Dementia - First 5 years report - sharing experiences

Sharing experiences and looking for a Cure

Hello all, I'd like to share about my Mom's journey, even it's being tough to find a effective treatment for slow, stop or reverse the memory loss, at least I can share with you what we are learning about this devastating disease.

Her name is Terezinha. She is married and she is mother of 4, for whom she dedicated her life in while she worked hard in a Career in the Brazilian Education Department of SP State. Besides that, she gave a strong contribution to the Community, leading Social Programs like Parent's Education about fertility control and family planning (Billings Method). She used to be focused on healthy habits, such as being physically active (yoga), eating a well-balanced diet, never drinking alcohol neither smoking, and visiting doctors regularly.

She is not diabetic, her blood pressure usually is low. Cholesterol LDL had been more than 100 mg/dL and triglycerides more than 150 mg/dL, that's the reason she had been taking statin for a long period of her adult life. She had some pains in hands and feet joints.
Her parents also had neurological problems in the past, and both was diagnosed as Alzheimer's disease, around 1970~1995. In addition, 2 of her 15 siblings was diagnosed with neurological problems.

Around the year of 2013, when she was at 64 years-old, she had some falls on the street; she was drowsy while driving; and she had difficulty with sleep management. At this time, we started to watch her behavior full time, and it was the first time we asked her to avoid driving, and she didn't accept it.

In the MRI of 2013, it was reported white matter damages, compatible with leukoencephalopathy microangiopatic supratentorial. The doctor prescribed aspirin and statin.

She retired in 2015.

In 2016, she had a serious fall, heating her head and having a brain bleeding, which was well treated by a neurologist (this fall didn't cause any instant change in her brain function). But considering the white matter damages, we started to be concerned about dementia, and trying avoid this. The doctor prescribed a cocktail of medicines in order to prevent strokes and dementia, with the following drugs/suplements:
Resveratrol, Velija (Duloxetin Hydrochloride), Clopidogrel Bisulfate, Vytorin (Ezetimibe and Sinvastatin), Donepezil (acetylcholinesterase inhibitor, 5mg), Losartana 25mg (antihypertensive) and Glucosamine.

In february of 2017, she took a NOTCH3 testing to investigate the hypothesis of leukoencephalopathy (Cadasil), and the result was negative. Then, the doctor changed a little bit the prescription to:
Resveratrol, Vitamin D, Velija (Duloxetin Hydrochloride), Omega3, Clopidogrel Bisulfate, Rosuvastatin (5mg), Losartana 25mg (antihypertensive), Donepezil (acetylcholinesterase inhibitor, 10mg), Bromopride (to help the body accept the dose increasing for donepezil), and Glucosamine.

In the second semester of 2017, her memory loss got worst significantly, and we cannot leave her by herself anymore. She had another fall heating her knee. We visited the neurologist again, new brain exams, and then, he diagnosed it as Cerebral Amyloid Angiopathy (CAA). This is her current diagnosis, in which I don't believe 100%, because as far I've been finding out other CAA diagnosed people, they are much better with their brain function than my mom.
So, the doctor proposed a trial to do a immunosuppression, with 40% of chances to recover her brain function, by stopping auto-immune inflammation. We tried it, and it didn't work. Actually, it was the worst phase of her memory loss progression, instantly she lost much of her communication ability and memory. In addition, we had to go to emergency care in the hospital, and she received another diagnosis: fungal meningitis, due to the immunosuppression made, she was hospitalized for 1 month, in January of 2018. She was cured from meningitis. But her brain function never came back to normal. She started need to use diapers full time. She didn't accept pills anymore, only liquid medicines.

After all these inefficient trying, we gave up of traditional medicines, and stopped it. In this phase, we had to modify the lifestyle of our family to adjust with this new reality, in order to take care of her. It was a tough phase for us, we learned a lot about caregiving, resilience, and love. In this moment, we also took an (expensive) genetic exam, but honestly I still didn't understand the results, neither her doctor helped us enough about that.

We also tried acupuncture, for 4 weeks: no improvement.

After 4 months of homecare, she become to be aggressive. Then we decided to get help from a caregiver homecare institution. Also, we accepted to try Depakene (Valproic Acid) to control the aggressiveness. It worked and she has been taking Depakene until nowadays (we reduced the dose by half a few months ago).
Also, we found some supplements to allow her sleep well at night, which is a sedative compound of passiflora, mulungu, valerian and chamomile. Also, sometimes we give Miosan (Cyclobenzaprine) to muscle relaxation for sleep.

The most recent critical issue was a convulsion, in May 2019. It was 1 day treated in the hospital. This quick event occurred just after she had took a vaccine for the common cold.

In conclusion, for the moment, my feeling is: if we haven't tried so many "preventive" strong medicines, maybe her cognition would be so much better than it is now, considering the fact that after we stopped strong medicines (e.g. donepezil), her cognitive declining got slowed. So, for those ones who have mild cognitive impairment, I'd not recommend the use of Statin, Donepezil, neither Duloxetin. Immunosuppression neither.

RELATED ARTICLES:
This article confirms Cholinesterase Inhibitors May Not Benefit Mild Cognitive Impairment and Mild Alzheimer Disease Dementia:
https://www.ncbi.nlm.nih.gov/pubmed/30633043

This report discourages use of dietary supplements for brain health:
https://www.aarp.org/content/dam/aarp/health/brain_health/2019/06/gcbh-supplements-report-english.doi.10.26419-2Fpia.00094.001.pdf

HOPES:
I've been searching for on going trials and discoveries. I still believe that a cure exists somewhere!

This noninvasive wave treatment promises memory improves - How can we try this?
https://www.nia.nih.gov/news/noninvasive-brain-wave-treatment-reduces-alzheimers-pathology-improves-memory-mice

This promising clinical trial starting now phase II will test another way to improve memory and cognition, instead of targeting Aβ:
https://medcitynews.com/2019/05/company-starts-phase-ii-study-of-alzheimers-drug-and-its-not-going-after-amyloid-beta/

There is this promising clinical trial going to phase II:
https://www.sciencedaily.com/releases/2019/05/190513100559.htm

In Brazil, a discovery about a plant called Physalis promises recover neurons:
http://alzheimer360.com/planta-amazonica-criar-neuronios/

INSIGHTS ARE WELCOME !

Thank you.