Making a Difference

May 15, 2014

Feeling out of touch with your community or the world at large? Happens all too frequently to people who have retired or can no longer work due to disability. Many require ways to stay motivated, to keep engaged with the community and maintain a sense of worth.

Are you looking to create new challenges and set new goals? Volunteerism is an option. It allows you to give back, to contribute to those in need, and feel better about yourself.

Do you have:

  • specific knowledge and life skills? – become a docent, mentor or teacher
  • tech experience? – offer to create and/or maintain a blog or website
  • organizational abilities? – volunteer as a bookkeeper or librarian
  • leadership qualities? – become a scout troop leader
  • D-I-Y savvy? – work for Habitat for Humanity or similar organization
  • a vehicle and able to drive?deliver meals to homebound persons
  • communication skills? – populate phone lines for charities
  • lack mobility? – help organize from home

Locating an opportunity to volunteer in you area may seem daunting. If so, there are organizations that can pair you up with a group that can best use your abilities.

Volunteer Match – provides links between people and causes
http://www.volunteermatch.org/

Volunteer Guide – make a difference from anywhere at anytime
http://www.volunteerguide.org/

Volunteer.gov – America’s natural and cultural resources volunteer portal
http://www.volunteer.gov/

American Red Cross – volunteer in your local community
http://www.redcross.org/support/volunteer

United Way – we envision a world where all individuals and families achieve their human potential through education, income stability and healthy lives
http://www.unitedway.org/take-action/volunteer/

Volunteering – doing so will let you help others and make a difference in the world, and in your life as well.

We’re Here for Each Other

March 28, 2014

Recovery from any injury takes time. Time spent in reflection. Could I have done anything to make the outcome of my trauma any different, or to prevent it? What will become of me, and my relationships? How will I cope with my new reality? So many unanswered questions. Life is complicated enough without additional baggage.

Specialists in psychology call it grieving. Perfectly natural emotion. Grief expressed at the loss of part of you that cannot be gotten back. Everyone grieves at some point in time. How we react to it can make all the difference in the world. Most of us need some help in dealing successfully with grief.

Professional counseling is recommended to many who survived physical or emotional trauma. Most are helped by this, though some are not. They feel lost and alone. Abandoned. Trivialized.

Many require medication to overcome temporary mental issues such as depression, a common problem faced by survivors of trauma. Hopefully with additional counseling they can be weaned off anti-depressants over time. Some find solace among those who share common problems, as in support groups, meeting either in-person or online.

Support groups provide positive conversation in mutual life experience – understanding, sympathy, empathy, encouragement, information, advice, humor, and an occasional admonishment when you lose focus.

Bottom line: you don’t have to be alone, if you really don’t want to. Someone will be there for you. A family member, friend, co-worker, counselor, clergyperson, or fellow survivor will help sort out your frustrations and get on with your life.

No man is an island. We’re here for each other.

Moron

March 26, 2014

Yep, that was me. Moron.

I knew full well I had a family history of hypertension (high blood pressure), diabetes, and risk of stroke, yet I did nothing to control my extremely high BP. At the time of my stroke it was 254/170. If not moronic, then selfish, as my family was left to deal with my poor choices.

Fortunately (or unfortunately, as should be the case), I am not alone. The number of obese people in the U.S. (including children) is alarming. High blood pressure is rampant and uncontrolled. The rate of onset type 2 diabetes and associated risk for heart attack and stroke are higher than ever. The internet revolution has made more people sedentary. Good company? I don’t think so.

If only. If only I had known better. If only I had known the risk of too much sugar. Or carbs. Or too much of anything. And the consequences of too little exercise.

Excuses, I know. I hid behind them too. That’s what being human is all about. We all make mistakes. But do we learn from them? Apparently not, as the cost of health maintenance continues to spiral out of control.

Solution? It begins with education. And regular visits to the doctor. It also helps to have a physician who is well-versed in nutrition, and is willing to take a holistic approach to the practice of medicine and prescribe to the patient exercise and a healthy diet, along with necessary medications. At your yearly physical exam, request extended blood tests. If your doctor questions this, find another doctor.

