About Me
Edie speaker at ARN (Association of Rehabilitation Nursing) Convention days before TBI
A Registered Nurse, BSN University of Akron, Graduate school Kent State University. Certified Rehabilitation Registered Nurse-Retired, author of School-Age Children’s Responses to Parents with Disabilities Rehabilitation Nursing. Volume 19, Number 4 Jul/Aug 1994 203-6. Founder and Coordinator The Caring Children’s Program 1990—, Recipient Community Award 1991, Speaker to numerous groups and organizations (among other credentials), Member Assoc. Rehabilitation Nurses 1991–. Mem. AAAS, Alzheimers Disease and Related Disorders Assn. (bd. Dirs. Akron chpt. 1988-89, patient and family edn. Svcs. Comm. 1988-89. Assn. Rehab. Nurses, Sigma Theta Tau International Honor Society of Nurses from Ohio is a victor after being assaulted at the age of 38.
Dedicating the next 20 years to self rehabilitation and recovering on her own from an assault which occurred at work October 30, 1991, one is reaching out to help rebuild shattered lives following traumatic brain injury, other injuries, chronic diseases and illnesses. BISR was created to form Brain Injury Self Rehabilitation, the process that one needs to go through to acquire their optimal level of functioning because formal rehabilitation is limited to a few weeks or less or none at all … the average. Rehabilitation is a process that should be ongoing with life changes, with intermittent evaluations.
This motivated and determined soulful nurse has a voice heard from a perspective as a healthcare professional, a patient, a mother, a spouse, a sister, a friend, and finally a caregiver. The secrets of inside our healthcare from different perspectives revealed.
Nurse assaulted at work gets treatment after nearly 2 decades. A documented journey through America’s healthcare, legal, insurance, and Worker’s Compensation system for an ordinary American, mother, spouse, nurse and family. How this determined nurse restored her life through self rehabilitation.
Nursing a rewarding career (Edie)
Living just 20 miles from world renowned healthcare facilities turned to nearly 20 years and 200 miles away before proper treatment. Many twists and turns in this cold and complex case. This nurse speaks out to protect other nurses and healthcare workers all while advocating for patients through education.
You will find her story, personal stories, laughter, health tips to optimal levels of functions, recovery, rehabilitation for traumatic brain and spinal injuries, brain dysfunctions, illnesses (mental and physical), disease, and injuries.
This nurse once silenced by poor treatment has another opportunity to speak out after receiving proper medical care nearly two decades after injury. This truly is not a mystery diagnosis, and hopefully many brain injured patients and families will consider extensive laboratory testing for hormone imbalances to see if this could be happening to them or their loved ones.
Rehabilitation With Our Therapeutic Dog
America’s healthcare system is in critical condition and brain injury or any type of chronic condition is expensive, let alone the rehabilitation that most American’s never receive. Who qualifies for rehabilitation and how does one get it? In America, individuals, need to deal with issues they do not know how to handle, neither does anyone around them. I hope to help give these people the tools to understand and educate how to overcome a system that cannot help.
braininjuryselfrehabilitation 
handtutorblog
January 12, 2012 at 10:54 am
Hi,
Please tell us some information about the rehabilitation (physiotherapy/ occupational therapy) that you undertook and at which clinic 200 miles from your house?
Alan
brain injury self rehabilitation (BISR)
January 12, 2012 at 12:09 pm
I went to St. Joseph Mercy Medical Center in Ann Arbor, Michigan and was treated and given referrals from there. My referrals were all associated with traumatic brain injury (TBI) and complications that are associated with TBI. The initial problem was with a cover-up of multiple medical errors, hence the reason for lack of proper treatment in Ohio.
There were so many other errors. We believe the plan was that I die and be silenced. I’m very much alive now…and will NEVER BE silenced unless it is at the hands of God. The exceptional staff and understanding was in contrast to what we were use to dealing with in Ohio. The professionals all had good insight and referrals were made promptly. This is a great institution for any type of brain dysfunction, injury (such as stroke, MS, etc.).
The referrals included Endocrine, Eyes, Cranial-sacral therapies, O.T., P.T. Cognitive therapy. There were so many complex issues, but resolved one at a time. Yes, I still have significant issues, but it’s manageable compared to previous level of energy. Self rehabilitation, self determination and self motivation is the key to success. We had every kind of insurance imaginable and no one covered this injury because of misdiagnosis (intentional or not intentional?). Warm water exercise was key to daily existence for years. That’s all I could do, but it gave me hope!
Marilyn Martone
January 24, 2013 at 9:48 am
Dear Edie,
Thanks for all your posts. They’re most helpful.
brain injury self rehabilitation (BISR)
January 26, 2013 at 10:19 pm
Marilyn, You are welcome. I’m sure some people think TBI is an excuse, and they never know it unless they live it … either self or a loved one! Yes I recovered from many serious brain injuries, but it wasn’t until the subarachnoid hemorrhage that I failed to recover. That’s when I really understood brain injury! I think I must say I assumed everyone recovered spontaneously and now I know differently.
It’s tough being a parent and having an adult child become dependent upon you once again for nearly everything. It’s simply unimaginable! Are you able to get time to care for yourself and remain healthy? What are you able to do alone that brings you happiness? How is Michelle doing? Take care and stay safe.
Vickie
February 3, 2012 at 10:17 am
Thank you for doing what your are doing. Somewhere out there, though we know not where will benefit from your knowledge and your experiences. Nurses have so much insight!
Hope, Health, and Happiness,
Vickie
brain injury self rehabilitation (BISR)
February 3, 2012 at 12:18 pm
I appreciate your comment. Nurses do have a lot of insight, and I hope to speak out to prevent all the violence that occurs in nursing and healthcare as well. I want to prevent violence as much as possible. SAFETY for our Nurses! I will share my experience to help others help themselves, hence the Brain Injury Self Rehabilitation (BISR) or any type of Self Rehabilitation.
Vickie
February 5, 2012 at 5:51 am
Please go to my site. I have put a portion of your article on my site realestatesavant.wordpress.com. I hope it brings others to your site. I too have witnessed the violence that occurs in the nursing field from patients. I had a wonderful charge nurse who was paralyzed by a terrible kick in the back by a patient.
Hope, Health, and Happiness,
Vickie
brain injury self rehabilitation (BISR)
February 5, 2012 at 1:33 pm
I will go to your site. I’m new and still trying to figure out how to do the links and such. I’ve decided to just begin the blog, because if I waited till I knew how to do it all, that could be sometime. And someone else will be injured or misdiagnosed! It’s still overwhelming, but I’m determined to see this through. I’m grateful to have challenged myself to this journey and prayfully it will help at least one person somewhere. It’s extremely sad about the paralyzed nurse and I’m wondering if she gets any help? It’s all kept quiet about violence in nursing even though there is more research…but nurses just don’t speak up and protect themselves. They take the abuse!
Maria Tatham
March 13, 2012 at 3:09 pm
Hi again!
I’ve passed on an encouraging and fun award to you. Please go here:
http://christianfantasyforwomen.com/2012/03/13/abc-award-awesome-blog-content/
I understand if you don’t want to participate, but at least enjoy the limelight!
Blessings!
Maria
brain injury self rehabilitation (BISR)
March 13, 2012 at 5:46 pm
Hi Maria!
