Archive for category Caregivers

[BLOG POST] Safety Nets: Travel After Brain Injury

There’s so much out there that beckons—family, friends, ethnic textiles, and, more recently, the writers’ world. I am compelled to answer the call—all the calls! I reject the invalid role that my bloody brain repeatedly tries to thrust on me.

In order to live a full life, I’ve had to learn to set up safety nets wherever I go.

Before the brain injury, I had no difficulty living a fast-paced life. I combined a full-time job with a variety of extra curricular activities including time-consuming hobbies, such as weaving and dragon boating. Travel was an integral part of my life, with trips to conferences, workshops, and with family and friends at home and abroad.

Now, in the wake of my injury, I can’t do nearly as much. Tasks that in my past life were a matter of course, such as grocery shopping and driving, deplete my resources. Travel now drains me, especially when it involves flying. Contending with the high volumes of sensory input streaming in at airports and in flight wears me out.

I’ve had to learn to apply coping mechanisms and compensation techniques to function with my damaged brain. Though pacing myself to prevent debilitating fatigue would seem easy to apply, for me, it is one of the hardest adjustments I’ve had to implement. When I travel, it’s especially difficult.

When I’m outside my home territory, having less control over the agenda hampers any attempts to slow down. Also, I don’t want people to worry. I don’t want to call attention to myself. I don’t want to miss out, and I don’t want to slow others down.

Another obstacle in my way is that future events, including possible sources of trouble, now mean less to me. As far as I’m concerned, much of the future is abstract. It’s as if the wiring between cause and effect, between my notion of past and future, is faulty.

Trips often don’t seem real until I actually land at the destination. As a result, planning and preparations don’t make sense. I usually pack for an upcoming trip at the last moment, and when I finally get to it, I have to force myself to do it. In my mind, there’s no good reason for me to undertake a task that now feels so overwhelming in its complexity. Since the injury, poor organizational skills and the difficulties in managing high volumes of data—figuring out what I need to pack, how to arrange it in my luggage, what bags should I take—are daunting.

In time, as I healed, I became better able to manage my bloody brain. I learned to set myself a list of unbreakable rules that help me prepare for trips. A side effect of my brain injury, a strong OCD (obsessive-compulsive disorder) streak, has a surprising benefit: I have a list of basics I need to pack that I follow religiously, plus a set way to organize items in my suitcase.

My rules also include arranging for safety nets.

I knew the trip to visit my family in Israel would be grueling. I knew better than to trust my own judgment. If I hoped to convince my bloody brain to cooperate, I needed someone to watch out for me, to keep me out of trouble.

Before the trip to Israel, I spoke to my sister about my anxiety. She understood and empathized—she’s walked in my shoes. She too has cavernous angiomas that have bled. Like me, she is often tempted to outpace herself. But unlike me she is assertive, and when all hell breaks loose with her bloody brain, she knows to take it easy and to rest despite outside pressure. I, on the other hand, have trouble protecting myself, no matter how bad shape I’m in.

During the trip, she shielded me from ambitious plans from well-meaning family and friends who wanted me to participate in activities that would drain my resources. And she also shielded me from myself; I was excited to spend time with my family, not wanting to cause concern, reluctant to disappoint, and too willing to go along with the crowd.

Unfortunately, the safety nets don’t always work. Some of the changes that the bloody brain brought about get in the way. I am more emotionally volatile now, and often, my emotions drive me instead of reason. In addition, my impaired memory and poor grasp of the connection between cause and effect often results in me downplaying potential difficulties.

During my first couple of days in Israel, I didn’t listen to my sister’s advice. I was sure I knew better and that I would be fine. Even after the bloody brain lashed out at me with a crippling headache, I felt that she was being overprotective. I did finally listen to her—not because I fully agreed with her, but because I didn’t want to upset her.

As my brain rewired post-injury, my memory and my ability to make connections improved. As my self-awareness grew and I became more in-tune with myself and the bloody brain, planning ahead was easier.

But even now, more than a decade since the surgeries, when I realize that common sense says, “wait a bit, take a break, don’t do so much,” there is still a niggling little voice inside me telling me that it’s not really necessary. I still overstretch myself, though nowhere near as much as I used to. I’m doing better now, I’ll be fine.

Now, where did I put that safety net?

via Safety Nets: Travel After Brain Injury | Brain Blogger

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[BLOG POST] 5 Things Every TBI Survivor Wants You to Understand

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March is National Brain Injury Awareness Month, and as promised, I am writing a series of blogs to help educate others and bring awareness to traumatic brain injuries (TBI).

1. Our brains no longer work the same. 
We have cognitive deficiencies that don’t make sense, even to us. Some of us struggle to find the right word, while others can’t remember what they ate for breakfast. People who don’t understand, including some close to us, get annoyed with us and think we’re being “flaky” or not paying attention. Which couldn’t be further from the truth, we have to try even harder to pay attention to things because we know we have deficiencies.

Martha Gibbs from Richmond, VA, suffered a TBI in May of 2013 after the car she was a passenger in hit a tree at 50 mph. She sums up her “new brain” with these words:

Almost 2 years post-accident, I still suffer short-term memory loss and language/speech problems. I have learned to write everything down immediately or else it is more than likely that information is gone and cannot be retrieved. My brain sometimes does not allow my mouth to speak the words that I am trying to get out.

2. We suffer a great deal of fatigue.
We may seem “lazy” to those who don’t understand, but the reality is that our brains need a LOT more sleep than normal, healthy brains. We also have crazy sleep patterns, sometimes sleeping only three hours each night (those hours between 1 and 5 a.m. are very lonely when you’re wide awake) and at other times sleeping up to 14 hours each night (these nights are usually after exerting a lot of physical or mental energy).

Every single thing we do, whether physical or mental, takes a toll on our brain. The more we use it, the more it needs to rest. If we go out to a crowded restaurant with a lot of noise and stimulation, we may simply get overloaded and need to go home and rest. Even reading or watching tv causes our brains to fatigue.

Toni P from Alexandria, VA, has sustained multiple TBI’s from three auto accidents, her most recent one being in 2014. She sums up fatigue perfectly:

I love doing things others do, however my body does not appreciate the strain and causes me to ‘pay the price,’ which is something that others don’t see.  I like to describe that my cognitive/physical energy is like a change jar. Everything I do costs a little something out of the jar.  If I keep taking money out of the jar, without depositing anything back into the jar, eventually I run out of energy. I just don’t know when this will happen.  Sometimes it’s from an activity that seemed very simple, but was more work then I intended. For me, like others with TBIs, I’m not always aware of it until after I’ve done too much.

3. We live with fear and anxiety. 
Many of us live in a constant state of fear of hurting ourselves again. For myself personally, I have a fear of falling on the ice, and of hitting my head in general. I know I suffered a really hard blow to my head, and I am not sure exactly how much it can endure if I were to injure it again. I am deeply afraid that if it were to take another blow, I may not recover (ie, death) or I may find myself completely disabled. I am fortunate to have a great understanding of the Law of Attraction and am trying my hardest to change my fears into postive thoughts with the help of a therapist.

