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.
Dr. Dean Ornish just finished a trial on lifestyle changes to make regarding Alzheimers. Plant based diet, exercise, mediation and group support. Some of the people in the trial actually improved. If you google his name and Alzheimer the info for the trial results will come up.
I have early/mid onset Alzheimer’s—as such, I recently began receiving infusions of Lequembi. I’ve recently completed my third infusion. After each infusion, I have experienced very unpleasant side effects:
an intense fever, with chills that cannot be relieved; headache; body aches—
Basically I feel incredibly sick!
I’m longing to compare notes with others in my boat! I am amazed there is not a proscribed group dedicated to this, since my understanding is that there are many of us!
Cognitively stimulating activities seems to be most effective way to keep it at bay. Translation: friends we can have robust engaging and , Yes, Enjoyable discussions with -- laughter and surprises thrown in. https://www.hhs.gov/sites/default/files/surgeon-general-social-connection-advisory.pdf
In fact even when brain is riddled with the AD, people who are active living fully -- in body and mind -- do not show any signs of it -- as brain autopsies showed.
The more I read about this being 80, the more it seems it's in
OUR control, and freely available.
I've joined a group into lifelong learning where participants are the teachers, discussing books, opinion pieces in major newspapers, magazines, or credible podcasts.
I took an Alzheimer’s course with Simple Smart Science last Sept through December. Excellent , though I understand they have changed it a bit since then . Lifestyle lifestyle, lifestyle makes all the difference-( even if you have a familial tendency or even the actual gene, gene expression is somewhat controlled by how you live your life)
Life style issues to be aware of and focus on -
Nutrition, Inflammation. , Exercise , Supplements, Social Engagement/ Purpose in life, Stress/Cortisol, Use it or lose it.
Meditation, breath work, getting rid of toxins , quality sleep are all helpful and important. Look up Dr Dale Bredesen, and Heather Sandison for info and what they have learned and are doing along these lines. Several books out , podcasts etc… Bredesen is considered the guru of Alzheimer’s and Sandison trained under him. These are top people in this Alzheimer’s space. Good luck to you all as you can make a difference in your own cognitive future!!!!
I have early/mid onset Alzheimer’s—as such, I recently began receiving infusions of Lequembi. I’ve recently completed my third infusion. After each infusion, I have experienced very unpleasant side effects:
an intense fever, with chills that cannot be relieved; headache; body aches—
Basically I feel incredibly sick!
I’m longing to compare notes with others in my boat! I am amazed there is not a proscribed group dedicated to this, since my understanding is that there are many of us!
Dear peggyrk, I have been diagnosed with Mild Cognitive Impairment and a blood test and PET Scan have indicated protein that is associated with Alzheimers. I have had 2 infusions of Leqembi and experienced bad headache, nausea, body aches, fatigue, and low grade fever. As you say, it is not pleasant! My primary suggested I take Tylenol and an allergy pill before the infusion and continue the Tylenol as directed. The second infusion was not fun, but the side effects were less severe. Normally, I would not want to continue with a treatment that makes me sick for 2 days, but I feel a bit desperate since this is the only treatment to slow down the Alzheimer's progression. I've been told that I am fortunate that my Alzheimer's was caught early enough to be eligible for the Leqembi. I pray you have less side effects as your infusions continue and that it is an effective treatment for you. God bless you. It's not easy to deal with such a sad diagnosis, is it?
Miss Patty
I have early/mid onset Alzheimer’s—as such, I recently began receiving infusions of Lequembi. I’ve recently completed my third infusion. After each infusion, I have experienced very unpleasant side effects:
an intense fever, with chills that cannot be relieved; headache; body aches—
Basically I feel incredibly sick!
I’m longing to compare notes with others in my boat! I am amazed there is not a proscribed group dedicated to this, since my understanding is that there are many of us!
@peggyrk I too was approved for Lequembi when I was diagnosed with mild Alzheimer’s several months ago.
After careful consideration, I decided not to take it. The side effects sounded like things I would choose to avoid. The low, temporary success rate put the “nail in the coffin” so I turned it down.
THE FOLLOWING IS MY OPINION ONLY
The disturbing action of the doctor’s PA when he gave me my diagnosis set off red lights for me. He was absolutely giddy, and almost jumping for joy. He immediately got me to sign papers for my approval.
When I asked him why he is always pushing drugs on me, he quickly answered “I don’t get paid”.
Bingo! Yes he does.
The Pharm. is pushing this very expensive drug…they got the FDA to approve it too quickly, and then Medicare joined the “party”.
I’m sorry you are going through this. I think it’s a shame that they are willing to put a vulnerable part of the population at any risk.
Dear peggyrk, I have been diagnosed with Mild Cognitive Impairment and a blood test and PET Scan have indicated protein that is associated with Alzheimers. I have had 2 infusions of Leqembi and experienced bad headache, nausea, body aches, fatigue, and low grade fever. As you say, it is not pleasant! My primary suggested I take Tylenol and an allergy pill before the infusion and continue the Tylenol as directed. The second infusion was not fun, but the side effects were less severe. Normally, I would not want to continue with a treatment that makes me sick for 2 days, but I feel a bit desperate since this is the only treatment to slow down the Alzheimer's progression. I've been told that I am fortunate that my Alzheimer's was caught early enough to be eligible for the Leqembi. I pray you have less side effects as your infusions continue and that it is an effective treatment for you. God bless you. It's not easy to deal with such a sad diagnosis, is it?
