Today, I am climbing Mt. Ida, 12889′ in Colorado’s Rocky Mountain National Park. It is a perfect peak to honor my mom, Ida, who died from Alzheimer’s Disease (AD) on August 16 2009.
Over 5.3 million have AD just in the U.S. alone, and an estimated 47 million worldwide. It is the sixth leading cause of all deaths in the United States, and the fifth leading cause of death in Americans aged 65 and older. Whereas other major causes of death have been on the decrease, deaths attributable to AD have been rising dramatically.8
Between 2000 and 2006, heart-disease deaths decreased nearly 12%, stroke deaths decreased 18%, and cancer-related deaths decreased 14%, whereas deaths attributable to AD increased 47%. Every 70 seconds, someone in America develops AD; by 2050, this time is expected to decrease to every 33 seconds.8
While we know more today, we still don’t know enough. It remains the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed.
My mom died not knowing she had two children, a loving husband and eight brothers and sisters. She died not knowing where she was born or that she was sick. She died not knowing it was her son who held her hand, hugged her tightly and gently kissed her on her cheek. She died too early and for the wrong reason.
As I hike through an amazing wilderness area, my thoughts drift back in time …
It was about 5:00 pm on a Sunday when my brother called me to say “She’s gone” …
I know many of you have read my posts about Ida before, but this one is a bit different, please stay with me ….
I took a moment and immediately went into Manager Mode. “OK, her burial policy is … I will be there on … We need to call … ” I failed to let the moment sink in as I had been preparing for this day since I escorted Ida out of her home of 50 years in September 2006.
Worse day of OUR Lives
I stood next my mother in her comfortable bedroom. “Do you want to get a few things?” I suggested. “Where are we going?” she asked with a look of fear in her eyes. “Dad is recovering after his hospital stay and he wants you to stay with him.” I said, stretching the line between fact and fiction. “Oh, is he sick?” And with that, I knew I was doing the right thing, even if it was the worse scenario I could ever imagine.
Ida looked me in the eye and simply said “I don’t want to leave my home.” “I know, I know” I said under my breath as she put her forehead against my chest – trusting, childlike. It was all I could do not to collapse from my own emotions but I knew she would be safe and loved at the King’s Daughter’s and Son’s Home, close to her husband, large family of sisters, brothers and church friends.
As the next three years passed, I watched Ida, my mom, slowly slip into a land of living in the moment to not living at all. My brother was numb, as I was. Our father, Jim, had died three years earlier but his death at age 88 was not unexpected. Ida getting Alzheimer’s was totally unexpected.
Personally, I was totally unprepared – as a son, as an adult, as a human. Totally unprepared to oversee her care. But the devastation of her mind was beyond understanding.
Now seven years later, the impact of that experience is only beginning to appear. All I know is that I remain determined not to let her death be forgotten.
Climbing the World to End Alzheimer’s
The science around Dementia and Alzheimer’s Disease is complicated and difficult to understand. Most people choose not to try – until they have a loved one with the disease, or begin to show the signs of forgetfulness themselves.
That’s when reality slaps you in the face – there is absolutely nothing you can do once Alzheimer’s develops in your brain – you are on a somewhat slow path to death.
That was the harsh reality that I dealt with in late 2006. But there was something I could do – see that Ida was safe, loved and comfortable. And I could do something else; not let her death became another nameless statistic in the list of millions who have died from this disease. Thus my “Memories are Everything” climbs were born and since, 50 million people have followed my climbs and almost 1/3 of a million dollars raised for research.
To be clear, this is not about my climbing, it’s about Alzheimer’s, but without my climbing, I wouldn’t have 2 million annual followers and a loyal team of connections thru social media. So it is an ‘and’, not an ‘or’.