Others have a daily struggle of even trying to get out of bed in the morning. They are terrified of what might happen next to them. These are legitimate fears that many TBI survivors live with. For many, it manifests into anxiety. Some have such profound anxiety that they can hardly leave their home.

Jason Donarski-Wichlacz from Duluth, MN, received a TBI in December of 2014 after being kicked in the head by a patient in a behavioral health facility. He speaks of his struggles with anxiety:

I never had anxiety before, but now I have panic attacks everyday. Sometimes about my future and will I get better, will my wife leave me, am I still a good father. Other times it is because matching socks is overwhelming or someone ate the last peanut butter cup.

I startle and jump at almost everything. I can send my wife a text when she is in the room. I just sent the text, I know her phone is going to chime… Still I jump every time it chimes.

Grocery stores are terrifying. All the colors, the stimulation, and words everywhere. I get overwhelmed and can’t remember where anything is or what I came for.

4. We deal with chronic pain.
Many of us sustained multiple injuries in our accidents. Once the broken bones are healed, and the bruises and scars have faded, we still deal with a lot of chronic pain. For myself, I suffered a considerable amount of neck and chest damage. This pain is sometimes so bad that I am not able to get comfortable in bed to fall asleep. Others have constant migraines from hitting their head. For most of us, a change in weather wreaks all sort of havoc on our bodies.

Lynnika Butler, of Eureka, CA, fell on to concrete while having a seizure in 2011, fracturing her skull and resulting in a TBI. She speaks about her chronic migraine headaches (which are all too common for TBI survivors)

I never had migraines until I sustained a head injury. Now I have one, or sometimes a cluster of two or three, every few weeks. They also crop up when I am stressed or sleep deprived. Sometimes medication works like magic, but other times I have to wait out the pain. When the migraine is over, I am usually exhausted and spacey for a day or two.

5. We often feel isolated and alone.
Because of all the issues I stated above, we sometimes have a hard time leaving the house. Recently I attended a get together of friends at a restaurant. There were TVs all over the room, all on different channels. The lights were dim and there was a lot of buzz from all of the talking. I had a very hard time concentrating on what anyone at our table was saying, and the constantly changing lights on the TVs were just too much for me to bear. It was sensory stimulation overload. I lasted about two hours before I had to go home and collapse into bed. My friends don’t see that part. They don’t understand what it’s like. This is what causes many of us to feel so isolated and alone. The “invisible” aspect of what we deal with on a daily basis is a lonely struggle.

Kirsten Selberg from San Francisco, CA, fell while ice skating just over a year ago and sustained a TBI. She speaks to the feelings of depression and isolation so perfectly:

Even though my TBI was a ‘mild’ one, I found myself dealing with a depression that was two-fold. I was not only depressed because of my new mental and physical limitations, but also because many of my symptoms forced me to spend long periods of time self-isolating from the things — like social interactions — that would trigger problems for me. With TBI it is very easy to get mentally and emotionally turned inward, which is a very lonely place to be.

Also, check out my other blogs on the Huffington Post:
“Life With a Traumatic Brain Injury”
“Life With a TBI: March is National Brain Injury Awareness Month”

I invite you to join my TBI Tribe on Facebook if you are a survivor, or loved one of a survivor.

via 5 Things Every TBI Survivor Wants You to Understand | HuffPost

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[WEB SITE] 31 Strategies for Living with Traumatic Brain Injury – BrainLine

by Melissa Johnson, Bringing the Battle Home
31 Strategies for Living with Traumatic Brain Injury
Caregiver blogger, Melissa Johnson, shares 31 tips and strategies she uses to help her husband cope with his TBI in a more effective manner.

1. Use a Mobile Calendar App

I created a calendar for Sean in my iPhone and shared it with him (see brief instructions below or click here). Now I can add his appointments, meetings, and trips on my phone and he is able to access them through the app on his iPhone and iPad. In addition to time and date, I can add the location or notes for the event. The app allows me set alerts which come across both our mobile devices as notifications. I normally set alerts a day in advance and an hour in advance to allow  me time to remind him and avoid last-minute surprise. Using the calendar also helps me track his events that aren’t on my personal schedule (such as VFW meetings). I check the calendar each night and remind Sean of the next day’s schedule. It’s handy because i can manage it for him, see any items he adds himself, and view my own calendar at the same time.

Open the iPhone’s calendar app and click on “Calendars”:

Open the iPhone's calendar app and click on Calendars

Select “Edit” under iCloud Calendars:

Select Edit under iCloud Calendars

Select “Add Calendar” and follow instructions for naming calendar:

Select Add Calendar and follow instructions for naming calendar

Select “Add Person” to share the calendar:

Select Add Person to share the calendar

2. Sign up for Cozi

Visit cozi.com and sign up for their shared online calendar (I use the free version). Cozi offers shared calendars and lists that can be accessed by any family members with login information on their computers or mobile devices. You can opt to text individual mobile devices with appointments and notes automatically. I use Cozi to send Sean text messages each day reminding him to take medications and when to eat meals. I have the texts sent to my phone as well so I can verbally remind him (in case I lose track of time). There is room to add notes to each event, so messages sent can be as detailed as needed.

3. Develop a White Board Schedule

We started with a very detailed daily schedule to help Sean remember the progression of each day’s tasks. It worked well for a time, then reached a point where it overwhelmed him visually and cognitively. We now use a simpler version and combine it with text reminders for medications, meals etc. and verbal reminders.

Develop a White Board Schedule

Develop a White Board Schedule

4. Hold Daily Meetings

Choose a time of day that is structured (not over dinner, while doing homework with the kids, or while distracted with other activities) and is a typically a good time of day for focus. Sean and I chose to have our meetings each morning. This time was set aside to review the day’s activities, discuss needs, and address any military or VA issues or answer questions he had (to avoid fixating on these issues all day long—which had become a huge problem). We recorded a few notes in a notebook so he could look back at the discussion if he had questions later in the day, or needed a reminder of what we decided. Gradually, we have moved away from structured meetings since we don’t deal with the same volume of VA and military issues at the moment, and instead do a brief check in each morning to cover his schedule. I also check the calendar on Sunday night and alert him to upcoming activities and appointments for the week ahead.

5. Use a Timer

Time can be difficult to track for a person with a TBI. Setting a timer can help add structure to the day, aid in staying on task, and improve efficiency and independence. Try setting a timer to:

  • Break tasks into smaller steps
  • Allow for scheduled breaks
  • Set start or end times for activities
  • Allow transition time

6. Use Labels

TBI can make it difficult to remember where items are stored, and looking through multiple cupboards and drawers can add frustration. We use a system of labels around the house to locate key items.  After our home remodel a couple years ago, Sean found the increased number of light switches especially confusing, so I labeled those as well. You may want to label drawers, cupboard doors, bathroom cabinets, nightstand drawers, storage in the garage, etc. to fit the needs in your home.

Use Labels

It can also be confusing, and even frightening, to operate appliances or equipment. Sean struggled for months to operate the new microwave since the buttons were different. Our new flat-top stove was a particular concern as the burners have options for different sized pans, and the surface stays hot long after the burner is turned off. I printed brief instructions for each appliance, mounted on a magnetic sheet, and covered with laminating film so they can be wiped clean, if needed. We also used orange bump dots to mark the buttons he may  need to use most to make them more visible.