I’m humbled and with appreciation that you send the award my way. Most importantly, I loved reading the ABCs you submitted. Only thing … others don’t know, I don’t know what to do with Awards and how to follow through. A few of my talents that are more difficult to find!LOL Maybe it’s just always been that way…since it’s easier for me to focus on others!LOL
Thank You,
Edie
Maria Tatham
March 13, 2012 at 5:56 pm
That’s fine, Edie! This will at least let more people know your site is here. Yes, you are focused on others and therefore in the right profession!
Blessings,
Maria
cindyhfrench
March 18, 2012 at 7:38 pm
Edie, I am so sorry for what happened to you. I wasn’t hurt by a patient but by a nurse a little over 6 years ago when he misprogrammed my PCA pump and I got 3 times too much demerol. My husband found me the next morning not breathing and started yelling for help! I spent 3 days in ICU-sound asleep. The nurses there kept telling my husband they were doing everything they could–but NO ONE was telling him what had happened to me. They knew exactly-because we found out later that I was on a narcane drip-that speaks to overdose!-and my doctors didn’t tell him. Everyone just hoped I’d wake up and be ok.
I did wake up 3 days later, but I couldn’t speak, I couldn’t eat or drink anything without choking, and I had apparently developed sleep apnea, because now bells and whistles went off all the time I was trying to sleep-and on an elevated at the head, bed.
Well long story short, it took an attorney’s nurse going through the notes to find out exactly what happened. I know we could have sued-but this is the only hospital I have to go to and I have some other serious issues to deal with like asthma attacks. But Edie, as I encountered my God in the early, early morning hours because I couldn’t sleep, He started working on my heart. I have read many of the passages that I read while I was in there-and what has amazed me is that I had an overwhelming sense of peace that whole time.
What I didn’n’t tell you is that I am a recruiter by trade. I need my voice to work. but for 18 months, I whispered or really pushed it and sounded like the absolute worst case of laryngitis you ever heard.
I did have vocal chord surgery during that time-trying to get the two of them together to work. But they were and are today little crab legs. Still I knew that God didn’t want me to be silent-so I did what James 5 says to do-gathered my pastors and they anointed me with oil and then they prayed for my healing.
Now the voice that I got then and have today is not the voice I was born with. It is much huskier and lower pitched, but I can communicate with out any problems.
Of course there have been other things that have popped up that point right back to that time, but right now all I can do is pull myself up by my bootstraps and me and God together make one really good recruiter.
I just wanted you to know that somebody out there really cares and the fact that you are continuing to make your way inspires me.
brain injury self rehabilitation (BISR)
March 18, 2012 at 8:54 pm
Cindy,
I was so touched by your comments. You’ve been through a lot. Healthcare professionals do not talk about mistakes. I have a post coming out within the next three Monday’s that will touch a little about errors by healthcare professionals and how they are handled, or not handled. It will verify what you said about how it took a legal nurse consultant to find the errors. It’s as though you knew exactly what I was writing about. I just want patients to be safe. I’m sorry for your sufferings. It takes so much out of one and thank God for the blessings of strong minds and strong hearts. That’s why you survived and through the power of prayer.
I understand about the swallowing and the entire scenario with your voice change. I’m assuming you spent a significant amount of time with a speech therapist. I also addressed issued about swallowing in these posts coming up. I think might be mention in tomorrow’s as well. I’ve had the privilege of working at an exceptional rehabilitation center and my experiences were outstanding. We treated all types of cases, so I can’t ever say enough about the diversification of clientele and families. I loved my position, patients, families, and healthcare professionals but I am a strong believer that I need to be truthful in every manner and will not jeopardize my moral belief system. I’ve always dreamed of doing something and getting my voice heard, and I believe that is happening. I genuinely care about people and want to reach out and help.
I’ve been blessed to have experiences outside of nursing that included secretarial, financial, and computers hence my ability to type while lying flat on my back.I’m getting classes at Apple Computer to help with writing. Therefore, I’ve accomplished so much in such a short time. A little help is a good thing. Thank goodness for laptops. Hope you’re still improving and I understand you have a difficult road.
Take Care and Stay Safe,
Edie
cindyhfrench
March 18, 2012 at 9:31 pm
Wow, Edie! I didn’t expect to hear back from you so quickly-so I wanted to thank you. It means so much when somebody else understands. Yes I did have surgery on the vocal chords and extensive speech therapy. It just didn’t work. I think God wanted to show what He could do and He knew I would tell His story every chance I got-everywhere that I am. Because it is a real miracle. Even the doctor says that he doesn’t know how I talk!
but now I have started having memory problems& trouble finding the correct word. I can describe the word, but I couldn’t tell you what the word was to save my life. I write down the wrong times for appts-I just can’t remember like I once could. Then 2 weeks ago I had 3 separate instances of “spells” I’ll call involuntary limb and body movements. I was awake and very aware of what was happening to me. Now they won’t let me drive till the docs figure out what it was-most probably I have been told with an EE test for a whole day and night with camera too. They are going to try and provoke a spell. That ought to be interesting. I have no idea what started this or stopped it.
My neurosurgeon thinks this all tracks back to the stroke incident including the memory, words, everything. And I still don’t try and eat certain foods that I know will choke me.
The greatest problem I have now is that after I got somewhat better, my husband had a mitral valve rupture in his heart. I almost lost him and truly he hasn’t been the same since. But I am so grateful that he is around to take care of me and the house and of course now he is driving me everywhere. Otherwise I don’t know what I would do-I support us with God’s blessing and guidance
and it’s getting harder and harder and I am just a mess otherwise. but that will keep for another day. Take care Edie. Sleep tight and God bless.
brain injury self rehabilitation (BISR)
March 19, 2012 at 10:41 am
Cindy,
It sounds as though you were anoxic (lack of oxygen to the brain), and that is a brain injury. I have seen exactly what you are talking about. I wasn’t there and I’m just giving you my opinion from the information you are giving me and my experiences. I am not a doctor and cannot diagnose. Did you have neuropsych testing yet? I don’t know if that really would make a difference, but hopefully they can help with rehabilitation.
It sounds as though they will be checking for seizure activity. Seizure activity rarely shows up on EEG, unless you have one during the EEG. They are going to do an extensive EEG which is excellent and will try to elicit a response during the EEG. I’m sure your doctor mentioned that they could be muscle jerks and twitches. All this activity is triggered in the brain. You mentioned you had previous medical problems. If you’d like to share them you may. You can also email at edithflickinger@yahoo.com for confidential information. I once read a study from the New England Journal of Medicine that 3 out of every 5 patients are injured,permanently disabled or die because of healthcare mistakes. There is NO epidemic we would tolerate at that rate!
Your husband must be fatigued from his heart surgery. Many people after heart surgeries also suffer significant problems. I’m happy they saved his life. It’s a long road to recovery. And who knows what recovery really is or when you are there. You need each other and you are both survivors. I’m sure you are understanding each other as well. Remember to hug each other, life is a precious. It’s the simple things that really matter.
