Tuesday, January 13, 2015

UPDATE: January 15 is Last Day to Vote in Best Health Blog Contest!

Early Onset Alzheimer’s


UPDATE: Healthline added another day to the contest after the clock ran down! Please vote for Early Onset Alzheimer's Blog today. I thought the contest was over and we had ended in 5th place, but unless we get a lot of votes, we'll wind up in 6th. 

Please vote for Early Onset Alzheimer's Blog in Healthline's contest via the purple vote button!

Hi Everyone. This is the first blog post I've made about the Healthline Best Health Blog Contest. I'm not sure how many years I've been in the contest, but last year my blog,  Early Onset Alzheimer's blog, placed third. That doesn't seem like a possibility this year since tomorrow is the last day to vote and I'm 400 votes out of third. My blog is currently in 4th Place and I need your help to stay there. You can vote every 24 hours via Facebook or Twitter. I appreciate everyone who voted for me!

Healthline interviewed me for their Facebook page. Here is that interview:

Read about why Linda is participating in the Best Health Blog contest:
1) What inspired you to start blogging?
My husband, Jim, developed dementia at 49 years old. After a series of tests, the doctor told us that Jim had dementia of the Alzheimer's type. I knew nothing about Alzheimer's so my first reaction was, "Isn't there medicine for that?" That was the beginning of the journey where we learned that nothing would slow down the progression of the disease and that it was 100% fatal. Jim died in 2005, ten years after the diagnosis.
I reached out to the Alzheimer's Association before we had a diagnosis, and they became my lifeline. I called myself the Alzheimer's Association poster child because I took advantage of every program and service they offered. I became an Alzheimer's volunteer and advocate as a way of giving back to the Association and extending a helping hand to others who were becoming acquainted with the harsh reality of dementia.
2) What would you do with the money if you won?
I would use the money to help pay expenses to the Alzheimer's Advocacy Forum in Washington, D.C. in March. I'm already registered for the 2015 Forum--my fifteenth consecutive trip to advocate for Alzheimer's research and programs to help care partners cope. Each year, I join hundreds of other advocates as we don our purple "beauty queen" sashes and storm Capitol Hill.
3) What has been your best blogging moment?
My best blogging moment(s) are when someone tells me they have learned something helpful or found encouragement from one of my posts. I think my most thrilling moment was when the national Alzheimer's Association featured a story about Jim and me in their online newsletter with a link to my blog. That was the first time that more than 100 people visited my blog in one day.

Update: The contest ended on January 14, 2015. Early Onset Alzheimer's blog finished fifth thanks to everyone who voted. We had a total of 

Saturday, January 10, 2015

Has Stanford Found a Cure for Alzheimer’s?

It is with optimistic caution that I share the latest good news regarding Alzheimer’s research from Stanford University. They may have found the elusive and overdue cure for Alzheimer’s disease. Over the past fifteen years, I’ve heard exciting news about Alzheimer’s research that fizzled out after sailing through preliminary testing.

Is the Stanford University research going to be exception to past experience? I hope so!

I’ve always heard that you can’t keep doing the same thing and expect a different outcome. That is one reason that grants are often awarded to researchers who try a new approach to the same problem—What causes Alzheimer’s and how can it be cured?

The hallmarks of Alzheimer’s disease are deposits of beta-amyloid plaques between nerve cells and tangles of the protein tau that build up inside cells. Aging is the number one risk factor for developing the disease, but it is not a normal part of aging. Alzheimer’s is a destructive and always fatal brain disease, currently the sixth leading cause of death in the United States. Alzheimer’s relentlessly progresses from mild symptoms to the final stages requiring constant care. People with the disease live an average of eight years, but some live twenty years or longer.

Stanford’s approach is to boost the brains’ own immune response to prevent and cure Alzheimer’s. Researchers at Stanford University School of Medicine discovered that by blocking the protein EP2, microglia cells will continue to cleanse the brain of dangerous beta-amyloid deposits.

“The microglia are supposed to be, from the get-go, constantly clearing amyloid-beta, as well as keeping a lid on inflammation,” Dr. Katrin Andreasson, professor of neurology and neurological sciences at Stanford, said.

