Newcomer Introduction :)

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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KarenG
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Newcomer Introduction :)

Post by KarenG »

Greetings, Apoe4.Info community!

My name is Karen and I am a 47 year old 4/4. I have one family member with history of dementia- my paternal grandfather.

Feelings around such heavy information as ApoE4 status are fluid, changing from time to time, as mine have since I obtained my SNP info from 23andMe and FoundMyFitness/Rhonda Patrick’s genetic report in 2021. As of this week, hope and ease are predominant for me (if you’d asked a few weeks ago it would have been despair, despondence, and frustration!). The most recent positive turn results from some course corrections in “the big four”- diet, exercise, sleep, stress control. I have been relatively deep in the longevity/healthspan literature since ~2018, but adherence to best practice is another story. I visit the extremes and everything in between :). Compliance aside, it is so empowering to improve what is in one’s control. Plus, better choices make me feel physically and mentally great in the present with less cognitive dissonance around decisions like eating unhealthy food or drinking alcohol when I know it will adversely affect my sleep. The other factor in the renewed positivity- THIS WEBSITE! I spent time here in 2021 when I discovered my 4/4 status (it was very helpful), but then stopped focusing on ApoE4 as much. My attention was renewed upon review of the recent Nature article APOE4 homozygozity represents a distinc ... ’s disease (discussed elsewhere on this site). I returned to see this community’s reactions. Wow! Beyond that discussion I have been going from board to board, consumed by all of the thoughtful, vulnerable, supportive, analytical, informative contributions by this group. And the Wiki page! Fantastic :D

I want to introduce myself since I think I will be here often, but more so, I want to say THANK YOU. I am just so thrilled and appreciative that this resource is available. Thank you for all of the hard work needed to create and grow such an important and impressive undertaking.

Grateful,
Karen
NF52
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Re: Newcomer Introduction :)

Post by NF52 »

KarenG wrote: Sat Jun 08, 2024 10:01 am Greetings, Apoe4.Info community!

My name is Karen and I am a 47 year old 4/4. I have one family member with history of dementia- my paternal grandfather.

Feelings around such heavy information as ApoE4 status are fluid, changing from time to time, as mine have since I obtained my SNP info from 23andMe and FoundMyFitness/Rhonda Patrick’s genetic report in 2021. As of this week, hope and ease are predominant for me (if you’d asked a few weeks ago it would have been despair, despondence, and frustration!). The most recent positive turn results from some course corrections in “the big four”- diet, exercise, sleep, stress control. I have been relatively deep in the longevity/healthspan literature since ~2018, but adherence to best practice is another story. I visit the extremes and everything in between :). Compliance aside, it is so empowering to improve what is in one’s control. Plus, better choices make me feel physically and mentally great in the present with less cognitive dissonance around decisions like eating unhealthy food or drinking alcohol when I know it will adversely affect my sleep. The other factor in the renewed positivity- THIS WEBSITE! I spent time here in 2021 when I discovered my 4/4 status (it was very helpful), but then stopped focusing on ApoE4 as much. My attention was renewed upon review of the recent Nature article APOE4 homozygozity represents a distinc ... ’s disease (discussed elsewhere on this site). I returned to see this community’s reactions. Wow! Beyond that discussion I have been going from board to board, consumed by all of the thoughtful, vulnerable, supportive, analytical, informative contributions by this group. And the Wiki page! Fantastic :D

I want to introduce myself since I think I will be here often, but more so, I want to say THANK YOU. I am just so thrilled and appreciative that this resource is available. Thank you for all of the hard work needed to create and grow such an important and impressive undertaking.

Grateful,
Karen
Welcome, Karen!

On behalf of the Support Team and our entire community, I want to say how glad we are that you came back after your earlier visits and especially after reading the Nature article. Thank you for sharing your experiences and validating for others who may be exploring our forum, that it's normal to have "heavy" feelings around ApoE4, with the knowledge being both empowering and sometimes daunting.

