Dementia and other progressive cognitive disorders
Author Archives: brain injury self rehabilitation (BISR)
You never plan on things happening, but be prepared in case of an emergency especially away from home. Hours in the emergency room can easily separate you from others traveling with you. Trust that others who are safe will help out.
Know as you sit in the emergency room with your loved one you may be hearing about the injury and accident for the first time. The individual’s perception of the accident may be quite different then what happened especially if they don’t recall the accident they will confabulate. Keep an open mind.
Focus on the positives and all the pleasures and new memories you’ve created before the accident. Take pictures of injuries so when you return home physicians can see the initial injury compared to the healing process. Comparison is always important. Even though x-rays, MRI or CAT scans are completed, it’s best to have a visual from your own camera.
Have someone take pictures of scene of accident and damages to any property such as vehicles, motorcycles, guard rails, street signs, buildings, clothing and other gear. Take pictures of license plates of witnesses in case you don’t get personal information. Ask for personal information when possible.
When personal injury is involved helping the person is more important then retrieving witness statements … but that depends on who you are talking to! Health and safety should always be a priority.
Carry a BAG, BACKPACK, OR WATER BACKPACK with the following items:
- Driver’s license or personal identification
- Medical insurance cards
- Prescription cards
- Business cards (your own personal information to pass on to others)
- List of medications for persons traveling together
- List of allergies & reactions for persons traveling together
- Medical history for persons traveling together
- Contact list of significant people to notify in case of emergency. Include physicians with telephone numbers
- Address & telephone number or business card where you are staying
- Cell phone & charger & bluetooth or earpiece (if you use one)
- Camera with charger, battery, and/or memory card
- Prepaid calling card
- Small amount of cash
- Medications a weeks supply (oral and injections)
- Toothbrush and toothpaste
- Small hairbrush
- Gum and/or Hard Candy
- Protein or nutritional bar or snack bar
- Index cards or small note paper
- Contact someone to look after a pet if left in your room or traveling with you
- Take your Pets favorite toy and bedding
- Make sure your Pets are cared for
- Travel with Pets immunizations records with business card of Veterinarian
- May need to contact the local kennel especially in an emergency situation
*****These items will help in an emergency. When someone has a number of allergies it’s difficult to think of each one during a crisis. A typewritten list in very small font is helpful for medications, medical history, and relevant contact people.
Don’t assume your cell phone has enough battery power. Power wears down quickly when in an emergency situation. Have a charger handy to keep your telephone charged. It may be the only form of communication if you are within cell range of others.
A prepaid calling card makes it possible to make telephone calls from an emergency room to nearly anywhere without having to carry excess cash. This also helps in case the cell is fully charged and you don’t or connect recharge it immediately. A small amount of cash can provide for a quick meal.
Keep all medications handy. Most hospitals will take your prescription medication or whomever is being treated rather than charge an exorbitant pharmacy fee. You never know how long you will be in an emergency room or admitted to a hospital. Don’t forget to take care of YOU! “Be prepared” for the unknown!
It makes things much easier if you take the above items where ever you go. In the event of any emergency it makes things easier to handle.
I’m sure many people have found themselves in an emergency situation and you noticed some things were more helpful than others. What other items do you find necessary in the event of an emergency?
- Define Emergency! (psychologytoday.com)
- Negotiating Medical Bills (debtconsolidationusa.com)
- Here’s how one hospital will use the iTriage mobile health app (medcitynews.com)
Laughter is powerful and healing. Being observant of others and our surroundings can bring laughter of things we or others do. You pulled up to the gas pump to fill up. One goes in to pick up coffee and tea while the other fills the car with gas. The line to McDonald’s is long. On the way out one notices Read the rest of this entry »
I apologize for the long delay responding and writing. It’s been an overwhelming summer: listing a home for sale, putting that on hold while a friend living with us was hospitalized for 6 weeks, vacationing and camping in Wyoming and Montana when spouse was injured on a motorcycle ride, and finally progressively pursuing rental of home and ongoing packing … life happens and we take the journey with detours and bumps in the road but we keep moving ahead!
It does not matter what happens, but what matters is how we handle them … and I continue to handle everything with love, support, sincerity, care, concern, courage, and finally gratitude for another growing experience albeit overwhelming.
My sincere appreciation to all those who stopped to offer emergency care to my spouse. Someday I hope to reach all those who took the time to help. Because of this situation, my faith has been restored in knowing there are many sincere and caring people in our society.
I have two loving siblings and their spouses on our trip that handled the later accident and help problem solve while I stayed by my spouse’s side during his hospitalization and for many reasons I am blessed, but especially with my supportive siblings.
We continued the journey with humor, fun and much laughter! The spouse is doing exceptionally well with rehabilitation. These situations have been unpredictable and prioritizing life’s situations has been challenging but not unbearable. It’s not drama, it is life! I am planning to return within the next week. Thank you for understanding and inquiring.
Vision? What vision? What’s your vision of perception? Have you laughed at some ridiculous comments or created laughter in a room full of serious people? At a recent specialist appointment to check Vertical Heterophoria one was given a few opportunities to laugh and create laughter. Take every opportunity you can to laugh. Laughter is healing and healthy.
One was told to read the lowest line you can see. One did just as told. At the bottom of the chart or might one say the bottom edge of the card was a small line that read something like “Snellen chart copyright…” The people in the room never heard that one before. Roaring laughter filled the room!
Are we programmed to read something like this: a.d.b.c.2.z.4 instead of listening to precise instructions. Was this the smallest and lowest line on the chart? Maybe no one else could see that line! Next time one will take a closer look at the chart. Who knows what everyone is missing!
Then one was asked if one felt as though head was tilted! Didn’t think that was unusual either. After all, how many of us were told as children to “Get your head on straight!” By the 6th decade you’d think we’d have our heads on straight!
Another way to check vision one was told to walk tall. At 5’9” I was wondering how I would walk short? The doctor was not quite 5 foot, so walking tall might have been her problem!
Life is simply too serious to pass up moments of laughter you can share with others. What was the situation that you were able to laugh or create a positive outburst of laughter?