Microglia cells are your own personal defense system. Their function is to search and destroy dead cells and other debris in the brain such as the gummy deposits Alzheimer’s disease leaves in the wake of its destructive path.

Experiments on mice have been encouraging. Microglia goes about its business of protecting the brains of young mice. In older mice, the presence of EP2 proteins stopped the microglia cells from doing their job of destroying the dead cells. Another group of mice were genetically engineered to never develop EP2, and even when injected with beta-amyloid did not develop Alzheimer’s. Even more exciting news for people with Alzheimer’s—blocking EP2 in older mice reversed the memory loss!

Of course, a great distance separates animal testing and drug development. Stanford has hopes of developing a drug to block EP2. They believe a compound that only blocks EP2 would not have unnecessary side effects.

Have researchers finally found the key to unlock the mystery of Alzheimer’s disease? Time will tell if the Stanford study is the long-awaited breakthrough and the end of Alzheimer’s.
Early Onset Alzheimer’s


Please vote for Early Onset Alzheimer's Blog in Healthline's contest via the purple vote button!

Copyright © January 2015 by L.S. Fisher
http://earlyonset.blogspot.com

Wednesday, January 7, 2015

Baby It’s Cold Outside

According to my phone this morning the temperature was hovering at a balmy nine degrees and a cyclonic wind pushed the “real feel” way below zero. My last therapy appointment was today at 11:00 a.m. I dreaded going outside and would have loved to burrow under the covers and drink coffee. But, dang, I couldn’t miss my last appointment.

At least I was geared up for it to be my last one. I was a little concerned since Monday as I entered the school to watch my granddaughter play basketball, I tripped on the threshold. My right shoe came off and I landed splat on the floor a short nanosecond later. Holy cow, to add insult to injury, I landed on the very arm I had been working on in therapy.

After the initial pain and agony, I spent some quality hours on a heat pad. I downed some ibuprofen and didn’t feel too bad on Tuesday, my day off from therapy. By this morning, I was ready to give it a whirl.

Which brings me back to the weather. I layered my clothing and put on my heaviest coat before I headed out the door. When I got to Peak Performance the parking lot was much emptier than I’d ever seen it. Sure enough, they had a lot of cancellations. After my therapy, I headed for home. It was too darned cold to do anything else.

Cold weathers seems to breed misery. There’s nothing that says “Big Chill” like frozen water pipes or a car that won’t start. I remember the days when we drove an old vehicle, and Jim would get up every few hours to start it up so that we would be able to go to work.

Every summer we complain about how hot it is outside, but when winter hits, we decide that the heat of summer wasn’t so bad after all. There’s nothing like getting hit with an icy north wind to make you long for the dog days of summer.

This frigid winter weather can be hazardous to life and limb. The weather advisory on my phone warned of frostbite and hypothermia. During a cold snap in November, two homeless men died in our town. I can’t even imagine how frightening it would be to be homeless when wind chills are expected to be twenty below zero.

These type of temperatures are also dangerous for people with dementia. Seventy percent of people with dementia wander. While this is a concern in decent weather, severely cold weather presents a real and imminent danger. Even dressed for the weather, time outside must be limited. Too often people with dementia wander off without a coat, hat, and gloves.

Cold weather isn’t too bad in a well insulated house. I remember when we lived in a mobile home water froze overnight in a cup I had left in the sink. We’d crank the heat up as high as it would go, but the furnace couldn’t compete with the wind whistling around poorly installed windows and doors.

I feel for people who live in older homes that are not well insulated. Another time we lived in an older home and the propane lines froze up. We sent the kids to their grandma and grandpa’s house while we tried to get the furnace working again and keep the water from freezing. I remember us huddling under a blanket using a hair dryer to generate heat. If that happened now, I’d probably just check into a hotel until the spring thaw.

I shouldn’t complain too much about the cold while I’m warm and cozy. I know that not everyone can keep warm in this type of weather and that bothers me.