In the meantime, educate YOURSELF. Keep up with the latest information. Read labels. Check for side-effects of medications. Understand how OTC medicines and vitamins interact with what you eat. Be proactive; be conscious of your body. Be skeptical of anything said or written about food, medication, and exercise. Science and research changes and improves daily. Items that were once thought bad for you are no longer, and vice versa. Doctors used to recommend cigarette smoking to “nervous” patients. My, how things change! Knowledge is power.

Despite significant advances, Medicine still has a long way to go in knowing the workings of body and mind, and proper treatment of malfunctions. My advice: stay current, as many in the health profession do not. Hearsay and legends still exist and are propagated without control, thanks to social media.

Just because I was a moron in my past does not mean I have to continue down that path to self-destruction. I learned the hard way what bad habits can do to me and, unfortunately, to my family. Now, through this blog and elsewhere, I try to make my damaged life an example of how not to live your life, if you care anything about yourself and your loved ones.

Life is what you make of it. Live and learn.

Grain Brain

March 20, 2014

What exactly is gluten, and why should we avoid it in our diet? I was wondering the same thing, and began reading Grain Brain by Dr. David Perlmutter to find answers. One can be allergic to gluten and not know it. Supposedly it causes inflammation of the brain. Not good for stroke survivors or anyone else.

Latest and greatest health craze? A farce? I thought the same thing. Then I read the book. Got me thinking. Not a fad or trend, more of an awakening, an adjustment. Celiac disease is real, although it is the most dire of gluten sensitivity. The book is full of success stories, historical references and clinically-affirmed findings, and makes a direct link between gluten and brain inflammation that can lead to dementia and other mental disorders, including epilepsy, Parkinson’s and ALS. The author is both a neurologist and certified dietician, and maintains a website with information and gluten-free recipes.

What makes this an issue now? Hasn’t man been consuming grain since his days as hunter-gatherer? True, but things are different now. Genetically, humans are still the same but no longer have to work hard to find food. Modern grain processing and genetic modification have increased the risk of gluten sensitivity, and this book lists the health issues and consequences of ingesting such foods. There are many that contain gluten; some surprised even me. Even cosmetics and shampoos contain gluten. And science is only now beginning to fully understand the significance of how certain dietary choices impact our health, and this information rarely is included in conversation between doctor and patient. A simple test for gluten sensitivity would go a long way to solve a lot of our ailments and render many drugs irrelevant.

The book lists many options for going gluten-free, and the immediate and long-term benefits of doing so. Simply removing gluten from your diet can improve your brain function and prevent or postpone onset dementia. It can alleviate dependence on medication for those who have type 2 diabetes. You will experience less fatigue and fewer headaches, and become less dependent on medication for illnesses such as depression, ADHD and bipolar disorder. All simply by making a change in diet. And best of all, it’s free.

A high fat, low carb diet. Something considered unhealthy just a few years ago. But times (and scientific research) change. I have nothing to lose but my brain fog and morning sluggishness in trying this for myself. I recommend you do the same.

Victimless?

March 11, 2014

As a stroke survivor, I have come to realize that there are many other survivors who had no control over the factors that caused their strokes. Yet, they feel guilty and carry shame and have troubled relationships with family and friends. That does not apply to me.

I knew of my family medical history – our tendency toward high blood pressure and susceptibility to type 2 diabetes and stroke. Yet I ignored this and avoided going to the doctor for help with my elevated BP, which most likely caused my stroke. Which makes my family victims.

I really have no way to make it up to them, other than to apologize for my behavior and do my best to prevent a repeat of my poor choices. They have gone through so much because of this, altered their lives because of me.

I fully accept the blame. My fault entirely. Fortunately for me, I have been forgiven. Many lessons were learned, though, not to be forgotten.

There are those survivors who have suffered needless guilt over their strokes and resulting lifestyle changes, who have not been forgiven for events not within their power to control. They have been neglected or abandoned by their families, gone through untimely divorces, and have to seek counseling for depression and related psychological problems. They may harbor anger and resentment, and consider themselves failures. They have my deepest sympathy.

My take on this – there really are no victimless strokes. Some may perceive themselves as “victims” while others truly are. All I can say is to accept responsibility for poor choices, apologize to those impacted by those choices, and practice Christian forgiveness, whether or not you are a follower of Christ.