Climbing for Research
Since Ida’s death, researchers have learned a lot about AD. for example, that the hallmark beta-amyloid plaques begins to form years, if not decades, before someone begins to shows signs of extreme forgetfulness. They have excluded many of the myths about the causes of AD, for example that Alzheimer’s is caused by aluminum, flu shots, silver fillings, or aspartame.1
Climbing for Education
However even with all this information out there, nearly 60 percent of people worldwide incorrectly believe that Alzheimer’s Disease is a typical part of aging4 – it’s not – it is a disease just like Cancer or Heart Disease. In that same study, 40% believed AD was not fatal.
So when I talk about education and awareness, these are the scary figures that push me up a mountain.
What can be done to prevent getting Alzheimer’s? They have found a link between a possible role of lifestyle factors. For example a healthy diet, especially the Mediterranean Diet and the so called MIND diet can reduce the risks.2 Also exercise, being social, and doing things that challenge your mind might lower your risk.3
Again, at now age 60, I’m trying to model the very lifestyle I advocate.
For all the bad news, there is a lot of good news around funding. In 2009, funding for Alzheimer’s research thru the National Institutes of Health in the US, was about $500M annually, for 2017 it is close to $1 Billion5. Most experts believe it will take an annual research budget of $2 Billion to make significant progress. In 2017, Cancer will receive $6B in funding, HIV/AIDS, $3B.
Organizations like the Alzheimer’s Association and UsAgainstAlzheimer’s have done yeoman’s work to lobby Congress. Individuals have made countless phone calls, personal visits and even walks in Washington to shine light on this epidemic.
A slew of not-for-profit organizations have made amazing progress in understanding the root causes of Alzheimer’s. The Cure Alzheimer’s Fund was able to create “Alzheimer’s in a Dish” so that researchers could cut years off the trial and error research approach by testing drugs in the lab and not on humans. The CAF is privately funded and one I highly support thru my efforts.
Yet for this progress, the lack of human volunteers throttles the pace of progress. It is estimated that 80% of all al trials fail due to lack of enrollees. The Banner Alzheimer’s Institute has a simple and effective program for anyone who want support enroll in a study – many are simple non-invasive mind tests not involving drugs.
Finally, there are many creative approaches, such as Help Stamp Out Alzheimer’s. H.R. 3092, a bill that has been submitted to the U.S. House of Representatives for issue of an Alzheimer’s Disease Research Semipostal Stamp is an easy and obvious source of funding – with no new taxes. Please contact your representative to show your support – I have. Also, please comment on the USPS website showing your support. A similar stamp for Breast Cancer Research Semipostal has raised over $77.6 million for breast cancer research.
I often call caregivers the silent victims. Individuals quit their jobs, go bankrupt and more to stay at home with a mom or dad. Turnover in nursing homes is 100% due to low pay and stress.7
Again, the equation is upside down between preventative/cure and care: “the United States is spending more than $200 billion a year to care for Alzheimer’s patients, we are spending just four percent of that amount on research.” 6
Of course, Alzheimer’s is a human disease that strikes worldwide – almost 50 million people. In almost every modern country, there is some organization that provides support for caregivers and leads research in their country. Alzheimer’s Disease International leads the way for many smaller countries.
The Alzheimer’s Society in the the UK is a great organization where finding a cure for Alzheimer’s has been made a national priority in that country. In Canada it is the Alzheimer’s Society and in Australia, the Alzheimer’s Australia. Google Alzheimer’s and your country to find who your local organization.
Alzheimer’s Killed my Mother
I don’t know how else to say this. There is so much gloom and doom out there. Many non-profits use scare tactics to raise money. But this is the simple fact ; Alzheimer’s kills and there is absolutely nothing you can do about it – today.
In spite of all of this, I remain optimistic that a cure will,be found. A way to slow AD will be found and hopefully caregivers will receive more support from tax relief to higher quality and affordable institutional care to in-home alternatives.
But nothing will happen without our collective energy.
Please Act Now
If you do nothing else today, sign a petition on these links here or here to tell Congress to act (believe it or not, these things work). Also please consider making a donation of any value to any of these organizations, or one of your choosing.
Together we can stop Alzheimer’s.
Memories are Everything