Yes, baby, it’s cold outside, but better days are coming. I guess the cheery thought is—spring is only seventy-one days away.
Early Onset Alzheimer’s


Please vote for Early Onset Alzheimer's Blog in Healthline's contest via the purple vote button!

Copyright © January 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Saturday, January 3, 2015

A New Year’s Revolution to End Alzheimer’s

This is the beginning of a new year, and I think it’s time that we organize a revolution against Alzheimer’s disease. The National Alzheimer’s Plan is to find a prevention or effective cure for Alzheimer’s by 2025. When I woke up this morning, I realized that is exactly 10 years from now!

Ten years may seem like a long time, but it isn’t. It takes an average of 12 years for a drug to traverse the path from research lab to the patient. Ninety percent of the drugs in preclinical testing are never tested on humans. Of the ones that make it to human testing only one in five will ever be approved.

So what can you do to join the revolution? Assuming you are not a researcher, your efforts can be focused in a different way. You can join the battle to End Alzheimer’s!

  1. Contact your legislators. Write letters, make phone calls, send emails, or visit them in district or D.C. The government funnels research dollars through the National Institutes of Health (NIH).  NIH annually submits a budget request which after modification is submitted to Congress from the President. Alzheimer’s research is underfunded at $480 million. In June, thanks to advocacy efforts, an additional $100 million was added to the NIH budget. To put this in perspective, NIH spends $6 billion (with a B) on cancer research, $4 billion on heart disease, and $3 billion on HIV/AIDS research annually. Researchers use grants to develop treatments. Do the math.
  2. Participate in Walk to End Alzheimer’s. More than 450,000 participants in 600 Walks nationwide raised awareness and funds for Alzheimer’s care, support, and research. The Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s research  and the world’s leading voluntary health organization for Alzheimer’s care.
  3. Contact your local chapter. The Alzheimer’s Association has 70 chapters that serve communities across the United States. Chapters are the front lines in the battle against Alzheimer’s. They will help you find the resources you need to navigate through the quagmire of living with Alzheimer’s.
  4. Arm yourself! No one goes into battle without equipment, ammunition, and a plan. To prepare yourself, acquire knowledge about the disease and develop a plan that will provide quality of life for the person with the disease and the care partner. Learn how to communicate and alleviate the stress caused by behavior.
  5. Build a support system. Surround yourself with friends, family, and loved ones who will support you. You need people that will be on your side even when the going gets rough. Build a medical team for the person with dementia and the care partner—primary physician, neurologist, and specialists in any other illnesses such as diabetes, heart disease, cancer.
  6. Keep a log of all medical information. Use pen and paper, a document, spreadsheet—whatever works for you—detailing all treatments, medications, side effects, tests. This will help you fill out medical forms and avoid unnecessary tests or medications that caused side effects.
  7. Enjoy life! Watch for moments of joy and don’t stop living. Don’t place everything on hold. Alzheimer’s is a disease that can last for decades. Learn to adapt to each stage and pursue activities that put a smile on your face. Love and patience overcome a lot of barriers.

More than five million people in the United States currently have Alzheimer’s disease and new cases are skyrocketing.  Alzheimer’s is the sixth leading cause of death and the only disease in the top ten without an effective treatment or cure. No cure. A hundred percent fatal.

Where is the outcry? The outrage? This country has never been one to sit on its hands and let a disease wipe out millions of people—but that is exactly what is happening with Alzheimer’s.

That is why it’s time for a revolution. This disease and related dementias—vascular dementia, Lewy body dementia, Frontotemporal degeneration, mixed dementia, Parkinson’s, Creutzfeldt-Jakob, normal pressure hydrocephalus, the rare dementias (including corticobasal degeneration)—has to stop. NOW.  It is time to arm ourselves with passion and knowledge to  eradicate Alzheimer’s disease once and for all. Won’t you become an advocate and join the fight to End Alzheimer’s?

Early Onset Alzheimer’s


Please vote for Early Onset Alzheimer's Blog in Healthline's contest via the purple vote button!

