September - October 2023 Newsletter | EARLIER TREATMENT NOT LATER!
My mission is to be the first woman in 4 generations to not develop Alzheimer’s Disease (AD). On my journey of discovering ways to mitigate my risk, I pass this information on to you in this Brain-Body-Health (BBH) Newsletter.
Alzheimer's Disease and Alzheimer's Disease Related Dementias (AD/ADRD) likely affects more than 6 million people in the U.S. and more than 55 million people worldwide.
AD starts 20 to 30 years before symptoms begin, yet we are hardly bringing this to the attention of our 30-40-year-old population. Refocusing our efforts on emphasizing PREVENTION and PRECISION MEDICINE is the paradigm shift we need. It is the vision presented at the 2023 Alzheimer’s Association International Convention (AAIC) along with a newly updated version of AD staging 0-7 with letters a,b,c,d similar to cancer biomarkers. With this rating system that starts before symptoms develop we are moving in the right direction. This will make for a quicker and easier diagnosis with sooner treatment options. Many physicians feel uncomfortable making a diagnosis of AD with our current tools. I still remember our mother’s diagnosis at UCI after a full day of tests including an MRI, neurological exam, and neuropsychological testing. At the follow-up visit with all of our family present, the doctor chose words carefully saying, “We believe the most likely diagnosis is AD”. Now, with blood and cerebral spinal fluid (CSF) biomarkers accurate diagnoses will be made making it possible for someone without symptoms and no family history to be diagnosed with AD. If we know 20 years beforehand we can use our knowledge base of epigenetic factors like SLEDS+S+S to begin reducing our risk. Genetic testing will be an important player in the biomarker work-up inclusive of beta-amyloid ratio 42/40, pTau 181, and NFLC (neurofilament-light-chain).
This new system is still under review and will replace the 2018 system:
Stage 0 - carries genes that guarantee development of AD, includes people with Down’s syndrome, 75% who develop AD.
Stage 1a - the beginning of evidence biomarker changes, denoted by the letter ‘a’, but have no changes in cognition or behavior.
Stage 2 -an individual may have abnormal biomarkers and very subtle changes in cognition or behavior.
Stage 3 - is roughly equivalent to the current presymptomatic stage known as mild cognitive impairment.
Stages - 4, 5, and 6 are equivalent to mild, moderate, and severe dementia. (Say goodbye to the mild, moderate, or severe categories. There's no mild, moderate, or severe cancer).
If you’ve been reading BBH you know by now that AD has many co-contributors including genetic and epigenetic, bad actors. For a moment pretend you are John Lennon writing ‘Imagine’. Come along with me into a world where we ALL have access to optimal personalized health care and ’Imagine’ at age 20 or 30, after a thorough exam you were told that you are at risk for neurodegenerative disease. If you had no cognitive changes but + biomarkers, you would be at Stage 1a. Your well-informed doctor would recommend treatment for these biomarkers. You would then be followed closely and become invested in your health following a personalized treatment plan. Now sing with me or hum the tune and take it from there… Imagine all the people living with personalized, scientific-based health plan without dementia… ah, ah, ah, ha.
LESSONS FROM COACHING:
Lately, I’ve been working with families whose parents or partners are in various stages of cognitive impairment presenting with challenging issues regarding safety and driving.
But first, a word for you CARERS!
Taking care of yourself while caring for a loved one with dementia is like climbing Mount Everest in a blizzard. You need to be in good shape (exercise), have a good sherpa (coach), and, have lots of gear (map of what you are going to do).
Climbing any mountain you can only do it well one step at a time and you don’t do it alone. “This is not a one-person job”, I recently told a friend whose wife has been diagnosed with AD. There are a number of resources for caregivers through the Alzheimer’s Association, your local senior center, and caregiving groups. Make sure you have ample resources to assist you on this arduous journey. Make a point of being with people who have walked this walk before with family members. Share honestly about your struggles and triumphs. It really does take a village to practice self-care while being with a loved one with cognitive impairment.
Probably one of the most difficult discussions is when your loved one needs to hand over the keys.