- Laughter Is An Instant Vacation (planetsellas.wordpress.com)
- Something You Can Hang Your Hat On-Laughter Is Cheap Medicine (thenew1037.cbslocal.com)
A walk in the park is peaceful. A time to slow the pace of life and take in environmental delights! Here you’ll find uncomplicated natural things that get overlooked quickly in life. It’s a place to take in nature and enjoy effortless things in life. It’s stress-free place if you plan on making it a pleasurable experience.
During the past 6 weeks I needed time to gather my thoughts (if I had any left?), practice deep breathing exercise, and simply enjoy nature. It was a time to relax!
I found the park setting as my usual peaceful environment and giving me time to refocus and pray as I made the daily drive to the hospital. Power of prayer should never be underestimated.
Driving in traffic is hectic and I’m not tolerant of impatient drivers … I just become one more impatient driver! I found an alternative route through the park and I avoided traffic and craziness that surrounds busy streets or highways. Certainly I didn’t need additional craziness, there was enough in the healthcare settings!
Again, I’ve been reminded life isn’t a “walk in the park”! Certainly, I didn’t need any more reminders but life happens! It’s just another bump in the road, and I don’t mean a chuckhole … probably more like a sinkhole!
A “ride through the park” has the stress-free effect. It was just a different route, as life takes us all on different paths.
So when life isn’t a “walk in the park”, take a “ride through the park” and your senses will bring you back to task and spark life when things seem so dismal. I want to meet the person who coined the phrase “life is a walk in the park”!
When was the last time life seemed easy?
- Use Nature To Get More Clarity (ingeniouspress.com)
- What Are the Health Effects of Anger and Stress? (stress.answers.com)
- How Do You Overcome Stress? (germaineparra.wordpress.com)
- 3 Easy Ways to Design for Health (anthrocentricdesign.wordpress.com)
Simple tips for brain injury, illness, aging, injuries, patients … Do you have an advocate? Part 2 of 2
A person that is traumatized or fighting illness needs help. Read the rest of this entry »
Simple tips for brain injury, illness, aging, injuries, patients … Do you have an advocate? Part 1 of 2
No one can be totally prepared to handle a medical crisis alone! How can you be the patient and advocate along with a body in crisis? Some are better ready than others, yet these are too very different roles. If you’ve never been ill or injured you may think you will never need an advocate. Trust me, everyone NEEDS an advocate! Read the rest of this entry »
Ever seen those signs “No shirt, No shoes, No admittance!” Read the rest of this entry »
Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 6 Series)
Cognitive deficits … overwhelmed & problem solving
People with cognitive deficits usually become overwhelmed after misplacing or difficulty problem solving repetitively in a days time. I’m saying, like hundreds to thousands of times in a day and that’ s not an exaggeration. Just ask someone with a brain injury.
That’s when rest is needed!
If family and friends are puzzled and angered by this, it’s no wonder many employers will not tolerate a behavior that could be changed with routine and intermittent rehabilitation. Employment is possible and necessary!
Why not intermittent rehabilitation
I’m advocating for intermittent rehabilitation with brain injury, chronic injury, and illness. Every phase of life there are adjustments. These adjustments frequently need help. Rehabilitation should be available when the patient needs to get over the difficult times. Intermittent rehabilitation can help.
The patient or family should be able to dictate when things are difficult. Not everyone needs help the same way and not everyone needs or wants help.
Rehabilitation needs to be unique for an individual. It should not be dictated by insurance companies or lack thereof. With proper rehabilitation life would be an easier path to adaptations and adjustments helping people to become productive members of society and have optimal functioning lives.
Funding for rehabilitation
It’s known that when the initial injury or illness strikes insurance companies pay, or government assistance programs pay, or the family claims bankruptcy or depleted funding if they have it available or they simply remain in debt the remainder of their lives.
At the start of hospitalization employees are informed how much the insurance will cover for every patient. They use up all the funds available and you are discharged in the exact amount of time your insurance company pays.
If the insurance pays two weeks rehabilitation expect to be discharged to home without any ongoing rehabilitation. If they pay three months, you will not be discharged for three months.
Reenter into unstructured lifestyles
Why can’t a patient use 30 days of a 3 month period and reenter after leaving with the issues they feel are problematic? No one truly knows what their problems are until they attempt to live in the unstructured life, when everything is chaotic: their brains, body, mind and everything around them.
This is where our system fails. In most cases, if litigation is pending that person receives lengthy physical therapy visits and rehabilitation to prove the legal case even when it is not necessary. When it’s necessary there should be no question. Why can these abuses drain the system? It’s about money. $$$$ It should be about life and health.
Learning to adapt to these changes from a system that has billions of neurons may or may not be permanent. That’s the problem, it’s simply unpredictable. Do you have a body or brain you cannot rely on?
Are we just disposable or abandoned
What does the employer do when they can’t count on the employee? They fire them. What does a spouse do when they can’t count on you? Separation, divorce, abuse, or maybe a battle to understand or become educated when there is no help available.
Life seems topsy-turvy for many and I’m advocating for change. Intermittent rehabilitation can close the gaps of long-term problems. The problems should be identified by those who are suffering. Who’s life is it anyway? This is a fixable problem … why not help fix the faulty wiring?
Brain injury is NOT Cost effective but what is
It’s more effective to have healthy, happy babies, children, teen, adults, and elderly then watch them struggle. Can you put cost-effective first for a life? Life just isn’t cost-effective anymore. It’s all about financial gain … instead of problem solving.
It is cost effective to treat what we know. We know and have always known about brain injury. It’s the level of media attention that brings injuries out. Let’s get a handle on healthcare, and understand about the brain. If the brain doesn’t work, either can the mind.
I find it hard to believe the brain is working if the mind is believing that it’s okay to avoid proper rehabilitation for profit and financial gain. If it happens to someone you know, it will be an entirely different picture and that financial gain won’t seem to be so important. Too many people think $$$$$$$$$$ instead of health!
Let’s make our infants grow strong, our children grow healthy, our teens mature with dignity, our adults grow with independent minds, and our elderly grow with peace that they have made a difference in the world and they can until they depart this world. Let’s not open our eyes with $$$$ signs, but open them with health!