But don’t forget the journey, or the ultimate goal.

It’s Me, I’m Still in Here…

February 21, 2014

Aphasia is a disorder of communication that impairs a person’s ability to use and comprehend language. Aphasia is a symptom of brain damage and affects approximately one million Americans. Stroke is the leading cause of aphasia. One in four stroke survivors experience some form of language impairment after a stroke. Speech is primarily controlled by the Broca’s and Wernicke’s regions of the brain.

Strokes that damage the frontal and parietal lobes in the right hemisphere of the brain can cause a person to have difficulty expressing and processing language.

Need help understanding aphasia? Watch the  “Heart to Heart” YouTube video, highly recommended.

(the following was copied from a helpful speech therapy site)

Is Comprehension a challenge?

Some people with aphasia find comprehension difficult.
If this is the case for you, you are not alone!

* You may not understand what other people say.
* It may feel as though everyone is speaking in a different language.
* Some people find it harder if longer sentences and difficult words are used. They may not understand some words or forget the start of the sentence.
* Background noise will make it very difficult.
* It will be more difficult if different people are talking in a group.
* Too much information may be confusing. This can be the same for written or spoken information.
* You may be able to write but unable to read it back.

Can you relate to any of these challenges?

I can. I survived an ischemic stroke on the right side of my brain, and I have aphasia – difficulty speaking. But it’s me, I’m still in here…

Do you require information on speech therapy? Find it here.

Soapbox Time

January 31, 2014

After reading complaints from fellow stroke survivors, I thought I would write this as a reaction to thoughtless and insensitive comments from so-called caring persons. I have not experienced any of these myself, but wonder what goes on in the mind of those who make such hurtful statements.

experience is the best (or worst) teacher

Brain damage – something I wouldn’t wish on my worst enemy (if I had one). Live and learn.
Recovery can be long, difficult, painful and expensive, and can ruin relationships.

walk a mile in my shoes

Some stroke survivors are unable to walk at all. Before you judge me, try living my life for one day.

judge not, lest ye be judged

I was just as clueless and ignorant before my stroke; thought they happen only to the old and infirm. I lived, and learned.

random comments (ignorance is bliss)

“But, you don’t look sick…”
Looks can be deceiving.

“Why, you’ll recover and be back to your old self in no time!”
I wish. Not that simple.

“I’m jealous; I wish I could sit at home all day and do nothing.”
Ugh. No comment. Try experiencing Locked-in Syndrome.

“You may never fully recover.”
Seriously? Just watch me. You may learn a thing or two about adaptability, something even “normal” people resort to when necessary.

“You are always cracking jokes. How can you possibly be sick?”
Humor is therapy. Laugh, and the world laughs with you. Cry, and you cry alone. Staying positive helps me heal more quickly.

“You make unreasonable statements at the most inopportune times. Your reaction is very inappropriate.”
Emotional lability: no control, no filters. Reclaimed after intense therapy, medication and healing over time, or not at all. Sensory overload can lead to emotional outbursts beyond my control.

“I don’t understand what you’re trying to say.”
Aphasia: loss of communication skills. Another side-effect of brain damage. Can be temporary or permanent. Frustrating for me as well.

“Are you even listening to me? You seem to be staring off into space.”
Another issue with brain damage – hearing and sight also may be affected. I am listening, but process things differently now. I may take longer to understand what was said, and must choose my words carefully in response. I am easily distracted; have difficulty filtering out other conversations or sounds.

“You don’t love me any more.”
Brain damage can lead to changes in mood. Trauma. Loss of personality. Confusion. Frustration. Discouragement. Failure. All contributing to Depression. Counseling and medication can reverse this condition. Yes, I still love you, though I am not capable of expressing that love like I once was.

“You stroke survivors are the reason health insurance is so expensive.”
Like, I had a choice in this. Do you smoke, drink alcohol or take recreational drugs? Those are choices.

“How could you do this to me?” (from spouse, child, family, friend, employer)
The stroke was beyond my control. Recovery is my top priority; this is my new reality. Sorry if that makes me appear selfish. I still care for you.

“Our company is not ADA compliant; you can’t work or shop here.”
Legal actions are costly, time-consuming and often are not successful. Bummer.