Take Care & Stay Safe,
Edie
Marilyn Martone
March 20, 2012 at 5:00 pm
I was thrilled to find this blog. I’ve been dealing with the rehabilitation process for over 14 years now and it’s a nightmare trying to find your way through the system. In addition, the length of rehabilitation keeps getting shorter and shorter but persons with TBI often need years of rehab. My daughter suffered a severe TBI in 1998 and did not begin to make progress until close to two years after the injury and after she had been discharged from every facility because we were told rehabilitation was futile. You should see her now.
brain injury self rehabilitation (BISR)
March 20, 2012 at 5:53 pm
I’m happy you found my site, and of course it’s new…but a long time of praying and hopefulness. Rehabilitation is never futile. We can’t give up on people, they aren’t giving up…so why should we! Every single life is important. I’d love to hear how much your daughter has improved and I believe she will continue to do so. It’s been over 2 decades and I’m beginning to get my sense of smell back! God is the greatest physician and healer and prayer is powerful.
wendy
April 11, 2012 at 2:56 pm
I have a question and don’t know where to ask it. as you may know I do not have a brain injury, I have a newly diagnosed brain disorder….Intracranial Hypertension.
I noticed on your tabs about hormomal changed with brain injuries….could this happen with something like I have.
The reason I ask, I’m having odd symptoms. and they resently put me on a course of steroids and most of those symptoms went away. (unfortunately, I’m almost 50, and on birth control to control PMDD, so they act like checking my hormones would do no good)
since getting off the steroids some the symptoms are returning.
I was running a fever every night….now gone, thank goodness…hopefully that won’t come back.
I constantly feel like I’m going to start my period.
I have had low blood sugar symptoms ALOT. I can eat, and within 30 mins I’m shaking and in a cold sweat feeling like I’m going to pass out. I’m now trying to eat small amounts every 2 hours to keep things level.
I gained about 40lbs in 1 month.
I’m exhausted a weak most of the time, trying to exercise makes me almost pass out.
and unfortunately, my headaches are getting worse again. We had them staying at a category 5 or below (I’m never below a 3)….for a while there they were not going below a 7. Now they are anywhere between a 4 and 8. I do not want days of 10s again.
I’m going ot the doctor soon to have a fasting glucose level done….but was wondering if you might have any sugestions for other tests I should ask for.
Thank you for listening….I understand if you have no idea.
wendy
brain injury self rehabilitation (BISR)
April 11, 2012 at 4:49 pm
Wendy, anything that affects the brain can affect the endocrine system. The hypothalamus and pituitary is where all the hormones are secreted from. I’m not a doctor or an expert in this area but I would highly recommend an endocrinologist to follow you. I’ve been fortunate (after 18 1/2 years) to find a genius in this area who has given me my life back. I learn something new every visit. He also showed my husband and I that in a certain range besides what I’m abnormal in … I can be normal, but if it is factored out there’s highly abnormal findings. So finding a great endocrinologist would be a great referral. Was autonomic instability or dysfunction ruled out? Sounds like you have a lot going on. Tackle one problem at a time. Do your research! It’s your life and you’re important!
LAURIE
April 15, 2012 at 11:51 pm
Thank you for sharing your story. It is like reading my own story Except I was a teacher assaulted by a student in 1994 at age 36 and attempted to work 7 years post injury along with all the Battles with: Workers Comp., Union rights and having to file a complaint of harassement and discrimination against my principal. I loved my job but working was killing me. Please send the name of the genius /expert who was so helpful to you. I worked with an endocrinologist in 1987 and do not believe I was taken seriously. Now at 55/18yrs my fatigue is significantly worse and 2 recent sleep studies only reveal mild apnea I couldn’t get my hands on a cpap machine fast enough and have been using it for a week and one half and still feel so tired. Thyroid is managed well and I am on bio identical hormone replacement due to menopause. 5-6:00 am sweats are no fun either. I will travel anywhere to see a doc that may be an answer for me I want a life. Your site is great and your work is greatly appreciated. Your experience gives me hope.
brain injury self rehabilitation (BISR)
April 16, 2012 at 4:25 am
Reading your story was like seeing myself in the mirror over the years. I totally understand where you are coming from. I will email you specific information. I also said I would travel anywhere in the world to feel better, and finally I found someone who listened and figured out the problem (about 200 physicians later and 18 1/2 yrs.). We have very few doctor’s that will figure out cause-and-effect, it’s all about treating only the symptoms!
wendy
April 16, 2012 at 11:46 pm
I just wanted to thank you for your reply. I am doing research.
I went to an endocrinologist at one point, and felt they didn’t take me seriously at all. This was when I was first diagnosed with hypothyroidism. She literally said, “why are you here?” She said, your regular doctor can take care of this…and didn’t want to do any more work up on me. She made me feel horrible. I don’t let doctor’s treat me that way, but I was dumbfounded.
I will have to do more research to find a better endocrinologist before going again.
My husband called the neurologist who is a migraine specialist today, and told her what is going on, so she wants to see me on Friday.
maybe we are on the right track.
i was just diagnosed with the Intracranial Hypertension in late February.
thank you again.
I continue to find your blog very interesting, and get a lot of good information!
wendy
brain injury self rehabilitation (BISR)
April 17, 2012 at 6:43 am
If you find a physician who doesn’t take you seriously or just aren’t listening…fire them and move on! Your life and time are too valuable. There are many healthcare professionals ill qualified regarding good communication or able to properly diagnose outside the box. Don’t give up hope … it’s your life!
Audrey Quaye
May 15, 2012 at 8:27 pm
Edie, you are truly a voice for the voiceless! Reading through your blog — I now feel I finally have a kindred soul! Thanks for sharing your experience and knowledge. It really helps to have an experienced practitioner from the medical field who has experience with brain injury rehabilitation create this blog to share her own experience and frustrations. I am going to share this blog with the State of Washington’s Department of Labor and Industries, the State Attorney General’s Office and Virginia Mason Hospital. I hope that it will help to change the way TBI is viewed and treated. I have had no treatment nor neurological rehabilitation. I now have the daunting task of proving to the State that my condition has worsened. Thanks again!
brain injury self rehabilitation (BISR)
May 15, 2012 at 8:59 pm
Unfortunately, without treatment the responsibility falls right back on the brain injured survivor. It’s a NIGHTMARE, putting it mildly. It’s time the nightmare ends, and problem solving begins…and not so slowly either. Advances in brain injury have been there for a very long time, even though they’ll make it appear to be recent. I was a professional 2 decades ago with very few rehab places in Ohio to refer our patients, and I’m not sure there are any more now…than 20 years ago. Is it a problem we really want to correct? The answer is YES if you had a brain injury or know someone struggling with the ramifications of one.
Rehabilitation is expensive and I know two families personally that didn’t qualify for electric wheelchairs even after having progressive Multiple Sclerosis that caused permanent paralysis and another nurse who stopped to help someone and has a total above the knee amputation with brain injury. Is it lack of treatment? Is it cost of rehabilitation? or both? Or instead are they thinking people are worthless? My blog situation doesn’t even begin to scratch the surface of what we’ve been through, but I’m not alone. I pray there is a way to help others and make change happen. In the meantime, all I can offer is ways to Self Rehabilitate by my simple tips, my story, and some laughter! Anyone with chronic illnesses and brain dysfunction all fall in this same category as brain injury survivors. Take care and stay safe.
Audrey Quaye
May 15, 2012 at 9:15 pm
Thank you — I will definitely use your tips!
cindyhfrench
May 15, 2012 at 9:24 pm
oh Edie, is the Lord not good to continue to validate your efforts here? I know it doesn’t make what you went through any easier, but at least you know that there has come a good purpose out that that suffering. Because everything I am reading says we are all going to suffer in one way or another. we can not escape it. You have suffered in your way. I have suffered in mine, but I would not take anything for what I know to be truth today or for my relationship with the Father and Son today.
