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Sunday, February 28, 2010

Keeping Life in Balance

I believe life is all about balance. I don’t know how it works; I just know it does. If things are really going well, something bad will happen. If things are looking so down that the only way is up, you can bet something good will come along. I couldn’t count the times we had a bill come due, and if we didn’t have the money on hand, somewhere or somehow we would get a windfall to cover it.

One time when we were going through a really tough time, Jim cleaned out his wallet and found a $100 bill tucked away in one of those secret pockets so many wallets have. One day the phone rang and it was a woman calling from a place Jim had worked several years before. They had been trying to locate him to send a vacation check they owed him. The check came in the mail the same day we received a bill for the same amount.

In the past few weeks several things happened to remind me of balance. Thursday night I came home from work to discover a $100 check in the mail for winnings from a writing contest I had entered months ago.

Friday night, I went to a play for an evening of relaxation after a hard week at work. My friend, Cindy, and I had great seats, but I was sitting next to a woman who began to cough. She coughed and coughed. I’m thinking I really don’t want to catch something with a trip coming up soon.

When I got home from the play, I was looking forward to a good night’s sleep. I walked through the door and smelled something burning. I checked the usual suspects: my coffee pot, my curling iron, and my iron. They were all off. Following my nose I headed toward the basement to discover my heat pump was making an unusual humming sound. I checked the vents and no air seemed to be blowing out of them. I turned off the heat pump and tried to figure out what to do. The temperature was already dropping for the night. I called a friend and he said it sounded like it was my fan. He called a repair service and found out that the repair would be overtime whether the repairman came that night or waited until Saturday. The charge was estimated at $300.

The repairman, Steve, plugged my address into a GPS and only called for further directions after he was in my neighborhood. He had the heat pump up and running in no time. It was an inexpensive capacitor and not the fan so the repair came in at just a little more than $100 which pretty much equaled my windfall of a few nights before.

I hope this balance theory works for health too. My blood pressure was great, so I had high hopes that my blood work would be good news for a change too. Every year, my numbers just keep climbing. This year, they lowered the threshold on blood glucose levels, so that number was marked *HI. To top it off, I had a new one crop up. My uric acid levels were *HI also. I know enough to know that uric acid and gout go hand-in-hand.

Most, if not all, of my health problems are caused by the extra twenty pounds I’m carrying around. Aw, but for the good old days when I was merely overweight and not (according to those new lower thresholds again) obese. Another part of my life where I need to find balance is on my scales.

Just like after last year’s health fair, I am determined to lose weight and regain healthy lower numbers. Saturday at my granddaughter’s basketball game, I told my son that I was going to eat just enough to stay alive. Of course, I had just polished off a bag of Doritos because I didn’t have time to stop for lunch and the food choices were quite limited at the game.

“Apparently you need Doritos to stay alive,” he said.

“I think they have to be listed with the other staples,” I agreed.

OK, so maybe I can’t really eat just enough to stay alive and still have Doritos from time to time. I don’t believe in going to diet extremes. In the first place, dieting makes me really cranky. And after I work really, really hard to lose five pounds, I eat one normal meal and it’s baaaaack.

Experts say it’s all about balance. Eat healthy foods, exercise, and the next thing you know you look like a supermodel.

My dad struggled with weight all his life. He often said, “When you go on a diet and never eat the things you like, you may not live longer, but it sure seems like you do.”

Who wants to face life eating only food that is good for you and not food you crave and love? I don’t know about you, but it sure makes me want to eat a bag of Doritos. I would only eat a small bag though because I believe in balance. Oh, yeah, and eating only enough to stay alive.

Saturday, February 20, 2010

Let the Games Begin

I don’t know how the athletes are holding up, but watching the Olympics is wearing me out. I’ve not been to bed at a decent hour all week, and the Games have interfered with my TV routine too. I watched the selection of the twenty-four finalists on American Idol and Men’s Figure Skating at the same time. I began to feel positively artsy with the cultural overload.

This has been a glorious week for us ice skating fans. The drama of quads versus triple jumps plus spirals, steps, footwork, and transitions determined the difference between gold and silver. In my opinion, Evan Lysacek deserved the gold based on his overall performance. Sure, Yevgeny Plushenko had a power-house quad, but the rest of his program was mediocre.

Throughout the Olympics, athletes come to the games looking for a chance to outshine every other person competing in the same sport. For some, it’s the performance of a lifetime. Others stumble, fall, and jump back up to finish the competition or to smile and wave at the audience to let them know they are OK. Some athletes crave victory so much they choke and perform far below their potential.