Sounds like you have made terrific self-discoveries of how to make diet, sleep, exercise and stress reduction work for you. Add to that your sense of positivity, which has been shown again and again to be associated with cognitive resilience and longevity, and at your age you can confidently look forward to seeing articles in the future that say, as I heard multiple researchers say in 2023 in Amsterdam at an international conference: "Alzheimer's will become a disease that we can prevent in most people through lifestyle and early interventions (education, health care), monitor for its earlier signs in those at higher risk, treat well before cognitive symptoms occur, and manage--the same as we manage many other conditions that led to hugh rates of death in previous generations."

We appreciate your kind comments about the work that went into this forum and goes into it every day from people like you. It's a labor of love and purpose, one I hope you will continue to post on .

You are unlikely to need these resources, but just in case, here's a few gems:

The Primer is written by Stavia, a practicing M.D. with ApoE4/4.

The How-To Guide shows how to quote members (use the " icon in the upper right of any post) so they get an email notification of your post. It also shows how to use the Search function for topics, and how to subscribe to topics of interest.

Enjoy both hope and ease, Karen!

Nancy
4/4 and still an optimist!
KarenG
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Re: Newcomer Introduction :)

Post by KarenG »

What a delightful and welcoming response, Nancy! And the Amsterdam conference quote is a wonderful way to frame what, in many ways, is a hopeful time. Cheers, Karen
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TCHC
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Re: Newcomer Introduction :)

Post by TCHC »

KarenG wrote: Sat Jun 08, 2024 10:01 am Greetings, Apoe4.Info community!

My name is Karen and I am a 47 year old 4/4. I have one family member with history of dementia- my paternal grandfather.

Feelings around such heavy information as ApoE4 status are fluid, changing from time to time, as mine have since I obtained my SNP info from 23andMe and FoundMyFitness/Rhonda Patrick’s genetic report in 2021. As of this week, hope and ease are predominant for me (if you’d asked a few weeks ago it would have been despair, despondence, and frustration!). The most recent positive turn results from some course corrections in “the big four”- diet, exercise, sleep, stress control. I have been relatively deep in the longevity/healthspan literature since ~2018, but adherence to best practice is another story. I visit the extremes and everything in between :). Compliance aside, it is so empowering to improve what is in one’s control. Plus, better choices make me feel physically and mentally great in the present with less cognitive dissonance around decisions like eating unhealthy food or drinking alcohol when I know it will adversely affect my sleep. The other factor in the renewed positivity- THIS WEBSITE! I spent time here in 2021 when I discovered my 4/4 status (it was very helpful), but then stopped focusing on ApoE4 as much. My attention was renewed upon review of the recent Nature article APOE4 homozygozity represents a distinc ... ’s disease (discussed elsewhere on this site). I returned to see this community’s reactions. Wow! Beyond that discussion I have been going from board to board, consumed by all of the thoughtful, vulnerable, supportive, analytical, informative contributions by this group. And the Wiki page! Fantastic :D

I want to introduce myself since I think I will be here often, but more so, I want to say THANK YOU. I am just so thrilled and appreciative that this resource is available. Thank you for all of the hard work needed to create and grow such an important and impressive undertaking.

Grateful,
Karen
Hi KarenG

I just wanted to respond to your lovely note. I understand how hard it is to stick to the protocol. But I like to look at the positives. You've done a lot of good when you are compliant. And we all have little slips now and again, we're human after all. The fact that you've returned to this site and are still focusing on what you can do, is going to stand you in good stead. Be kind to yourself when you slip and get back on it as soon as you can.

Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
KarenG
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Re: Newcomer Introduction :)

Post by KarenG »

TCHC wrote: Fri Jun 14, 2024 1:49 am
KarenG wrote: Sat Jun 08, 2024 10:01 am
Hi KarenG

I just wanted to respond to your lovely note. I understand how hard it is to stick to the protocol. But I like to look at the positives. You've done a lot of good when you are compliant. And we all have little slips now and again, we're human after all. The fact that you've returned to this site and are still focusing on what you can do, is going to stand you in good stead. Be kind to yourself when you slip and get back on it as soon as you can.