Laminate labels so they can be wiped clean.

Laminte labels so they can be wiped clean.

It’s easy to forget the items you need when you leave the house. I hang notes on doors (try colored Post It notes), and set necessary items on a chair next to the back door where they will be visible on the way out. I also made magnetic notes for items Sean needs each time he leaves the house.

Magnetic notes for items Sean needs each time he leaves the house.

7. Keep Things in the Same Location

When our daughter was home last summer she helped put groceries away and moved the yogurt to the opposite side of the refrigerator shelf. Sean thought we were out of yogurt for days when in fact we had plenty–just in the wrong spot. The same happens if I wash a bag of carrots and put them in a Tupperware bowl to preserve freshness. I now label that container so he knows what’s inside (the same for fresh cut fruit or vegetables) with reusable wipe-off labels.

Staying organized is a matter of establishing a habit for most of us. Many times I can’t find my wallet, keys, or phone if I put them in new locations. We have a shelf by the door for Sean’s keys and wallet. His medications for the day go on the same counter each morning. His chargers stay plugged in next to his nightstand. His hearing aids stay on top of the dresser. He has a small set of stacking drawers on his dresser for extra keys, cords, and eyeglasses. This routine aids with memory when he can’t locate an item.

8. Simplify Household Chores

Keep chores simple. We have learned that multi-step instructions or long lists of tasks overwhelm Sean’s brain and result in nothing being accomplished. To enable him to be helpful and avoid nagging we’ve come up with our own system.

Sean has a few tasks that he is in charge of completing. I can remind him with a note on the counter, but then allow plenty of time for him to complete the job independently. He is in charge of taking out the trash, feeding the dogs in the afternoon, keeping his area in the basement clean and organized, and putting away leftovers after each meal. In order to ensure he is completing chores independently, I do not step in to take over or redo what he has done. This means the trash might sit in the porch for a couple days until he remembers to pick it up and take it outside (though I remind him more frequently if it has food waste or it’s hot outside).

Sean still enjoys maintaining our home and yard, although he’s not able to do many tasks independently. He is no longer able to safely mow the lawn or shovel the snow. Since I have no desire to do either, our solution was to locate dependable people who offer those services and make it Sean’s job to call them when needed. At times it takes a day or two for him to remember to make the call, but the responsibility for doing so is solely his. He also calls to schedule car maintenance or home repair and I help him identify the person to call when necessary.

It’s important to note that changes in our routine (illness, pain, travel, company) will disrupt his routine and we will need to start over getting him back on track.

9. Create a Safe Space

Sensory overload and stress can lead to fatigue, anxiety, and anger. Having a safe space to retreat and decompress is an easy way to take time away and calm down or rest. Choose a quiet place that can be dedicated to relaxing activities. Equip this space with whatever you find comforting: TV, headphones, computer, comfortable chair, puzzles, books, etc. It is helpful to have items dedicated only to this space, with spares for other areas of the house, so this area is always prepared and ready.

When spending time at the home of relatives or friends, try to identify a safe space ahead of time. Talk to the host about the purpose of this space and ask them to help you select a location. Bring portable headphones, laptop, iPad, books, etc. in a back pack as a “mobile safe space.” Prepare ahead of time by discussing the plan and visit the safe area when you arrive.

Be aware of clues. For example, if Sean disappears with no notice I know he is taking down time and doesn’t need my support, but if he is seeking my attention, he needs me to direct him to the safe area and help him get settled in. He may need pain meds or extra support.

It may also be helpful to choose a safe word or code word that can be used during times of distress.

10. Using Tools to Aid Memory

Highlighters and Post-It notes or sticky tabs are great for marking important information in books, binders, and manuals. They are also handy if you print emails, memos, or meeting notes.

Digital recorders can be used to record meetings or classes, but can also be used to keep audio notes or reminders throughout the day. Most smart devices have digital recorders built in, so there is no need to purchase a separate device.

Lists can serve a variety of purposes. Sean is currently using a small whiteboard to track his to-do items for bike camp along with his weekly schedule. He keeps a Post-It note on the counter where he can jot down things he needs me to know (which can range from grocery items to appointments or tasks) and I can add to the calendar or to my own list. We also keep a list of his goals on the bulletin board along with a list of upcoming travel dates. The key is keeping all these lists in one location so he knows where to find them.

11. Track Health and Activity

It is important to document health changes and symptoms to identify patterns and track changes over time. Many times when doctors ask Sean how has been feeling, his answer is based on how he is feeling at the moment because he can’t recall how his mood or pain has been over the past few weeks or months since he last saw the doctor.

I make brief notes each day on Sean’s level and type of pain, if he uses additional medications, his sleep quality, nightmares, periods of confusion, etc. along with his activity levels such as riding his bike, walking his dog, or attending events and meetings. This enables us to give his providers the most accurate picture of his overall health and activity.

12. Manage Medications

Medication errors can be harmful or even fatal. Be sure to keep all medications in a safe place (we use a small safe) out of reach of children. Store medications in their original containers with pharmacy labels intact. Double check dates on labels for expiration and refill information.

Since Sean takes many daily pills, we use a pill sorter designed to hold a week’s worth of medication and divided into slots for AM, noon, and PM medications (the Velcro at the top of each box is to help him identify the AM container due to diminished vision). Occasionally, Sean gets confused and takes pills from the wrong slot at the wrong time of day, so we use a small jar with a lid to avoid confusion.

We keep an up-to-date printed list of medications in the safe, my purse, Sean’s wallet, and with emergency information.

If you receive prescriptions from the VA, you can use My HealtheVet to manage prescriptions and refills.

For more information, read this article about VA prescriptions from Family Of a Vet.

13. Find a Hobby

Keeping the mind and body active is an effective tool against depression, anxiety, and even pain. After an injury, it can be difficult to stay active and enjoy the same activities as before. Finding a hobby is one way to stay connected with others and constructively deal with stress and tension.

Exploring different hobbies can open your mind to new and creative endeavors. Engage local friends and family members to increase your amount of social interaction. Check your local area for hobby groups that have clubs or meetings. Take a class to learn something new.

Take time to explore alternatives and get connected with groups that offer adaptive sporting programs like Challenge Aspen Military OpportunitiesLakeshore Foundation’s Lima Foxtrot programUSABA, and Higher Ground (a few of many available to veterans). Building new skills is an excellent strategy for coping with changes in your life.

Volunteer activities can also offer a fantastic outlet and can become a hobby of sorts, too. The focus is on finding new activities to keep you active and healthy.

14. Allow More Time to Complete Activities

Cognitive deficits due to TBI can cause a variety of processing and attention difficulties. The following are key areas that can impact success when completing tasks and activities:

  • Difficulty sustaining concentration for a period of time
  • Inability to filter or combine information
  • Losing track of time
  • Fixating on one aspect of the task, unable to move forward
  • Inability to make decisions, or making quick decisions which are not thought out
  • Memory and confusion issues
  • Slower processing time

It is important to allow time to think and respond, and provide prompting as necessary. Good ways to assist include:

  • Be generous with wait time.
  • Limit the number of steps.
  • Use note cards or prompts.
  • Remember building toward independence is a process.

