Advice for the Newly Diagnosed from People with Brown Sequard Syndrome

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" Don't get lost in the loss of the old body.....fight, be strong, head high...dig in deep and become the best you. Show people your strength...show you your strength!"

" Have patience with yourself. Ask for help. Ask questions until you get answers that make sense."

" Patience and try to educate yourself as much as you can. Be kind to yourself and take one day at a time."

" Get a good support system and don’t give up."

" Hang in there"

" Be your own advocate don't let doctors just skim over what you are going through."

" Get to a Neurological Center, Instutute, contact the Christopher and Dana Reeves Center, National Neurological.org, FIND real help! Read, read read!!!! Never give Up!!!"

"  Hang in there, don't give up, things can get better over time. Nerves take a very long time to heal. Your brain takes a long time to adjust to the injury too."

" Be kind to yourself. Never be afraid to ask for help."

" Be prepared to make lots of adjustments in life to help make yourself comfortable. Dont be afraid to do whatever it takes to help yourself get through a day. Not everyone will understand your pain or the way you feel. They wont understand because they are not experiencing it it. Its ok and you don't have to convince them your hurting or tired."

" To take it a day at a time. It's a journey. You will soon find your new normal and be able to enjoy your life to the fullest!"

" Take a deep breath. Find a support group."

" Don’t lose hope. Maximize your abilities."

" Don't be afraid to rest and say you are exhausted."

" Never say never."

 "Never give up. There are no time windows/limits for things that can happen or improvements. Every person is different. And no one walks in your shoes."

"  Find good doctors who care about you."

" Join this group. I was LOST before I found you all. I thought my symptoms were crazy (or I was), felt completely isolated and alone. Include your partner or spouse so they understand BSS from the start."

" Learn your limits but know that healing physically and emotionally takes time. Don’t be too hard on yourself, but don’t let yourself give up either. Arm yourself with the best medical and support team for your needs. Educate yourself as best as you can about your condition because you are your best advocate. Continue to live life and chase those dreams. Remember to celebrate any small achievement or progress forward."

" You can do this! As time goes on you learn to adjust and learn tour body when something is too much or not enough."

" Stretch, Keep active, Try to be as independant as possable but don't be afraid to ask for help. Remember that the doctors are there for you not their ego so ask questions and expect to get answers. Learn as much about your condition as possable, doctors respond to patients who are well informed."

" Don't give in there is a life after BSS."

" Try new things! Get in touch with groups like ours(Facebook Incomplete Spinal Cord Injury Brown Sequard Syndrome Page) that can provide more information than doctors can. Technology is advancing all the time and the sooner a stem cell treatment is done, more chances of getting better>"

" Have patience with yourself and listen to what your body tells you. Try to push yourself to go beyond what your limits seem to be and stay positive."

" There is no magic pill or cure, just learn to work with what you have and be blessed that you're still living!"

" If you dont use it you will lose it."

" Pray a lot. Don’t give in to the demons that BSS can produce. Don’t give up. Believe it or not it does get better with time."

" Learn everthing you can & try to find out what resources there are to help with Insurance Gov. ect!"

" Find a doctor you're comfortable talking to. Try not to isolate yourself. Get counselling."

" Don’t listen to the doctors when they say all the progress you make in your first year will be it. There are big gains to be had two, three and four or more years after your diagnosis!!"

" Get up and out of the bed or chair as soon as you can. Take advantage of every bit of therapy you can get. Keep trying again and again."

" Find a great counselor - counseling and being able to talk and process was my life saver! The first 6 or so years after i had major bouts of depression - I found a fabulous counselor who walked me through the stages of grief and a mourned the loss of my previous abilities - processed all the emotion. That is my #1 tip - everything else is much easier to deal with when your head is in the right space. I also got involved in helping others - giving back and taking my focus off of me all the time really put things into perspective - I found an awesome church and a group of amazing women who are still part of my community - building new relationships is very cathartic. AND - also - because we have mobility issue, it's harder to keep weight off - stay active/moving and don't let the pounds pile on - don't let food become a comfort."

" Focus on what you can do. Not what you can not."