We are surrounded by people who think one spectacular moment is more important than a lifetime of dedication to the details. They think jumps replace steps and a moment of glory is preferable to hanging in there to get the job done. The limelight must shine on them, or they lose interest.

Last night one of the announcers talked about how some of the top skiers showed up in style with 60 pairs of skies, technical advisors, and entourages. Bryon Wilson from Butte, Montana, in contrast, found support for his quest for an Olympic medal from hometown fundraisers like bake sales. The point being that whether the journey is easy or hard, once you are on the downhill slope and picking up speed, your chances are the same.

Those of us who have spent years advocating for a cure and effective treatment for Alzheimer’s are ready to leave the practice slope and compete with the big boys. Our journey for research funding has been a hard one—more in line with bake sales than big money and entourages. Alzheimer’s isn’t a trendy disease catching the attention of media or a bevy of superstars.

We are a disease represented by family members who know the pain of losing a loved one to Alzheimer’s. Sure, we have some celebrity spokespersons, and we appreciate all they do to promote awareness and help us in the battle for funding. David Hyde Pierce is one celebrity who has made Alzheimer’s awareness a personal mission. His steadfastness is unwavering.

To find funding in a tight economy takes years of persistence, dedication, and passion. Advocates return year after year to represent the 5.3 million Americans with Alzheimer’s. Without a cure, the number of cases will triple when the baby boomers age.

One sure thing—you can’t compete if you don’t show up for the event. If you cannot attend the Action Summit in March, lend your voice through an email or phone call to your legislators.

Tell your story and ask for their support to end this disease that steals a lifetime of memories. Support the 600 Alzheimer’s advocates who will be in Washington, DC, to compete for Alzheimer’s research dollars in a down economy and against a host of financial issues.

Instead of lighting an Olympic torch, we will light hundreds of candles for the Candlelight Vigil on March 8. Our candles shine in memory of our loved ones lost to the disease and with hope for a future without Alzheimer’s. When researchers find a cure for Alzheimer’s, we will cross that finish lane with arms held high in victory.

Saturday, February 13, 2010

Social Security Expedited for Younger Onset Alzheimer’s

The Social Security Administration announced this week that younger onset Alzheimer’s has been added to the list of conditions covered by its Compassionate Allowances Initiative. This is good news for families with a loved one who developed dementia prior to age sixty-five.

Those of us who have had family members with early onset dementia know how difficult and frustrating the system is to navigate. Early onset means your loved one is too young to receive regular social security or Medicare. Younger people with a disability must apply for Social Security Disability Insurance and Supplemental Security Income. Once a disability is determined, it can take years of denial and appeals before the disabled person receives benefits.

When Jim developed dementia at forty-nine, we discovered he was too young to receive many of the benefits in place to help older adults. The only financial assistance I was able to find for respite care was the Alzheimer’s Association. They had limited funds available, but even those limited funds helped. Jim was too young for respite funds through the Division of Aging.

Fortunately, I was employed and had health insurance. Because of my health insurance, we were able to get Jim the best treatment possible.

Before this latest development, the long delay for Social Security disability left many families financially destitute. Too often the person with dementia loses his job before being officially diagnosed. Job performance suffers from the earliest dementia symptoms. Loss of job could mean loss of insurance. In addition to the emotional toll, the dire financial strain associated with younger onset Alzheimer’s is overwhelming for the family.

Compassionate Allowances greatly reduces the wait time before benefits take effect. Not only will this relieve some of the financial burden of an expensive disease, it will also let people benefit from early treatment at the time when treatment is most effective.

Since 2003, advocates have shared their personal stories about the hardship caused by delays in Social Security disability benefits for their loved ones. Each year at the Alzheimer’s Association Advocacy Forum in Washington, DC, we have asked for a reduction in the wait time for Social Security benefits. Our voices were heard and the Social Security Administration hosted a public hearing in Chicago last summer to consider the validity of adding Alzheimer’s to the list of diseases to be fast-tracked for benefits.

Alzheimer’s at any age is a difficult disease for the entire family. In younger onset, children may still be in the home, and families have been forced to make difficult decisions. A child’s college fund may be used to provide medical or respite care for the parent with dementia. Some families may still have to make these tough choices, but others will find adequate financial relief from Medicare and Social Security Disability benefits.