Now, I have got to quit writing on everybody else’s blogs-I think I did the same thing last night and it got too late for me to write. but I just had to say hallelujah for you!
brain injury self rehabilitation (BISR)
May 16, 2012 at 7:16 am
I do believe others are going to benefit from my writings in some way or another. It does help to know my life hasn’t been wasted trying to recover.
brain injury self rehabilitation (BISR)
May 16, 2012 at 7:16 am
I do believe others are going to benefit from my writings in some way or another. It does help to know my life hasn’t been wasted trying to recover.
Let's Move A Head
December 28, 2012 at 9:26 pm
Hi. This is my first time looking at your blog. It is really VERY informative and I know a lot of people who are going to benefit from reading your posts. Everyday I meet people who can relate and learn from your experience. I look forward to sharing your story and reading your posts. Heidi
brain injury self rehabilitation (BISR)
December 28, 2012 at 10:05 pm
Thank you. I appreciate your input and look forward to any additional information or comments. I was just in the process of updating my blogroll and links, and have added your site to my blogroll. I also look forward to spending some time and reading your information. Education is key to eliminating ignorance about TBI … we can either keep quiet or share experiences. When I improved with treatment I knew exactly what I wanted to do with my life … continue helping others in whatever way I could! I’m attempting to help in whatever way I can. Feel free to share my story. It’s a complex history of brain injury, but accurate and I’m sure many are going through similar situations. Take care and stay safe.
Let's Move A Head
December 31, 2012 at 12:24 pm
I agree with you. Isolation and feeling misunderstood are so prominent with every case I see! I run several TBI groups and they have formed such a close family. It is the best group I have worked with my whole professional career. So many of them were in a fog for so long not knowing what was happening in their life.
I hope you had a good 2012 and wishing you a wonderful 2013 filled with abundant
Joy, Peace, Contentment, and Good health…..
May these gifts guide your path through 2013 and May there be better understanding of TBI!
Heidi
brain injury self rehabilitation (BISR)
January 2, 2013 at 10:00 pm
It’s so reassuring to know that TBI groups are the best groups you “have worked with your entire professional career”. To this point, most feel as though we are the least understood group partly owing to lack of educational resources. It’s good to hear from someone who understands traumatic brain injury and is helping so many to achieve their optimal level of functioning. Thank you for supporting those with TBI. We will all continue to provide a better understanding of TBI and help decrease the stigma of brain injuries. Take care and stay safe, Edie
healthdemystified
May 31, 2012 at 11:09 pm
Hey Edith,
Just featured you in my latest post: http://bit.ly/K14F9G
Thanks for your continued support,
Eric
brain injury self rehabilitation (BISR)
June 2, 2012 at 8:44 am
Thanks Eric, your diversified posts focusing on healthy lifestyles offer so much. I’d encourage everyone to visit your website. Edie
Cauldrons and Cupcakes
June 1, 2012 at 3:17 am
I love your blog! I suffered from an Acquired Brain Injury after a bacterial infection in 2000. It’s taken my all this time to get back to ‘normal function’ and there are still something is can’t do or do as well as I used to. But I DID recover significantly, and in some areas I think I am actually stronger now.
This blog will help so many people, because of you sharing your journey and insights. Bless you! ♥ xx
brain injury self rehabilitation (BISR)
June 2, 2012 at 8:59 am
It was good to know you recovered significantly from a critical bacterial infection and you also have much to offer. It’s an unknown journey with these invisible injuries but our goals all remain the same! Take care and stay safe.
cindyhfrench
June 2, 2012 at 7:10 pm
I love it that so many people are responding to your blog. That validation must feel really good.
brain injury self rehabilitation (BISR)
June 4, 2012 at 12:57 am
I pray this blog continues to be an educational tool for others.
meesher
July 1, 2012 at 12:37 am
Dear Nurse: I have found that it is total absurdity to go to a lawyer who does NOT ALREADY HAVE A BRAIN INJURY NURSE/DOCTOR ON STAFF. Yes, it could just be a doctor who is covering his or her tushie, but there is way too much info in our records (If we actually HAVE records) for an average lawyer (or average primary care physician) to understand. Law school equals at least 4 years of college credits of time (and not one of those fly by night colleges so often advertising on late night or any time TV) PLUS three years of credits in an also not a fly by night law school. Even then, lawyers are taught the LAW (DID YOU UNDERSTAND MR. OBAMA’s IDEAS AS WRITTEN BY THE SUPREME COURT?) Thank goodness there are people like Brain Williams (who is not just a pretty face), and who are smart enough to employ people to tell him what “The Supremes” actually meant to say in real English. (Commerce clause, my pink bottom…) Sorry. At least Mr. Obama has put into Constitutional law the right that all humans MUST “BUY” at least SOME kind of medical care: this means working for a union shop into which one pays, buying ANY KIND OF HEALTH INSURANCE, (who on earth would want their TBI diagnosed in a 4 hour window in an ER room?) or having insurance provided as a benefit of working in some particular place. Even CNN got the decision of The Supreme Court WRONG in their first 44 minutes. (“44” as determined by Jon Stuart/Stewart of the Comedy Channel) Mr. Romney can and does PAY for the physical health care of all of his family members. Who has Romney kind of money? The Romneys.
Of, Medicaid if you are not working, counts as having paid into insurance. (Remember the stuff they took out of your first paying summer job? What? FICO? What? Where is my cash?) Unless a person is brain damaged at birth (when s/he is insured by his or her parents) and acquires the TBI before one turns 18 (adult, so they say) one has paid into that system, somehow, some where. Make them give you a Medicaid card! Slobber on their doorsteps until they know you are TBIed.
This healthcare reform act of Mr. Obama’s administration will be REPEALED Whether one is or was a Dem or Repub, in the past, the Healthcare act will allow us (TBIs) access to affordable care.No, I do not LIKE either of them, but when it came down to healthcare, and medicine affordability, Obama got MY attention. My hub still will vote for Romney, (he is crazy) but I am making a point of registering to vote (something I did not think I was smart enough to do, prior) and I will stand just outside (there is a legal footage in which poll takers cannot stand) their voter booths, or make phone calls, to make sure Obama Care is NOT repealed. Romney only has so many “handsome” years in which to ply his evil trade: making wealthy people stay wealthy, and making poor or poorly served people, DIE, before they get the health care so evident in Denmark, Sweden, etc.The people in those countries pay alot of taxes to make sure everyone has health care (Now, if only they would vote in Dental Care)
Do not ask or allow a dermatologist to work on issues of your TBI or epilepsy, and, in my opinion,choose a physician who has NEVER been sued for malpractice. Look him/her up. From his/her initial practice (usually not where WE found him/her, but look in the State he or she was BORN, went to med school, first practiced, etc. I have asked, on 4 occasions, of an office staff, “where did s/he go to med school” only to hear a deafening silence at the other end. I walk the staff through; “go into his private office, look at the wall over his chair, and just read it off”. THEN PHONE THE SCHOOL. FIND OUT HIS OR HER RANKING IN THE CLASS. A mediocre doctor can STILL practice on YOUR brain. The school and the licensing boards HAVE to tell you what they know. It’s not like moving into a new neighborhood and asking the neighbors who they take their kids to see (physicians and dentists). WE NEED SPECIALISTS! When I finally found one, his waiting room was full of very silent people, and he had lined the offices of his staff’s rooms, so that there was very little noise in the waiting rooms, and noise was not transferred from door bangs, computer noises. He even used a hushed tone of voice and had a sign on his waiting room walls that said “No perfumes, no loud noises”. Prior to finding him, I used rubber ear plugs.
