Friday, March 27, 2009

Communication: One letter at a time

Jimmy had plenty to say after his debilitating stroke, but there was no way to say it. As time passed, he was able to share many thoughts despite the loss of his voice. He improvised with the help of speech therapists and well-intentioned friends and strangers.

Codes are often used to send secret messages. Prisoners of war in Vietnam used a language of knocks to communicate with one other from their cells.

"It sounds like that," Roy Hamby, the manager for the Georgia Department of Veterans Service office, rapped out a few knocks with his knuckles on his wooden desk. I was in his office to discuss services available to Jimmy, a Gulf War veteran. "That's how they talked."
"He can't move," I said grateful of the helpful information, but tried to explain again that Jimmy was completely paralyzed, "but I'll check into that."

While everyone I met offered helpful solutions – from e-mail and instant message chat abbreviations to Morse code – Jimmy was working directly with professionals at Shepherd Center in Atlanta, Georgia.

Jimmy didn't need a code to break into a safe or convey some top secret message. He needed one to share his words and himself with the world. A debilitating brain stem stroke robbed him of his ability to speak and move.

While thankful his brain was spared, it was frustrating. "How do I make them understand?" he would spell to me after he described how the nurses guessed what they should do. By not asking for Jimmy's input, the medical staff was just hoping they figured out the right course of action. It was a recipe for failure and totally unnecessary, because Jimmy was right there. They could ask Jimmy, but they just needed patience to wait for his response.

Jimmy was unable to communicate for weeks after the stroke. One day, a blink opened up a world in which he had once walked and talked. He blinked twice for yes and once for no. The blinks eventually morphed into a look up for yes and a look down for no.

At Shepherd, the therapists immediately began experimenting with a couple of low-tech communication methods like a Before M method. A person recited the alphabet slowly from A to M. Jimmy blinked when you reached the letter he wanted to say. If it was not a letter Before M, the person recited letters from N to Z.

Asking yes or no questions was a simple way to communicate that became complicated quickly. "Jimmy do you want to get in your wheelchair or stay in bed?" He would stare blankly at the questioner, because he couldn't answer with a yes or no. On a good day, the aide realized the mistake and broke the question into two parts. She would pause to give Jimmy time to answer the first one before moving onto the second one.

Jimmy’s blurred and double vision made it impossible to use a communication board, which included the alphabet in squares. I could point at letters all day, but Jimmy of couldn’t see what I was pointing at. The same happened when we tried a computer program through Neural Signals (http://www.neuralsignals.com/). Dr. Phil Kennedy was a gem. It is an excellent program and has been very successful for others. Jimmy's vision problems hampered his use of the system.

Another method involved a Dynavox. It essentially gathered dust, because it was cumbersome to use. It probably could have been better used in a home setting. It was not a good fit for the first nursing home in which Jimmy lived. Some staff feared breaking the equipment and others didn’t want to bother hooking Jimmy up to it.

The crown jewel in Jimmy's arsenal of communication devices was an auditory scanning system he devised one Saturday with a speech therapist. It was low tech. Jimmy didn't need a computer to communicate. He needed a willing partner – a human speller.

When Jimmy wanted to talk, he blinked rapidly. It signaled that he wanted to spell. Then, the series of questions began.

"Is it a vowel?" Jimmy answered yes or no. If it was a vowel, then I recited the vowels: A E I O U Y, until Jimmy blinked. I wrote down the vowel. Then, repeated the process asking, "Is it a vowel?" No. Then, I offered Row 1, Row 2 or Row 3.

The system appeared complicated. It was intimidating to some. We considered ways to streamline it, but it worked. Jimmy never changed it.

When Jimmy and I did a “show and tell” demonstration of how to spell, Jimmy would often spell “Hello.” While it would have been easy to spell “Hi,” Jimmy never took the easy way out. He spelled out the entire word, so the guest could understand the complexity and simplicity of this spelling system.