Lindsey
Lindsey,

It’s so nice to meet you! Your words of encouragement resonate with me and I appreciate your response. Have a wonderful weekend :)

karen
BelesterHerreraRojas
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Re: Newcomer Introduction :)

Post by BelesterHerreraRojas »

Buenas noches o buenos días
Las y los saludo con mi corazón en la mano.

Mi nombre es Belester Herrera Rojas, Soy originario de una comunidad muy pequeña llamada Juchitán, Guerrero, México. Desde hace 37 años vivo en Petaquillas, a 10 Km de la Capital de Guerrero. Tengo 69 años de edad y hoy, 27 de julio del 2024, me enteré de esta página a través del libro "El fin del Alzheimer" del autor Dr. Dale E. Bredesen. Mi interés por unirme a este grupo es que, como dijera Garrik en el poema "Reír llorando" del autor Juan de Dios Peza, "Sufro un mal tan espantoso, como esta palidez del rostro mío..."
Desde el año 2017 observamos que a mi esposita se le empezaban a olvidar algunas cosas, ella tiene 75 años de edad, y cada vez con más frecuencia. Al principio cuando la llevaba al médico familiar, le decía casi en secreto para que ella no se diera cuenta y le causara algún malestar, - Médico a mi esposita se le empiezan a olvidar las cosas y eso para mí ya no es normal. Le recetó medicamentos para el deterioro cognitivo, jamás nos dijo que eran síntomas de Alzheimer, ni Yo se lo pedí ni él me lo sugirió que le hiciéramos algunos estudios del cerebro. A partir de este año, me hice cargo de ella, casi totalmente dependía de mí, digo casi, porque algunas actividades, las más simple como bañarse, comer, caminar, todavía las hacía sola bajo mi supervisión, La enfermedad fue avanzando y el médico que la antedía cada vez que íbamos le cambiaba la receta. Fue por iniciativa propia que buscamos a un neurólogo; por suerte o mala suerte, todas las preguntas que le hizo el Doctor las contestó bien, No conforme, le pedí que le hiciera en ese momento una resonancia magnética del cerebro de la cual, también salió bien, Mis hijos y Yo no nos dábamos por vencidos, queríamos saber qué enfermedad la estaba consumiendo cada vez más rápido, nunca nos imaginamos que fuera Alzheimer, enfermedad que ni siguiera Yo podía pronunciar. Fue hasta el mes de octubre del 2020, en plena Pandemia del COVID 19, que un neurólogo cubano la empezó a atender por vídeo llamada, para esas fechas ya venía padeciendo de incontinencia de sus esfínteres. En la primera consulta, no nos dijo que tenía, Nos dio la orden para hacerle varios estudios, entre ellos UNA TOMOGRAFÍA DE CRÁNEO SIMPLE, cuando vio los resultados, no me quería decir, no delante de ella, porque todavía se daba cuenta, aunque olvidaba rápido cualquier información que escuchara. Me aparté de elle para que me dijera lo que tenía; el resultado fue ALZHEIMER. Sentí que me moría en ese momento. A partir de esa fecha, aunque ya me siento mejor, no he dejado de llorar un solo día.