Ramble, ramble, ramble.
brain injury self rehabilitation (BISR)
July 4, 2012 at 10:10 pm
You’ve made several good points here. First, to see a lawyer with a brain injury physician or nurse on staff and make sure it is a lawyer that specializes in brain injury. Second, something to think about with elections coming up. Everyone should vote. Third, checking out physicians credentials and inquiring with the school where they graduated. Finally, a true brain injury specialist understands the needs of their patients and you found this when your physician has limited external stimuli, including the noise factor. Congratulations to this physician and staff. How did you find him/her?
katharinetrauger
August 13, 2012 at 10:13 am
You know, sometimes it seems the best way to get good medical care begins NOT with finding a good doctor, so much as with finding a good lawyer. Maybe we can get the U.S. Treasury to pay for that, too?
brain injury self rehabilitation (BISR)
August 14, 2012 at 9:59 am
I’ve had another suggest to find a doctor-lawyer. There are some doctors who are also lawyers, but that’s difficult. Here is another issue with brain injury: One needs to be able to communicate well, and make frequent contact to pursue legal issues, but most with TBI don’t have that ability to do so and others are too busy living their lives to even be bothered to help. Many people don’t know how to help others. Very difficult situations. Too bad we just can’t get healthcare insurance or any means to help with the ongoing rehabilitation to offer some quality of life to all these people. One day a month for a lifetime is better then nothing.
katharinetrauger
August 14, 2012 at 10:26 am
I know.
But a doctor who is also a lawyer would REALLY scare me. (I tend to fear doctors — too much power . . . )
This reminded me of the volunteer program our state has where they ask women (the softer sex) to attend to children while they must be in court against their own parents. Perhaps such a volunteer system would help the disabled, too? Or already exists?
brain injury self rehabilitation (BISR)
August 17, 2012 at 7:46 pm
I am not aware of volunteer programs that help disabled but it sounds like something that could work. Of course, because the HIPAA regulations they probably will not let that happen. The reality: healthcare was always suppose to be confidential, now they call it HIPAA.
katharinetrauger
August 18, 2012 at 4:25 pm
Hmm. But in the cases where litigation becomes necessary, when it moves outside the arena of the hospital and into the courts . . . ?
aviesplace2012
September 26, 2012 at 10:58 am
Thank you so much for visiting and “liking” my blog. May your writing continue to inspire and lead others to proper health care. May God restore unto you “double” for your trouble stemming from your injury. (Zech. 9:12) God bless!
freshnewblog
October 24, 2012 at 4:27 pm
My exfiance is this gorgeous, big, beautiful man, but he had a traumatic brain injury before he and I met with an amazing story that goes along with it. I would love to tell it sometime.
brain injury self rehabilitation (BISR)
October 24, 2012 at 8:05 pm
I am sorry to hear about the journey you are traveling with traumatic brain injury and loved ones. You are more then welcome to share your story with me. I will also post it on my blog. My email address is edithflickinger@yahoo.com
freshnewblog
October 24, 2012 at 4:28 pm
I to not know if his brain injury effected him and I breaking up or not.
brain injury self rehabilitation (BISR)
October 24, 2012 at 8:08 pm
It’s hard to pinpoint precise problems after traumatic brain injury, but it’s very difficult when lives change so drastically. It’s frustrating for all parties involved.
cindyhfrench
December 28, 2012 at 10:39 pm
Edie, you know I thought I might sort of have known a little of what you might have gone thru before, but now I am sure that I have had no idea whatsoever. The little bit of meningitis that I had for two full weeks and still having some lingering side effects has cured me of that. My clients thought I had gone “wacky”- I think my boss did too, I kept explaining that I had this problem with my brain functioning correctly but no one really took me seriously–I guess because of all the serious stuff I have gone through to date and it didn’t faze me, so why should this? but it did and does! I have to re-type. I have to have someone else proofread-I don’t have anyone tonight, but am trying hard and re-typing, forgive any weirdness or typos pls! It is hardest on the phone where most of my work is done. I blurt out things I don’t meant to. Have you ever heard of this? unfortunately I can not go back to either of the neurologists that I have seen-long story, but not for public viewing. I guess I will wait and hope and pray I can get into see a new one in Atlanta. I am counting on the Lord to move us as He has directed us-found a place-got everybody all stirred up-and now I might have a problem w/my collections which would have moved us. But in studying the Word for something else tonight, He reiterated a word He had given me in Numbers about 4 months ago. How appropriate it was then as it is now!! Look at Numbers 23:19-20. Hopefully it will thrill your heart as it did mine! God knows I need my working brain back-it’s certainly not something I am or can “televise” if that is the word for again, obvious reasons. Again, my dependance is on Him. I can do nothing without Him-I guess that is just where He has wanted me all this time. Well, there it is in print, Lord God for all the world to see. Now let’s see what HE does with all of this…
brain injury self rehabilitation (BISR)
January 2, 2013 at 9:00 pm
Cindy, How are you feeling now? Thank you for sharing your situation with meningitis. Meningitis is very serious and I hope with treatment your symptoms have lessened. The lingering side effects will improve. Let me know how you are doing. Take care and stay safe, Edie
cindyhfrench
January 4, 2013 at 3:08 pm
Edie, it will soon (4 days) be a month now and I am still having problems. I have spoken with a couple of my nurses who say this just takes time, but how much time? I can’t even write an email and proofread it to be perfect at least not so far. I haven’t been able to do sequential things very well-just lots of things “not quite right” and after the neurologist closed up about me “taking my anxieties to God” and then 2 days later I had meningitis, I haven’t bothered to call again.
brain injury self rehabilitation (BISR)
January 6, 2013 at 5:43 pm
Cindy, This is really difficult for you to deal with. Meningitis is a type of brain injury. Every person is different and brain injuries are all different. Gosh, I wish I had that crystal ball and could give you answers, but I apologize that I simply can’t. We just don’t know how or when the brain recovers. It’s a process. Sometimes people recover within days, others weeks, some months, and even years … but the brain does repair. I think the variables of each injury and the individual are huge factors. There are some things in life we just don’t understand and this is the biggest mystery of healthcare.