Happy 40th Birthday Dear Daughter! You are who you are, and we wouldn’t have it any other way. We’ve learned together, we’ve grown together, and all they said you couldn’t do … you’ve done and so much more! We love you! … July 4, 2013
- Ideas for Brain Injury Treatments (therapiesforautism.wordpress.com)
- Genetics and the Risks from Traumatic Brain Injuries (23andme.com)
- Insurance won’t pay for teen’s alcohol-related injuries (fox4kc.com)
- Brain injuries need time and rest for recovery (miamiherald.com)
Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 5 of Series)
Of course there was torment and bullying. Who hasn’t been bullied? There are different degrees of bullying. I’m happy to see this has media attention, and more severe consequences. Teens sprayed hair spray in the gym locker room into her face and lit a match. Is mainstreaming really effective? Homeschooling a better option? Tutoring beneficial? How can we really prepare children with special needs? Do all special needs children get the same? How do we protect these children when mainstreamed? That will be another post.
She played softball. Albeit, she was catcher and the empire picked up the ball for her. Regardless, she was embraced by the number one team and those young teens accepted her for who she was.
We will never forget these mature young women who embraced her with enthusiasm as they understood more than adults. There were other friendships along the way. Some users, some abusers, and some honest and trustworthy friendships.
At one point she was engaged to be married to a registered nurse. Wedding plans were under way, but finding that lack-of-understanding and lack-of-compassion and taking advantage of a vulnerable young woman were far too much for her mind to endure.
She had the strength to cancel the wedding without asking anyone. We were all shocked. She never talked about problems. It was solely her decision. The only thing we requested was to return the diamond engagement ring. She did not personally do that, but we as parents made sure it was delivered in person.
Even though we remained shocked, we always told our adult children that if they ever change their minds regarding marriage plans … they can walk away regardless of any financial debts incurred because of wedding plans. Happiness is found within a person, not outside a person.
We were fortunate that our daughter had some excellent teachers. Her most memorable, and one who deserves many honors was her first grade teacher. She spent every Sunday with me on the telephone reviewing the weeks assignments and how would could work with her. This was a learning process for all of us. Teachers have such an impact on our children. As they invest time in these innocent little lives, they invest in the future. Thankfully, teachers have been creative in the learning process.
Many times they identify special needs and gifted children sooner then other disciplines. Teachers are dynamic and loving role models. Everyone remembers there favorite teachers. Most can identify why they were “favorites”. What other occupation will spend 6-8 hours a day with your children?
Early routine – not walking?
Routine for my daughter began when we were told “she will never walk”. Why would we tell others? We wanted our daughter to be just like everyone else! That’s normal for parents. All our friends babies were walking and crawling. We stood her up against furniture and quickly took pictures as though she were standing. Her milestones were significantly delayed.
At one point we were told by an orthopedic surgeon she needed surgery for her hips and they would put her in a body cast for several months. These surgeries would be ongoing as she continued to grow. That is one thing we disagreed with and rejected having to put her through these surgeries.
The orthopedic surgeon became so frustrated that he asked me to leave the room. The door was partially open. I heard my daughter screaming (about 18 months old). I pushed open the door, and he was twisting her legs in usual positions without a diaper on.
This may have been a normal evaluation and assessment of her situation, but I was not prepared to hear my child screaming. You can only imagine a child with a high sensitivity to pain. This was long before her proper diagnosis. I would suggest for any mother not to leave their child alone and have the physician explain what to anticipate.
This was the last time we visited this doctor, but I never forgot the name. It was hard to imagine what a child’s life would be like in a body cast for at least 50% of her life until she was about 12 years old.
We are happy we never went this route. I don’t think surgery would have ever helped. Surgery does not help seizures. Surgery causes many additional problems. Surgery doesn’t correct cerebral palsy but it does correct some problems with cerebral palsy. Surgery is not always the answer!
I took her to the YWCA every morning for swimming. She wasn’t given physical therapy, because after all no one diagnosed her problems because they didn’t have the insight or records that could help her with treatment in her life.
Medical records exposed
It wasn’t until her 20s we had her medical records in hand. She was “cyanotic” (lack of oxygen to the brain) in the nursery. With this knowledge, she would have been entitled to physical and occupation therapy among other interventions. This would have helped with gross and fine motor coordination. Something she still deals with daily.
Knowing how to help would have relieved an enormous amount of stress over the years. It should be the responsibility of all healthcare professionals to disclose their findings openly so proper treatment and diagnosis happens, instead of covering for other issues. It is the patients rights and families right to receive proper information.
This is a great injustice to families when they send their loved ones home (infants, toddlers, children, teens, adults, or elderly!) with out information and knowing complications may arise short or long-term.
Why laughter and humor … lacking education and compassion
Laughter and humor are important to deal with crazy things we do daily. Without laughter, this is difficult injury and depression may become deep, dark, and unexplainable for the individual and families. Unless, you’ve been there you don’t understand. Everyone needs to laugh and a smile is contagious.
Some people may have simple memory lapses, but they get overwhelmed and frustrated quickly. Those with TBI and other brain dysfunctions can’t grasp what “the big deal is all about”. If you point out “this is an every day occurrence” and minimize the situation the reply you may receive in an angry tone may be “you have a reason”! Yes, there is a reason … but another’s lack of education, compassion, and understanding is no excuse.
When you emphasize what it is like forgetting hundreds to thousands of times a day … your problem is also minimized and the focus shifts to their one time experience or a few experiences. That’s another entire issue, but it doesn’t belong to you. Don’t own another’s problem.
- Retraining muscles to move smoothly in cerebral palsy cases (miamiherald.com)
- ‘It Just Takes Me A Little Longer:’ Video About Scott, Man With Cerebral Palsy, Goes Viral (VIDEO) (huffingtonpost.com)
Advocacy. Listening. Persistence. Life. Health. POA. TPN. SICU. Ventilator. Disability. Rehabilitation. Healthcare. These are just a few terms that one’s dear friend is learning by experience. An experience no one wants to find themselves in.
First I do want to thank everyone for their prayers for the person who has shared our home for the past 4 years and I’ve known since age 5. In her struggle for life she found “healthcare is good if you never need it!” She never needed it before, but when she had developed progressive problems no one seemed to hear her complaints. A common complaint to many!