Creo en Dios y también hay momentos que he dejado de creer. Públicamente, en conferencia de prensa y cualquier otro lugar, me he atrevido a decir que mi esposita padece una enfermedad que ni el mismo Dios puede curar, el ALZHEIMER.
El 14 febrero del 2022, penúltima consulta que tuvimos con el neurólogo, le dije, por lo que había leído, que mi esposita estaba en la fase terminal y que es la que más tiempo dura, de 1 ó 2 hasta 20 años. Me dijo que me lo iba a decir, pero en otro momento, Me confirmó, porque Yo se lo pedí. Mi esposita llevaba tres días sin tomar agua, se mantuvo con los líquidos que tiene la comida. El Doctor sugirió que le hiciéramos una gastrostomía, era urgente, porque si ya había dejado de tomar agua, pronto dejaría de comer y cuando eso pasara ya no sería posible la gastrostomía. Le dije - Doctor, eso no va a mejorar su calidad de vida, al contrario, la va a empeorar, ¿Qué nos sugiere? Efectivamente, me dijo, no la merará. Te sugiero que lo platiquen en familia y en la próxima consulta me dicen lo que decidieron. Esa misma noche lo platicamos, mis dos hijos y Yo. Decidimos no hacerle la gastrostomía y que Dios decidiera lo que tenía que pasar. Esa misma noche comenzó a tomar agua, agua con limón ácido, Le doy el agua, la mantiene en la boca, le doy unas gotas de limón y así se pasa el agua. Ha habido algunas veces que ni con limón se toma el agua, lo que hago es darle fruta picada con agua; manzana, kiwi, mora, etc. Frutos cítricos, preferentemente, porque aparte del ALZHEIMER, padece DIABETES, Ésta ya no me preocupa, he aprendido a controlársela.
La última consulta con el neurólogo la tuvimos el 9 de mayo del 2022. Me dijo, - Belester, esta consulta es para ti, a tu esposa la doy de alta, ya no hay nada que hacer, - Ya déjala ir Belester, no hay marcha atrás; mi esposita ya era prácticamente una bebé recién nacida. Fue el primero en decírmelo, sentí que me moría Yo antes que ella. A partir de esa fecha, varias amistades, incluso, un hermano de ella también me lo dijo, que me ayudaría a hacer oración para entregársela a Dios. Le pedí que él hiciera las oraciones porque Yo no puedo, - Yo hago oración para que la alivie, no para que se muera.
Por recomendaciones del Neurólogo tomé terapias con una tanatóloga, 10 en total, me sirvieron de mucho, por lo menos todavía sigo vivo y con más fuerza para seguir atendiendo a mi esposita, hasta que las condiciones dicten otra cosa, con la determinación de Dios.

