Hello,
At age 63, I am the youngest of five siblings and I fear will we sooner or later suffer from dementia since our mother, her mother, and all her siblings did. I don't have any symptoms but the issue is on my mind, especially since my brother is ten years my senior and the most likely to be headed for the dreaded slow goodbye.
I'm interested in participating in clinical trials that address early detection and treatment. I also welcome feedback from those with knowledge and information on how to get involved.
I got on Lequembi through my neurologist. I began seeing the neurologist when my foggy brain became obvious to me and to others. I went through a battery of various different tests over many months and…bingo—I won the jackpot—early/mid onset Alzheimer’s!
Several months ticked by while I waited to be approved to receive Lequembi. Since I live in a rural area, the next challenge was finding a facility that would give me the appropriate infusions. A couple of months ticked by; finally we found a place relatively nearby! Success! So, yes the side effects—which I hadn’t been prepared for—are onerous, indeed. The effects last roughly 24-48 hours after each infusion. Then, I’m back to a happy, healthy normal, returning to my happy, healthy, normal life. I am tough, and, this—although not perfect—beats its alternative. Enough said!
Hello,
At age 63, I am the youngest of five siblings and I fear will we sooner or later suffer from dementia since our mother, her mother, and all her siblings did. I don't have any symptoms but the issue is on my mind, especially since my brother is ten years my senior and the most likely to be headed for the dreaded slow goodbye.
I'm interested in participating in clinical trials that address early detection and treatment. I also welcome feedback from those with knowledge and information on how to get involved.
if you go to the Web-Sites of the larger, well-known medical institutions ie MAYO, John Hopkins, Duke, UNC, Vanderbilt etc they often have categories for clinical trials that they are conducting. I'm sure the Alzheimer's foundation does as well. Just gotta dig for them! For sure your Physician should be aware of any that are being conducted. That may be a long shot but it doesn't hurt to ask!
Chris Gautier OR Santosha | @santosha | Jul 31 10:00am
Hi Everyone!
I am new in this group, though I have participated already for some time at the Epilepsy Group here at Mayo Clinic Connect. I have temporal lobe epilepsy and some predisposition for Alzeimer's due to the genetics of my family.
My mother has Alzheimer's and is already in the moderate stage. Because of my epilepsy and also my mother's Alzheimer's I do read, investigate and study a lot about both diseases. I have read the book of Dr. Dale Bredesen (The End of Alzheimer's) and follow Dr. David Perlmutter who works closely with Dr. Dale Bredesen, whom I enjoy even more.
Medications (Excelon and Zider) my mother has been taking have not helped much. As Dr. David Perlmutter says conventional medicine treats the smoke (symptoms) and not the fire (disease). It is still not clear to medicine what really causes de Alzheimer's. The theory of beta amyloid protein has many gaps. There are people with those proteins and a clear mind and no signs of Alzheimer's. In 2022, it was announced that the scientific study on the beta amyloid hypothesis was fraudulent as images were modified. Here is the link for those interested: https://drperlmutter.com/billions-wasted-on-fraudulent-alzheimers-research/.
Not seeing much results in the treatment of my mother, I went with her to a new neurologist with an integrative medicine approach, who is connected to Dr. David Perlmutter. He has prescribed a treatment that follows Dr. Dale Bredesen protocol RECODE in a much simpler way. To motivate my mother, I started the diet and lifestyle changes myself recommended by this integrative medicine neurologist and I could see the benefits in my epilepsy, having had a good reduction. Unfortunately, for my mother it has not worked, she no longer has the discernment to follow such treatment :-(. But more and more I am convinced that there is a tight connection between our gut and brain. Just by taking gluten out of my diet, I have reduced my seizures by 60%. And now with this diet prescribed by this holistic neurologist, my seizures have had another reduction.
I saw here some discussions on Lequembi. Last time I went to my mother's neurologist I asked her about this drug and her opinions. She said it is a new drug on the market and more evidences are needed. She is a very careful doctor who does not prescribe a drug right after being launched. She prefers to wait at least two years after the drug's introduction on the market before prescribing it to her patients, so as to have more evidences on the medication effectiveness.