Over a short time she became worse. Finally her body would no longer go regardless of how hard her mind pushed. Her life came to a stand still! She was no longer well enough to work. She feared loosing her jobs. Now, all she wants is her health. We all have hope and prayer.
It’s been a tough month, but something I’m familiar with … on all levels! I was saddened to see how healthcare professionals expect everyone (regardless of education) to know exactly what was happening and to totally understand everything in their time of crisis.
It seems like no one has time to educate. What’s more important than health? It’s been a time to constantly educate and that’s kept me busy in a way I’d rather not be but I’m comfortable with this yet exhausted and overwhelmed. There is no routine.
My dear friend is entering territory that no one wants to enter. Her future looks bleak, so it’s day-by-day … but hopeful!
Persistence saved her life. Albeit, quality of life altered significantly. Five attempts at getting proper healthcare. Finally someone heard her desperate plea for help but most importantly they did blood work. She’s never been sick in her entire life.
The next thing I knew she was calling to let me know they were preparing her for the first emergency surgery. I arrived within the hour at the emergency room. After two surgeries and a number of medical procedures she is now off a ventilator but continues to struggle for life in an acute rehabilitation center with many medical complications from multi-system failure.
It’s unbelievable that she survived and I know anyone who had visited during this time feels the same. Her outcome is unpredictable, and only time will tell.
Education has been out but others don’t act upon it. I just want everyone to make sure they clearly know what they need to do in a true life-altering medical emergency. Do you have a Healthcare Power of Attorney? Do you have a Financial Power of Attorney? Don’t wait till this happens. Every second counts when dealing with life-threatening illness and injuries.
Do you have a place where updated telephone numbers are easily accessible? Do you know what your loved one wants? Please have these discussions. It’s your responsibility and its your life! Time is of essence when dealing with life-altering illness or injuries. It’s a time of action and support, and not time for discussion.
Who are your advocates? Being prepared makes these crisis easier to handle. Are you ready if it happens in your family? If you panic in crisis do you have someone who will react calmly to the most devastating news?
- DIY Documents, Part 4: Powers of Attorney (leichtlaw.wordpress.com)
- Finances and Your Aging Parents (creditrepair.com)
- Piper’s emergency surgery (paisleyandpiper.wordpress.com)
- Rates of Emergency Bowel Surgery Vary Wildly from State to State: John Hopkins Researchers (medindia.net)
Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 4 of Series)
Catastrophic reactions and safety issues
When she is in crisis, it’s nearly impossible to find peace and calm within the household. It’s easy to cause a catastrophic reaction from her, as things escalate out-of-control when her brain does not process information. Parents need to keep themselves safe with these catastrophic reactions.
We put key locks on my bedroom door so when behavior escalates I can separate myself into my own room for safety reasons of both. The physical strength of a child or adult with injury seems so strong when a catastrophic reaction occurs.
When this involves only emotional outbursts, it’s more tolerable. The physical strength is beyond comprehension, but I attribute it to the combination of emotional meltdown and physical outbursts that happens against the primary caregiver. Primary caregiver is usually the mother. It’s not a personal attack, it’s who usually available when these outbursts occur.
Through my experience I have learned things happen with all brain injuries, and safety should always be number one issue for everyone involved. Don’t ever let anyone corner you. If you can get the older child or adult between a door, you should close and lock it until things calm down. You need space and separating you and the other person from physical harm.
Age 5 diagnosis mentally retarded or brain injury
At the age of 5, we were told she was mentally retarded by her first teacher. That was devastating, and we were sure she was wrong. She was.
Parents deal with a lot when their children are not “normal” and rarely share with others because they think they are just “complaining” . In reality, others don’t “understand” and won’t get “involved” because life is too busy to be compassionate even with children.
Eliminating environmental stimuli
Because of the necessity to eliminate all external stimuli the home was peacefully quiet beyond what I was familiar with being raised in a family of eight.
It seemed as though my spouse also needed this calm but we all have different experiences in life and I wouldn’t change anything as I know so many different levels simply by experience. I was raised with clutter or maybe others would call it “hoarding”.
Routine and organization for your child with brain injury
Nonetheless, routine and organization has continued throughout her 40 years. Because she does not have the obvious physical problems their has been little compassion from friends or relatives. Again, it’s an invisible injury! If it’s not seen it doesn’t exist! People are very concrete thinkers. Of course there are a number of emotional and cognitive issues with brain injury but unless you have been there, few understand.
It’s about education. Brain injury is not new, but for some reason education is lacking … or is it simply compassion, caring, understanding, and simply helping that’s lacking? People are cruel and rude to these children as they grow. They are not looking for sympathy. Love and support go along way.
It’s not as though anyone is looking for empathy, it’s the education and understanding that is lacking. Cerebral palsy is a brain injury. As a young parent it would have been easier if she was diagnosed and treated properly. Instead, the struggles continued until her teen years. She didn’t know she was different. Her struggles were obvious, but she was exposed to all the things other young children were.
Middle school – structure, environment, and stress changed
The real issue began when she entered middle school and she was falling down stairs and falling constantly at school. They did not want to be responsible or accountable. The problems did not change, the structure changed.
When she fell down stairs at home the parents were to blame. Elementary school was on one floor. With poor coordination no stairs made things easier. Falls still happened frequently, both at school and home.
Satisfactory or good medical treatment or diagnosis
When she continued falling in middle school they called us to school telling us they believed it was a medical condition. With the proper physician, a pediatric neurologist it didn’t take long before she was finally diagnosed with seizures or epilepsy. I advice everyone to get a specialist. Your children’s lives are important.
This truly only happened after she ran a fever of 106 for a couple of days. We were given some “lame” instructions to bring down her fever as though it wasn’t happening. We finally took her to the emergency room when the entire scenario changed.
She was hospitalized for a couple weeks. One physician gave us details of where to take her for good medical care. We believed we were getting that otherwise we would have changed physicians.
We lacked insight into poor medical professionals, or did we trust too much? We will never forget and will always be grateful to this doctor. It only took one healthcare professional to tell us “If it were my child I would take her to …. Dr. IAmListening” and we did.