Petaquillas, Gro., 27 de julio del 22024

MODERATOR NOTE: TRANSLATION USING GOOGLE TRANSLATE:

Good night or good morning
I greet you with my heart in my hand.

My name is Belester Herrera Rojas, I am originally from a very small community called Juchitán, Guerrero, Mexico. For 37 years I have lived in Petaquillas, 10 km from the Capital of Guerrero. I am 69 years old and today, July 27, 2024, I found out about this page through the book "The End of Alzheimer's" by author Dr. Dale E. Bredesen. My interest in joining this group is that, as Garrik said in the poem "Laugh crying" by the author Juan de Dios Peza, "I suffer from an illness as horrible as this paleness of my face..."
Since 2017 we observed that my wife was beginning to forget some things, she is 75 years old, and more and more frequently. At first, when I took her to the family doctor, I told her almost secretly so that she wouldn't notice and cause any discomfort, - Doctor, my wife is starting to forget things and that is no longer normal for me. He prescribed medication for cognitive impairment, he never told us that they were symptoms of Alzheimer's, neither did I ask him to nor did he suggest that we do some brain studies. Starting this year, I took care of her, she almost totally depended on me, I say almost, because some activities, the simplest ones like bathing, eating, walking, she still did alone under my supervision. The disease progressed and the doctor that every time we went I changed the recipe. It was on our own initiative that we looked for a neurologist; Luckily or unluckily, he answered all the questions the Doctor asked him correctly. Not satisfied, I asked him to do an MRI of the brain at that moment, which also came out well. My children and I did not give in. defeated, we wanted to know what disease was consuming her faster and faster, we never imagined it was Alzheimer's, a disease that I couldn't even pronounce. It was not until October 2020, in the midst of the COVID 19 Pandemic, that a Cuban neurologist began treating her via video call. By then, she was already suffering from sphincter incontinence. In the first consultation, she did not tell us what she had. She gave us the order to do several studies, including A SIMPLE SKULL TOMOGRAPHY. When she saw the results, she did not want to tell me, not in front of her, because she still realized it, although He quickly forgot any information he heard. I turned away from her so she could tell me what she had; The result was ALZHEIMER. I felt like I was dying at that moment.
Since that date, although I already feel better, I have not stopped crying for a single day.
I believe in God and there are also moments that I have stopped believing. Publicly, at a press conference and elsewhere, I have dared to say that my wife suffers from a disease that not even God himself can cure, ALZHEIMER.
On February 14, 2022, the penultimate consultation we had with the neurologist, I told him, from what I had read, that my wife was in the terminal phase and that it is the one that lasts the longest, from 1 or 2 to 20 years. He told me that he was going to tell me, but at another time, he confirmed it to me, because I asked him to. My wife had not drunk water for three days, she stayed with the liquids in food. The Doctor suggested that we do a gastrostomy, it was urgent, because if he had already stopped drinking water, he would soon stop eating and when that happened the gastrostomy would no longer be possible. I told him - Doctor, that is not going to improve your quality of life, on the contrary, it is going to worsen it. What do you suggest? Indeed, he told me, he won't miss it. I suggest you talk about it as a family and in the next consultation tell me what you decided. That same night we talked about it, my two children and I. We decided not to do the gastrostomy and let God decide what had to happen. That same night he started drinking water, water with acidic lemon. I give him the water, he keeps it in his mouth, I give him a few drops of lemon and that's how he passes the water. There have been some times when he doesn't even drink water with lemon, what I do is give him chopped fruit with water; apple, kiwi, blackberry, etc. Citrus fruits, preferably, because apart from ALZHEIMER, he suffers from DIABETES. This no longer worries me, I have learned to control it.
We had the last consultation with the neurologist on May 9, 2022. He told me, - Belester, this consultation is for you, I am discharged your wife, there is nothing more to do, - Let her go Belester, there is no reverse; My wife was already practically a newborn baby. She was the first to tell me, I felt like I was dying before her. From that date on, several friends, including one of her brothers, also told me that they would help me pray to give it to God. I asked him to pray because I can't, - I pray for relief, not for him to die.
Based on the recommendations of the Neurologist, I took therapies with a thanatologist, 10 in total, they helped me a lot, at least I am still alive and with more strength to continue caring for my wife, until conditions dictate otherwise, with the determination of God.

Petaquillas, Gro., July 27, 22024
NF52
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Re: Newcomer Introduction :)

Post by NF52 »

BelesterHerreraRojas wrote: Sat Jul 27, 2024 9:34 pm Buenas noches o buenos días
Las y los saludo con mi corazón en la mano.

