Who Are We

24 Apr

On June 30, 2012 we are asking all those to sign-up to register as a picnic day to bring Awareness of Brain Injury to family and friends. There is an estimated 1 billions people in the world with brain injuries of varying degrees, neurological disorders and brain dysfunction and yet education and understanding is lacking. This is considered the first global picnic.

Click on the link below for the details.  Don’t miss out on this opportunity.

Who Are We.


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10 responses to “Who Are We

  1. cindyhfrench

    April 24, 2012 at 11:41 pm

    It seems to me that a stroke is also a brain injury. and as for neurological problems-what about restless leg and essential tremor? I’ve just spent 4 days of EEG testing for uncontrollable limb and body movements that now they are saying could be linked in some way to the restless leg. Sorry but that sounds like a crock-I think they just don’t know what happened, can’t explain it so they come up with something crazy like that!
    And brain tumors-when they are excised, isn’t that an injury to the brain as well? I know I have dead places now in my brain waves or nerves from that.

    • brain injury self rehabilitation (BISR)

      April 25, 2012 at 7:21 pm

      Stroke is a brain injury, brain tumors are a brain injury and excising can also cause additional injury. Anoxia (lack of oxygen to the brain) is a different form of brain injury. There are so many types of brain injury, but people just don’t realize it and they are dealing with so many complications that are related to brain injuries. It is a “crock,” to use restless leg syndrome as another way to minimize a person’s complaints. It’s easier on the patient if they just stated “we don’t know”, instead that look at you as though one is making up complaints. WE ALL HAVE BETTER THINGS TO DO IN OUR LIVES … AND ARE JUST TRYING TO GET OUR LIVES BACK, OR WHAT WE HAVE LEFT! Tremors and uncontrollable limb and body movements are neurological, often seen after brain injuries of varying degrees. Neurotin (anti-convulsant) resolved tremors I had in all four extremities and resolved the severe burning pain in my torso following the subarachnoid hemorrhage, but only after suffering for years…9 1/2 years to be exact. Hope you are feeling better. Have you tried Hyperbariac Oxygen Therapy?

      • cindyhfrench

        April 25, 2012 at 7:28 pm

        thanks for your comments. they do make me feel better. that is exactly what I thought of the docs too. no, I know nothing of that therapy. And right now battling C Diff and paying for the med. bills I do have-it is probably not something I could afford. I don’t even know who to ask about that!

      • brain injury self rehabilitation (BISR)

        April 25, 2012 at 7:54 pm

        Right now just concentrate on feeling better and recovering from C Diff. Check out my Blogroll on the right side of the page part way down under Hyperbariac Oxygen Therapy. This is interesting and I want to do this again as well. I just started it about a year ago, but than I had a blood infection “sepsis” that was life-threatening…so I never got back to that.

        What is interesting about Hyperbariac Oxygen Therapy it is know to work and they talk about how costly it is. But wouldn’t it be nice if all these people would get better at a fraction of a cost and return to normal living! It seems like that would be cost effective in a long run…but not for healthcare institutions! That would not work for a business that is motivated by financial support of sick people…making them even sicker.

        I met the girl that was to live in a wheelchair, but her parents put her in hyperbariac oxygen therapy and she’s okay and dancing today. It’s not just a miracle, it’s a treatment option.

      • cindyhfrench

        April 25, 2012 at 8:05 pm

        yes, I know what sepsis is. I had it last year when I had a kidney infection. Almost lost my life over it, as I didn’t realize how sick I was until the Dr in the ER told me that if I walked out the door, I would die, that my systems were already shutting down and didn’t I hear myself wheezing? I told her I never wheeze-she said well you are now and your kidneys are shutting down as well. They worked on me for several hours to stabilize and then moved me to the step down from ICU. I was in there a week. Had a temp of 103.9 Learned my lesson. That’s why when I was coming down with the C Diff, that I got right to the hospital. I had a temp of 101.5-they had told me that with my supressed immune system, I always had to come to the hospital if I had a temp of 101 or higher. Of course this was the year before we learned that I have no immunity at all-so now my family does not take any chances with me.

      • brain injury self rehabilitation (BISR)

        April 26, 2012 at 4:30 am

        Great that you are aware of your urgent health care needs. It certainly helps when one understands why they become gravely ill so quickly. Sad, that it takes such an obvious crisis to be treated well. When the issues are black and white it is easier to receive healthcare…but that’s not usually the case. Medical insurance guidelines also dictate the same. Every BODY is different, but everyone is treated the same and expected to respond the same. Health needs to be controlled by the individual or advocates. They know there is something wrong, and they NEED to push for answers and real healthcare. That’s hard to do, when you are so ill and very few people have advocates. Imagine how many people die because the interventions are not implemented appropriately when they are ill.

  2. wendy

    April 25, 2012 at 3:13 pm

    A very cool idea! Hope we can get one together around here….if not I’ll try to do a little something. who knows what will happen. (hard for me due to hearing, but I’ll try!)

    • brain injury self rehabilitation (BISR)

      April 25, 2012 at 7:40 pm

      I’m going to sign up and hopefully it will go well…even if it’s just my immediate family and a few friends, that will bring attention to Brain Injury Awareness! I’m sure they’ve had enough, but we all want to help in whatever way we can to educate. It must be very difficult without the ability to hear. Actually, I’ve heard (don’t know and hope I never do) that losing hearing is harder than losing vision. People don’t realize that you always hear things, before you see things. When we have patients undergoing procedures the hearing is the last to go and the first to return. What’s the hardest thing for you to deal without hearing?

      • wendy

        April 26, 2012 at 11:12 am

        The hardest thing to deal with losing my hearing is the isolation. People just can’t understand. They try to look straight at me and such, but they forget within seconds. I can’t be in crowds, I can’t follow conversations. One ear I hear from a little causes noises to be very distorted, and it actually hurts if the noise is too loud.
        So that’s a huge thing. Also just missing the little things. Like, someone walking in a room and I don’t know they are there, or missing birds, and running water…..

        I’m being tested next week to see about getting a cochlear implant. (one reason I haven’t signed up for the picnic yet, if they say yes, I don’t know when surgery will be.)
        I’m feeling pretty confident that I will be approved. I barely had enough hearing in my right ear to “fail” last time, and it has gone much further down now.

        I’m learning sign language, and that opens doors to a new group of people, but you also have to find people in the deaf community that you have things in common with other than being deaf, and the only other person in my family who will know it is my husband….so translator on hand, but that’s not fair to him.

        So after next week, I’ll know a bit more, and can plan some things.

        Unfortunately, the Intracranial Hypertension, also causes a risk to my eyesight. So that’s a scary thought, to loose both senses….but I know it’s rare, and if it happens it’s normally in one eye…but still, I have double vision when I wake up. I get gray spots floating around (not floaters, they go away and come back…and they are symmetrical, I get this wavy feeling on the sides of my vision, and often, I’ll just have an out of focus spot that follows me around.
        So that has been a bit nerve racking.

        thank you for asking, I’m sure you didn’t expect to get such a long response. : )


      • brain injury self rehabilitation (BISR)

        April 26, 2012 at 6:24 pm

        I’ll pray that you qualify for a cochlear implant. Two important senses is difficult when you’ve lost one, and have great difficulty with the other. Great you are learning sign language, but I see what you’re saying about finding people that share common ideas, hobbies, interests, life experiences isn’t easy. You have a complex situation that occurs with brain injury. Take care and stay safe, Edie


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