15. Use Photo Albums to Aid in Memory

Several years ago Sean and my dad went on a fly fishing trip to Sun Valley Idaho. A few weeks later a friend asked Sean about the trip. Sean gave a blank stare and said he hadn’t been on a fishing trip. Several other times Sean has had difficulty remembering the events of trips, and the people he has met. I have put together small albums from each trip to help Sean recall these events. I have used labels to help him identify people. We look at the photos together and talk about what he did that he enjoyed. Slowly, people he has met multiple times have stuck in his memory. It’s handy when he asks questions about a trip, or about someone he’s met, to have the photos close at hand.

16. Use a Script

That might sound funny at first, but it’s incredibly helpful. I have found over the years that having scripts for the children when they are assisting Sean can make for a much smoother visit. I have included a few examples. Be sure to make note of what works in your individual situation.

Our daughter was staying with Sean and he was requesting to eat out every night. She had purchased groceries and was getting frustrated with his wanting to change her plans every night. I explained that he was probably getting hungry and making suggestions simply as a way to solve his hunger problem. I told her that as it neared dinner time she should tell him, “I’m making ____ for dinner tonight. It will be ready around 6:00.” The simple act of making him aware of what was coming next was enough to put him at ease.

When he gets anxious in public we practice using calming words such as, “We will be finished shortly.” “I understand your frustration, let’s finish up and get out of here.” “If you need to leave, just let me know.” Hearing the phrases he is used to helps him remain calm, and helps whoever is assisting him know what to do in tense situations.

When Sean is having a migraine the pain is normally compounded by confusion. He repeatedly gets out of bed, or asks what he should be doing. It is helpful to say, “You need to lay down (take a pill, use an ice pack, stay still) until you are feeling better. That’s your only job right now.” I may need to repeat it a few times, but it works much more effectively than trying to answer each question or concern he raises.

17. Manage Stress

Stress is a normal physical response to events that make you feel threatened or upset your balance in some way.  Stress can also impair cognition, processing, and memory, and prolonged stress can wreak havoc on the entire body.  It’s important to take time to restore the balance in your body and brain on a regular basis. Here are a few ways you can recover from and reduce the stress in your life.

  • Get regular exercise.
  • Eat a healthy diet.
  • Practice good sleep habits.
  • Reduce caffeine and sugar intake.
  • Avoid alcohol, cigarettes, and other drugs.
  • Take regular breaks.
  • Learn to say no.
  • Take time to connect with others.
  • Find activities that replenish your soul.

18. Stick to a Routine

Individuals with brain injury may have difficulty planning and organizing their daily tasks. It is helpful to plan out a consistent routine at home that is predictable. Get up at the same time each day. Perform hygiene tasks in the same order. Eat scheduled meals. Use checklists where necessary to help stay on track. Predictability can reduce anxiety about the unknown and consistency will increase the level of independence in the home.

19. Travel Wisely

Travel can be stressful even under the best of circumstances. Being prepared can ensure your travel plans go as smoothly as possible.

Use a specific packing list. Sean often means to pack an item, or thinks he has it when he doesn’t. Having a list to check off allows him to pack independently and be confident he has all he needs.

Bring enough medications (prescription and over-the-counter as needed). Include an extra day or two to allow a buffer should travel plans change. Be sure to include extra pain medications. Always keep medications and any critical care items in your carry-on baggage should flights be canceled or delayed

Pack a variety of comfort items and activities such as a travel pillow and blanket, books or audio books, portable electronic device loaded with music or games, headphones, and snacks. Sean packs the items he needs in his backpack whether we are flying or driving so he has them close at hand.

If you have a service dog, be sure to include treats and comfort items along with necessary care tools and plenty of food. Keep the dog’s critical items in your carry-on baggage. It’s helpful to have ADA guidelines available along with service animal guidelines from the Air Carrier Access Act (see Seat Assignments page 6) should you encounter any questions or concerns about your service animal.

If driving, be prepared to make stops along the way and allow break time.

When flying, allow enough time to comfortably get through security and to gates on time. TSA offers a service for disabled veterans that will provide assistance at the airport. Contact the TSA Cares Helpline for more information.

When you arrive at your destination, allow time to settle in before starting activities.

If you are staying in a hotel, locate nearby restaurants or choose a hotel with a restaurant onsite. Dine at off-peak hours to avoid crowds.

If using public transportation, study the routes and fares ahead of time. Have taxi fare and reliable cab company numbers on hand. If driving, know the best routes around town and the locations of your destinations.

Have a clear (but flexible) itinerary with planned breaks and meal times.

Remember that when you return home extra recovery time will be needed before starting your normal routine.

20. Prepare Simple Meals

One of Sean’s goals is to help plan and prepare meals a couple times a week. Sean received training in safe cooking techniques during his blind rehab programs and is interested in becoming more independent in the kitchen.

  • Plan the menu and shopping list. Choose meals with fewer steps to follow.
  • Store all items in one spot with a label in the cupboard and/or refrigerator.
  • Use a tray to gather ingredients at preparation time. Gather needed cooking utensils in the same fashion. Have a timer available.
  • Use recipe cards with clear steps. Follow all steps in order and use the timer to signal when it’s time for the next step.
  • Practice kitchen safety.
  • Include clean up as part of meal prep.

Store all items in one spot with a label in the cupboard and/or refrigerator.Store all items in one spot with a label in the cupboard and/or refrigerator.

You might also try make-ahead freezer meals that can be reheated by following instructions taped to the container. Convenience meals such as microwave meals, frozen dinners, or sandwiches are another easy way to share in the cooking responsibilities.

21. Prepare for Absence or Illness

Preparing to be away from home (or, gasp! sick) can be incredibly stressful. By planning ahead of time (when possible) you can make your absence easier for all parties. Pre-planning is especially valuable when absences come as a surprise.

Identify how the care recipient will:

  • get to and from appointments, meetings, and outings
  • get meals or groceries (and/or remember to prepare and eat meals)
    • stock up on microwaveable meals, canned goods, frozen foods, juices
  • remember to take medications
  • care for pets
  • stay on a sleep schedule
  • clean up

Identify people who can assist with daily tasks, or who can stop by during the day to check in.

Have a list of emergency number on hand.

Have copies of medication lists, doctors, insurance information in a central location.

Help your loved one identify what he/she can do to help you. Being helpful and providing care for you is an easy way to put anxieties to rest.

22. Emergency Information

Always carry emergency information in your wallet or purse. This information should include medical conditions, doctors’ information, current medications, and insurance information along with any emergency contact numbers.

As an added measure, you might consider a free AVBI Medical Alert Tag and ID Cardthrough American Veterans with Brain Injuries.

A new option available for purchase is My ID band which allows medical professionals to electronically access your emergency information.

Smart phone users can download an app such as ICE (In Case of Emergency) which displays emergency information on the lock screen in case you are in an accident.

23. Create an Emergency Binder

I know what to do in an emergency involving Sean. I carry his critical medical information and know his history. But what if an accident occurred and I was not the person on the scene? What if something happened to me, would he know what to do? Creating an Emergency Binder could literally save a life.