Mi nombre es Belester Herrera Rojas, Soy originario de una comunidad muy pequeña llamada Juchitán, Guerrero, México. Desde hace 37 años vivo en Petaquillas, a 10 Km de la Capital de Guerrero. Tengo 69 años de edad y hoy, 27 de julio del 2024, me enteré de esta página a través del libro "El fin del Alzheimer" del autor Dr. Dale E. Bredesen. Mi interés por unirme a este grupo es que, como dijera Garrik en el poema "Reír llorando" del autor Juan de Dios Peza, "Sufro un mal tan espantoso, como esta palidez del rostro mío..."
Desde el año 2017 observamos que a mi esposita se le empezaban a olvidar algunas cosas, ella tiene 75 años de edad, y cada vez con más frecuencia. Al principio cuando la llevaba al médico familiar, le decía casi en secreto para que ella no se diera cuenta y le causara algún malestar, - Médico a mi esposita se le empiezan a olvidar las cosas y eso para mí ya no es normal. Le recetó medicamentos para el deterioro cognitivo, jamás nos dijo que eran síntomas de Alzheimer, ni Yo se lo pedí ni él me lo sugirió que le hiciéramos algunos estudios del cerebro. A partir de este año, me hice cargo de ella, casi totalmente dependía de mí, digo casi, porque algunas actividades, las más simple como bañarse, comer, caminar, todavía las hacía sola bajo mi supervisión, La enfermedad fue avanzando y el médico que la antedía cada vez que íbamos le cambiaba la receta. Fue por iniciativa propia que buscamos a un neurólogo; por suerte o mala suerte, todas las preguntas que le hizo el Doctor las contestó bien, No conforme, le pedí que le hiciera en ese momento una resonancia magnética del cerebro de la cual, también salió bien, Mis hijos y Yo no nos dábamos por vencidos, queríamos saber qué enfermedad la estaba consumiendo cada vez más rápido, nunca nos imaginamos que fuera Alzheimer, enfermedad que ni siguiera Yo podía pronunciar. Fue hasta el mes de octubre del 2020, en plena Pandemia del COVID 19, que un neurólogo cubano la empezó a atender por vídeo llamada, para esas fechas ya venía padeciendo de incontinencia de sus esfínteres. En la primera consulta, no nos dijo que tenía, Nos dio la orden para hacerle varios estudios, entre ellos UNA TOMOGRAFÍA DE CRÁNEO SIMPLE, cuando vio los resultados, no me quería decir, no delante de ella, porque todavía se daba cuenta, aunque olvidaba rápido cualquier información que escuchara. Me aparté de elle para que me dijera lo que tenía; el resultado fue ALZHEIMER. Sentí que me moría en ese momento. A partir de esa fecha, aunque ya me siento mejor, no he dejado de llorar un solo día.
Creo en Dios y también hay momentos que he dejado de creer. Públicamente, en conferencia de prensa y cualquier otro lugar, me he atrevido a decir que mi esposita padece una enfermedad que ni el mismo Dios puede curar, el ALZHEIMER.
El 14 febrero del 2022, penúltima consulta que tuvimos con el neurólogo, le dije, por lo que había leído, que mi esposita estaba en la fase terminal y que es la que más tiempo dura, de 1 ó 2 hasta 20 años. Me dijo que me lo iba a decir, pero en otro momento, Me confirmó, porque Yo se lo pedí. Mi esposita llevaba tres días sin tomar agua, se mantuvo con los líquidos que tiene la comida. El Doctor sugirió que le hiciéramos una gastrostomía, era urgente, porque si ya había dejado de tomar agua, pronto dejaría de comer y cuando eso pasara ya no sería posible la gastrostomía. Le dije - Doctor, eso no va a mejorar su calidad de vida, al contrario, la va a empeorar, ¿Qué nos sugiere? Efectivamente, me dijo, no la merará. Te sugiero que lo platiquen en familia y en la próxima consulta me dicen lo que decidieron. Esa misma noche lo platicamos, mis dos hijos y Yo. Decidimos no hacerle la gastrostomía y que Dios decidiera lo que tenía que pasar. Esa misma noche comenzó a tomar agua, agua con limón ácido, Le doy el agua, la mantiene en la boca, le doy unas gotas de limón y así se pasa el agua. Ha habido algunas veces que ni con limón se toma el agua, lo que hago es darle fruta picada con agua; manzana, kiwi, mora, etc. Frutos cítricos, preferentemente, porque aparte del ALZHEIMER, padece DIABETES, Ésta ya no me preocupa, he aprendido a controlársela.
La última consulta con el neurólogo la tuvimos el 9 de mayo del 2022. Me dijo, - Belester, esta consulta es para ti, a tu esposa la doy de alta, ya no hay nada que hacer, - Ya déjala ir Belester, no hay marcha atrás; mi esposita ya era prácticamente una bebé recién nacida. Fue el primero en decírmelo, sentí que me moría Yo antes que ella. A partir de esa fecha, varias amistades, incluso, un hermano de ella también me lo dijo, que me ayudaría a hacer oración para entregársela a Dios. Le pedí que él hiciera las oraciones porque Yo no puedo, - Yo hago oración para que la alivie, no para que se muera.
Por recomendaciones del Neurólogo tomé terapias con una tanatóloga, 10 en total, me sirvieron de mucho, por lo menos todavía sigo vivo y con más fuerza para seguir atendiendo a mi esposita, hasta que las condiciones dicten otra cosa, con la determinación de Dios.