If you feel your family physician is not listening, you are probably right! Fire the family physician, and get someone else. Finally, she was successfully treated with anti-seizure medications and the seizures stopped.
- My Thoughts on Cerebral Palsy (unstopabilities.wordpress.com)
- Understanding child brain injury symptoms (cerebralpalsyresource.wordpress.com)
- Know about cerebral palsy and Down syndrome (therapiesforautism.wordpress.com)
It is great to wake early in the morning and get to the pool before it gets busy. It’s also routine to walk out of the house with keys in hand to unlock the car door before driving off. What’s not routine is sitting in the passenger seat with keys in hand and waiting for…what I have no idea?
No, I don’t know why I was in the passenger seat! It was far past midnight so I’ve already turned into a Pumpkin or maybe 5:30 a.m. I was Pumpkin Pie! Oh the silly things we do … and it’s really never a problem if one figures it out.
Hey, I realized I couldn’t drive while in the passenger seat. It’s really only a problem if I think I can start the car in the passenger side of the vehicle and drive away. I was safe with the seatbelt on in the passenger side, even though I wasn’t going anywhere!
What did you do that seems bizarre, but in your heart you know you’re not alone?
When I woke this morning I heard a faint buzzing or ringing tone. It sounded to me as though Read the rest of this entry »
Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 3 of Series)
Brain injury, intelligence, rigidity, moving
She is intelligent and has developed many ways to compensate by using the computer. Her physical activity is limited, but others may perceive it as “laziness” or “spoiled”. Honestly, sometimes I do to! She may be spoiled with love and compassion, but she needs structure.
Structure right now is difficult as we’ve been moving for the past year. Nothing happens fast with brain injury, especially when you are the caregiver, spouse, mother, professional and survivor. Besides packing up, selling a home, changing to excellent healthcare professionals, looking for housing for our daughter, seeking communities to help her remain independent, and not shatter her existence … it’s a fragile state of affairs.
Through this process, I’m finding talents and abilities I’ve never explored. I’ve created an immense sense of design since my treatment with a vastly improved endurance and physical strength. I’m blessed! Miracles do happen, and they have happened given the proper medical treatment!
Our disorganization creates havoc in someone who doesn’t have flexibility. She’s always been rigid, and it just doesn’t change for her regardless of all the attempts we have made. I’ve found by my personal injury that flexibility creates instability in the minds of brain injury. I know … I’m there! I still have so much more flexibility than her. Of course again, I knew flexibility for 38 years! You don’t know what rigid is, until you live with it!
Is it rigidity or structure? Think about this. Does rigidity occur as a result of cerebral palsy? Is structure so strong because that is the level that functioning occurs that it overlaps into rigid behaviors? When we have a change in plans we never tell her ahead of time, because we simply can’t. Every time it will lead to catastrophic reactions, and you learn to avoid whatever you can.
Computers are part of her success and winning ways
Through the computer she finds ways to “win” small things and delights receiving packages daily. Winning is fun and it promotes a level of accomplishment. It may not be what others think rewarding, but for her it is! Life is different for everyone. Why can’t we accept people for who they are, instead of who we think they should be? This makes it even more difficult for parents during every phase of life. The problem doesn’t change, so we need to change our attitudes.
She takes criticism from others even as an adult. She becomes involved in problems as though they were all hers. She cannot discriminate from her problems and others. Her level of anxiety is out-of-reach partly owing to genetics that my husband owns, partly life events that happens, mostly brain dysfunction and finally people who lack understanding. I just can’t imagine my brain going “on the fritz” like that.
How do you handle situations like this?
Before this at an earlier hospitalization, she needed help turning on the shower faucets. Simple things that others take for granted. Common sense does not happen. Training the brain is very different from a later injury to the brain.
These simple things have always been a problem and are ongoing. Problem solving does not happen for whatever reason the brain does not make that connection. Most of us take these things for granted. Here are just a couple simple things that the brain cannot problem solve are ongoing throughout life: lacing up shoes (tying shoes is okay), buttoning clothing if different from buttons on a shirt, turning on faucets … a changed environment causing chaos and everything is unfamiliar.
We don’t know why the brain doesn’t learn and retain these things, but we know she is intelligent and compensates in other ways. She learned as a teen that nutrition was vital to her best health. She knows that prepared food is not healthy and she eats nearly all organic foods and always has. She knows what she can control, she will. Nutrition is one of these things.
Believe me, abusive parents don’t take their children to hospitals for treatment. If they do, they have instilled such fear that repercussions are severe and children will not speak up.
Parents with higher tolerances
Many great parents don’t take their children to healthcare facilities or seek professional help simply because their perception of illness or injury is different or their tolerance is much higher. Healthcare does not tolerate or understand this.
Structure and routine for children & adults with brain injury
She needs ongoing routine. Sometimes others need to structure her life. Others are not trying to control her, but control the things they need to help her function at her highest level of functioning. I’m sharing this because many parents are enduring these very same issues and others are not understanding and helpful.
Apply for services while they are young even if you don’t use them
In our case she was not diagnosed early, but if you have a child that qualifies for services … apply for them. This will make it easier as time goes by, and the need exists. As a parent you will then have resource personnel available to help work through different things throughout life.
Our daughter was entitled to continuing education after high school. The catch here was: she couldn’t graduate and receive her diploma like her peers. She perceived this as “failure” and nothing could change her mind. Because she received her diploma she did not qualify for vocational education. I hope our system has changed since then, but most 17 and 18 year old teens want to remain with their peers. Who doesn’t want to graduate or receive their diplomas when they earned them?
Adults with special needs will be the first cut in employment when downsizing or at least they will use something as an excuse. The ADA laws protect somewhat, but there are always loopholes. This is also common with ADD and ADHD. No one understands it, no one wants to take the time, no one wants to help others … it’s just hurry, hurry, hurry. There are too many things that aren’t cost-effective. Taking time is never cost-effective when it relates to optimal level of functioning, but I’m here to say it is ALWAYS cost-effective. What price would you put on your health or your life?
If children are given special attention for all special needs, we’d have 100% productive adults! Fight for the children’s rights, they are entitled to life without labels, without discrimination, and with love and support.
