Hey y’all, my first time.

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Justonemore
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Hey y’all, my first time.

Postby Justonemore » Mon Feb 04, 2019 8:43 pm

Well, I was told about y’all at 12:30am this morning. Guess it would be this morning. I’m 62, wife, mom to 3 boys and YaYa to 2 of the most beautiful grandkids ever. My Oldest son is a LT Colonel in Special Forces, middle one (besides father of my g-babies) is a LT Fire/Medic and my youngest is 38 and born with severe mental and physical handicaps. He’s about 8 months cognitively so it’s like caring for a 8 month or so child that can do nothing for hisself. On the other side he is the sweetest, happiest and nosiest person you met! Lol! He has to be watching everything you do. Husband is retired. Now, about me. My story goes all the way back to the mid 70’s. My paternal grandmother was diagnosed with Alzheimer’s. I stood outside with my dad the day we were all told to go to be with her because she wasn’t expected to live the full day. He told me he never wanted to live that. This was after she had been unresponsive for almost a year. Flash forward to mid 2000’s. I noticed a number of things about dad that wasn’t him. He was always the most laid back and easygoing man. Kind. It changed. He was diagnosed. Mom had to but him in a lockdown facility for about a year. She might as well moved up there too. Every day she was up there before daylight to help him all day and didn’t go home until at night when he was asleep. I’ve seen a more devoted woman. Then she took him home and cared for him there until he died about another year after. I have to stop and tell you the last thing my dad ever said to me. While in the facility I was slowly walking with him. I took him out into the little open air garden and we sat down on a bench. My dad looked at me and I “saw him” in his eyes. He said, “Debra, I’m scared”. Then like a flash of light he was gone again. I told him not to worry, we will care for him, love him and all that but he wasn’t there. The first time he noticed I was there or who I was and the very last words. The next year one of his brothers was diagnosed and is now gone too. There was the possibility of another one but he ended up dying before diagnoses. Around that timeframe I was working on my genealogy. I decided to join 23 and Me. The report mentioned that I have Apoe4. Of course it was concerning to me but never bothered me. Until the last year or so, that is. I’ve noticed I can’t remember words a lot when I talking to someone and have to stop and ask them to help me figure out what I’m trying to say. I sometimes will argue that I either did or didn’t do/say whatever. Everyone forgets as they age but this is different. My best friend has noticed it and we’ve discussed it. My husband just tells me I’m not going to get it when I try to have a conversation about it. One good thing is the report did say I wasn’t likely to be someone who would commit suicide. Thank God! LOL! . Long story I’ve already wrote, short, is it’s very prevalent in my dads side, I’m gene positive on the ApoE4 and I’m sure I’m starting down a slippery slope. Now what?

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Re: Hey y’all, my first time.

Postby srbogert » Tue Feb 05, 2019 3:35 am

Justonemore wrote:Well, I was told about y’all at 12:30am this morning. Guess it would be this morning. I’m 62, wife, mom to 3 boys and YaYa to 2 of the most beautiful grandkids ever. ... My paternal grandmother was diagnosed with Alzheimer’s. ... I noticed a number of things about dad that wasn’t him. He was always the most laid back and easygoing man. Kind. It changed. He was diagnosed. ... I decided to join 23 and Me. The report mentioned that I have Apoe4 ..... I’ve noticed I can’t remember words a lot when I talking to someone and have to stop and ask them to help me figure out what I’m trying to say. I sometimes will argue that I either did or didn’t do/say whatever. ... My best friend has noticed it and we’ve discussed it. My husband just tells me I’m not going to get it when I try to have a conversation about it. ... . Long story I’ve already wrote, short, is it’s very prevalent in my dads side, I’m gene positive on the ApoE4 and I’m sure I’m starting down a slippery slope. Now what?


Hello JustOneMore, and welcome to the group. The family history you describe must have been difficult to live through. I am sorry for your pain. Many others on this group have shared similar experiences. Alzheimer's is a very difficult disease for both the patient and their loved ones.

I am happy though that I can offer some good news. First, take heart in the fact that genetics are not destiny. There are many things you can do to minimize the influence of the ApoE4 gene. Many members of the site carry the ApoE4 gene, and are leading very full and rewarding lives into their later years. (I'll say more on how they are doing it later in this note). The second bit of good news is that medical science has learned a lot about ApoE4 and Alzheimer's in the last few years. For example: Dr Dale Bredesen, one of the leaders in this research, has developed a treatment protocol that has shown success in slowing, and even reversing the effects of Alzheimer's. The final bit of good news is that you are now a member of the ApoE4.info site, and I believe that you will find it to be very helpful and supportive as you learn about and deal with ApoE4 in your own life.

It is common to feel some alarm when you first learn that you carry the ApoE4 gene. Once the initial shock has passed, people tend to respond in one of several ways. They may become overwhelmed with fear, or they may slip into denial. A healthier approach is to be learn about ApoE4 and Alzheimer's, get a medical evaluation by a Functional Medicine or Bredesen trained practitioner (there are several mechanisms at work in cognitive decline, and it is important to know which ones affect you), and then make a plan for how you are going to manage your particular situation. From your post, it sounds like you are just beginning your journey on this healthier approach, and you want to know where to start.

