched. She’s also been blessed with great skin and hasn’t had any bed sores. And has also won back the ability to chew and eat whatever she wants (although it’s a taxing process for her). Probably one of the worst parts of this injury is that her vocal cords were also affected. She is able to whisper but not form any tones. Our family and everyone working with her have all learned to lip read to the best of our abilities and are able to communicate with her on most days. As you can imagine it takes a lot of energy to “breath talk” and so she doesn’t communicate enough. We’ve recently gotten her a program so that she can type with her eyes and are hoping once she get the hang of that she will be able to communicate more of her feelings and wishes.
My mom was a very active woman and after the accident our family put our lives on hold to try anything to give her as much of a shot at regaining functional movement again. She started physio therapy, occupational therapy, speech therapy, is walking on the Thera-trainer LYRA once a week, sees an osteopath once a week, gets acupuncture and is seeing a psychiatrist. After being in a clinic for 9 months we moved her and all these therapies home.
We have written to many research trials but none were willing to take her in. Rounding on 3 years of trying everything - she is more and more lost in the darkness of her situation. She spends most of her days in her chair when not doing therapy and often talks about euthanasia.
Don’t get me wrong, at the end of the day, she is the one that has to live with this condition and if euthanasia is what she chooses we will all support her decision. However I’m not willing to give up and was hoping that some of you might have some other suggestions of alternative therapies that we could try or know of ongoing research trials that we could write to ..
Thank you so much for taking the time to read this very long essay
With so much respect for you all,
Jen