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/