All the people who were locked-in – whether by a brain stem stroke like Jimmy or someone who had Lou Gehrig's disease or Amyotrophic Lateral Sclerosis (ALS) – led the way to help Jimmy communicate. Each person and each speech therapist added to the dialogue on ways to communicate when one’s voice just didn’t work.

A chart of Jimmy's spelling method followed him everywhere. It was placed squarely over his bed at the nursing home or in the hospital. Smaller versions were printed on laminated business cards, so nurses and aides could keep it with them. Postcard size versions were available for visitors.

Following Jimmy's stroke, his words were precise just like they were before his stroke. The spelling system lacked personality as inflection and emphasis were absent in the string of letters. Words were sometimes garbled. The letters mingled together. It was fuzzy sometimes where one word began and another ended.

The spelling method cracked an all important code for Jimmy. It was the key to communication. It allowed him to communicate both powerful and trivial messages. It allowed him to speak without a voice.

The chart is pictured above. A key direction is at the end: Be careful about guessing. A lot of wrong guesses often leads to frustration for both the speller and Jimmy.

Jimmy wasn't very tolerant. He wanted his conversations to be free of guesswork. He had had enough frustration elsewhere in his post-stroke life.

Friday, March 20, 2009

Medical news can get twisted

Medical emergencies don't discriminate. It doesn't matter, who you are or what you do. It doesn't matter, if you are rich or poor. It doesn't matter, if you are famous or a regular Joe. We are all the same. We are all vulnerable to the crisis.

While celebrities may face scrutiny from the mainstream media or gossip sites, everyday people face scrutiny from sometimes tougher critics such as Aunt Mae or their neighbor Bob. The tragic death of Natasha Richardson made me think of how information gets confused during a medical crisis.

I didn't learn of her death until late on the evening of March 18, but my morning began with grim headlines about her condition including a notice that she was already dead and others indicating she was brain dead.

The headlines, the corrections, the innuendos made me mad. It wasn't my journalism background that raised my anger; it was my background as a caregiver. While most will not deal with misinformation on the global level that Richardson's family experienced, they will experience misinformation on a local and more personal level from their own families and their own communities.

When Jimmy had his stroke -- in that first hour -- my family and his made calls to family members and friends. We essentially said, "It's something really bad, but we don't know anything yet. They are running tests."

The doctors didn't know exactly what had happened to Jimmy yet and I certainly didn't. I was processing the information I had received. I knew the news was grim, but there was not enough news in the beginning to even determine how I should feel. I couldn't gauge the facts. It took a few days for it all to digest.

I knew I did not want to disturb my twin sister Tracy that night, because at seven months pregnant she didn't need to know. She could sleep through the night. As we received more dire reports, Tracy and her husband David were called. They joined us in a special waiting room outside of the larger Intensive Care Unit's waiting room.

The next morning -- still with very little information -- I asked Tracy to call my office and tell my co-workers the news. I couldn't talk to anyone just yet. "They already had heard something," Tracy said when she returned from making the call.

In small towns, news travels fast. My friend Patti said someone had already called the office asking for information on what had happened to Jimmy. She didn't know. It was my first and very fast lesson about medical information: You can't control it.

It's like that gossip game you play in school. You whisper one thing to the person next to you. When it returns to you, it is something completely different.

In Jimmy's case, the news was being spread out of concern, but it wasn't always correct. I learned to be exact with information. I only shared theories and ideas with a handful of people, so the information didn't get spread around as fact. If necessary, I would repeat the information -- several times.

A key task after Jimmy's brain stem stroke was to be informed. I did my best to keep everyone else informed too, but my priority was Jimmy.

The delivery of medical information has changed over the years, which can be difficult for family members. You just can't call up the hospital anymore to find out how Cousin John is doing. With federal rules such as HIPAA or the Health Insurance Portability and Accountability Act, hospitals have become stricter with medical information.