Petaquillas, Gro., 27 de julio del 22024

MODERATOR NOTE: TRANSLATION USING GOOGLE TRANSLATE:

Good night or good morning
I greet you with my heart in my hand.

My name is Belester Herrera Rojas, I am originally from a very small community called Juchitán, Guerrero, Mexico. For 37 years I have lived in Petaquillas, 10 km from the Capital of Guerrero. I am 69 years old and today, July 27, 2024, I found out about this page through the book "The End of Alzheimer's" by author Dr. Dale E. Bredesen. My interest in joining this group is that, as Garrik said in the poem "Laugh crying" by the author Juan de Dios Peza, "I suffer from an illness as horrible as this paleness of my face..."
Since 2017 we observed that my wife was beginning to forget some things, she is 75 years old, and more and more frequently. At first, when I took her to the family doctor, I told her almost secretly so that she wouldn't notice and cause any discomfort, - Doctor, my wife is starting to forget things and that is no longer normal for me. He prescribed medication for cognitive impairment, he never told us that they were symptoms of Alzheimer's, neither did I ask him to nor did he suggest that we do some brain studies. Starting this year, I took care of her, she almost totally depended on me, I say almost, because some activities, the simplest ones like bathing, eating, walking, she still did alone under my supervision. The disease progressed and the doctor that every time we went I changed the recipe. It was on our own initiative that we looked for a neurologist; Luckily or unluckily, she answered all the questions the Doctor asked her correctly. Not satisfied, I asked him to do an MRI of the brain at that moment, which also came out well. My children and I did not give in. defeated, we wanted to know what disease was consuming her faster and faster, we never imagined it was Alzheimer's, a disease that I couldn't even pronounce. It was not until October 2020, in the midst of the COVID 19 Pandemic, that a Cuban neurologist began treating her via video call. By then, she was already suffering from sphincter incontinence. In the first consultation, she did not tell us what she had. She gave us the order to do several studies, including A SIMPLE SKULL TOMOGRAPHY. When she saw the results, she did not want to tell me, not in front of her, because she still realized it, although she quickly forgot any information she heard. I turned away from her so she could tell me what she had; The result was ALZHEIMER. I felt like I was dying at that moment.
Since that date, although I already feel better, I have not stopped crying for a single day.
I believe in God and there are also moments that I have stopped believing. Publicly, at a press conference and elsewhere, I have dared to say that my wife suffers from a disease that not even God himself can cure, ALZHEIMER.
On February 14, 2022, the penultimate consultation we had with the neurologist, I told him, from what I had read, that my wife was in the terminal phase and that it is the one that lasts the longest, from 1 or 2 to 20 years. He told me that he was going to tell me, but at another time, he confirmed it to me, because I asked him to. My wife had not drunk water for three days, she stayed with the liquids in food. The Doctor suggested that we do a gastrostomy, it was urgent, because if she had already stopped drinking water, she would soon stop eating and when that happened the gastrostomy would no longer be possible. I told him - Doctor, that is not going to improve your quality of life, on the contrary, it is going to worsen it. What do you suggest? Indeed, he told me, she won't miss it. I suggest you talk about it as a family and in the next consultation tell me what you decided. That same night we talked about it, my two children and I. We decided not to do the gastrostomy and let God decide what had to happen. That same night she started drinking water, water with acidic lemon. I give her the water, she keeps it in her mouth, I give her a few drops of lemon and that's how she passes the water. There have been some times when she doesn't even drink water with lemon, what I do is give her chopped fruit with water; apple, kiwi, blackberry, etc. Citrus fruits, preferably, because apart from ALZHEIMER, she suffers from DIABETES. This no longer worries me, I have learned to control it.
We had the last consultation with the neurologist on May 9, 2022. He told me, - Belester, this consultation is for you, I am discharged your wife, there is nothing more to do, - Let her go Belester, there is no reverse; My wife was already practically a newborn baby. She was the first to tell me, I felt like I was dying before her. From that date on, several friends, including one of her brothers, also told me that they would help me pray to give it to God. I asked him to pray because I can't, - I pray for relief, not for her to die.
Based on the recommendations of the Neurologist, I took therapies with a thanatologist, 10 in total, they helped me a lot, at least I am still alive and with more strength to continue caring for my wife, until conditions dictate otherwise, with the determination of God.