Most of us will have to face this someday. We can’t drive forever. Luckily some elders recognize it’s time to give up driving, but many will fight it tooth and nail. This is understandable with our current dependence on the automobile for everything under the sun. Driving and independence are seen as one in Western society. Planning ahead and recognizing warning signs of impaired driving is important. Trust your gut. If you’ve ridden with your loved one while they drive and find yourself uncomfortable then it’s time to start the conversation. Begin the conversation by tapping into their feelings and assuring them of your mutual goals: safety first and being independent. Next state your concerns as succinctly as possible and what you have felt and witnessed while driving with them. Saying farewell to driving is tough on anybody. It’s a loss of a privilege, and maybe a beloved car too. Fears around dependency may surface. Be sensitive to your loved one. Ahead of the talk, explore what you will need in place before the driving is stopped and how best to assess when the best time is to say goodbye to the car. My mother wanted to see her little red car in the wrecking yard where it was towed after her accident. Is there a ritual like one last drive, on a unbusy road or parking lot? Will your loved one need groceries or meals delivered if driving stops? This brings up the many possibilities of staying in one’s home and bringing in assistance or maybe moving to a senior residence, or Aunt Susie’s. Is the bus or Uber a possibility in your community?
A few warning signs: take note of dents, scuff marks on the car or tires, tickets, trouble parking, navigating curbs, and directions.
When my quilt sister, Marianne started parking at our group quilt meetings with half the car sticking out into the street, we all knew something was wrong. She also had the marks on her car to prove that she was nearing the end of her driving career. For my mother, an accident landed her in a trauma unit after she rear-ended a car, her chest taking the brunt of the impact on the steering wheel. The State Driving Test particularly the written test is not a good indicator of the capacity to drive well. Both Marianne and my mother had updated driver’s licenses. Both went on to need assisted home care and eventually moved to a senior residence with 24-hour care in place.
Bottom line: driving impairment is a sign of cognitive impairment indicating more care will soon be needed.
Everyone’s brain changes as we age. We not only physically slow down, but our thoughts slow, and it's harder to retrieve words or memories. That doesn’t mean you have AD, but it could mean the possibility that something is not right in Kansas, aka your BRAIN. Remember our acronym SLEDSSS, sleep, learning, exercise, diet, socialization, stress, and spirituality. Any of these variables can be wreaking havoc in your brain without you knowing it. That’s why laboratory and cognitive testing is indicated when there is a change. This just happened to friends who went traveling to Europe. Since they were spending most of their time together 24/7 the husband noticed his wife being more forgetful than usual. They followed up with a test and found that she performed well. This was good news but they didn’t stop there. They both knew they could benefit from learning how to improve their brain health but they wanted to know specifically what. We sat down together and began checking with a SLEDS+S+S assessment.
If you need help with caregiving responsibilities, do reach out for a free 15-minute consult and f/u dive into resources at BBH Coaching.
LESSONS FROM SCIENCE:
This article presented at the AAIC 2023 focuses on a prevention and precision medicine approach where Alzheimer’s disease pathology is stopped before the onset of dementia.
There are upcoming tests that will help with the diagnosis of AD and other neurodegenerative diseases. This blood test (soluble oligomers binding asay) SOBA for toxic proteins years before symptoms develop and differentiates between AD, Parkinson's, and Lewy body Disease.
In order to develop more accurate diagnoses tests are being developed that involve retinal scans, skin tests, and gut microbiome tests. More on this in the future. If you are interested in learning more please contact me for a consultation.
Clinical Trial Possibility:
Applications are now open for the Evanthea Dementia Reversal Trial! We need more people in trials. Do you know someone who has early AD or MCI?
This trial is being conducted at 6 sites across the nation. Locations of this trial are:
Folsom, CA
San Rafael, CA
Walnut Creek, CA
Hollywood, FL
Rocky River, OH
Nashville, TN
If you're interested, please fill out an application survey by clicking the link below. After you fill out the survey your responses will be assessed by one of their team members over the next 2-4 weeks, who will evaluate if you’re a possible candidate and contact you accordingly.
This is a revolutionary trial we believe has the potential to positively impact the future of medicine. This could change how early dementia and mild cognitive impairment are treated by looking at it from a precision medicine perspective and using lifestyle intervention.
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“If you want to go FAST, go alone. If you want to go FAR, go together."
- African proverb
To our optimized health!