“We all have crosses to bear.”
True enough. Life is not without challenges for all of humanity.

Off my soapbox now, but this needed to be shared. Apologies for any hurt feelings.

Adapt or Die

January 9, 2014

The brain is a marvelous thing. It never takes a day off. It allows us to do things without thinking, so to speak. Built-in, automatic, repetitive actions – like walking or talking. Things that may be lost because of a stroke’s damage to the brain.

Because of neuroplasticity, the brain heals itself eventually, and some things lost due to stroke damage may be regained over time, but not without significant challenges.

During recovery, stroke survivors must do things differently, due to weakness or loss of movement in a limb (or loss of memory of how to accomplish such a goal). Could be a simple thing, such as opening a door or flipping a light switch, made difficult or impossible after stroke damage. A very frustrating situation for us. So we adapt out of necessity.

Some adaptations come easily, others must be learned with the assistance of therapists and caregivers. Special tools must be used to do otherwise simple tasks, like opening a jar or carrying an object. Or writing: losing the use of one arm/hand may require the other to write, something not easily accomplished. This may sound strange to most folks – how can a person fail to do such ordinary things, having done them countless times before? Because we lost that ability when we had the stroke that damaged our brains, and must adapt accordingly.

We employ devices such as wheelchairs, quad canes, joint braces, AFOs or subluxation slings to assist us in movements. Handrails help us climb stairs and use the bathroom. Aids for hearing or vision changes. Notepads for memory issues. Sometimes we must lean on things just to keep our balance. Some survivors don’t have the option to walk. Or talk.

Ingenuity helps. Many survivors come up with clever devices or routines to assist them in accomplishing ordinary tasks. Some specialized items must be purchased, and may be cost prohibitive. Again, adaptation is necessary.

My recommendation to those in need is to find and join a stroke survivor support group. Could be a lifesaver – literally. These groups (both online and in person) offer ideas and resources for everyone, including caregivers, family and friends.

Sometimes it takes me longer to do a simple task. I tire easily, and fatigue may have lasting consequences. A chore that once was accomplished in a couple of hours now may take me a day or two. My personal motto on those occasions is “slow and steady wins the race.” It may take me longer to do something, but I will get it done. Again, adaptation comes in play to deal with weakness in my left side. Necessity is the mother of invention. That is in my nature, to be inventive.

So the title “adapt or die” is not necessarily accurate for most survivors, but could be a life-or-death proposition in certain situations, and may be exacerbated by confusion, frustration and panic attacks (unfortunate side-effects of damaged brains). Cruel, but true.

Bear with us, we are doing the best we can. Please adapt to our ways – a humbly requested show of patience, understanding and kindness – as we strive to recover a sense of “normalcy.”

Lost & Found: What Brain Injury Survivors Want You to Know

January 6, 2014

Barbara J. Webster, Lash & Associates

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

(copied from Brainline.org)
http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

I Get It Now

January 2, 2014

Someone complained the other day about difficulties interacting with relatives. People being afraid of a stroke survivor, not knowing what to do or say, and ultimately avoiding the issue.

I now understand the point of view of those relatives. They fear the unknown, plain and simple. Before my stroke, I knew nothing of the results it would have on the body and mind. Now that I do understand, I want to explain to everyone that I am still here, still the same person, although I may look and behave differently.

Different is the operative word here. The stroke changed me and my ability to communicate effectively.

Thus, I am unable to get across my thoughts and feelings, which frustrates me, causing me to act irrationally sometimes – as a child might. Even healthy adults throw childish tantrums occasionally. It’s different for stroke survivors, however. We do it without realizing it, unintentionally hurting feelings or angering those we care about. We, too, are frustrated and saddened by our inability to control these emotional outbursts.

Many times lately I behave like a child – without knowing, unfortunately. I’m pretty sure this applies to other stroke survivors. Something called emotional lability, one of many unfortunate effects of stroke, changes or inhibits our ability to process emotions and social cues. We may react to things that “normal” persons would not, often in unusual and disturbing ways, which would cause distress to those with whom we interact. And by the time we realize it, the damage has been done, and the relationship sours.

All we ask is your patience and understanding. We will improve, just give us time. We are still the same inside, only having difficulty understanding and communicating our feelings.

I get it now.


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