I saw both sides of the spectrum of the HIPAA law -- extreme enforcement and facilities that sometimes would make you wonder, if they knew what HIPAA was. During a time when Jimmy was stuck in a hospital 100 miles away from me, the phone was my only source for daily updates. A nurse insisted once that she could not provide information over the phone. Another hospital released information about Jimmy being placed on a ventilator to a family member over the phone, prior to the action being taken.

Whether it was a HIPAA issue or a neighbor spreading good-intentioned misinformation about Jimmy, I gradually learned to pick my battles. I argued with hospital staffs where necessary and shrugged off the misinformed neighbor.

I made an effort to give people information through a column I wrote while working at The News Observer in Blue Ridge, Ga. or in person. Honestly, I probably gave too much information when people asked, "How's Jimmy doing? or "What's new?" Thankfully, many patiently sat through my long winded response. It was therapeutic just to talk.

I'm sure Richardson's family doesn't care about the incorrect headlines and anonymous sources right now. They have a heavier burden. They have to deal with the sudden loss of a loved one. There are no words to console them after such a tragic accident. Hopefully, they will be allowed to grieve in private.

Wednesday, March 4, 2009

Keep the plastic!

The more I listen to the news of the virtual economic collapse of the system as we know it, I worry about one plastic card that's very important. It's not a credit card -- it's your insurance card.

When you begin looking for ways to cut your budget, you realize just how many insurance bills you have to pay each month, every six months or every year. There's insurance to cover your household items if you rent or own your own. There's insurance for the car. There's insurance for your health. There is insurance for long-term care or for disability. There is insurance in case you die.

This economy may be making you take a closer look at all of those insurance policies and those premiums that seem to be due all too quickly. When Jimmy had his brain stem stroke at 33, we did not have long-term care insurance. "Why do we need something like that?" I could hear myself thinking -- had the thought ever crossed my mind.

Sadly, the thought did not cross my mind, as we were too busy living! We were young. Of course, we had the insurance on the house, the cars and the all important life insurance. You live and die, right? We had to have the inevitable dying part covered.

I just Googled disability chances. One insurance Web site popped up saying that one out of every 106 people die, but one out of every eight people become disabled.

We were not prepared for disability. The health insurance, which became my most important piece of plastic in my purse, saved his life. It provided the care he needed to survive and to thrive after the stroke -- thanks to a stay at Shepherd Center in Atlanta, Ga.

Health insurance did not take care of the "next step." That's the place Jimmy went following his ICU stays and the rehabilitation. We had to piece together his care through veterans benefits and eventually Medicaid. The health insurance filled in the gaps when there were more hospitalizations, etc. It was essential to his survival.

As the economy keeps changing, I worry about what people are going to do. Health insurance is so important. Without it, Jimmy would have been shuffled immediately to a nursing home. With it, he was given a chance and was accepted at Shepherd Center.

I read an article several weeks ago on www.cnn.com, which mentioned a doctor who didn't have health insurance. He was between jobs, when something happened and he needed surgery. A key point was that the doctor -- a doctor -- didn't have health insurance. I thought he was brave he was to share his story. His story emphasized the point that there is sometimes a gap in coverage.

The doctor's story also highlighted a little known point about negotiation in the health care industry. Without insurance, he negotiated a less expensive price for his surgical procedure. You don't have to be a doctor to do this. Anyone can do it. You just have to ask.

If you have had insurance before, think back to those statements of benefit notices you receive in the mail. The doctor charges one price. The insurance company negotiates to pay a lower price. Your co-pay is typically deducted from the amount the insurance will cover. There is wiggle room.

I understand COBRA payments can be expensive and you may need to forget about the COBRA policy and shop for something with less benefits and lower monthly payments. You may have to get a larger deductible for the year.

Insurance is important to have. You need to have it when you are healthy, so it's there when you are not. If you can't find a low cost individual or family policy, consider checking into state and federal programs to help families. Many states offer insurance programs to cover children.

I know from experience it is overwhelming to see a bill for $275,000 for medical services. The shock is well cushioned with a health insurance card in your wallet.