A Letter to the President: Sign the National Alzheimer’s Project Act

For the first time, I wrote a letter to the President of the United States! I asked him to sign the National Alzheimer’s Project Act (NAPA). It’s not that I never had anything to say to the President before, but no issue ever motivated me enough to actually write. Besides, you always know he isn’t going to read his letters anyway. I’m sure he isn’t too concerned about one person’s opinion, but if he gets a million emails sent to him, they will be a nudge in the right direction.

This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.

NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.

After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.

“What would cause that?” I asked.

"Most likely Alzheimer’s,” the doctor said.

We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.

By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.

Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.

I wrote my letter to the President because of Jim, and I’m sure  your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.

Copyright © December 2010, L. S. Fisher
http://earlyonset.blogspot.com

Frontotemporal Dementia (FTD)

I found an Alzheimer’s Weekly in my inbox that gave me hope that scientists may be on track to find effective treatment for the rare type of dementia Jim had. While Jim was living, we didn’t know exactly what disease he had, only that it was an Alzheimer’s type of dementia. Early on, the neurologist suspected Jim might have Pick’s disease, or a disease that didn’t even have a name.

When the autopsy report came in, I sent it to the neurologist to find out exactly what disease Jim had. All I knew for sure after reading the report was that Jim had no evidence of Alzheimer’s. The neurologist called me back in a few minutes and gave me the name of a disease I had never heard of: corticobasal degeneration, sometimes called corticobasal ganglionic degeneration.

The 7th Annual International Conference on Frontotemporal Dementia focused on a disease that so rare it affects only about 20,000 people.

Frontotemporal Dementia Facts:

•  Accounts for 2 – 10% of dementia
• The onset is usually between 40 and 65 years of age
• The expected lifespan is 5-10 years
• Can run in families
• Familial FTD is linked to the “tau” gene, chromosome 17

The Frontotemporal Family of diseases affects behavior and causes problems with language. Jim developed dementia at 49 years old and died at 59. His personality changed and his behavior became childlike at time. One of Jim’s first symptoms was problems with language—spoken and written. Jim could write letters and sometimes even have the correct letters in a word, but they might be jumbled. I had him write a grocery list for me once and he wrote “taper powels.” He later looked at the list and said, “Why did I write it like that?” He spoke in familiar phrases for a long time and was almost totally silent the last two years of his life.

The FTD diseases include:

• Pick’s Disease
• Primary Progressive Aphasia
• Semantic Dementia

Some doctors propose adding other diseases to the FTD classification and call the group Pick’s Complex. The diseases that may soon be included in FTD beneath the umbrella of Pick’s Complex are corticobasal degeneration and progressive supranuclear palsy.

I’ve never understood why corticobasal degeneration was not included in the various Alzheimer’s type of dementia. Jim's diagnosis after the mental exam was “dementia of the Alzheimer’s type.” And corticobasal is definitely that.

One of the differences between FTD and Alzheimer’s is that FTD usually begins with behavior and communication problems, where Alzheimer’s begins with memory loss.

FTD Symptoms:

• Personality and behavior changes
• Lack of empathy and impaired social interactions
• Language difficulty
• Compulsive behavior and repetitive actions
•  As the disease progresses—impaired motor skills, speech, and movement

Corticobasal degeneration is considered a movement disorder. Late in the disease, Jim kept falling and used a device that looked much like a giant baby walker to keep him in an upright position. He also had what is known as “alien limb” and didn’t seem to know what to do with his right arm. He clinched his right hand so hard for so long that he developed a pressure sore and had to have his little finger amputated.

People with FTD cannot stop or control their behavior—the frontal and temporal lobes are the first part of the brain to sustain damaged. Since FTD is typically a younger onset dementia it is often mistaken for a mental disease rather than a degenerative brain disorder. Out of control behavior, personality changes, and poor financial judgment are some of the symptoms that create strained relationships with loved ones. Caregivers are only human and although logically we know our loved one is not deliberately being difficult, sometimes feelings are hurt, or the caregiver feels unappreciated, unloved, and becomes depressed.

My experience is that it is best to take one day at a time—or even one hour at a time. I accepted Jim for the person he became, knowing that he would never again be the man he had been. It helps to know that some of the behavior can be controlled with medication and from time-to-time you see a fleeting glimpse of a familiar expression, or a genuine smile.

I always cherished the moments when I said, “I love you” and Jim replied, “I love you too”--especially, when he said it like he meant it.

Copyright © December 2010 L. S. Fisher
http://earlyonset.blogspot.com/

To read more about frontotemporal dementia:

http://alzheimersweekly.com/content/frontotemporal-dementia-2010-roundup

http://www.nia.nih.gov/NR/rdonlyres/97ABF1CB-8913-4877-B816-F35CAF126837/0/conv09n4.pdf