What Dr. David Perlmutter also mentions much in his posts is Alzheimer's prevention. My mother has two copies of APOE4 (this increases the chances of Alzheimer's by 50%) and I have at least one copy if not two. So, by knowing that, I have been investing much in the prevention of Alzheimer's, so as not to have the same journey as my mother, some of her cousins and my grandmother.
As it is said in Epilepsy, learn, learn and learn about your condition. I believe it does also apply to those with Alzheimer's and other chronic neurological conditions. It was through learning that I have better understood my epilepsy and learned new ways to treat it and control my seizures.
Wishing you all my best wishes!
Chris (@santosha)
PS: For those interested, here is the link of Dr. David Perlmutter's newsletter: https://drperlmutter.com/
All those side effects sound awful you are experiencing . I am soo sorry you have to deal with feeling that way, but know those that want to head off the disease or are already diagnosed with Alzheimer’s can improve their status through the lifestyle changes I eluded to in a previous post. Please look up and read the information that’s out there. Dr. Heather Sandison just published a new book and it’s on Amazon . I’m told it’s excellent!! Be aware that there are 2 facilities in the US , Marama is one, can’t remember the name of the other one , that she designed and runs , providing a schedule and a life style based around those things helpful for those with Alzheimer’s and improvements are realized!! They are expensive to be sure, but changes are made. They are essentially like an assistive living or nursing home type place that’s run specifically for a patient with Alzheimer’s . They are busy and involved in all types of activities , food that’s healthy is provided etc, They are expensive places to go , but changes are made on the scales of Alzheimer’s …. So it does work !!! . Please look into all these ideas . Though probably none of you would decide to become a patient at one of those facilities there are home programs that can be instituted that are helpful. Good luck and hope you at least investigate these ideas!!!
Thank you for your support and suggestions! I—despite my trials and tribulations connected with Lequembi side effects—will continue my course of action. I believe that this path offers the best path available towards meeting my goals.
Hi Everyone!
I am new in this group, though I have participated already for some time at the Epilepsy Group here at Mayo Clinic Connect. I have temporal lobe epilepsy and some predisposition for Alzeimer's due to the genetics of my family.
My mother has Alzheimer's and is already in the moderate stage. Because of my epilepsy and also my mother's Alzheimer's I do read, investigate and study a lot about both diseases. I have read the book of Dr. Dale Bredesen (The End of Alzheimer's) and follow Dr. David Perlmutter who works closely with Dr. Dale Bredesen, whom I enjoy even more.
Medications (Excelon and Zider) my mother has been taking have not helped much. As Dr. David Perlmutter says conventional medicine treats the smoke (symptoms) and not the fire (disease). It is still not clear to medicine what really causes de Alzheimer's. The theory of beta amyloid protein has many gaps. There are people with those proteins and a clear mind and no signs of Alzheimer's. In 2022, it was announced that the scientific study on the beta amyloid hypothesis was fraudulent as images were modified. Here is the link for those interested: https://drperlmutter.com/billions-wasted-on-fraudulent-alzheimers-research/.
Not seeing much results in the treatment of my mother, I went with her to a new neurologist with an integrative medicine approach, who is connected to Dr. David Perlmutter. He has prescribed a treatment that follows Dr. Dale Bredesen protocol RECODE in a much simpler way. To motivate my mother, I started the diet and lifestyle changes myself recommended by this integrative medicine neurologist and I could see the benefits in my epilepsy, having had a good reduction. Unfortunately, for my mother it has not worked, she no longer has the discernment to follow such treatment :-(. But more and more I am convinced that there is a tight connection between our gut and brain. Just by taking gluten out of my diet, I have reduced my seizures by 60%. And now with this diet prescribed by this holistic neurologist, my seizures have had another reduction.
I saw here some discussions on Lequembi. Last time I went to my mother's neurologist I asked her about this drug and her opinions. She said it is a new drug on the market and more evidences are needed. She is a very careful doctor who does not prescribe a drug right after being launched. She prefers to wait at least two years after the drug's introduction on the market before prescribing it to her patients, so as to have more evidences on the medication effectiveness.
What Dr. David Perlmutter also mentions much in his posts is Alzheimer's prevention. My mother has two copies of APOE4 (this increases the chances of Alzheimer's by 50%) and I have at least one copy if not two. So, by knowing that, I have been investing much in the prevention of Alzheimer's, so as not to have the same journey as my mother, some of her cousins and my grandmother.