Things to include:

  • Personal Information (for each family member): name, SSN, DOB, height, weight
  • Copies of insurance cards, VA ID card, military ID
  • Allergy information
  • Names of doctors with specialties and contact information
  • Brief medical history, including any mental health conditions
  • Current medications and dosages with prescriber and pharmacy information
  • Emergency contact numbers for family members
  • Copies of legal documents such as a Durable Power of Attorney for Health Care, Living Will, and Advance Directives

If you are interested in a free, ready-made packet you can print and fill in, email me at melissa@familyofavet.com and I will send to you.

Also, be sure to post emergency numbers in a visible location and include suicide hotline numbers.

24. Use Apps

Check out these Life-Changing Mobile Apps for People with Brain Injury.

From this list Sean uses Audible, Cozi, ICE, Lumosity, PTSD Coach, Dragon Dictation, Breathe2Relax, and T2 Mood Tracker. Check them out and see what might work for your situation.

Sean also uses Brain Fit and Brain Trainer apps occasionally. He has the MyLocation app which allows a user to find their location and share with others. Sean’s is set up to send me his location if he is confused or lost.

25. Educate Family and Friends

It can be incredibly difficult for family members and friends to understand the changes that happen after injury. This is especially true when dealing with an invisible injury like TBI. It’s important to have a support system that includes loved ones, which means you may need to take an active role as educator to help them understand how the injury has impacted the immediate family, as well as the care recipient, and how they can best be of assistance.

Be prepared to have difficult conversations. Whether discussing care concerns or expressing a need for space and privacy, conversations with family members can be touchy post injury.

Have realistic expectations. Every member of the team has different abilities, skills, comfort levels, and limitations.

Be clear about who is in charge of making care decisions, and what medical information will be shared.

Share strategies that work. Encourage others to get involved in positive ways by following the model that works for you.

Make necessary adaptations for holidays and events. Discuss strategies for success in advance.

Most importantly, be sure all members are educated about the nature of the disability and expected outcomes. Share information on TBI that you find helpful. You can find tons of helpful articles and videos at BrainlineBrainline Military, and Family Of a Vet. Also check out Brain Injury Association of America and American Veterans with Brain Injuries. Visit your local county extension office, or do a quick google search, for local brain injury agencies or support groups.

26. Keep a Journal

Journaling has been shown to help reduce symptoms of anxiety and depression and improve overall feelings of self-worth. Taking time each day to jot down notes about the events of the day and how you felt throughout the day is an excellent tool to help get in touch with emotions and process feelings. By reading through previous journal entries you can identify common stressors or triggers and develop a plan for positive coping strategies when those triggers arise. Depending on your preference, a personal journal can be shared with doctors or counselors for more insight.

For those with TBI, a journal can also serve as a reference book to record events and memories. It’s easy to look back and see when something happened, or browse through entries to refresh your memory.

If paper and pencil isn’t your thing, or you’re on the go, try using a digital voice recorder to dictate your journal entries

27. Keep it Simple

Eliminate what you can. Think you can’t? Start by reviewing activities for each family member. Evaluate your choices. Why are you involved with each activity? Is this activity meaningful and necessary? Does this activity enrich our lives in long-term ways? If not, consider eliminating it. Keep in mind that the goal is to streamline your home life and relieve stress and tension from your family.

Consider your options. You won’t be the world’s worst parent if you don’t attend every single game. Talk to other parents about carpooling to activities. There are usually other parents who would be relieved by a rotating schedule. If a season-long program doesn’t fit into your schedule, check into local day camps or classes your child could attend. Choose activities where your child is adequately supervised and time is structured to gain time for yourself. Use this time to run errands, or, bring a good book and enjoy a little down time.

Don’t do things simply because you’re feeling pressured. While it may be easier to say “yes” in the moment, think about how you will feel once you are obligated. If it’s not the right choice for you say “no” and stick to it.

What can you outsource? Do you have a neighbor who can share carpooling duties to and from school? Is there a friend or family member who can take the kids off-site for playdates? Can you afford to have someone come in to clean or have groceries delivered? Check with your local VA facilities, veterans’ organizations, or churches for additional resources and services.

Be honest about your needs and limitations. Many times people want to help but don’t know how.

Utilize available services such as Occupational Therapy, Speech Therapy, Physical Therapy, or Recreation Therapy along with services through any available caregiver programs. These trained professionals have a wealth of information and resources.

Forgive yourself. No one is prepared for major life changes. It’s ok to not have all the answers or to not have your sh*t together all the time. We all struggle to get through the day at times and find it takes much longer to recover after setbacks or when new issues arise.

28. Get Plenty of Sleep

Sleep is essential to good physical and mental health. When you don’t get enough sleep memory, concentration, coordination, and mood are negatively impacted. Lack of sleep over a period of time causes your physical health to decline and can lead to increased depression and anxiety. Sean’s nightmares, night sweats, insomnia, fatigue, restless leg syndrome, sleep apnea, and chronic pain all have a negative impact on his quality and quantity of sleep (and mine!). Sleep medications help with some of the symptoms, but don’t solve the problem.

To combat sleep deprivation and allow your body as much rest as possible, establish a sleep schedule by going to be and waking at set times each day.  Take naps, if needed, early in the day. Avoid if napping disrupts nighttime sleep.

Turn off electronics. Keep the room dark and cool. Make the bedroom a quiet space, or use a white noise machine to create an audibly peaceful environment. Invest in a comfortable mattress, pillows, and bedding.

Avoid caffeine and sugar after dinner, and don’t eat large meals late in the day. Alcohol and nicotine can also be factors in quality of sleep.

Take time to unwind before bedtime. Read, meditate, or practice deep breathing exercises. Take a warm bath. Listen to soothing music. Dim the lights. This can help your body and brain get into sleep mode.

29. Encourage Independence

Independence is a critical component of recovery after TBI. While your loved one may not be able to do all their former activities to the same extent as before the injury, implementing support and modifications can maximize independence.

  • Set realistic goals and start small.
  • Create an environment for success. Have needed materials on hand in areas where they are easy to access.
  • Use checklists or verbal prompts where possible.
  • Practice safety and good judgement.
  • Give immediate, constructive feedback. Use praise and encouragement.
  • Accept that mistakes will happen and make modifications when necessary.
  • Connect with others who will encourage independence in or out of the home.

30. Use Praise and Positive Affirmations

A little praise can go a long way toward boosting a person’s mood and creating a positive pattern of behavior and interaction.

  • Remember to say, “Thank you.” Even for the small things like taking out the trash (even if it takes several days to get it done) or wiping off the table.
  • Leave little notes of appreciation around the house.
  • Share your pride in their accomplishments.
  • Keep a gratitude journal.

31. Resources

Looking for additional information on traumatic brain injury? Check out these websites:

Additional resources and reading material available on tabs at the top of this page.