Copyright © January 2015 by L.S. Fisher
http://earlyonset.blogspot.com

Monday, December 29, 2014

The Broken Road

Broken Road - Photo by Jimmy Capps
As another year winds down, I find myself reflecting on the past year, and the years before that, and how I’ve arrived at this time and place. Have you ever stopped to ponder the small events  that shape our entire lives? The positive influences: a chance meeting, an unusual connection, making the right choice, joy, success, birth, and random acts of kindness. Life isn’t all smooth traveling. We have negative forces at work: accidents, disease, heartbreak, betrayal, deceit, failure, and death.

Everything that happens in life shapes who we are. The choices we make determine the quality of our very existence.

This year the broken road has climbed some high peaks and traversed through some deep valleys. I’ve lost loved ones this year. Most recently a cousin to a lingering illness, a niece to an unexpected death, and today my sister-in-law’s mother died from Alzheimer’s disease.

Life is tainted with a special type of sadness when a loved one is afflicted with dementia. Even with our small successes in Alzheimer’s legislation, this awful disease is still without a cure or effective treatment.

Alzheimer’s changed the course of my life. It took away the man I’d shared my life with, changed the color of the sky, and the taste of the air. It left a hole in my universe. Snapped away all my plans and dreams and left me with a different destiny.

It’s hard to believe that Jim died nearly ten years ago. I’m still sorting through a lifetime of mementos, and my heart breaks when I find one of Jim’s favorite shirts, a guitar pick, an old pair of glasses, an outdated drivers license—things that he once touched, used, or cherished. Old pictures memorialize slices of our lives, and stacks of videotapes provide a record of vacations, jam sessions, or a mundane day with a conversation long forgotten. The loss ambushes me from time to time.

But just like others who lost loved ones, I found more strength than I ever suspected lurked within me. Basically, when life crumbles, you have two choices: quit or move on. I like to say that I’m not a quitter so the second choice was a natural one for me. I conquer another piece of the broken road. Life goes on and life can be so good, sweet with many more smiles than tears.   

I had some major life changes this year—retirement, marriage, living in a different home, publishing two books, and watching time blur by and recede into the past. I have much to be thankful for as most of my family keeps on keeping on without missing too many beats.

When I think about life and all the “stuff” I’ve accumulated—toys, possessions, collections—it becomes clear that the important things in life can’t be bought. It is the intangibles that make life worth living: attitude, love, happiness, faith, hope, family, health…

To move forward in life, I can’t keep looking back at what once was, but must anticipate what is yet to be. After all, everything that happened along the broken road is imbedded in my memories, and seeped into my DNA. I’m comfortable with who I am and where I am at this stage of my life.

Today at the post office I saw a former co-worker. In fact, he was picking up the company mail. “Looks like retirement suits you,” he said.

“I love it!” I agreed. There’s something totally liberating about choosing what to do and when to do it. Oh, sure, I still have commitments and appointments that I keep, but most of my day is what I choose it to be.

“What are your plans for today,” Harold often asks me when we first wake up. He is a planner, I’m a seat of the pants type of person.

“I plan to drink this cup of coffee,” I say.

“Then what?”

“Drink another cup.” One thing I know—until I’ve had my coffee, I don’t want to think about the day beyond this moment, much less plan it. Besides, instead of spending time and energy to make plans, I’d rather be moving on down the road toward my destiny.

Early Onset Alzheimer’s


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copyright © Dec 2014 by L.S. Fisher
http://earlyonset.blogspot.com

Monday, December 22, 2014

Some Days Are Sad

I’m an optimistic person and would classify myself as happy—at least most of the time. Yet some days you get an early morning phone call that seems to just make the earth tilt a little different. I got one of those phone calls Friday morning.

I turn my phone’s sound off at night because the whistling, dinging, and notifications interfere with my sleep. Once I discovered the alarm still rang with the sound off, I just automatically turn it off at night. So when I heard the phone buzz, I picked it up trying to figure out why my alarm was silent. It wasn’t the alarm malfunctioning, it was a phone call from my son with bad news.

My forty-seven year old niece Krystal had passed away in the early morning hours. Shocking, unexpected news. Devastating news. The kind of news that can suck the air from your lungs. A cherished family member gone. Just gone. Forever from Earth.