- You don’t have to be perfect, you just have to be there… (momentformom.wordpress.com)
Simple tips for brain and spinal cord injury, illness, injury, aging, children, adults, everyone … Questions to ask your healthcare professionals
When you come across health issues there are a number of questions you and your advocate need to ask. It’s difficult to know what questions to ask when your world is turned upside down and you are not familiar with healthcare systems. Either the patient or the advocate, or both should ask these questions.
The best outcome to all health issues is dependent on the educated patients and advocates. Asking the following questions will help you take control, eliminate some stress and struggles with healthcare and focus on ones optimal level of functioning. This is a comprehensive but not all inclusive list of questions to ask your healthcare provider. Read the rest of this entry »
I reached for hair spray to spritz a little that maintains some style and eliminates the static hair. Oh, the hair seemed Read the rest of this entry »
Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 2 of Series)
Healthcare based on education, experience (personal or professional?), perception
A couple examples of how healthcare professionals have responded are quite ignorant. They should be educated, but accusations with children are common and blame parents rather than proper diagnosis and treatment. These accusations follow forever.
Many children die because they are not properly treated medically. Medical documentation whether accurate or not is passed on from provider to provider. You cannot change false accusations. The most you can hope for is an honest healthcare professional and there are some! It’s hard finding one who thinks independently and does not fear repercussions.
When she would fall and became injured we took her to the hospital. Why wouldn’t we?
When she couldn’t crawl or walk we were asked “do you lock her in a room?” That was the last time we saw that Pediatrician! When she was hospitalized for seizures we were by her side most of the time. That’s what most parents would do.
That was also perceived as abusive. There is no even ground. You are damned if you do, and damned if you don’t. This is a biased system. This is also happening because healthcare professional simply don’t understand brain injury and they assume other things instead.
Education regarding brain injury should be extensive and prominent in all aspects of healthcare. It’s an injury many will sustain in their lifetime. Many will not have permanent sequelae, but if it happens they can compensate if they receive the proper help.
Once, we arrived at the hospital she was walking naked down the halls. She needed help with preparation to shower as this was a changed environment. She was a teen and no one understood “brain injury”, because if they did, this would not have happened. This type of thing could be interpreted as sexual abuse, but healthcare professionals need to look closer at the issues at hand.
From her parents eyes: Because she needed someone to assist her with showers doesn’t imply anything, except her inability to problem solve. Problem solving happens daily. Turning on faucets that are routine is not a problem, as learning has taken hold in the processing center of the brain. Breaking routine and learning how to turn on different faucets and think ahead to take clothing and towels are complex thoughts then we might believe. Every task in a day, takes considerate amount of thought. Confusion and disorientation is common when daily routine is disrupted.
We called our family physician and took her out AMA (Against Medical Advice). This is not abuse. This is brain injury. These infants, toddlers, children and adults need help when the environment changes. This is a dangerous situation that hospital staff are not prepared to understand and help in a much needed way. In this case, her processing system is broke and has never repaired.
What’s really broken is a system that fails to understand. She was in danger being exposed to others without privacy, without assistance, when it was needed. That’s where you expect help … but it’s not always there. The brain is not processing properly and others NEED to understand.
The broken processor
What do we do if the processor on our computers are broke? We throw them out and get new ones! Things are disposable, people are not! We continue to push and improve life, and correct all the things we can. For humans, the broken processors that have billions of neurons are correctable … somewhat. We just don’t know how much or when? We just deal with it. We live with it. We embrace it. We are who we are, and change all that we can.
This reminds me of the conversation after a school psychological evaluation for her at the age of 5. “She does not process information and I’ve never seen this before.” I did not know what that meant, but whatever it did we lived with and found ways to compensate.
He also stated “Her brain is like a tape recorder. She repeats what she hears. It’s not her own thoughts.” This has improved over the years and living independently promotes her optimal level of functioning where thoughts need to develop freely.
Otherwise, the brain focuses on simple things like most toddlers or young children focus. It’s difficult when one mimics your behaviors and thoughts. It’s the processor that’s broken. Albeit, difficult to differentiate from other genetic traits from which no one has control over. It’s still very hard when others say “she acts like a two-year old”. Once a parent, always a parent and you will always be sensitive to others thoughts and feelings.
A parent never wants their children to be ridiculed regardless of who or what they have become. Our daughter has become a very sensitive, intelligent, compassionate, loving, and caring person in her own right. We are proud of who she is. She is and she will continue to be … a heartwarming, hugging, heavenly, healthy, and happy person for she is making the most of her life and living by experience. She is not defined by things or status, but by her internal existence.
I feel as though the brain has developed far beyond the predicted and assumed “14 years of age”. People with cerebral palsy are intelligent. They learn strategies that work for them. She is the mother to a one-year-old miniature long-haired dachshund “Belle”. She loves her puppy and takes great care with her. The love is unconditional, something that is hard to find in a world when it seems so upside down.
- Boy’s stem cells successfully treat cerebral palsy (indiavision.com)
- Boy is the first to have cerebral palsy ‘successfully treated’ using stem cells, taking him from a vegetative state to walking and talking (dailymail.co.uk)
Life seems so financially driven. Everything is about profit. What happens if you are concerned about another and want to check on them?
Being concerned about another’s safety and well being it was vital that someone do a welfare check. One made a report to make sure they were safe. They were informed of my concern and they picked up the report.
As they read it they noted that I requested a “welfare check”. Being that this person was a concrete thinker he assumed a “welfare check” meant something far from safety and concern.
A “check” meant money. His psychologist asked him to explain what they thought a “welfare check” was. His interpretation was a check of “X” number of dollars.
When that person saw their psychologist they stated “they are after my money”. They sent someone to do a “welfare check”. The psychologist informed the person that a “welfare check” was to make sure they were safe and it had nothing to do with “finances or money”.
I can see how “check” could have a double meaning. Sometimes it’s hard for others to believe someone is caring enough to check on safety and well-being. Life really isn’t all about money.
He learned a “welfare check” is a good thing, and others do care. Every time he writes a check he thinks of the “welfare check” that had no monetary value. He wonders if the people who do “welfare checks” also write “checks” to pay his bills? He believes that would also be a form of “welfare check”, as it takes alot of stress off a person! He has a point!