Posted on BrainLine October 25, 2016

About the Author

Melissa and Sean JohnsonMelissa Johnson and her husband, Sean, were married in 1995 and raised their three children in Aberdeen, SD. Melissa taught for 15 years in Special Education and First Grade. Sean served in the US Army and was deployed three times in his 24-year career in the military. Sean was injured by a mortar blast on March 25, 2006, in Balad, Iraq. The blast resulted in a traumatic brain injury. Sean is also legally blind and struggles with post-traumatic stress disorder.

When Sean returned home in 2007, the family struggled to adjust to this “new” man in their house. Melissa eventually left her teaching job to become a full-time caregiver to her husband. She is now a certified caregiver through the VA’s Caregiver Program.

Both Melissa and Sean have been active with the Blinded Veterans Association since 2009. Sean serves as Commander of his local VFW chapter and is also the Junior Vice of the local Disabled American Veterans chapter. Melissa currently works with the Military and Veteran Caregiver Network as the Education and Training Coordinator. She serves with the Elizabeth Dole Foundation as a Caregiver Fellow. She is honored to work alongside other caregivers from across the nation to raise awareness of the issues facing our nation’s caregivers and families.

Read more from Melissa on her blog: Bringing the Battle Home

via 31 Strategies for Living with Traumatic Brain Injury | BrainLine

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[BLOG POST] Guidelines To Flying After A Stroke – Saebo

After suffering from a stroke, it is likely that a survivor will have limited activity. Issues with daily routines and general mobility are common, but one of the most difficult factors to consider is the idea of traveling by plane.

Transporting yourself or a loved one who has just battled a stroke can seem frightening, and with good reason. In most cases, neurological damage from a stroke has impacted the body, which creates concern when placing an individual into an environment where altitude and air pressure are variables. But as risky as it may appear, flying poses no immediate threat to a stroke survivor as long as necessary precautions are taken.

Is it Safe to Fly After a Stroke?

When it comes down to a stroke survivor’s ability to fly, the answer is yes. Flying shouldn’t be a detriment to a survivor’s health, but there are several things to consider before booking a ticket.

Timing

First off, it is crucial to avoid flying within the first couple weeks of having a stroke. This span can reveal some of the strongest signs of mental and physical impairment, so giving a survivor time to adjust is important. In any situation, make sure to consult with a doctor before making travel plans.

Less Oxygen

Once you or a loved one are on board, another factor to keep in mind is the amount of oxygen available on an aircraft. Typically, cabins provide less oxygen than a normal environment, so if one has any respiratory issues or heart complications, this is something to account for. Generally speaking, lower oxygen levels shouldn’t cause a problem, but making sure you or a loved one are comfortable is always a top priority.

Deep Vein Thrombosis (DVT)

No matter who you are, sitting for a long time can cause pain in your muscles, especially your legs. For shorter flights (one to two hours), inactivity may not be so severe, but longer flights (5 hours or more) are a different story. When seated for an extended time, blood flow in the body begins to slow down, making it easier for blood to clot. Basically, Deep Vein Thrombosis (DVT) is a blood clot that forms within a vein, mostly occurring in the legs.

Cases of a DVT have the ability to become more severe if a small clot dislodges itself and travels to the lungs, heart, or brain. As scary as this may sound, a DVT can happen to anybody during long-distance travel, so there is no need to worry too much, but those who have a history of stroke are more prone to experiencing it. The best way to avoid having a DVT is to stand and stretch every hour so that blood circulates efficiently. If standing is not possible, then manually bending the arms and legs is a good alternative.

Hypercoagulability (Thrombophilia)

For some individuals, a condition known as hypercoagulability (formally known as Thrombophilia) can be a serious issue to consider before flying. Hypercoagulability is an abnormality that heightens the risk of blood clotting. Check with your doctor regarding treatment options such as blood thinners or compression stockings. It is also most likely to be a concern for those who have suffered from a DVT in the past. If you have or a loved one has experienced a DVT, talk with your doctor to see if you may be susceptible to hypercoagulability.

What Medication Should I Take to Fly?

When it comes to medication, being prepared is key. Flights are notorious for running late and experiencing delays, so it is highly recommended that you pack whatever medications you may need into your carry-on luggage. In the off-chance that your carry-on luggage needs to be checked, you can get innovative and pack your necessities into a purse or backpack that you can carry with you at all times. Most airlines allow you to bring liquid medications or dietary supplements on board, but checking your airline’s safety regulations beforehand is always a good idea. To provide additional support, consider getting a note or prescription from your primary doctor that lists the medication you will be taking with you; that way, you can avoid any potential interruptions.

What Extra Steps Will There Be For Me?

Along with making arrangements for the actual flight, it is extremely helpful to take advantage of every opportunity the airline itself can provide. For example, if you know in advance that your itinerary will be strenuous, you can call the airline before your trip—preferably 48 hours prior—to discuss any concerns.

More than likely, your airline will accommodate you as much as possible, but remember that crew members are not allowed to give any kind of physical, individualized care. If you or a loved one cannot perform certain physical requirements, or if there is limited mobility, it may be a good idea to travel with a friend or an affordable attendant that can assist in any situation.

If any kind of portable equipment is needed for air travel, the majority of airlines will store up to two items free of charge; however, substantial items—a wheelchair or something larger—must be checked.

In the Air Again

Being a stroke survivor certainly comes with its challenges, but it doesn’t mean that you or a loved one can’t live a full life. With any serious medical condition, a certain level of patience and resilience is required to prevail, and traveling via plane is doable with the right amount of support.

If you or a loved one plan to fly in the future, make sure to get the proper clearance and guidance from a healthcare professional, and check with the airline on the assistance they can offer. By asking questions and being prepared, you can ensure that your next trip will be successful. For more answers on common questions about recovering after a stroke, click here.

via Guidelines To Flying After A Stroke | Saebo

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[VIDEO] 5 Tips for Surviving the Holidays with an mTBI — How to manage your TBI & still enjoy the holidays – YouTube

Kim & Brie are back! This time they’re here to give you some tips on how to comfortably celebrate the holidays after a TBI. Post Concussion Syndrome can make holidays even more overwhelming than usual, but some forethought and planning can help. The TBI Rockstars guide you through some of their own holiday experiences post brain injury.

 

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[BLOG POST] The gamble of socialising after brain injury

The gamble of socialising after brain injury

I used to enjoy socialising with my friends, at work or an evening out. But even now, almost 2 years after my traumatic brain injury, I struggle with groups. There are so many reasons why this is difficult for me. I hate it needing to turn down kind offers for events, but I have to.

Socialising in groups means too many conversations to follow

Trying to get used to having a massively shortened attention span, like me, and following what someone is saying is tough. But add in several conversations happening at the same time, and it’s too much. I find I get distracted by hearing a word or two that someone else said. Then I’m trying to workout what they might be talking about. Oh but the conversation I’m having isn’t over. Yes you’ve lost me now, what did you say?

Socialising with a brain injury isn't always fun

I’m not stupid, I’m just slow

As many of my brains pathways are damaged, thinking and processing takes a lot more effort than before. It takes me time to think about what you said, let alone a reply. I get there, and other than the fact I struggle to find the words I’m looking for, my response is still the same. But when you have met up with friends, and the buzz is flying as this group are excited about socialising, you don’t want to be stuck with me. I suck the energy out of the flow as I slow it down so much. So I can’t blame people when they start up conversations with others, and I’m left like the lemon that I am.