My sorrow at losing a beloved niece cannot even compare to the crushing blow this was for her parents, husband, children, siblings, grandchildren, and those privileged to be in her inner circle. It was a big circle because Krystal had a loving heart and a gentle nature.

Today was her funeral. Three days before Christmas, and what? The hap- happiest time of the year? No. Hundreds of people gathered together to remember Krystal, honor Krystal, and to lay her to rest.

As the photos on the PowerPoint transitioned, we saw Krystal as a little girl, a teen-ager with big hair, in a beautiful white dress on her wedding day, cuddling her baby, with her family, turn around, turn around. Krystal with her little smile, sparkling eyes, and quiet sense of humor. I had watched her grow up in real time and the photos were fast-forwarding through the years.

When most people can’t find time to join one church, Krystal belonged to two. One a traditional Lutheran Church and the other a more modern non-denominational church. Both pastors, one traditional, and the other quite unconventional both spoke of the woman they had grown to depend on and cherish.

After words of comfort and prayers, we queued up with a long line of cars to go to the cemetery for the interment. After the long drive, we huddled beneath umbrellas as the rain began in earnest, shoes sinking into the soft earth. We shared umbrellas, coats, hugs, and sorrow as the rain beat down and we prayed the Lord’s Prayer.

We went inside the church to share a meal and comfort each other. To share the sorrow. As I talked to Mike, he said, “You know what it’s like, Aunt Linda.” I do know what it’s like to lose a beloved spouse. It’s like losing part of yourself. An unfillable void. “There are no words,” he said. I couldn’t agree more.

I know the pain of losing a parent, and the crushing blow of losing a brother. I do not, thank God, know what it is like to lose a child. We all want our children to outlive us. I can’t even imagine the heartache a parent feels at a time like this.

There’s no amount of optimism that can take away the sadness. Even a belief that those who have gone before us are rejoicing in Krystal’s rebirth, she’s not here with us. We sure would have liked to have kept her a whole lot longer.

Some days are just sad, and the rain keeps falling. There are no words.

copyright © 2014 by L.S. Fisher

        

Tuesday, December 16, 2014

MRI: Aligning Your Molecules

Magnetic Resonance Imaging (MRI, to most of us) is a way to use your own body composition to analyze what’s going on inside you. A strong magnetic field aligns the hydrogen protons in your body and then radio waves knock them out of their aligned position. I’m not ashamed to admit that knowing my molecules are being messed with kind of gives me the heebie-jeebies.

MRIs are a great diagnostic tool and a way to detect cancer or the brain damage from dementia. When Jim had an MRI, they had to sedate him because of his claustrophobia. In fact, during one test, he pushed the panic button, and they took him out of the machine. It was the results of an MRI that let us know that Jim had brain atrophy.

I recently had an MRI to determine the cause of numbness in my fingers and pain in my arm. Based on the data gained from the tests the neurologist ran, the culprit seemed to be in my spine. The best way to look at it—an MRI. Surely, that couldn’t be as bad as needles poked into me at random places.

This was my second MRI. The first was about two years ago. I suffer from occasional bouts of vertigo that causes severe vomiting for the first day or two. I can’t walk without help because I feel like I’m on a ship caught in the middle of a hurricane. I went to the emergency room, where they performed an MRI to rule out a brain tumor. Thankfully, the MRI was negative—or as I described it to my family, “negatory” on the brain.

I don’t remember much about that MRI since I was a little out of it. It was a blur. I did remember the part about not having any metal, so in preparation for the latest MRI, I carefully removed my earrings and my rings before I left home. When I looked at my hands, I noticed my glittery metallic nail polish. Could the polish have enough metal in it to make a difference?  I was unsure, so to be on the safe side, I removed it. The bad thing was the ruby color came off, but I could still see metallic sparkles on my nails. Suddenly, I became obsessed with removing it. I did another round of polish remover, but the sparkles just seemed to shine brighter.

Okay, now what? I have a super-duper nail buffer that will remove anything. The trouble was, I wasn’t sure where to find it. It wasn’t in the tray where I keep my polish and other nail paraphernalia. So the hunt was on. Harold suggested it might be in my travel bag. Sure enough there it was! With a good buffing, all the metallic glitter was gone.