Have you tried to help someone and they totally misinterpreted your good faith?
- What laughter can do for you (reflectionswithrhonda.com)
- Laughter perception networks in brain different for mocking, joyful or ticklish laughter (medicalxpress.com)
- Laughter … great article i found (jenniferkswp.wordpress.com)
- Laughter (themotherofnine9.wordpress.com)
- Every physician will admit that laughter is the best medicine for this earth. Laughter yields magical brings about aiding faster cure and in keeping people in good health. There are infinite nutrients that funny jokes is capable of. In an unfamiliar situa (sgblogging.wordpress.com)
- Therapeutic Laughter: Why? What? Who? and How? (laughterlawyerusa.wordpress.com)
- Laugh Yourself Spiritual (mistytolle.wordpress.com)
- Laughter (myeverydaypsychology.com)
Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 1 of Series)
Routine works best with brain injury. Most survivors place things in the same place all the time. Anything out of order, disrupts many aspects of life. Disruption affects everyone in the family when it creates loss-of-control. Disorganization creates chaos. This causes the brain to become cluttered and unable to sort through simple things. Some things are less bothersome than others. Every injury and brain dysfunction are different. Most are correctable issues.
I really never understood this until my injury. Throughout the years after my daughter’s birth with mild cerebral palsy and seizures our home needed to be organized beyond the routine organization. One thing misplaced would put her into crisis mode.
This organization and routine was already in place for many years when my injury occurred, making things much easier to adapt to in my life. I guess one might say if you were to be prepared like the Girl Scout slogan “Be prepared” I was prepared more than most people when brain injury happens. I just never thought it would happen. After all, I’ve had many injuries before and I recovered. Why would I ever think I wouldn’t recover?
Parenting a child with cerebral palsy … brain injury
I would have given anything to have my daughter have the experiences in life I had. Here I hope to highlight a few things being a parent of a child with “mild” brain injury, seizures, and cerebral palsy. A brain injury at birth is different from a traumatic brain injury later in life. A tribute to the years from 1973 and beyond!
Like other parents, we were and continue to proud of all her accomplishments. She has never been a disappointment as our child … with those few “normal” exceptions of parental frustrations of course!
She never had the “before” and “after” injury comparisons except the injuries she endured from severe falls because of motor coordination or seizures all related to birth injury. a parent, these injuries were questioned and “abuse” was assumed but not actually accused by some, but totally without merit … until the proper diagnosis.
Proper diagnosis took years, because of medical errors and poor judgement calls to withhold information from patients and families. This has since changed in the world renowned healthcare facilities nearby. They are now more apt to admit mistakes, and come forth with helping families. This is a significant positive change for healthcare and hopefully fewer families will be in turmoil over healthcare issues. Everyone makes mistakes, but it’s what isn’t revealed that is hurtful.
I would encourage anyone having difficulty with children falling frequently, behavioral and emotional problems, fine and motor coordination difficulties, cognitive and memory inconsistencies, and other issues to document them and see a child neurologist.
You will be assumed or accused of things without the proper treatment and diagnosis. It is not normal! It was her normal and others didn’t understand. If they understood her “normal”, her frequent falls and injuries would never have been questioned.
A “normal” for your infant, toddler, child, teen, and adult may be very different than what society considers “normal”. Everyone has a baseline of health, also considered “normal” for only that individual. Make sure you are clear if they are comparing “normals” to most people or that person’s “normal”.
Yes, it’s “normal” for a baby to cry. It can also be abnormal in duration and intensity. Yes, it’s “normal” to fall. Everyone falls. It’s not “normal” to fall several times a day, a week, a month, or even a year. Yes, it is “normal” to forget. It is not “normal” to forget several times an hour. It’s about perceptions. Most of us “blow it off” if we are told it is “normal”. You are your own best advocate. If you know it is not “normal”, pursue the problem until you get answers. Do your research.
Distorted perceptions or “normal”
As our teenager struggled to find a “normal” in her life, her perceptions were distorted. She knew she was different from most children. It was obvious in her educational years. She was never treated any differently and she was expected to meet all the expectations of all children.
Her teachers were excellent in school. She had specialized tutoring. She was a special child with needs different than others in her classrooms. Her positive demeanor, her smile, her sense of well-being, her confidence, overshadowed her struggles. What more could a parent ask?
She owns her own perceptions and we accept that. One summer day the police arrived at our door and we had no idea why. They asked if they could speak with our daughter who was washing the kitchen floor. We let them in as requested.
When perceptual experiences differ from “norm”, it makes for a confusing world. Most teens would not find washing the kitchen floor abusive. Obviously, she felt “washing the kitchen floor” as an abusive punishment. As parents, we thought it was a chore, but that was our perception.
While talking to an acquaintance she relayed this message to another teen who then called the authorities. These types of situations among teens are common. Two teens with different perceptual abilities. Who perceived it to be abusive doesn’t matter. It just shows how everyone has different thoughts and abilities and one responds to their perception. Certainly, we all know teens think very differently than adults and is a difficult time in their lives.
This ended as a positive experience from the authorities. They talked with her and told her “they wish they had a mother to wash her kitchen floor”. I think this conversation with an outsider of authority figure was impressive on her concrete thought processes.
Nervous system sensitivity
Screaming and crying that occurs as an infant, toddler, and child can become unbearable for families. I can’t even imagine the signals her little brain was providing her body. When the nervous system is disrupted there is not “normal” body functioning, and how can we understand what an infant or toddler endures when they don’t know anything else but a “chaotic” nervous system?
They perceive pain with a high sensitivity. Far different from one who has a high tolerance for pain. This was one thing I found difficult to understand until I believed that pain is “whatever the person says it is and no one should question another’s perceptual experiences”.
