Dementia - First 5 years report - sharing experiences

Posted by rafaeln27 @rafaeln27, Mon, Jul 15 4:50pm

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.

Hello @rafaeln27 Welcome to Mayo Connect and the Caregivers discussion group. It is good to have you here.

I am sorry to read of your mother's journey with dementia. I am Scott and my mother-in-law (MIL) suffered from dementia for over a decade. You are right when you say there are no treatments that reverse dementia once it has begun in the brain. That said, I do know there is a large amount of scientific study being undertaken to better understand the causes so they can avoid it in the future or better fight it once it begins.

A couple of the medicines my MIL took did seem to slow her decline down early in her journey, but nothing was able to stop the disease. I know of the challenging aspects is that there are so many related, but different, forms of dementia. Plus as with all diseases of the brain, what works for one patient may not work for another. I know in the case of my wife's brain cancer what worked for her was often very different than what worked for others. We always relied on the best judgement of the medical professionals we trusted the most.

I am glad you are chronicling your mother's experiences with the disease as that may well help someone in the future. I noted you are from Brazil! A fabulous country and one of my favorties to visit. What part of Brazil are you from?

I will close this post with asking how is your mom doing now?

Strength, courage, and peace

REPLY
@IndianaScott

Hello @rafaeln27 Welcome to Mayo Connect and the Caregivers discussion group. It is good to have you here.

I am sorry to read of your mother's journey with dementia. I am Scott and my mother-in-law (MIL) suffered from dementia for over a decade. You are right when you say there are no treatments that reverse dementia once it has begun in the brain. That said, I do know there is a large amount of scientific study being undertaken to better understand the causes so they can avoid it in the future or better fight it once it begins.

A couple of the medicines my MIL took did seem to slow her decline down early in her journey, but nothing was able to stop the disease. I know of the challenging aspects is that there are so many related, but different, forms of dementia. Plus as with all diseases of the brain, what works for one patient may not work for another. I know in the case of my wife's brain cancer what worked for her was often very different than what worked for others. We always relied on the best judgement of the medical professionals we trusted the most.

I am glad you are chronicling your mother's experiences with the disease as that may well help someone in the future. I noted you are from Brazil! A fabulous country and one of my favorties to visit. What part of Brazil are you from?

I will close this post with asking how is your mom doing now?

Strength, courage, and peace

Jump to this post

Hello @IndianaScott . Thanks for replying.

I'm from SP State.

My Mom's is living in a home care institution. She demands caregivers for everything, like eating, shower, toilets, moving, etc. She stays quiet most of the time. Rarely, she says a word, but no nexus.

Is there a post from you detailing about your mother-in-law journey? And about your wife?

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@rafaeln27

Hello @IndianaScott . Thanks for replying.

I'm from SP State.

My Mom's is living in a home care institution. She demands caregivers for everything, like eating, shower, toilets, moving, etc. She stays quiet most of the time. Rarely, she says a word, but no nexus.

Is there a post from you detailing about your mother-in-law journey? And about your wife?

Jump to this post

Good evening, @rafaeln27 I have traveled a bit in Brazil, but not much to Sao Paulo beyond the city of Sao Paulo. My favorite (so far) has been Minas Gerais and some of the small villages of the Jequitinhonha Valley there. Even more than my visits to the Amazonas, Macapa, Fortaleza, Rio, and Foz do Iguacu. I was just in Belo recently for a wedding of a longtime friend and my wife's grandfather mined in Diamantina many decades ago. I'm also a lifelong afinianado of your national drink, cachaca! My kingdom for a bottle of Valle Verde! In some ways it is a small world!

While I have addressed many of the challenges my wife faced in various posts here, she preferred to maintain her battle as a private matter and to honor her I continue that, primarily speaking of my challenges as a caregiver or with individuals privately. If you want to know more please feel free to message me here on Connect. She was 49 when she was diagnosed with brain cancer and fought her war for over 14 years, the last 1 1/2 in home hospice care. I was always her primary caregiver. She, too, required caregiving help for all her daily needs. Her's was a complicated case as it was influenced by her being left-handed, having struggled through a coma, paralysis, and never regaining her pre-cancer mental capacities (as well as her physical ones). I have tried to write about my wife's war, but it is still too raw and intense for me to revisit those years in detail. Perhaps one day…

My mother-in-law was a different situation. She suffered from frontal temporal dementia. The family was in denial for much of her early stages and lost some very precious opportunities to interact on many important issues with her. Very quickly, within two years or so she became bed bound and lost all her abilities to communicate, take care of herself, etc. She was totally dependent on caregivers as well for the next 10 years and then passed after contracting pneumonia. She had been the owner of her own small business for many years, was very active, and fluent in two languages besides English. So far there has been no indication of this disease effecting any of her four daughters or one son. Thankfully!

Please keep in touch and ask me any questions you might have!

Obrigado,
Strength, courage, and peace!