At the hospital I changed into a gown and they got me as comfy as possible on the narrow hard bed as they readied me to slide me in the tube. “What kind of music do you like?” the tech asked me.

“Soft rock,” I replied. They plugged my ears, put a thick cloth over my eyes, and placed the headphones on. They placed a “panic button” in my hand in case I needed to get someone’s attention.

“Would you like a warm blanket?” she asked.

“Sure,” I replied.

After I was all situated, they slid me into the machine and the clanking began. I knew to hold perfectly still because that was important. I forgot to ask how long it was going to take. I thought maybe ten or fifteen minutes. I listened to song after song as the machine clanked and hissed.

Suddenly, I noticed the hair on my head seemed to be moving. Even my eyelashes were being pulled. I thought about freaking out when my cheeks felt like they were being lifted, but I held out pretty well until my nose started itching. It can’t be much longer, I thought, as another song began. Just then, the machine sounded different. Whew, must be winding down. But no, it just seemed to start all over again.

Finally, by the time they pulled me out, I had stopped being hopeful when the machine quieted down. I didn’t realize I was out of the machine until they removed the headphones and took the cloth off my eyes.

“How long did that take?” I asked.

“Oh, about twenty-five or thirty minutes.” Sometimes it’s better if you don’t know how long something is going to last.

And to make matters even better for me, I never read about how my water molecules would be used to create a signal that would be processed to form an image of my innards. The magnetic coils are turned on and off which creates the noise of an MRI. The sound of the machine can be equivalent to a jet engine at take-off, hence the ear protection.

I guess MRI’s are pretty miraculous and it’s a whole lot better than the exploratory surgery they used to do to find out what was going on inside. But still, it’s a pretty weird experience and not one I’d want to do again soon.

Copyright © by L.S. Fisher Dec 2014

http://earlyonset.blogspot.com

Wednesday, December 10, 2014

Alzheimer’s Advocacy at Work

For many years, I’ve been an Alzheimer’s volunteer and advocate and have attended the annual Advocacy Forum in Washington, D.C. for fourteen consecutive years. Because of my advocacy on the national level, the Greater Missouri Chapter asked me to be an Alzheimer’s Ambassador, to Congresswoman Vicky Hartzler and I gladly accepted.  

Yesterday, I received an email from Harry Johns, Alzheimer’s Association CEO, sharing good news about Alzheimer’s legislation. Congress has incorporated the Alzheimer’s Accountability Act into the Fiscal Year 2015 Omnibus Appropriations Bill. The proposed $25 million increase in Alzheimer’s research demonstrates our legislators’ focus on finding a cure for Alzheimer’s disease.

Why is the Accountability Act so important? It will require the NIH to submit an annual budget to Congress and the President. This budget will specify the necessary funding to reach our goal of finding effective treatment or a cure by 2025.

The Accountability Act has been a top priority for the Alzheimer’s Association and its sister organization, Alzheimer’s Impact Movement (AIM). My sister, Roberta, and I joined 900 other advocates to carry the message to Congress last spring during the Advocacy Forum.

Harry Johns says the bipartisan effort is a significant step toward winning the fight against Alzheimer’s. He said, “It demonstrates that our relentless efforts working together across our nationwide organization—including our dedicated Ambassadors and our hundreds of thousands of advocates—to make ending Alzheimer’s a national priority are making a real difference.”

Alzheimer’s is the most expensive disease in America and the cost will skyrocket as the baby boomers age. In 2014, the cost of Alzheimer’s will reach $214 billion, including $150 billion to Medicare and Medicaid. In contrast to the cost of the disease, only 0.25% of this total is committed to research—our only hope to end this human and financial crisis.

I have been fortunate to help in the effort to increase research funding for a disease that affects more than five million Americans and their families. We are gaining momentum and it is imperative that we relentlessly advocate until this devastating disease is eradicated.

Copyright © December 2014 by L.S. Fisher
http://earlyonset.blogspot.com