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Alzheimers care and treatments: Consult with Mayo Clinic?
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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@alju
My husband who suffers AD dementia, and I live in NY, and found excellent behavioral care neurology physician at Mayo in MN. Following testing, we are now communicating via tele appointments which work out very well. Good luck to you…
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3 ReactionsThank you .
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2 ReactionsMy wife was diagnosed at Mayo (Rochester) with Dementia several months ago. We are on track to start Infusion Therapy in Michigan but we are seeking feedback pro / con regarding the therapy. Also, would like to hear from those who decided against having the therapy, and why. We are investigating every nook and cranny regarding the insidious disease. Would also like to read opinions on MCT oil - seems there are numerous studies taking place.
Hi, @randyreg.
I’m sorry you and your wife are facing this. It sounds like you’re doing exactly what many families do after a diagnosis in trying to gather as much information as possible before making a decision. I am so glad you found this discussion @japlok initiated, Alzheimers care and treatments: Consult with Mayo Clinic?. He and others are full of experience and questions openly shared here.
I am not personally familiar with Alzheimer’s but enough of my own unique health journey that I totally understand your cautious perspective. The infusion therapies can be a difficult choice because there are potential benefits, but they also come with trade-offs such as frequent infusions, MRI monitoring, possible side effects, and varying results. Hearing from people who chose treatment and those who decided it wasn’t the right fit for them can be very helpful.
As for MCT oil, there’s certainly been a lot of interest and ongoing research. Some people report feeling it helps with energy or cognition, while others notice no difference. The evidence is still evolving, so it’s another good topic to discuss with her neurology team, especially to understand what is supported by research versus personal experience.
I tried MCT oil hoping it would help my digestion and I can absolutely tell you, just a tiny amount was horrible for me. I did a quick search from the home page and found a couple discussions totally unrelated to dementia or digestion, so it definitely must be something very unique to each individual and that others are asking about as well.
- Discussion about MCT oil in Epilepsy & Seizures Support Group
https://connect.mayoclinic.org/discussion/does-any-of-you-take-mct-oil-for-epilepsy-treatment/
- Discussion about MCT in COPD: Chronic obstructive pulmonary disease Support Group
https://connect.mayoclinic.org/discussion/nutrition-for-severe-copd-35kg-type-ii-failure-hypoproteinemia/
If you don’t mind sharing, what factors are weighing most heavily in your decision? Is it the potential benefits, the risks and MRI monitoring, the travel and logistics, quality of life, or something else? Knowing that may help others share experiences that are most relevant to your situation.