- Cerebral palsy symptoms – An overview (therapiesforautism.wordpress.com)
- Scientists warn against risking cerebral palsy stem cell treatment overseas (abc.net.au)
- Boy’s Stem Cells Successfully Treat Cerebral Palsy, Awaken Him From Vegetative State (medicaldaily.com)
- Know about cerebral palsy and Down syndrome (therapiesforautism.wordpress.com)
- First successful treatment of pediatric cerebral palsy with autologous cord blood (eurekalert.org)
Do not let your physical and mental challenges stop you from traveling when you want or need to. You can get preferential seating by Read the rest of this entry »
Do you have someone who seems to be feeding your dog table scraps against your wishes? Is your dog hanging around a certain person in the house on a regular basis? Read the rest of this entry »
We’ve cancelled our plans for the week to gather with sibling in OKC, OK. They survived May 3, 1999 and we believe they are safe. Maybe they are homeless again, but hopefully safe! We will do the Memorial Day Veteran’s parade another year.
Plans can unravel in a split second when catastrophe happens. There are no plans more important than life, health and survival. Our new plan will be the same as it was May 3, 1999 … sending blankets, sheets, and medical supplies. Sometimes things happen on a personal level. This is one of those times! Read the rest of this entry »
I’ve received this request for reblog and we need to be pro-active to find our missing children. Click on the link above, be alert regardless of where you live.
Thank you for taking the time to read.
Police were at the door of this home. There was “no answer”, but that does not mean suspicion. It’s a right and as much as we know that the police were knocking at the door where these three young women were being held captive they were not there because they knew the women were there.
There will always be those “what if” thoughts. So, what if the police shouted out “Police” we could speculate the women may have started pounding on the walls. On the other hand, they could also believe they were being “tested” and not respond at all.
They were at this house because of an unrelated incident that happened during the employment as a school bus driver. Yes, it was a missed opportunity but it’s unlikely they would have detected anything unusual. If the suspect’s own brothers did not know anything he obviously figured out how to cover every thing up, until he made this one mistake a week ago.
Teen & early adulthood vulnerable
We’ve all been through those teen years and I’m fairly certain that everyone has experienced at least one situation in their years that could have ended very differently if another took advantage of vulnerable days.
This sparked another memory with my childhood best friend. If we were ever missing I’m sure others would have said, “They would never go anywhere with a stranger”!
I’d love for others to take a moment to think back to those vulnerable years and share one experience that could have had a very different outcome if another took advantage of the situation. These young women need to know that they did nothing wrong. The person that did wrong was the criminal!
An ordinary teen another example
In my example of one situation it highlights how easily anyone could fall prey to criminal behaviors because of perceived trusting relationships. At the age of 17 and 16 respectively, myself and my childhood best friend put ourselves in an unknowingly vulnerable situation. Was it ignorance? Naive? Trusting? It likely was a combination of naïvety, trust, and ignorance.
We never even thought that anything could happen. It simply never crossed our minds. Now, that isn’t to say things didn’t happen years ago. Many things did, and we both had many areas of violence in our life. Media attention was not what it is today.
We went to see the movie “Love Story” at Parmatown mall. We took a bus home, but it was the wrong bus line. Instead of getting home we were lost in a dark area we did not know. Neither one of us would have been likely to take a ride from a stranger, or from anyone we knew. We did just what no one else would believe.
The bus driver offered to drive us to our home. We took that ride and fortunately we arrived safely! This also points out that many people are trustworthy individuals, and simply trying to help.
Had anything gone array everyone would have said, “They’d never go anywhere voluntarily”, and you never know what you would do unless you are in that situation. One of these teens knew the perpetrator, it was her best friend’s father. I’m pretty certain most of us have taken rides from people related to our best friend. That’s why we call them our “best friend”, we trust them and their relationships…until they no longer are trustworthy or we take different paths in life.
To sum up this sad situation with these lovely young women and a child. I believe in them, and know they will become happy adults and child. They were assessed at the hospital where my nursing career as I once knew it, ended. It’s the best place to be with a complicated situation. Besides, this decade of torture for these young women happened less then one mile of MetroHealth Systems.
The neighbors had no reason to be suspicious. If they were, they would have reported it. Everyone has met strange people, but strange doesn’t equal criminal! The suspects deception was incredible. He deceived many adults, including his own siblings so it’s no wonder he was able to deceive inexperienced teens.
Many people don’t know what is happening within their own home, their own family, so to expect neighbors to know what is happening is outrageous. Neighbors are not to blame. Even the most astute neighbor would not be able to detect this level of deception. The emotional trauma these neighbors are feeling must be insurmountable. Neighbors reacted when they had the opportunity and they rescued the women when they heard the calls for help.
The slogan “If you see something, say something.” This has very literal meaning. If you only suspect something, it’s unlikely police would investigate. They usually never do anything unless something drastic happens. Hence, this is a primary reason for so many deaths from domestic violence.
Police respond … a fragmented system
Police officers respond to things witnessed, but in a large city prioritizing calls may put your concern at the bottom of the list. Even when they do respond it may be minimized. A call here and there of concern may not put the entire picture together.
If different officers respond, it’s less likely anyone will put the pieces of the puzzle together. (Similar to a fragmented health care system issues when one has a complex case and specialists are involved or one seeks another opinion) This is another fragmented system where no one links the problems together until disaster, terrorism, violence becomes insurmountable.
It is time for this entire community to begin healing. Their healing will help these young women, child, families and friends to recover. Pray for the three young women and child found alive in Cleveland, Ohio. May all their emotional needs be supported.
What type of situation have you been in that no one else would suspect?
If anyone is interested in donations to these young women there is only one legal fund at this time. Cleveland Courage Fund has been set up to help. Click on the link below:
- Video of the Day – Give ‘The Key to the City’ to resident Charles Ramsey for rescuing of three young women kidnapped in Cleveland, OH (reachoutjobsearch.com)
- Cleveland Women Held Captive Will Suffer Long-Term Damage: Sources (huffingtonpost.com)
- Heroes, heartbreak and the human spirit in Cleveland, Ohio (dailykos.com)
- Cleveland Kidnapping Victims Endured Decade Of Isolation, Rape, Beatings (huffingtonpost.com)
- URGENT – Ohio Cleveland Abductions (wdsu.com)
- $480,000 raised for kidnapping victims (newsnet5.com)
- Fund Established for Knight, Berry, DeJesus (fox8.com)
Communication is unpredictable, just as other symptoms of TBI. Some symptoms are invisible and others are incomprehensible! As I met up with someone while working out in the pool I asked “How are you doing today?” her facial expressions of shock Read the rest of this entry »