REPLY
@IndianaScott

Good evening, @rafaeln27 I have traveled a bit in Brazil, but not much to Sao Paulo beyond the city of Sao Paulo. My favorite (so far) has been Minas Gerais and some of the small villages of the Jequitinhonha Valley there. Even more than my visits to the Amazonas, Macapa, Fortaleza, Rio, and Foz do Iguacu. I was just in Belo recently for a wedding of a longtime friend and my wife's grandfather mined in Diamantina many decades ago. I'm also a lifelong afinianado of your national drink, cachaca! My kingdom for a bottle of Valle Verde! In some ways it is a small world!

While I have addressed many of the challenges my wife faced in various posts here, she preferred to maintain her battle as a private matter and to honor her I continue that, primarily speaking of my challenges as a caregiver or with individuals privately. If you want to know more please feel free to message me here on Connect. She was 49 when she was diagnosed with brain cancer and fought her war for over 14 years, the last 1 1/2 in home hospice care. I was always her primary caregiver. She, too, required caregiving help for all her daily needs. Her's was a complicated case as it was influenced by her being left-handed, having struggled through a coma, paralysis, and never regaining her pre-cancer mental capacities (as well as her physical ones). I have tried to write about my wife's war, but it is still too raw and intense for me to revisit those years in detail. Perhaps one day…

My mother-in-law was a different situation. She suffered from frontal temporal dementia. The family was in denial for much of her early stages and lost some very precious opportunities to interact on many important issues with her. Very quickly, within two years or so she became bed bound and lost all her abilities to communicate, take care of herself, etc. She was totally dependent on caregivers as well for the next 10 years and then passed after contracting pneumonia. She had been the owner of her own small business for many years, was very active, and fluent in two languages besides English. So far there has been no indication of this disease effecting any of her four daughters or one son. Thankfully!

Please keep in touch and ask me any questions you might have!

Obrigado,
Strength, courage, and peace!

Jump to this post

Just “liking” this post seems a sacrilege, but my “heart” is heartfelt. These are powerful words, even more powerful emotions. Thank you for sharing.

REPLY
@IndianaScott

Good evening, @rafaeln27 I have traveled a bit in Brazil, but not much to Sao Paulo beyond the city of Sao Paulo. My favorite (so far) has been Minas Gerais and some of the small villages of the Jequitinhonha Valley there. Even more than my visits to the Amazonas, Macapa, Fortaleza, Rio, and Foz do Iguacu. I was just in Belo recently for a wedding of a longtime friend and my wife's grandfather mined in Diamantina many decades ago. I'm also a lifelong afinianado of your national drink, cachaca! My kingdom for a bottle of Valle Verde! In some ways it is a small world!

While I have addressed many of the challenges my wife faced in various posts here, she preferred to maintain her battle as a private matter and to honor her I continue that, primarily speaking of my challenges as a caregiver or with individuals privately. If you want to know more please feel free to message me here on Connect. She was 49 when she was diagnosed with brain cancer and fought her war for over 14 years, the last 1 1/2 in home hospice care. I was always her primary caregiver. She, too, required caregiving help for all her daily needs. Her's was a complicated case as it was influenced by her being left-handed, having struggled through a coma, paralysis, and never regaining her pre-cancer mental capacities (as well as her physical ones). I have tried to write about my wife's war, but it is still too raw and intense for me to revisit those years in detail. Perhaps one day…

My mother-in-law was a different situation. She suffered from frontal temporal dementia. The family was in denial for much of her early stages and lost some very precious opportunities to interact on many important issues with her. Very quickly, within two years or so she became bed bound and lost all her abilities to communicate, take care of herself, etc. She was totally dependent on caregivers as well for the next 10 years and then passed after contracting pneumonia. She had been the owner of her own small business for many years, was very active, and fluent in two languages besides English. So far there has been no indication of this disease effecting any of her four daughters or one son. Thankfully!

Please keep in touch and ask me any questions you might have!

Obrigado,
Strength, courage, and peace!

Jump to this post

Glad to hear about your trips to Brazil. MG is really a nice state, and my Mom's birth state, by the way.
Thank you for sharing about your MIL and your wife.
Yes, let's keep in touch. I'll ask some questions later. Thank you very much.

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Your post is most informative. Thank you

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@rafaeln27 I also welcome you to Connect. It sounds like you have had a very difficult caregiving journey. Your mother isn’t well, but she’s in a safe place where she gets the care she needs. But, how are you doing? Are you able to take some breaks now and take care of yourself? I hope you can take some time to heal yourself and your family. Please let us know how you, your mother and family are doing. We care. Becky

REPLY
@becsbuddy

@rafaeln27 I also welcome you to Connect. It sounds like you have had a very difficult caregiving journey. Your mother isn’t well, but she’s in a safe place where she gets the care she needs. But, how are you doing? Are you able to take some breaks now and take care of yourself? I hope you can take some time to heal yourself and your family. Please let us know how you, your mother and family are doing. We care. Becky

Jump to this post

Thank you @becsbuddy , sounds you understood my situation. I appreciate it. Yes, for the moment, I am in the U.S. (that's how I got known about Connect: a person, who I met here in San Diego, recommended it to me). My sisters are giving the care support to my Mom's caregivers.

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