As it is said in Epilepsy, learn, learn and learn about your condition. I believe it does also apply to those with Alzheimer's and other chronic neurological conditions. It was through learning that I have better understood my epilepsy and learned new ways to treat it and control my seizures.
Wishing you all my best wishes!
Chris (@santosha)
PS: For those interested, here is the link of Dr. David Perlmutter's newsletter: https://drperlmutter.com/
Hi @peggyrk
Recode in my opinion is very difficult to follow. This is why this neurologist to whom I went and who follows Dr. David Perlmutter approach has adopted a simplified version of it. It is very plausible, I follow it without difficulty. In the diet, for example, he flexibilizes it and recommends following it 80% of the time. I still can have my gluten free pizza on Sundays :-). It is a diet with low carbs and lots of vegetables. I can follow it without trouble outside home and in restaurants, different from a ketogenic diet which I tried and made me crazy. The other two pillars of his protocol are exercising (strength such as Pilates and aerobics such as brisk walks) and relaxation. I have been practicing hatha/raja yoga and yoga nidra for over 5 years. So, this was easy for me.
As to science, this holistic approach has already pieces of evidence. For sure not as much as those done by the pharma industry, where money flows and is the main interest. For example, there is no interest of the pharma to investigate more medical cannabis, which the pharma can not patent and earn lots of money. I, myself, have worked in the Pharma Industry early in my career and have quit it because of the lobby and the things I have seen. Please, I am not saying that the Pharma Industry has not brought good things to our society. But, I do always keep an eye open and look for alternatives.
One suggestion. A book that I have read and has opened my eyes was "Brave New Medicine" by Dr. Cynthia Li. It was based on this book that I decided to take gluten out of my diet, having achieved amazing results. She is an American doctor who had challenges with her health. Here is a link to one of her interviews: https://www.youtube.com/watch?v=_VZrY2vSbws&t=2853s
Wishing you all the best in your path!
Chris (@santosha)
There is an organization that is made up of individuals experiencing dementia of various types. I highly recommend looking at some of their information, and even joining a group for those who are affected. The organization is National Council of Dementia Minds and the website is https://dementiaminds.org. I have been involved for the past year and it has been a real gift.
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I got on Lequembi through my neurologist. I began seeing the neurologist when my foggy brain became obvious to me and to others. I went through a battery of various different tests over many months and…bingo—I won the jackpot—early/mid onset Alzheimer’s!
Several months ticked by while I waited to be approved to receive Lequembi. Since I live in a rural area, the next challenge was finding a facility that would give me the appropriate infusions. A couple of months ticked by; finally we found a place relatively nearby! Success! So, yes the side effects—which I hadn’t been prepared for—are onerous, indeed. The effects last roughly 24-48 hours after each infusion. Then, I’m back to a happy, healthy normal, returning to my happy, healthy, normal life. I am tough, and, this—although not perfect—beats its alternative. Enough said!
if you go to the Web-Sites of the larger, well-known medical institutions ie MAYO, John Hopkins, Duke, UNC, Vanderbilt etc they often have categories for clinical trials that they are conducting. I'm sure the Alzheimer's foundation does as well. Just gotta dig for them! For sure your Physician should be aware of any that are being conducted. That may be a long shot but it doesn't hurt to ask!
Hi Everyone!
I am new in this group, though I have participated already for some time at the Epilepsy Group here at Mayo Clinic Connect. I have temporal lobe epilepsy and some predisposition for Alzeimer's due to the genetics of my family.
My mother has Alzheimer's and is already in the moderate stage. Because of my epilepsy and also my mother's Alzheimer's I do read, investigate and study a lot about both diseases. I have read the book of Dr. Dale Bredesen (The End of Alzheimer's) and follow Dr. David Perlmutter who works closely with Dr. Dale Bredesen, whom I enjoy even more.