Next month, the Alzheimer’s Association will hold its Advocacy Forum. Advocates will come from throughout the United States to bring awareness of how Alzheimer’s impacts our future as a nation. It is imperative that we invest in the future of our country by finding effective treatment for Alzheimer’s and by taking care of those with the disease.

Each year new advocates attend the forum. Advocates are updated on current statistics, attend a candlelight vigil, and receive training on how to make the most of their time with their legislators. We deliver packets of information to our senators and representatives, but more important than the alarming statistics is sharing our individual stories with them.

Advocates give a face to the disease. They share how devastating the disease is on a personal level. Some advocates only participate once, but others return year after year. This will be my tenth consecutive forum.

This will be the first forum for my friend, Cindy, and my twelve-year-old granddaughter. I took my grandson when he was twelve, and now it is my granddaughter’s turn. I have two smaller grandchildren and by the time they are twelve, they will probably have to take me. I hope each of my grandchildren experiences being an Alzheimer's advocate.

Alzheimer’s Association advocates chip away at the obstacles the disease throws in life’s pathway. Alzheimer’s addition to the Compassionate Allowances Initiative is a leap in the right direction. Families dealing with early onset dementia now have one less hurtle to overcome. Alzheimer’s is a disease fraught with problems, and eliminating the long wait for Social Security Disability is a victory.

Friday, February 5, 2010

Ambassador to Ambassador

I am an Alzheimer’s Ambassador and will participate in Memory Day later this month. On this special day, hundreds of Alzheimer’s advocates converge on the state capitol to discuss Alzheimer’s impact on the state of Missouri.

Besides being an Alzheimer’s Ambassador, I am a grassroots advocate for rural electric cooperatives. Earlier this week, my coworker, Brenda, and I participated in the legislative conference and visited our legislators on behalf of Central Missouri Electric Cooperative.

After a breakfast meeting, we trekked up the hill to the capitol. We took a shortcut through the Truman Building and stopped for a cup of coffee with my brother who works there. When we moved on to the capitol, we met other advocates leaving who informed us that everyone was on the floor, so we probably wouldn’t get to see our representatives. We dropped off cards at our representative’s offices and stopped at the office of Senator Delbert Scott.

“He’s in his office but is headed to the floor,” his legislative aide said.

The senator stopped to shake hands with us. “Would you like to walk with me?” he asked.

“Sure,” I said. “We will do a walk and talk.”

We discussed cooperative issues while we walked down a flight of stairs. When we reached the “Admittance by Invitation Only” door, he invited us in. He pointed to a bench and told us to sit there as long as we wanted. We wrote our names on a form, and settled in to see how the senate works.

Before long a group of oriental people came through a side door. A distinguished looking gentleman sat next to me on the bench while several others stood behind us. All cameras were trained in our direction. That really made us feel special.

Brenda and I took off our coats exposing our photogenic sweaters—mine a bright blue and Brenda’s a stunning tangerine. We looked like peacocks in a room of dignified dark suits.

Senator Scott introduced Brenda and me as his special guests. We stood to be recognized. The senate president pro tem stood to introduce Zhou Wenzhong, Ambassador from China, who was visiting Missouri in regard to St. Louis becoming a trade hub.

The distinguished gentleman to my right stood and the Missouri version of paparazzi kept their cameras rolling. I wanted to shake his hand, but wasn’t sure about Chinese protocol and didn’t want to offend him.

The senate recessed to visit the Chinese Ambassador in the lounge. The ambassador stood to leave, but turned to me and extended his hand. “I’m pleased to meet you,” he said. After our handshake, he shook hands with Brenda.

Another man in the group shook hands with us too. “I don’t know who you are,” he said, as if he should have, “but I’m sure you are honorable people to be here.”

For just a moment, I was taken aback, and felt like a star-struck gate crasher. Just by chance, Brenda and I experienced a historical moment in Missouri history.

We were on the evening news and our moment is caught on a State of Missouri archive tape. As a friend of mine said, “You’ve had one minute of fame and fourteen more to go.”

I don’t expect anything like this experience to happen again. What are the odds that another foreign ambassador would be at the Missouri State Capitol at the exact moment I am there?

It is likely that several Alzheimer’s Ambassadors will be among the hundreds of advocates visiting the state capitol on Memory Day. Some of the ambassadors are already my friends, and I will meet more at the state capitol. One thing is for sure, their participation in Memory Day is proof they are honorable people.