Saying hi and needing help

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Molissa
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Saying hi and needing help

Post by Molissa »

Hi new friends!
I thought I'd introduce myself. There is so much info on this site and I'm feeling overwelmed. I have read the primer btw :)
I just turned 40, and have a mother that was diagnosed with AD 4 years ago. She is 69. My dad takes care of her at home He is 70, is deaf in one ear, and has a very low education level. He's from the sticks in KY where school was not a priority. I can see his decline since he retired to take care of mom. Based on everything I've read I'm afraid for my future. I've been on low carb for over a year but I'm unsure where to go from here. Any help from you or direction would be appreciated!
Ask me anything you'd like. I'm glad to be here.
Melissa
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Re: Saying hi and needing help

Post by NF52 »

Molissa wrote:...
I just turned 40, and have a mother that was diagnosed with AD 4 years ago. She is 69. My dad takes care of her at home He is 70, is deaf in one ear, and has a very low education level....Based on everything I've read I'm afraid for my future. I've been on low carb for over a year but I'm unsure where to go from here. Any help from you or direction would be appreciated!...Melissa
A warm hug from someone who is almost your mom's age, Melissa. At 67, I know that your dad must be one terrific man to be taking care of your mom. I also know that it is perfectly okay to be overwhelmed, unsure, afraid. And just plain mad at the lack of clear answers about what your own risk is, and what to do with all this uncertainty!

So here are just a few starting tips for what will be a rollercoaster for at least a while:
1. Genes are not destiny, and neither is any one decision you make in the next 10 minutes or 10 months!
I have ApoE 4/4 and all the "research" says I should be like your mom: diagnosed at age 68 with Alzheimers. In fact, my maternal grandmother died of a stroke at 45; my dad died of cardiac arrest at age 67. And I have not exactly been the poster child for healthy eating! Yet my coronary arteries are clean, my brain is still passing tests in a clinical trial for people at high risk of Alzheimer's. You have about 50% of your mom's gene and 50% of your dad's. But the 50% of your mom's may be mostly from a long-lived, healthy grandparent! And the 50% of your dad's is certainly at least his strong determination!

2. You can pick one thing that seems doable in your schedule and just up that a bit for now. Exercise is one of the factors with the strongest evidence for helping our brains and hearts--and it only needs to be moderate for 30-60 minutes several times a week. Interval (walking and then jogging and then walking) is an easy way to fit it in. You can give yourself permission not to worry about getting a Ph.D in reading every post on this forum! One or two of Stavia's "basic strategies" is just fine for now.

3. Clinical trials and the advocacy and observations by people on this forum who are experts on prevention are going to make it much more likely that people like you and my three children (all in their 30's and all ApoE 3/4) will be fine--because you are doing so much we didn't at your ages, and because the pace of research into prevention (and the strategies we already know) are so rapidly improving.

4. Your mother may have multiple risk factors that you don't. Many women of my generation were strongly encouraged NOT to exercise and schools did not have any Title IX requirements for sports until after your mom and I graduated. (Synchronized swimming is not a sport!) We also were often raised on cheap, highly processed, high saturated fat foods, and then later were told that high carb diets were best for us! Your mom may have lived in an area with poor water or air quality, since I can remember when my local lake was so polluted that swimming was prohibited and fish had toxic levels of mercury. We lived with "acid rain" from factories several states away and DDT was a common pesticide. I didn't have a cholesterol test until I was 50, and no doctor ever asked about my father's heart disease until recently.

5. Your dad also may be a very sharp guy in spite of his early exit from education. One of the three Medal of Honor winners from D-Day left school in rural VA when his mother died in his 8th grade year to help support his 7 siblings. Most of my mother's siblings did the same. I would encourage you to talk with your dad about specific ways he could get some help with your mom's care, ranging from Meals on Wheels, to home-based aide support, to respite, to even local church ladies coming to spend time with her or talk her to the beauty salon. (My mother-in-law loved trips to the beauty salon, followed by lunch at Tim Horton's, which she called "that place where the Irish eat." (Just because names may escape us, doesn't mean the taste of good food or appreciation for a nice hairdo is gone!) His local Alzheimer's Association is a great place to start, as is the local Office on the Aging.

I hope you ask us lots more questions, and tell us what keeps you awake at night. We're here to make each other feel strong, empowered and able to advocate for what we need to live our very best lives. Hugs from a "mom" in Virginia.
4/4 and still an optimist!
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PJD@4411
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Re: Saying hi and needing help

Post by PJD@4411 »

Molissa wrote:Hi new friends!
I thought I'd introduce myself. There is so much info on this site and I'm feeling overwelmed. I have read the primer btw :)
I just turned 40, and have a mother that was diagnosed with AD 4 years ago. She is 69. My dad takes care of her at home He is 70, is deaf in one ear, and has a very low education level. He's from the sticks in KY where school was not a priority. I can see his decline since he retired to take care of mom. Based on everything I've read I'm afraid for my future. I've been on low carb for over a year but I'm unsure where to go from here. Any help from you or direction would be appreciated!
Ask me anything you'd like. I'm glad to be here.
Melissa
Hi Molissa,
Welcome to the forum! You are in great company here surrounded by a supportive community that understands your concerns.

My mom was diagnosed with AD many years ago so I get it. I am 55 years old and have not had the genetic testing therefore do not know my ApoE4 status. I stay positive knowing today there are many evidence-based studies showing how nutrition and lifestyle behaviors promote cognitive health while decreasing the risk of AD.

