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Alzheimers care / treatments

Posted by japlok @japlok, 3 days ago

My wife was just diagnosed with AD and is currently on Donepezil. She will be taking a MMSE test in a couple of weeks to see if she qualifies for Leqembi or Kisunla. Does anyone recommend trying to get a consultation with a doctor at the Mayo in MN or stick with my current doctor? I'm looking for the best 'team' to help my wife and don't want to miss any opportunity if one is there. I have done nothing but read about the disease and tried to find any information on advancements to cure AD or slow it down significantly but haven't found anything that is promising. I read about using ultrasound to allow for the medication to attack the plaque quicker and also something called Perispinal Etanercept where an FDA approved drug for arthritis is used for AD treatment. I just need help with our path forward.

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Janell | @jlharsh | 3 days ago

I am sorry you have the need to write this post. Kudos to you for learning all you can so you both can live your best lives. I think you’ve answered your own question by just considering it.

I am a Mayo Clinic patient with systemic challenges and cannot say enough about the compassionate care they provide. I’ve read about their Alzheimer’s research and discoveries in the news lately. I have seen neurology and am super comfortable they know what to do and at just what time to do it. In my heart of hearts I believe their model of clinical care, research and eduction would provide a fabulous opportunity.

It certainly looks like they have a lot of research happening:
https://www.mayo.edu/research/centers-programs/alzheimers-disease-research-center/clinical-trials
To pursue an appointment: http://mayocl.in/1mtmR63

Are you thinking of any downsides of calling, telling them where you’re at and ask if they think they can help?

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1 reply
sandy8043 | @sandy8043 | 2 days ago

I want to echo what Janelle said above. I would add that with a diagnosis like AD its best to get the best care at the beginning. Mayo will be your best choice for the latest and best care and will set in place a standard of care for your wife. Even if you have to do your followup at your local doctor, you will have a course of treatment set out by the best experts in the world. And you will have the confidence that you are both doing the best you can do for her. When I battled my cancers I had that confidence in my care and treatment and it was a great comfort to me. A second opinion is always worth it.

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1 reply
japlok | @japlok | 2 days ago
In reply to @jlharsh "I am sorry you have the need to write this post. Kudos to you for learning..." + (show)
@jlharsh

I am sorry you have the need to write this post. Kudos to you for learning all you can so you both can live your best lives. I think you’ve answered your own question by just considering it.

I am a Mayo Clinic patient with systemic challenges and cannot say enough about the compassionate care they provide. I’ve read about their Alzheimer’s research and discoveries in the news lately. I have seen neurology and am super comfortable they know what to do and at just what time to do it. In my heart of hearts I believe their model of clinical care, research and eduction would provide a fabulous opportunity.

It certainly looks like they have a lot of research happening:
https://www.mayo.edu/research/centers-programs/alzheimers-disease-research-center/clinical-trials
To pursue an appointment: http://mayocl.in/1mtmR63

Are you thinking of any downsides of calling, telling them where you’re at and ask if they think they can help?

Jump to this post

Hi Janell,

Thank you so much for your response and the additional information. I don't see any downside to contacting the clinic for help. The fact that I wanted to try and speak with someone that could provide me with how to proceed and not having that direct contact information was holding me back from contacting anyone, but now I know I just need to contact someone to get the process started... and that is thanks to your response. I wish the best for you in your pursue to concur your challenges.

Ken

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1 reply
japlok | @japlok | 2 days ago
In reply to @sandy8043 "I want to echo what Janelle said above. I would add that with a diagnosis like..." + (show)
@sandy8043

I want to echo what Janelle said above. I would add that with a diagnosis like AD its best to get the best care at the beginning. Mayo will be your best choice for the latest and best care and will set in place a standard of care for your wife. Even if you have to do your followup at your local doctor, you will have a course of treatment set out by the best experts in the world. And you will have the confidence that you are both doing the best you can do for her. When I battled my cancers I had that confidence in my care and treatment and it was a great comfort to me. A second opinion is always worth it.

Jump to this post

Hi Sandy8043,

Thank you for your advice as well. It is very helpful and encouraging. It sounds like you have successfully beat your cancers. I also wish you the best with your health going forward and hope you never have to fight that battle again.

Ken

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1 reply
Janell | @jlharsh | 2 days ago
In reply to @japlok "Hi Janell, Thank you so much for your response and the additional information. I don't see..." + (show)
@japlok

Hi Janell,

Thank you so much for your response and the additional information. I don't see any downside to contacting the clinic for help. The fact that I wanted to try and speak with someone that could provide me with how to proceed and not having that direct contact information was holding me back from contacting anyone, but now I know I just need to contact someone to get the process started... and that is thanks to your response. I wish the best for you in your pursue to concur your challenges.

Ken

Jump to this post

Thank you for your kind words, Ken.

How far are you from Mayo Clinic in MN? I hope you come back and report what you have learned after contacting them about your wife’s new AD diagnosis.

Great words of wisdom from @sandy8043 . I am also including @IndianaScott @naturegirl5 @santosha @colleenyoung because they will no doubt have valuable information for you.

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japlok | @japlok | 2 days ago

First, spelling correction...not concur, but conquer!!!!!

We live in Indiana so it would be a bit of a hike but I will go to the ends of the earth for my wife. I will definitely report back with any new information. And yes, @sandy8043 has great words of wisdom.

Thank you again, Janell. Including others that may have information or any additional insight to helping my wife is always welcome.

Ken

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | 2 days ago
In reply to @japlok "First, spelling correction...not concur, but conquer!!!!! We live in Indiana so it would be a bit..." + (show)
@japlok

First, spelling correction...not concur, but conquer!!!!!

We live in Indiana so it would be a bit of a hike but I will go to the ends of the earth for my wife. I will definitely report back with any new information. And yes, @sandy8043 has great words of wisdom.

Thank you again, Janell. Including others that may have information or any additional insight to helping my wife is always welcome.

Ken

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Hello, @japlok My wife was a patient at Mayo Rochester for over 14 years during her medical journey. We also lived in Indiana and often made the trek. She always (100%) said it was worth it and that her best docs were those at Mayo, and I agreed.

My MIL received exceptional treatment from Mayo Rochester for her dementia, too.

In our opinions, we found the staff and doctors at Mayo were far superior to our local providers.

Strength, Courage, & Peace

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sandy8043 | @sandy8043 | 2 days ago
In reply to @japlok "Hi Sandy8043, Thank you for your advice as well. It is very helpful and encouraging. It..." + (show)
@japlok

Hi Sandy8043,

Thank you for your advice as well. It is very helpful and encouraging. It sounds like you have successfully beat your cancers. I also wish you the best with your health going forward and hope you never have to fight that battle again.

Ken

Jump to this post

Thank you Ken for the kind words. If you decide to make the trip Mayo has a wonderful concierge service that can help you find lodging, etc. Some hotels near the clinic are accessible by skywalk. Others offer shuttle service to and from the Clinic.
I will keep you and your wife in my prayers.
Sandy

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