Medications (Excelon and Zider) my mother has been taking have not helped much. As Dr. David Perlmutter says conventional medicine treats the smoke (symptoms) and not the fire (disease). It is still not clear to medicine what really causes de Alzheimer's. The theory of beta amyloid protein has many gaps. There are people with those proteins and a clear mind and no signs of Alzheimer's. In 2022, it was announced that the scientific study on the beta amyloid hypothesis was fraudulent as images were modified. Here is the link for those interested: https://drperlmutter.com/billions-wasted-on-fraudulent-alzheimers-research/.
Not seeing much results in the treatment of my mother, I went with her to a new neurologist with an integrative medicine approach, who is connected to Dr. David Perlmutter. He has prescribed a treatment that follows Dr. Dale Bredesen protocol RECODE in a much simpler way. To motivate my mother, I started the diet and lifestyle changes myself recommended by this integrative medicine neurologist and I could see the benefits in my epilepsy, having had a good reduction. Unfortunately, for my mother it has not worked, she no longer has the discernment to follow such treatment :-(. But more and more I am convinced that there is a tight connection between our gut and brain. Just by taking gluten out of my diet, I have reduced my seizures by 60%. And now with this diet prescribed by this holistic neurologist, my seizures have had another reduction.
I saw here some discussions on Lequembi. Last time I went to my mother's neurologist I asked her about this drug and her opinions. She said it is a new drug on the market and more evidences are needed. She is a very careful doctor who does not prescribe a drug right after being launched. She prefers to wait at least two years after the drug's introduction on the market before prescribing it to her patients, so as to have more evidences on the medication effectiveness.
What Dr. David Perlmutter also mentions much in his posts is Alzheimer's prevention. My mother has two copies of APOE4 (this increases the chances of Alzheimer's by 50%) and I have at least one copy if not two. So, by knowing that, I have been investing much in the prevention of Alzheimer's, so as not to have the same journey as my mother, some of her cousins and my grandmother.
As it is said in Epilepsy, learn, learn and learn about your condition. I believe it does also apply to those with Alzheimer's and other chronic neurological conditions. It was through learning that I have better understood my epilepsy and learned new ways to treat it and control my seizures.
Wishing you all my best wishes!
Chris (@santosha)
PS: For those interested, here is the link of Dr. David Perlmutter's newsletter: https://drperlmutter.com/
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1 ReactionThank you for your support and suggestions! I—despite my trials and tribulations connected with Lequembi side effects—will continue my course of action. I believe that this path offers the best path available towards meeting my goals.
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1 ReactionRecode sounds plausible, and probably isn’t. I’ll stick with science.
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1 ReactionHi @peggyrk
Recode in my opinion is very difficult to follow. This is why this neurologist to whom I went and who follows Dr. David Perlmutter approach has adopted a simplified version of it. It is very plausible, I follow it without difficulty. In the diet, for example, he flexibilizes it and recommends following it 80% of the time. I still can have my gluten free pizza on Sundays :-). It is a diet with low carbs and lots of vegetables. I can follow it without trouble outside home and in restaurants, different from a ketogenic diet which I tried and made me crazy. The other two pillars of his protocol are exercising (strength such as Pilates and aerobics such as brisk walks) and relaxation. I have been practicing hatha/raja yoga and yoga nidra for over 5 years. So, this was easy for me.
As to science, this holistic approach has already pieces of evidence. For sure not as much as those done by the pharma industry, where money flows and is the main interest. For example, there is no interest of the pharma to investigate more medical cannabis, which the pharma can not patent and earn lots of money. I, myself, have worked in the Pharma Industry early in my career and have quit it because of the lobby and the things I have seen. Please, I am not saying that the Pharma Industry has not brought good things to our society. But, I do always keep an eye open and look for alternatives.
One suggestion. A book that I have read and has opened my eyes was "Brave New Medicine" by Dr. Cynthia Li. It was based on this book that I decided to take gluten out of my diet, having achieved amazing results. She is an American doctor who had challenges with her health. Here is a link to one of her interviews: https://www.youtube.com/watch?v=_VZrY2vSbws&t=2853s
Wishing you all the best in your path!
Chris (@santosha)
There is an organization that is made up of individuals experiencing dementia of various types. I highly recommend looking at some of their information, and even joining a group for those who are affected. The organization is National Council of Dementia Minds and the website is https://dementiaminds.org. I have been involved for the past year and it has been a real gift.