It sounds like you are off to a great start by reading the Primer and you are already following a low carbohydrate diet. There is an abundance of information here but don't let that overwhelm you, focus on the basic strategies recommended by Stavia regarding sleep, excise, stress management, supplements, and diet.

There is hope and you have decades to benefit from prevention strategies. Also keep in mind that your mother may have been exposed to different risk factors through out her life such as; pollution, environmental exposures, diet, health issues (diabetes, high blood pressure, obesity, smoking, depression, cognitive and physical inactivity, low education) all of which increase the risk for AD.

Stay strong my friend!

Take good care and please reach out if you have any additional questions or concerns.
PJ
Think Positive Be Positive
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SusanJ
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Re: Saying hi and needing help

Post by SusanJ »

Molissa wrote:Based on everything I've read I'm afraid for my future. I've been on low carb for over a year but I'm unsure where to go from here. Any help from you or direction would be appreciated!
Hugs from someone else who saw parents go through the AD/caregiver routine. Not easy and I second NF52's suggestion to find local resources to help your dad. It will help to decrease the burdens he carries.

Maybe a good place to start for you would be to look at your family history - strokes, heart disease, diabetes, or anything else that stands out as afflicting several family members. That might give you ideas of where to focus (like managing blood pressure and checking out clotting problems for stroke history or insulin resistance if there is diabetes). And at age 40, you'll want to start watching for perimenopause symptoms and stay on top of your hormonal balance. Our genes aren't destiny, but they do provide us a lot of good information about how to best take care of our bodies!
Molissa
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Re: Saying hi and needing help

Post by Molissa »

Thank you all so much! What a nice community this is! I still need to figure out how to tag other's in a post lol
I've offered to help my dad. He's become very paranoid and even more controlling than I remember as a child. He can't read(my mom has her master's in education so wrap your head around that one) so when he needs something he calls me or comes over to read mail, or asks me to come over to reset his clocks. He resists change and doesn't trust anyone. He needs help but won't except it. I'm trying though...
I have been working in the medical field since I was 18, and worked on a Alzheimer unit in a nursing home for 10 years. I still need to get tested, but if saturated fats are bad for those with the APO4 gene, what do we eat? Is there a post about this somewhere? No more bullet proof coffee for me:)
Thanks again for all your kind words!
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Re: Saying hi and needing help

Post by NF52 »

Molissa wrote:...I have been working in the medical field since I was 18, and worked on a Alzheimer unit in a nursing home for 10 years. I still need to get tested, but if saturated fats are bad for those with the APO4 gene, what do we eat? Is there a post about this somewhere? No more bullet proof coffee for me:)
Thanks again for all your kind words!
Hi again, Melissa!

Deep thanks for your work with people with Alzheimer's. You could have helped my mother, and several of her siblings, and loved ones of many of our community members. We owe a debt that cannot be paid for the loving care you and those who also serve in these roles provide.

Here's a quick tip: to "tag" someone, click on the single quotation mark in the upper right hand corner of their post. That will bring over their entire post to a "post a reply" page. (If you are quoting someone like me who is wordy, feel free to delete all but one or two words :roll: ) That "quote" sends them an email notification, like you got from my reply.

To "subscribe" to your own topic so you get notified of any posts, whether they quote you or not, click on the wrench icon in the upper left under your topic title. Check out our How-To Guide for screen shots and directions for other tips.

You may want to read our Thinking about Testing? before spending money on that ApoE4 test. You would have practiced Universal Precautions in your work in the medical field, without knowing if any particular patient had HIV, Hepatitis or other serious contagious illnesses. You can choose to use what are likely to be healthy habits in the same way, without a test.
Saturated fats are probably not great for anyone in large quantities, but small amounts may not hurt us. (Says the woman who has small amounts of coffee with MCT oil each morning!)

Your dad may have a learning disability which prevented him from learning how to read; I have helped people with that level of dyslexia as a special educator. It might help his mood if he didn't have to ask for help so often.
One of the things my mother was willing to do was to have all of her bank statements and other "official" mail come to me, and she was also willing to make me both her health care proxy and her durable power of attorney (POA). If your dad has someone he trusts (his doctor, or minister) they may be able to explain that it's a great help to have you in those roles, and you could then have his mail changed to something like this:
Mr. John Smith
c/o Melissa Smith, POA
1 Main St (your address)
Anytown, KY
4/4 and still an optimist!
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Re: Saying hi and needing help

Post by NF52 »

Molissa wrote:Thank you all so much! What a nice community this is! I still need to figure out how to tag other's in a post lol
P.S. Don’t worry about “quoting” us! The interns and support people like me check posts regularly. So put that WAY down on your to-do list and just post whenever you want!
4/4 and still an optimist!
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MarcR
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Re: Saying hi and needing help

Post by MarcR »

Molissa wrote:if saturated fats are bad for those with the APO4 gene
Just a quick note to let you know that consensus on this point does not exist. Here's a topic linking and discussing a noted nutrition scientist's views:

Chris Masterjohn on saturated fat

Because some members notice that their LDL-C levels rise when they consume more saturated fat, opinions about saturated fat often boil down to concern about LDL. Here's a recent discussion on that topic:

Re: Blood Pressure Treatment Drastically Reduces Alzheimer’s Incidence
Molissa
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Re: Saying hi and needing help

Post by Molissa »

And the confusion continues... so much of this goes way over my head.
Thank you for the links,
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