BSSers Advice for Loved Ones Who Know Someone with Brown Sequard Syndrome
"Just be supportive and understand "
"Exhaustion is real! More activity does not increase my endurance. Instead I am fatigued longer."
" Be compassionate, be very educated about Brown Sequard Syndrome, seek additional caregivers. Seek personal help to transition to changed roles in family unit. Be accepting of changes needed for the BSS family member. "
"Seek out support groups that have the same diagnosis"
" Listen to the person with Brown Sequard Syndrome. Listening and show empathy goes a long way. Include them as much as physically possible in all activities, family info, instead of isolating them from everything. Don't stress them by demanding they do things they are not able to do. "
"Have compassion, don't leave them isolated - begging for food or showers etc""
" Understand that it causes severe pain. Pain that can not be seen from the outside. Just because your loved one looks normal does not mean they are. The pain with bss is real and it wears a person down. "
"Be patient, be understanding. I wish i could participate....you dont have to make me feel bad"
" Be patient. Learn to read signals. Encourage/push to get out of the house for a meal, movie, walk. Understand your loved one is grieving the loss of who they were, likely their career, friends, self worth, identity. Understand that all day we see others do “normal” things, knowing we won’t ever do that again. Laugh at us when we laugh at ourselves, humor helps and we do funny stuff now! "
"Just bc they are walking again doesn't mean they are better- daily living is difficult and tiring"
"Brown Sequard Syndrome is there all the time. It’s not like a headache that sometimes goes away. The pain and sensations are there constantly. Not all days are bad. Some days we are quite capable. But it would be nice if you help me know my limits so I don’t over do and then have to spend days recovering."
"Take my word for how I feel not how I look"
" Be patient. Understand we're frustrated, scared, confused, in pain, and down right mad at losing the life we always knew. Be there, be sympathetic. Let us know you love us, no matter what our bodies are doing to us. "