Miss Patty
Thanks for sharing your experiences with me. No one prepared me for these fairly awful chills, aches, and pains. After my first infusion, the side effects were so severe, I ended up going to the local ER the next day for some relief. Eventually, a high dose of Tylenol eased me enough so I could return home and get some good quality rest. By the third day, I was very tired, but felt better.
The second times were far better, albeit still with aches, pains, and very severe chills. Each of these experiences my recovery time has been about a day. So, improving!
For now, I will continue to stick with getting Lequembi infusions. But, we’ll have to wait and see how it goes!
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!!!
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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.
-
Like -
Helpful -
Hug
1 ReactionDr. Dean Ornish just finished a trial on lifestyle changes to make regarding Alzheimers. Plant based diet, exercise, mediation and group support. Some of the people in the trial actually improved. If you google his name and Alzheimer the info for the trial results will come up.
-
Like -
Helpful -
Hug
2 ReactionsThe infa red Veilight has been shown to slow down dementia. It has worked for my husband and sister,.
I have early/mid onset Alzheimer’s—as such, I recently began receiving infusions of Lequembi. I’ve recently completed my third infusion. After each infusion, I have experienced very unpleasant side effects:
an intense fever, with chills that cannot be relieved; headache; body aches—
Basically I feel incredibly sick!
I’m longing to compare notes with others in my boat! I am amazed there is not a proscribed group dedicated to this, since my understanding is that there are many of us!
Cognitively stimulating activities seems to be most effective way to keep it at bay. Translation: friends we can have robust engaging and , Yes, Enjoyable discussions with -- laughter and surprises thrown in.
https://www.hhs.gov/sites/default/files/surgeon-general-social-connection-advisory.pdf
In fact even when brain is riddled with the AD, people who are active living fully -- in body and mind -- do not show any signs of it -- as brain autopsies showed.
The more I read about this being 80, the more it seems it's in
OUR control, and freely available.
I've joined a group into lifelong learning where participants are the teachers, discussing books, opinion pieces in major newspapers, magazines, or credible podcasts.
-
Like -
Helpful -
Hug
2 ReactionsI took an Alzheimer’s course with Simple Smart Science last Sept through December. Excellent , though I understand they have changed it a bit since then . Lifestyle lifestyle, lifestyle makes all the difference-( even if you have a familial tendency or even the actual gene, gene expression is somewhat controlled by how you live your life)
Life style issues to be aware of and focus on -
Nutrition, Inflammation. , Exercise , Supplements, Social Engagement/ Purpose in life, Stress/Cortisol, Use it or lose it.
Meditation, breath work, getting rid of toxins , quality sleep are all helpful and important. Look up Dr Dale Bredesen, and Heather Sandison for info and what they have learned and are doing along these lines. Several books out , podcasts etc… Bredesen is considered the guru of Alzheimer’s and Sandison trained under him. These are top people in this Alzheimer’s space. Good luck to you all as you can make a difference in your own cognitive future!!!!
-
Like -
Helpful -
Hug
4 ReactionsDear peggyrk, I have been diagnosed with Mild Cognitive Impairment and a blood test and PET Scan have indicated protein that is associated with Alzheimers. I have had 2 infusions of Leqembi and experienced bad headache, nausea, body aches, fatigue, and low grade fever. As you say, it is not pleasant! My primary suggested I take Tylenol and an allergy pill before the infusion and continue the Tylenol as directed. The second infusion was not fun, but the side effects were less severe. Normally, I would not want to continue with a treatment that makes me sick for 2 days, but I feel a bit desperate since this is the only treatment to slow down the Alzheimer's progression. I've been told that I am fortunate that my Alzheimer's was caught early enough to be eligible for the Leqembi. I pray you have less side effects as your infusions continue and that it is an effective treatment for you. God bless you. It's not easy to deal with such a sad diagnosis, is it?
Miss Patty
-
Like -
Helpful -
Hug
1 Reaction@peggyrk I too was approved for Lequembi when I was diagnosed with mild Alzheimer’s several months ago.
After careful consideration, I decided not to take it. The side effects sounded like things I would choose to avoid. The low, temporary success rate put the “nail in the coffin” so I turned it down.
THE FOLLOWING IS MY OPINION ONLY
The disturbing action of the doctor’s PA when he gave me my diagnosis set off red lights for me. He was absolutely giddy, and almost jumping for joy. He immediately got me to sign papers for my approval.
When I asked him why he is always pushing drugs on me, he quickly answered “I don’t get paid”.
Bingo! Yes he does.
The Pharm. is pushing this very expensive drug…they got the FDA to approve it too quickly, and then Medicare joined the “party”.
I’m sorry you are going through this. I think it’s a shame that they are willing to put a vulnerable part of the population at any risk.
-
Like -
Helpful -
Hug
2 ReactionsThanks for sharing your experiences with me. No one prepared me for these fairly awful chills, aches, and pains. After my first infusion, the side effects were so severe, I ended up going to the local ER the next day for some relief. Eventually, a high dose of Tylenol eased me enough so I could return home and get some good quality rest. By the third day, I was very tired, but felt better.
The second times were far better, albeit still with aches, pains, and very severe chills. Each of these experiences my recovery time has been about a day. So, improving!
For now, I will continue to stick with getting Lequembi infusions. But, we’ll have to wait and see how it goes!
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!!!
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Helpful -
Hug
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