All the concentrating wears me out

I get tired, and although adrenaline might carry me through the event, I pay for it later. The headaches and eye aches are awful. coupled with the cognitive fatigue, it can wipe me out for a week. And I mean I’m struggling to even get out of bed I’m so bad. I can’t string a thought together, not even that I should try taking some more painkillers.

This aftermath is the part that only my partner James sees. If I do decide to go to something, I know he’s thinking of both sides. Yes it’s good it have that social contact, but he knows it’s probably going to cost me more than dinner.

Socialising with a brain injury

I can cope with a couple at a time so much better. It means there’s just one conversation for me to follow. And I don’t mind if they do most of the talking, in fact it takes the pressure off me. It’s not that I’ve gone off socialising. I just have to weigh up the pluses and minuses of each situation. That’s pretty much the same for everything when you are living with a brain injury, you have to choose your battles.

Another thing to consider when thinking about going to an event is the environment. You can read why in Light and Noise Sensitivity.

Other articles you like like:

Do you find socialising in groups works for you? Please share any good tips.

Source: The gamble of socialising after brain injury | No memory of the day that changed my life

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[WEB SITE] Anxiety Disorders and Panic Attacks 

Alison Sommer graduated from Carleton with a degree in Asian Studies, and now works as an academic technologist at Macalester College. She believes that awareness is the first step to improving problems within mental health care, and will be speaking about anxiety disorders and panic attacks based on her own constantly evolving understanding of her anxiety disorder, OCD. Alison’s greatest loves are her family, hockey and Star Wars.

My first goal here today is not to have a panic attack right on stage.  I have an anxiety disorder called Obsessive Compulsive Disorder or OCD. Obsessive Compulsive…I have a form of Obsessive Compulsive Disorder that causes me to become anxious or frightened when something wrong or unexpected happens. Like if somebody sits at my seat at the table.

It also causes intrusive thoughts. These are thoughts that come unbidden to my head about things that I’ve done in the past or things that I might do. Things that could happen by chance or because everybody secretly hates me.

As you might imagine, these intrusive thoughts are really quite anxiety producing. And this anxiety can manifest in different physical and emotional responses, one of which is the panic attack which I’ll be talking about more in depth later.

But, the thing that made me really hyper aware of the effects of my OCD and made me determined to spread awareness about anxiety disorders in general is that my own symptoms were not always this severe.

So, I want to start at the beginning. As long as I can remember, I’ve always been sort of an obsessive-minded child. I would take a thing, good or bad, and roll it over in my head…over and over.

I was also really shy and awkward and I know, especially at Carlton, a lot of you are thinking, “yeah, me too.” Because, you know, there are a lot of shy, awkward people and all of us have our little obsessions. I don’t know if there is a scale for being shy, awkward and obsessive, but I always felt like I was toward the high end of the range.

“Weirdo” and “freak” were terms I readily accepted as a teenager. And when all the other girls my age were really into the Backstreet Boys, I’m dating myself, I was obsessed with Star Wars. I sort of still am. Like, I got in trouble for coming home late for curfew once as teenager and as punishment my parents took away my Star Wars stuff. And I thought that the world had collapsed.

I also had on again/off again issues with anxiety and depression. And, you know, anxiety and depression really go hand-in-hand, like two best friends who like to corner a third person and make them feel like shit.

So, there I was, this anxious, awkward, obsessive and sometimes depressed girl and that was life. That was my normal.

When I got a little older and started coming out of my shell and meeting people with similar interests to me, like the folks here at the Sci-Fi House at Carlton. Benton House, anyone? Woo.

I started actually opening up and talking to people about my feelings. And I started to realize that there were other people like me that suffered from anxiety and depression. And suddenly I went from feeling, instead of like a freak, I felt like just kind of a normal, anxiety/depression story with a little obsessive behavior thrown in for good measure. And that actually felt pretty cool. So, that was my life.

I also started to get a little help then, I saw my first psychiatrist, got my first meds. And, you know, things were going pretty good. And then I got a really bad concussion while playing hockey. Love the sport, still play it, but it was bad.

That’s when things took a nosedive from me feeling like “normal/runs in the family crazy” to like “scary crazy.” That’s when the intrusive thoughts started getting louder and louder. And it was bad. It was really, really bad. I was angry  all the time. It mostly came out at my husband, but my road rage was also pretty epic.

While I was being an ass to other people, I was also being an ass to myself. I was not eating. I was down to a size zero and that monkey was saying, “you can get skinnier.” I didn’t want to accept that I had a problem. I wanted to feel like I was kicking ass. But, I knew deep down that there was something wrong, because I wasn’t sleeping and my marriage was going through the shitter. But, trying to even think about changing my habits, like, really thinking about changing any of my habits would give me massive anxiety. And this anxiety was leading to panic attacks. Panic attacks are one of the most frightening manifestations of anxiety.

I know if you’ve never had a panic attack, the name sounds kind of lame. We all have those moments of panic, like: “oh, did I leave the oven running” or “my kid just bolted out into the middle of the street.” Or maybe more for you: “I forgot to study for that test.” But, none of these are panic attacks.

The Mayo Clinic’s website says that “A panic attack is a sudden episode of intense fear that triggers severe physical reactions when there is no real danger or apparent cause. Panic attacks can be very frightening. When a panic attacks occurs you might think you’re losing control, having a heart attack, or even dying.” That’s a pretty good definition, but what does it really feel like? That’s what I’m going to try to show you.

So, it’s a pretty normal day, but maybe a little bit stressful, like at a performance evaluation for work or packing for vacation. I’m doing something pretty normal and I start to feel “off.” I know something’s not quite right. I’m getting tingly. A tingling numbness creeps up my neck and all over my face, and seeps into my head. I feel dizzy. So, I sit down. Sometimes I think maybe I just didn’t eat enough today, so I grab for some crackers or a candy bar or whatever I have. My head is feeling fuzzy. As I’m sitting there, sometimes I think “oh my gosh, it’s a seizure or heart attack or…” But, I know better. I know it’s a mounting panic attack when my heart starts beating harder, not faster really, just hard. Like the heartbeat in the background of a horror film.

Now I’m getting scared thinking, “no, no, not here. Not now.” Right now, the right medication might help, might bring this crescendo back down and end the panic attack, but sometimes even the right medication doesn’t always help.

I feel off and I want to sit still, but my body just won’t listen, so I pace. I lash out. The tears come now. Broken, dry cries. Weak, angry shrieks break through and my brain is screaming,

“Shut up! Shut up! Shut up!”

Not a real cry, nothing that could be cathartic can come out. It all gets caught in my throat and in my head. Oh…I get angry. Mad at this feeling, myself, everything! I pound my head with my fists. I want to bang it against the floor. I want to smash my skull and make it all end!

Sometimes I do, I just hit myself and I can’t hold back and it feels like relief suddenly. That physical pain, and I crave physical pain: cuts, burns, bruises. And then that scares me even more.

I look up at my shelf of pill bottles and I think, “I could take them all. I could end it right now.” But, I don’t. I don’t. Real tears come now. So sad. Tears. But, now I can lay down. Just wait for it to be over. Eventually, it ends. It always does end.

