
New To This Group!!!
New To This Group!!!
Hello! My name is Catherine Webb. I am a 48 year old mother of 4 (all under 13), I am a 3/4 carrier, and both my parents have Alzheimers. Its been a journey already. I am a neuro Nurse Practitioner so I have been able to implement many suggestions on my own, but my 3/4 status has cause MUCH anxiety. I have flown all over the country to prevention clinics. I am so confused by all of the data, and also angry as this diagnosis of 3/4 has taken away the joy I felt for Life. I refuse to completely change all my "pleasures" (I like to have a glass or two of wine at dinner once or twice a week), but I willing to implement most strategies. I just wonder if some of these things will be the like 1980s where we banned all fat! it was terrible for us
. I am thin, I exercise daily, I eat very well (minus a SMALL dessert at night.. ha) and my cholesterol is great. I do have an elevated LPa but so far no one is concerned. I am thrilled to be a part of this community as I believe knowledge is POWER! sharing this burden with others also makes me feel less lonely as a 3/4 carrier. The recent news from Spain and the CNN episode last night give me pause. I have yet to get all of those blood tests for amyloid etc.... or do a brain MRI. Too scary!!! Thanks for listening! Does everyone here do baseline MRIs and blood testing for certain AD proteins?

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Re: New To This Group!!!
I'm new to this forum. Husband was recently given the dx of Alzheimer's. How do I find a PCP who can order all the blood tests my husband needs? How do I find some practitioner who believes in the Bredesen protocol who will guide us through it?
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Re: New To This Group!!!
Hi SaveMyBrain -SaveMyBrain wrote: ↑Mon May 27, 2024 2:29 pm I'm new to this forum. Husband was recently given the dx of Alzheimer's. How do I find a PCP who can order all the blood tests my husband needs? How do I find some practitioner who believes in the Bredesen protocol who will guide us through it?
Hello! I'm a support team intern, and I'd like to welcome you to this site! You have found a very supportive community here.
Thank you for posting here - you have found a wonderful support system. I am sorry to hear of your husband's diagnosis and want to emphasize that there are many factors in Alzheimer's disease and lots of things you can do. You can find a list of APOE4-aware health care providers here: ApoE4-Aware Healthcare Practitioners. Another option is to search on the Apollo site here: Apollo and click on "Get Started" and then "Find a practitioner or coach."
Hopefully, you have an open-minded local PCP who can support your husband in the protocol. Sometimes ReCODE providers work with the local PCP by giving a list of more conventional labs that you can do at the PCP's office and run through insurance.
On a personal note, I found a ReCODE-trained provider for my mother a few years ago. Following the protocol has made a big difference in her cognition and she is doing well. Your husband is fortunate to have a determined, loving spouse who is seeking the best care for him.
For additional information, it would be a great idea to take a look at our Primer. It is an incredible resource of information about the biochemistry of ApoE4. It offers researched-based prevention strategies and was written by a practicing M.D. with ApoE4. Do not become overwhelmed with all the information. Sometimes it is best to slowly read through it, decide which section resonates with you, and focus on that area first.
The How-To Guide will help you learn how to navigate this site. It includes topics such as navigating the forum, private messaging, and searching.
You can find other members' experiences in Our Stories. Sometimes reading the stories of others helps us realize that we are not alone.
Don't forget to take care of yourself throughout this journey. If you are his primary caregiver, remember to make arrangements to take a full day off every week, in order to refresh and take care of your own health. Then, you will be able to be the loving, patient caregiver that you want to be.
I'm so glad you have joined us on this site. Please feel free to reach out anytime with questions or if you just need support. You are not alone. We are here for you.
Take care,
Julie
PhD in Speech-Language Pathology
Functional Medicine Certified Health Coach
Interested in all things brain-related
Functional Medicine Certified Health Coach
Interested in all things brain-related
Re: New To This Group!!!
Hi Catherine,Kikiwebb wrote: ↑Mon May 20, 2024 3:53 am I am a neuro Nurse Practitioner so I have been able to implement many suggestions on my own, but my 3/4 status has cause MUCH anxiety. I have flown all over the country to prevention clinics. I am so confused by all of the data, and also angry as this diagnosis of 3/4 has taken away the joy I felt for Life.
It sounds like you are already doing the right things. Exercise is critical - you want to do all you can to protect the blood brain barrier. Get rid of any added sugars - no corn syrup, grape juice, etc. Stay away from processed foods. You are likely leading a much healthier lifestyle compared to your parents - this is huge. There is a lot of good research going on and some promising trials. You have one ApoE4 gene, which means you are more able to use ketones in the brain to supplement the glucose fuel, so be not afraid of fats. You have one ApoE3 gene, so you are able to remove some garbage from the brain, and your job is to not create excess garbage, and that is done through lifestyle. Stay away from toxins and head injuries. Teeth are important - do you have any old fillings with mercury? Some gum bacteria are associated with AD. This is close to the brain and can lead to BBB damage.
Sonoma Mike
4/4
4/4
Re: New To This Group!!!
Welcome Catherine! I am sorry your genetic status is causing you so much anxiety at this time. I feel your situation deeply.Kikiwebb wrote: ↑Mon May 20, 2024 3:53 am Hello! My name is Catherine Webb. I am a 48 year old mother of 4 (all under 13), I am a 3/4 carrier, and both my parents have Alzheimers. Its been a journey already. I am a neuro Nurse Practitioner so I have been able to implement many suggestions on my own, but my 3/4 status has cause MUCH anxiety. I have flown all over the country to prevention clinics. I am so confused by all of the data, and also angry as this diagnosis of 3/4 has taken away the joy I felt for Life. I refuse to completely change all my "pleasures" (I like to have a glass or two of wine at dinner once or twice a week), but I willing to implement most strategies. I just wonder if some of these things will be the like 1980s where we banned all fat! it was terrible for us. I am thin, I exercise daily, I eat very well (minus a SMALL dessert at night.. ha) and my cholesterol is great. I do have an elevated LPa but so far no one is concerned. I am thrilled to be a part of this community as I believe knowledge is POWER! sharing this burden with others also makes me feel less lonely as a 3/4 carrier. The recent news from Spain and the CNN episode last night give me pause. I have yet to get all of those blood tests for amyloid etc.... or do a brain MRI. Too scary!!! Thanks for listening! Does everyone here do baseline MRIs and blood testing for certain AD proteins?
I think that dealing with our parents' (and/or siblings') dementia is so much worse with our current understanding of the situation. It was surely hard 50 or 60 years ago, but IMO the immense unknowns back then actually sheltered folks from the depression and anxiety we suffer when projecting their struggles onto our futures.
I have had several years to ruminate on my 4/4 status, but it doesn't seem to improve. Every memory fumble, every lost word, every dropped step, causes me to feel that I am slipping into irreversible cognitive decline.
I am currently having tests through an AD clinical trial: cognitive testing, plasma amyloid level, MRI and PET scanning; still trying to decide whether CSF testing is of enough value to make it worth the pain, risk, and inconvenience (I live 5 hours from the clinic, so a spinal tap would mean an overnight stay to accommodate the medical requirements.)
I guess all we can do is light each other's darkest hours, and follow the clues we can, to try and create a more hopeful future.
Hang in there! I am hoping it gets better as the days and years progress.