One puts an extreme amount of pressure on yourself when one doesn’t recover as they want. The best thing to do while recovering is keep your brain active, and work on memory skills and compensate methods to help with your daily life. Eventually your brain will make new pathways in the recovery process. Keep me posted on how you are doing? Are you noticing positive changes every day? I will keep you in my prayers. Edie
dearrosie
January 12, 2013 at 6:25 pm
Good gracious Edie I’m so naive. I had no idea that a patient would attack a nurse with such violence it would cause a brain injury. You are very brave.
brain injury self rehabilitation (BISR)
January 13, 2013 at 8:41 am
Violence in healthcare is not spoken of often, but it’s a frequent occurrence. Many nurses and healthcare workers are injured daily. I still would say it’s a rewarding profession and I wouldn’t discourage anyone from entering the healthcare profession if they love helping people and are dedicated to advocate for patients and family. It doesn’t take much force to cause a head injury. In my case it was with great force with two blows to the head, most likely with brass knuckles. People don’t really you can get a brain injury from anything without even hitting your head. Are you aware of that? Take care and stay safe.
wildersoul
February 25, 2013 at 4:00 pm
Hi Edie, speaking of brain injuries without hitting your head, I’ve been recovering from post-traumatic stress which is classed as a mental injury, and has physical effects on the brain. I’ve come far in my healing, and am at the point where I want to share something helpful with others, and have chosen to create an online colouring book, due to finding that the simple act of colouring in a picture can help in healing. Katherine Trauger dropped by my blog and directed me to your very informative blog, and said, “Tell Edie I sent you.” : ) Sorry to hear of your TBI, and glad to hear your story of recovery, and to read the helpful information you are sharing here. I was wondering if you had any info to share on exactly why colouring is so helpful for the brain? I’m hoping to share such info with my blog followers.
Stay strong.
~WilderSoul
brain injury self rehabilitation (BISR)
February 27, 2013 at 1:25 pm
What a great idea with an on line coloring book! Artistic talent frequently emerges with brain injuries and helps with increasing awareness of self and others. Through ones self-awareness this helps to cope with traumatic experiences and symptoms, decreases stress, and promotes pleasurable experiences of life through artwork.
I’m not certain about coloring, but since it’s a form of artistic talent I would believe it has similar effects. Often after severe injuries art helps make sense of the world and surroundings especially when the former-self and new-self are very separate.
New & former self is not a matter of acceptance, it’s a matter of how the brain is damaged and repairs. I think indicating that one needs to “accept” what has happened and “move-on” is ignorance and negates the fact that most are trying to or have done so in the manner they can. Damaged brains don’t work like healthy brains! Some brains heal and others don’t, or they simply heal in different ways and no one has the answers why!
Majority of people have moved-on, but no one can totally separate a former-self from the new-self. If this happens it becomes a significant mental illness. It’s like leaving all your memories behind and not understanding why you are the person you are today. It’s the sum of all your life experiences that make you the person you are today. Most people become stronger by experiences whether they are positive or negative.
The idea to “just forget about it” is a form of suppressing memories and not understanding or working through life. Often everyone suppresses memories to get through difficult times, but those memories submerge at some time or another to later deal with that difficult time.
There is no right or wrong way, it’s all individualistic but psychology and psychiatric experts may dispute these beliefs based upon their professions. With more then 7 billion people on this earth only a small percentage seek outside help.
The way the brain heals is not controllable, but it can be helped to heal by exercise, nutrition and sleep among many other things. A few other things include hobbies: reading, painting, drawing, coloring, writing, and puzzles. These all enhance cognitive function, and by this promotes new pathways in the brain.
I thoroughly enjoy Katherine Trauger and her posts and appreciate her referral. I’ve been so far behind reading. Writing is a challenge and time consuming but a hobby and goal to help others and it helps my brain with ongoing healing process. Besides healing the brain, writing is an ongoing healing process for one’s entire mind, body and soul.
I will be writing a future post on this specific topic. Thank you for the thought provoking questions.
Take care and stay safe,
Edie
wildersoul
February 27, 2013 at 4:58 pm
Thank you Edie, I look foward to reading your future posts. ~WilderSoul
Second Chance to Live
March 3, 2013 at 1:19 pm
Hello Edie,
My name is Craig and I am a traumatic brain injury survivor — at the age of 10 from motor vehicle accident. I am also a masters level rehabilitation counselor. If you would like to read more about my journey and my process here is a link to my about page http://wp.me/P3atD-D. I created Second Chance to Live on February 6, 2007 to share my experience, strength and hope in living with a traumatic brain injury and invisible disability for the past 45+ years. If you are not aware of the link to Second Chance to Live, please let me to share a link to my web site with you my friend. http://secondchancetolive.wordpress.com/. I have written 1044 articles and created 123 video presentations uploaded to You Tube. I write and create to encourage, motivate, empower and instill hope. If I can be of service through Second Chance to Live please let me know my friend.
I look forward to being of service.
Have a great day my friend.
Craig
brain injury self rehabilitation (BISR)
March 4, 2013 at 11:03 am
Hello Craig,
Your site sounds amazing and including so many articles and videos. I will be spending much time and referring others to your site. Thank you so much for all you are doing. Education is what everyone needs. People like you, are what will change the information, education and understanding about brain injury. Take care and stay safe,
Edie
Second Chance to Live
March 4, 2013 at 12:24 pm
Hi Edie,
Thank you so very much. I look forward to being of service. I am putting the information out there and it may not be in my life time that people in the medical community grasp what I have to offer. That is OK with me, as it is not about me. We do the foot work. A loving God is in the outcomes.
Thank you again for your encouragement. You are a tremendous blessing to me. Thank you!
Have a great day my friend.
Craig
A.J. Lester
March 27, 2013 at 4:01 pm
Just found your blog, Edie, thanks. I’m a brain injury survivor myself (1998). My late father also suffered TBI as a young man and his life-long struggle with memory impairment acutely affected our family. That experience inspired me to develop an iPhone/iPad app, called It’s Done!, that has become a helpful tool for thousands of TBI survivors worldwide.
There’s a complete description of it at the iTunes AppStore and at the website itsdoneapp. com.
Briefly, the app is a task completion confirmation tool that helps users remember and confirm at a later time whether routine everyday tasks are done. Did I lock the door? Turn off the stove? Take my medication? The app can even automatically generate a text and/or email to notify loved ones or caregivers when the task is check-marked done.
Nick Dennen, a TBI survivor and author of “23-Time to Choose” said this about It’s Done!: “I have been using the app myself and have found it extremely helpful. It is more than just a helpful too, it helps strengthen your memory while making sure everything gets done when they’re supposed to.”
If you’ve had the chance to use the app, I’d appreciate your thoughts about it. Your feedback about It’s Done! may be quite helpful to others.
Warmest regards,
A.J.
brain injury self rehabilitation (BISR)
March 30, 2013 at 7:39 pm
A.J., It’s good to hear from you. You are helping millions by your own situation, understanding and educating … especially the app “It’s Done”.Please remind me to post on my blog so others are aware of this app. I don’t recall if I have. I have suggested it to many on a personal level. I’m still trying to change my ways instead of putting all my notes on a calendar so I’m not sure I’m using it to it’s full potential yet.
It’s Done is the best app for TBI, brain dysfunction of all sorts, chronic illness, and the aging population. It doesn’t take a life altering situation to use it. This app helps people to remain independent and safe. They should teach this app in healthcare institutions and community programs. Many people are simply disorganized and this app “It’s Done” helps organize life! Thanks for this amazing app. I do wish the font size were larger, or that one could increase the screen size or rotate it with the iPhone. Maybe I can, but just don’t know how. Is it possible to develop this same app for iMac computers? I do best with larger screens as in my laptop. I’m relatively new to Apple computers, but I love it!