And I’m still here. And with my sanity coming back, with my head clearing, I’m grateful to still be here and that it always stops eventually.

This is not an easy thing to live with, knowing that it could happen at any moment, any place, at home, at work, at the tattoo parlor…that’s happened.

And not a lot of people talk about it even though a lot of people go through it. When I first posted to my blog about my experiences with panic attacks, I was surprised when people started contacting me from all corners of my life…on the internet, to tell me about their experiences. And to thank me for speaking out and told me I was brave.

It got me thinking. These days everything seems to have an awareness month or a ribbon or some picture you can share on Facebook to spread awareness.

I’ve made this sort of my panic attack awareness effort and now I hope you all know a little bit more about they really feel like.

As for me, my husband did finally get me to see a doctor. It turns out that my anxiety and obsessive tendencies had basically been give steroids by the concussion.

And I was diagnosed with severe OCD and we started the dance of trying to find the right combination of meds and therapy. We’re still figuring it out.

I still have panic attacks, but luckily, thanks to some wonderful people and some magical chemicals, they are fewer and further in between. And blogging about it and talking about it is part of my therapy too.

I’m very blessed to have such a wonderful support structure here in my life. And to have been given these opportunities to talk openly about my anxiety disorder.

40 million adult Americans, according to the National Institute for Mental Health, have anxiety disorders. That’s just over 18% of the population, so chances are you know someone with an anxiety disorder, whether it’s a friend, a colleague, or even yourself. Of the 40 million who have anxiety, 15% of them experience the terror of panic attacks and it’s twice as common in women as in men. 

When I’m having a panic attack, the best thing people can do for me is to just be with me and let me know they’re there for me and will do things I ask that I say I need, whether that’s to open a window, or let me run away from the room, or turn out the lights… none of which you can do on an airplane, by the way, it turns out.

So, if you’re there when someone you know is having a panic attack, it’s hard to breath in the middle of an attack, much less speak, so instead of asking them over and over,

“Are you ok? What’s wrong? Are you ok? What are you panicking about? What can I do? Are you ok? Are you ok?”

Just be there. Let them know you support them and sit with them as they ride out those waves of panic because… you can’t tell a panicking person to calm down. That’s like trying to tell someone with a gaping wound to just stop bleeding.

But, what you can do is let them know you’re there for them. It may make you feel helpless, but your presence is more comforting than you may realize. And then when it’s over, then you can ask what you can do for next time, if anything really.

But, one thing we can all do, is work together to end the stigma surrounding mental health disorders like anxiety, so that everybody who needs help can feel safe in asking for it.

You can help by showing respect to people who seek the aid of therapists, psychiatrists and medications. Instead of telling someone to work harder or worry less, tell them that you’re there for them and that you understand these things can be a struggle.

If you have anxiety, it’s not your fault.

Help is available in many forms. I started getting help by working with my primary care physician, but there are also hotlines and websites such as The Anxiety and Depression Association of America at http://www.adaa.org.

In short, if you or someone you know has an anxiety disorder, give help, get help, speak out.

You’re not alone.

Source: Anxiety Disorders and Panic Attacks – Artificial Intelligence and Magnificent Brain

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[BLOG POST] Gist reasoning – The most invisible loss of mild TBI

Broken Brain - Brilliant Mind

catching-up-6I am thinking a lot about losses, these days. Loss of friends, loss of doctors, loss of family, loss of jobs, loss of money, loss of hope.

I’ve been actively working on my brain injury recovery since 2007 — nearly 10 years. I got hurt at the end of 2004, so it’s been over 11 years since my last TBI. And my expectations and hopes have varied, during that time.

I always expected to be able to build back my abilities to at least some extent. I expected to be able to be able to retrain my brain to build back my memory, to address my distractability, to handle my fatigue, and basically all-round get myself back to where I wanted to be.

But that hasn’t happened. The one area where I have significantly improved, is in my gist reasoning, which is really the biggest “functional” deficit I had. Not…

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[Abstract] Subjective complaints after acquired brain injury: presentation of the Brain Injury Complaint Questionnaire (BICoQ)

Abstract

The objective of the present study was to present a new complaint questionnaire designed to assess a wide range of difficulties commonly reported by patients with acquired brain injury. Patients (n =  619) had been referred to a community re-entry service at a chronic stage after brain injury, mainly traumatic brain injury (TBI). The Brain Injury Complaint Questionnaire (BICoQ) includes 25 questions in the following domains: cognition, behavior, fatigue and sleep, mood, and somatic problems. A self and a proxy questionnaire were given. An additional question was given to the relative, about the patient’s awareness of his difficulties. The questionnaires had a good internal coherence, as measured with Cronbach’s alpha. The most frequent complaints were, in decreasing order, mental slowness, memory troubles, fatigue, concentration difficulties, anxiety, and dual tasking problems. Principal component analysis with varimax rotation yielded six underlying factors explaining 50.5% of total variance: somatic concerns, cognition, and lack of drive, lack of control, psycholinguistic disorders, mood, and mental fatigue/slowness. About 52% of patients reported fewer complaints than their proxy, suggesting lack of awareness. The total complaint scores were not significantly correlated with any injury severity measure, but were significantly correlated with disability and poorer quality of life (Note: only factor 2 [cognition/lack of drive] was significantly related to disability.) The BICoQ is a simple scale that can be used in addition to traditional clinical and cognitive assessment measures, and to assess awareness of everyday life problems.

The figure shows the most frequent complaints (in decreasing order) reported by patients with acquired brain injury (traumatic brain injury or stroke) and by a close relative, using the Brain Injury Complaint Questionnaire (BICoQ). These complaints indicate a combination of cognitive difficulties and behavioral and personality changes.

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[BOOK] Rehabilitation for the Unwanted: Patients and Their Caretakers – Βιβλία Google

 

Routledge29 Σεπ 2017 – 242 σελίδες
This book is a study detailing what happens to people and what life is like in a rehabilitation program. The program discussed is embedded in an institution, called “”Farewell Hospital”” by the authors, that was designed to fill a demand for facilities for those judged unable to live on their own. Due to physical or mental handicaps and no family, friends, or other social agents who are willing to make a home for them outside of a public institution, these patients were placed in a rehabilitation unit.Most patients were placed with the rehabilitation unit as a brief interlude before their permanent placement in the custodial unit of the vast institution where they would live out their lives. This work deals with the question of what happens to patients once they are rehabilitated and the non-therapeutic rules and practices of the health and welfare structure of which they are a part. In this case, the rehabilitation specialists and ward workers set themselves the task of improving the life chances of their clients by treating their ailments when possible and by improving their physical functioning so that they were better able to care for their own needs.The authors examine the effects of the organizational relationships on rehabilitation outcomes and on the lives of the people who make hospitals their home. The text attempts to sustain feeling for the historical context of their study the “”problem”” of larger numbers of disabled, poverty-stricken persons, who are no longer wanted by anyone and asserts that a “”solution”” must be found.

Source: Rehabilitation for the Unwanted: Patients and Their Caretakers – Elizabeth Eddy – Βιβλία Google

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