Petaquillas, Gro., July 27, 22024
Buenos noches, Belester!

Mi nombre es Nancy y soy uno de los miembros del equipo de soporte en este foro.

En nombre de todos nosotros, quiero ofrecer mi más profundo agradecimiento por su publicación que vino de su corazón. No hay palabras que me permitan decirte completamente cuánto me conmueve tu amor por tu esposa. Has trabajado muy duro para averiguar lo que estaba pasando, a la vez que la protegías de estar molesta por el diagnóstico.

Tu decisión de ver a un neurólogo en octubre de 2020 fue muy valiente, y me alegro de que por fin hayas recibido un diagnóstico. Muchas familias y muchas culturas son reacias a usar la palabra Alzheimer y a contarles a sus amigos o familiares sobre ese diagnóstico. Mi propia familia era así cuando mi madre y varias de sus hermanas tenían Alzheimer. Tenemos que decir que esta no es una enfermedad de la que avergonzarse, y que no debería haber ningún estigma en hablar de ella. Muchas personas se beneficiarán de su coraje para hablar de esto públicamente.

Su neurólogo suena como una persona sabia y amable para decirle en 2022 que su enfermedad había progresado a la etapa grave y que USTED era la persona que necesitaba una consulta.

Sé que tu dolor y tus lágrimas son una señal de tu amor, pero si mi marido alguna vez escucha la misma noticia, quiero que recuerde suavemente que pasamos muchos años maravillosos juntos, con hijos y nietos. Ese día ya no me preocuparé por el mañana, y ahora sé que mi vida estará completa. Su thanatólogo puede guiarlo para ayudar a su esposa a hacer la transición final de esta vida a su próxima vida.

Los tendremos a ambos en nuestros corazones.

Nancy

English Translation:
Good evening, Belester! My name is Nancy and I am one of the Support Team members on this forum.

On behalf of all of us, I want to offer my deep thanks for your post that came from your heart. There are no words that will allow me to fully tell you how much your love for your wife moves me. You have worked so hard to find out what was happening, while also protecting her from being upset about the diagnosis.

Your decision to see a neurologist in October 2020 was very brave, and I am glad that at last you got a diagnosis. Many families and many cultures are reluctant to use the word Alzheimer's, and to tell friends or family members about that diagnosis. My own family was like that when my mother and several of her sisters had Alzheimer's. We need to say that this is not a disease to be ashamed of, and there should be no stigma to talking about it. Many people will benefit from your courage in speaking about this publicly.

Your neurologist sounds like a wise and kind person to tell you in 2022 that her disease had progressed to the severe stage and that YOU were the person who needed a consultation.

I know that your grief and tears are a sign of your love, but if my husband sometime hears the same news, I want him to gently remember that we had many wonderful years together, with children and grandchildren. On that day I will no longer worry about tomorrow, and know now that my life will be complete. Your thanatologist may guide you in helping your wife make that final transition from this life to her next life.

We will hold both of you in our hearts.

Nancy
4/4 and still an optimist!
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