Thank you for the creativity and development of this app. Take care and stay safe, Edie
annesquared
May 19, 2013 at 9:55 pm
Did I post the nomination? I’ve had 4 hours sleep in 3 days and am not sure if I emailed, meant to email, or just got sidetracked… 😦
I have a great deal of admiration for what you are doing!
brain injury self rehabilitation (BISR)
May 25, 2013 at 9:30 pm
Thank you so much for the nomination. I’m humbled and I appreciate your wonderful comments. I truly haven’t followed through with awards, simply because I can’t figure everything out. I’m still trying to figure out many things on WordPress to no avail … like “copyright” and where to put it. I’m sure you understand. I’ve stopped by your site and I need to spend more time as you have so much to offer. Take care and stay safe.
annesquared
May 26, 2013 at 3:57 am
I completely understand! I am still challenged by the technical aspects of the site and have yet to get the logistics figured out. (I found a widget that allowed for text and used that for the copyright. I don’t know if it even shows up half the time.)
My blog is taking a different direction than I anticipated and part of it will have to be spent on public health issues – it is my passion and I can’t separate that from who I am. I hope you don’t mind if I continue to direct people to your site – you have an awesome resource here! (Have you considered contacting a local community college or high school to have someone do an “internship” to help you with the logistics of your blog? Just a thought…the quantity and quality of your material is exceptional. I honestly don’t know how you manage to do it all!)
The awards are time consuming – but I have to admit I had fun with it. (Ok, the ONE award lol.) My problem… I kept researching and getting sidetracked looking up reference materials to verify my facts, etc.- way too much time.
brain injury self rehabilitation (BISR)
June 11, 2013 at 9:59 pm
Thank you for the idea of checking out someone to help through possibly an internship. I never thought of that. I also get sidetracked looking things up, but at least we’re learning and moving ahead. I highly recommend your site and “yes” you may continue to refer others to this site. It’s all about educating and empowering others! I appreciate your feedback. Take care and stay safe.
Second Chance to Live
June 12, 2013 at 12:24 pm
Hello BISR,
Which Blog engine are you using?
brain injury self rehabilitation (BISR)
June 12, 2013 at 4:47 pm
At the moment I’m using WordPress.
Eileen
August 15, 2013 at 4:02 pm
I stumbled on this site searching – forever searching for an answer/information and hope someone out there can help.
My daughter has a TBI (diagnosed 8 years ago) and had to give up her practice and stop working. She suffers from extreme fatigue – amongst other issues – but fatigue is the one problem that has made her quality of life very difficult. A year ago the pituitary specialist she went to said she suffers from panhypopituitarism (this was not discovered up until this point) and she is now on dexamethasone (only one of many other meds she’s been on for years). The specialist said that while there may be imbalances that are monitored, the extreme fatigue is probably a result of the TBI.
She sleeps alot and with whatever energy she has she bikes for about an hour a day (doing it intermittently). She cannot do much but she tries to adhere to the “physical, cognitive,rest” regimen as much as possible but this is less times rather than more.
So – with TBI and panhypopituitarism I’m wondering if there are others experiencing this combination of problems. I think her medical care – after years of searching – is good – but I can’t find an answer to this fatigue problem. It’s really chronic fatigue along with a head that “hurts” and a brain that can’t think when there is “too much” stimulation. It’s not for lack of trying…
While hope and prayer are an obvious I long for more.
Thanks.
brain injury self rehabilitation (BISR)
August 30, 2013 at 4:16 am
Eileen,
I am sad to hear about the struggles you, your daughter and all those who love her are suffering. It’s devastating to have life’s dreams shattered and it’s worse when experts can’t seem to solve problems and help when daily struggles are ongoing.
These daily struggles are all inclusive of even the simplest tasks of daily living. The proper chemical balance in the brain can give one’s life back. Never give up hope. After 18 years, I got my life back! TBI and panhypopituitarism should never be overlooked but it is rarely diagnosed and treated. Overwhelming stimulation is an ongoing but usually controllable problem … somewhat! Fatigue was my #1 problem. Without energy how can anyone function? I’m sure it’s not for a lack of trying. I think the “fatigue” problem is minimized to the degree it gets overlooked. Since she is already being treated, it’s likely further definitive laboratory tests can get her life back …
I am not a medical physician but can only speak from experience. I constantly have my endocrine status evaluated and adjusted. Our brains are so complex, but it seems like the person who must keep track of symptoms is the one who has the most difficult problems with cognition … survivors of TBI, mild to severe. There are professionals researching for answers and I believe more answers are on the horizon.
I certainly understand that you continue to push on for answers. TBI and panhypopituitarism is commonly misdiagnosed leaving many (possibly millions with profound fatigue and simply NO ENERGY or life to function that I call “Fatiguoexhaustion”. The chemical balance of the brain is so unique and precise it’s extremely difficult to tweek, but NOT IMPOSSIBLE! With your help, and her constant input you make up a great team.
Sometimes it takes repeated and precise blood work with endocrinology, neurology, neuropsychologists, behavior specialists, physiatrist, vision specialists, among other specialists all working collaboratively but that rarely happens. It seems as though the patient and family are the people who need to bring this all together … and that’s more then a full time job, but it is many lives destroyed if problems remain unsolved.
I recommend clicking on my Home Page and under “Effects of TBI & Neuroendocrine-Hormone Imbalance Links” to help direct you. These are Links related to Adult Growth Hormone Deficiency, Adrenal Insufficiency, Adrenal Crisis, Thyroid Imbalances, Diabetes after Head Injury, and Autonomic Instability/Dysfunction following Traumatic Brain Injury. Click on the link for further information. This is not a complete list but should help out. As I find out further research I will be posting it on this site.
I do apologize for the delay in response as I’ve had a personal “bump in the road”. My spouse is recovering quickly from a motorcycle accident. It’s not drama, Life Happens, we learn, we live, we adapt, we readapt, and we continue living sometimes a very different routine … but it becomes the new norm and new routine. Change is constant, so life is never boring! We don’t have to like it, we just have to deal with it!
Sounds like you have an excellent understanding of TBI and I believe your daughter will improve. I hope you keep me posted and I look forward to hearing further from you. I appreciate your input.
I personally believe she will improve. None of us with TBI and our families should be complacent and settle for simple answers. It’s people like you that will make our medical community researching and solving the medical issues of brain injury. They can only solve these problems with our constant input and repeated requests for some quality of life.
Your family deserves quality of life issues resolved, and I appreciate knowing others will not simply accept that fatigue is a symptom of brain injury when it can sometimes be corrected partly related to Growth Hormone Deficiency and other hormonal deficiencies caused by brain injury.
Take care and stay safe,
Edie
Eileen
August 15, 2013 at 4:04 pm
Sorry but I should have added that I am not savvy when it comes to this sort of “post” and don’t even know what to do after I send it. I’m hoping that I’ll get an email what to do.
Thanks so much
Eileen
brain injury self rehabilitation (BISR)
August 21, 2013 at 8:43 pm
Eileen,
No apologies are necessary. This is a learning curve for all of us. I will try and address the questions and comments you have submitted as I know your experience is helpful to others and many are looking for answers.
