Sign in to read this conversation or register by entering your email address above.
Some people call it a message board. Others call it a forum or an online support group. We think of it as an online peer-to-peer support group where patients and their families share their experiences and research the latest medical science for their condition.
We believe patients are the most underutilized resource in healthcare. We’ve watched patients become experts in their conditions — and we see that their knowledge improves the care they receive. With the right tools, you and other patients can do the same.
Please contact us at [email protected] with questions or suggestions.
We have over 100 communities where members discuss oncology, autoimmune diseases (like Sjögren’s and lupus), neurodegenerative diseases and their symptoms (like Parkinson’s, Alzheimer’s and dementia). We also have several communities where caregivers can share tips for coping while caring for a child, parent or spouse.
The best she can wish for, as the rare degenerative neurological disorder tightens its grip on her body and her brain, is that the drug can ease her muscle pain and improve her daily quality of life.
“My body does not move like it’s my own body,” said said. “It’s like my body is not really mine; it’s outside itself.”
“I didn’t think it was serious,” she said.
Soga, her husband, was accorded caregiver status so he could pick up her medication from the dispensary and help her take it. The couple, who have two children, went to the first meeting with dispensary staff together in February.
“They were very friendly,” Yumoto said. “It wasn’t scary; no pressure. They did a lot of explaining.”