Take care and stay safe,
Edie
Sharon Jones
September 23, 2013 at 8:55 pm
I am so happy I found this site as I suffer from brain fatigue. Two years ago I suffered a ruptured brain aneurysm, six months later another coiled aneurysm and six months later crainianotomy to fix malformed arteries. I can barely function because of the fatigue. This site gives me hope, thank you . Shari
brain injury self rehabilitation (BISR)
October 8, 2013 at 10:38 pm
You certainly have a lot going on. I do believe there are answers to this level of fatigue. It seems like the response most people get “It’s common with brain injury!” If it’s so common then why don’t we have answers? After nearly two decades I was shocked that I recovered and I know many others can to! First we need to find the professionals that are willing to listen and take a unique interest in “The Brain and How It Functions” … if the brain doesn’t function how can one expect their body to function? I do think you will improve significantly. Feel free to ask questions or summit comments. I apologize in the delay to responding. Take care and stay safe.
Linda Papo
November 22, 2013 at 12:39 pm
Dear Edie,
I am so happy to stumble upon your blog. I was typing “how to toilet train a TBI survivor” and your blog is the first one that I pressed.
Thank you for your dedication and passion in sharing information and educating others on this topic. I am a care giver to my husband whom had his accident in Central Kalimantan (jungle of Indonesia) when leading a mission team building churches in the very remote area.
After 15 months, 5 brain surgeries and doctors told me to be ready for my husband to “leave”, the Lord has shown his faithfulness and grace by keeping my husband alive and now improving. Though it is slow, but I choose to be thankful with every tiny improvement I see. This is my best coping mechanism 🙂
I have sooooo much to learn from you, being a care giver has never cross my mind, especially when it is for my husband (we Asians usually expect to take care of our elderly parents or seniors) but not my strong build, highly dedicated and intelligent husband whom suppose to be the head of this house.But by God’s grace, I am still here sane, taking care of my husband and my 2 sons, 8 and 11 y.o.
I know the road is still long, but with strength from Him and people like you (i have a special name for you all “angel in human form”) to support me in being a better care giver…..i know I can get through this.
Time to rest now, as it is past midnight here in Surabaya, Indonesia.
God bless you and family,
Linda Papo
brain injury self rehabilitation (BISR)
February 2, 2014 at 10:57 pm
Hello Linda,
I am sorry my response is so delayed. I actually thought I responded to your comment but I’m not sure if I wrote an email or if I just put it on paper and never processed so I’m responding either for the first time, or second? You really have your hands full taking care of two children and your husband. Remember you also need your rest, and your children need a healthy mother.
I’m sure your husband would want you to focus on the children, but his needs will be extremely important. If you need to hire in the home assistance to help with his care, please do so. You need to remain healthy for your children too. They need a healthy mom and caregiving is an extremely difficult tasks. How is your husband’s behavior? Is it appropriate or inappropriate? Does he remain fairly calm or does he have violent outbursts?
I ask this because I have seen behavioral changes of all sorts. Aggressive behavior can be difficult when one is young and strong. There are so many variables with brain injuries, and until one experiences this it’s hard to imagine. This is not a type of injury that”one size fits all” … actually every single brain injury is different and that’s what makes it so hard to treat, and so hard to predict. Recovery is just as complex … some recover spontaneously, others don’t and gradually recover, and yet some just one day seem to have that fog lifted and they recover without many adverse effects. Whatever the treatment, whatever the injury, there is just so much we don’t know. Besides, it’s still “invisible” except behaviors hence people can’t make the relationship between brain injury and behaviors even though it’s clearly documented.
If there are any topics that you believe I can help you with (and others) please let me know. I doubt I would be shocked with anything. [I just thought of a young man I had as a patient requesting a urinary cath done again … now those catheters hurt (nothing fun about that) … now there’s a clue of brain injury. Who on earth would ever request a urinary catheter unless they had a severe brain injury. We all need a little laughter, when things look so bleak!]
How is your husband doing now? Have there been any changes over the past several weeks? If so, what type of changes?
What are you doing to take care of yourself? How are your boys doing?
Take care and stay safe,
Edie
WilderSoul
November 25, 2013 at 12:33 am
Hi Edie! Just dropping by quickly with a little gift, in appreciation of all the work you do raising awareness and providing valuable information on traumatic brain injury! Also, you have followed my blog right from the start, and are a big part of making WordPress the friendly place that it is! Thank you, and Kia ora!
http://wildersoul.wordpress.com/free-gift/
Anasera
brain injury self rehabilitation (BISR)
February 2, 2014 at 9:48 pm
Anasera, Thanks you so much for your kindness. I’m finally getting back and your site is a priority to visit. I hope to be checking out this week. One thing at a time and I’m trying to figure out the changes in format by WordPress … unless it’s really just me but even if it is … it’s all new! Take care and stay safe, Edie
Linda Wijaya
February 3, 2014 at 5:28 am
Dear Edie,
So glad to finally received your reply. It’s OK, you are doing many great things in helping people with TBI and their caregivers…..I’m honored to have you reply personally.
My hubby has been impulsive and aggressive the past 2.5 weeks. We don’t know where it comes feom…no change of meds nor exercise routine. ..it’s just surfaced and im cought off guard.
He keeps asking for a chain of things to be done…in sequence but repetitive…and when it’s not met he will bite his mitten (we out it on his strong right hand so he won’t keep pulling his diapers n shred it to pieces). He occasionally bite his own hand too…keeps asking for fresh fruit until he keeps passing motion. He repetitively ask for a knife to kill himself (now has reduced frequency since taking lexapro).
We now seeing a psychiatrist to give him meds that will hopefully curb his impulsive behaviors and agitation. He can’t sleep at night n sweat a lot as if he just showered without drying towel. He occasionally slap me but immediately say sorry. I can tell from his eyes he doesn’t want to do any of this…but he can’t stop himself. And this is killing me inside….to see my husband reduced to this…with no dignity nor sense of shame.
I have met the psychiatrist 3 times the past 2 weeks and the dosage n type of meds been changed 3 times too….but no obvious improvement.
What should I do Edie? He is very strong on his right hand and we need 2 people to calm his agitation …he needs nebulizer to thin his phlegm and he kept pulling the mask.
We can’t help him much and his routine exercise n swim is interrupted by this surge of this compulsive behavior.
Now he is taking:
Gabapentine 250mg in the morning.
Cipralex (lexapro)5mg in the evening.
Alvin (sleeping pill, tiny blue color) at night.
Pls Edie if you know anything that will help our situation do let me know.
I don’t know how else to help my husband.
My boys are getting a bit more willing to interact with their dad…but my young one , Luke 8yo….still reluctant compared to his older brother, Josiah 10yo. Luke keeps asking the Lord to heal his dad n “return” his old dad to our family.
brain injury self rehabilitation (BISR)
February 4, 2014 at 8:58 pm
Linda,
I am contemplating my answer here and since many issues come into play and is common to many brain injured survivors and their families I have decided to write a post or two trying to explain different options. These options will come from my professional career, my personal experience, and from a friend who survived a severe traumatic brain injury after being in coma for several months. It takes me a little while to write but I will try to have some answers or at least options by Fiday.
In the meantime, if you believe this is a new change it might be a part of brain injury but it could be a new complication or something easily treatable: couple examples of easily treatable conditions: urinary tract infection, respiratory infection,pain. thirst or a number of uncomfortable situations that the survivor can not express. I will try to help problem solve in the post, but the caregiver is the only one healthcare will listen to. You are the only one to push for treatment because often the survivor can not express themselves well.
Thank you for providing me with important information that others can benefit from and I am not avoiding the problem, but writing about it and will post this week.
Take care of yourself and boys and keep everyone safe.
Take care and stay safe, Edie