There are several good ways to learn about Alzheimers' and ApoE4. A great resource to start with is with the ApoE4 Primer available on this site. It was written by Stavia, who is a group moderator, a physician, and an ApoE4/4 carrier. The primer gives you a working background on the gene, like the difference between being 3/4 or 4/4. It explains different lab tests that may be helpful in defining your particular situation, and it offers advice on things you can do to minimize the impact of carrying this gene (one of the options involves chocolate!). Another good resource is Dr Dale Bredesen's book "The End of Alzheimer's". He discusses the different biological mechanisms involved, and describes his protocol that has proven effective in preventing and treating cognitive decline. And of course, you can gain a lot of good information by just reading the posts of other site members. I'll suggest you read the "How to Get the Most out of the ApoE4 Website" page to learn the most efficient ways to search for information and create posts.

When you are ready to see a practitioner, take a look at the "Searching for a Health Practitioner" page. In my experience, many conventional primary care medical groups are not familiar with the latest research, and so they are not comfortable with or effective at using the new approaches to prevent cognitive decline. I believe that working with a Bredesen trained practitioner will get you the kind of help you want.

This has turned into a very long response. I could say more, but I think its best I stop now. Let us know if you have any more questions. And again - Welcome to the group!
Functional Medicine Certified Health Coach
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Justonemore
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Re: Hey y’all, my first time.

Postby Justonemore » Tue Feb 05, 2019 6:04 am

Thank you sir. I agree that it does look to be very beneficial. To be honest I don’t believe it has been overwhelming as far as myself, especially at the first. I’ve known about the apeo4 for a while. When I started noticing a few signs is when I became uneasy. I can email easily because I can take time. It’s when the words were difficult and spelling. Have always been a good speller. I’ve read we are definitely not doomed, thank gosh. My main goal with my family is trying to get them to accept the very real possibility and making plans ahead of time just in case it is needed. The last thing I want to be is a financial and emotional burden. Loosing a number of my family members makes me very well aware of those things. I thank you very much for you kind words and support

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Re: Hey y’all, my first time.

Postby NF52 » Tue Feb 05, 2019 7:20 am

Justonemore wrote: My main goal with my family is trying to get them to accept the very real possibility and making plans ahead of time just in case it is needed. The last thing I want to be is a financial and emotional burden. Loosing a number of my family members makes me very well aware of those things. I thank you very much for you kind words and support
Welcome, "Justonemore"!

I feel like I know you already! If I were nearby, I'm sure we'd meet, hug, sit down for some coffee (and maybe something to go with it) and share stories about our 3 kids and 2 grandkids (yup, same numbers here). I'm a little older (66) and ApoE 4/4, and my kids are a little younger, but I know the feeling of wanting to keep the ship sailing smoothly as long as possible and make plans for any contingencies.

I have wonderful, vivid memories of people like your 38 year old son from a long career in special education. We are all "people first", who all happen to also have other ranges of challenges. I have spent time in the homes of more than one happy, "nosy" and sweet person, and know how parents often feel a special blessing to have an angel in their lives who can make them laugh, and who will always love and be loved. So give him an extra hug from someone who also loves those special souls.

I am guessing that you have some specific questions about how to plan for what he, and you and your husband, might need if you do have more cognitive challenges. That's a good idea for anyone with a special needs family member as we get older. If I'm right, then for your son you might want to contact The ARC of Indian River County. Although I am not familiar with them specifically, I have found other ARCs to be great resources for knowing how to get in-home supports, respite services (if you have to be at appointments, or just would like a day or two off once in a blue moon) as well as having discussions about having your son begin to spend time with other young adults with similar needs. (He may be doing that already, of course.) Most states have greatly expanded their focus on consumer-directed services, meaning they are far more open to listening to what YOU want for your son and meeting to come up with "person-centered planning". So if your son likes to listen to music and have dogs around, for example, they can help to develop both short and long-term plans to be sure that is part of his life.

For yourself, you may want to talk with your husband and firefighter/EMT son (who I assume is nearby) about meeting with a lawyer for things like a Power of Attorney and Health Care Proxy, and help with online banking and automatic payment of most bills. (I have most bills paid automatically from our checking account and love not having to write checks and lick stamps every month!) Plus, most insurance companies and health care providers will let you designate someone to be notified if you forget a payment so that you don't accidentally let coverage lapse.

BUT--I also think you should be proactive for yourself! As our helpful SRBogert noted, there are recommendations in Dr. Bredesen's book on ways to make some changes in your diet, sleep, exercise and supplements that may help. Even better, our own Dr. Stavia, who is also 4/4, has written the Primer which is easy to browse and has topic headings that help you take small steps. For example, I bet your family doctor already has a good history of your blood pressure readings; if those have been tracking higher, getting them down to closer to 120 as the top number may be helpful, according to a recent study called "SPRINT". Switching from saturated fats (heavy cheese and cream, butter, margarine, peanut butter) to "healthy" fats (almond butter, almond milk, extra virgin olive oil, avocados, nuts) and having a variety of vegetables and fewer processed or smoked foods may help your brain and heart. Your doctor could also check your fasting insulin, thyroid and Vitamin D and B-12. Some studies suggest that women our age often don't get as much protein as we need, or enough B-12 to get our level up to the recommended "500" on a blood test. (I'm in a clinical trial and got word of this from them after a test, so now take as an easy melt-in-your-mouth pill in a form called methylcobalamin B-12.)

If you and your husband have the ability to travel an hour or so, there are research centers that could do some testing to give you more information about your current levels. There are also a number of clinical trials using drugs and other treatments that may slow down changes in people who do have some memory issues. If you're interested in that, let me know and I can send you some specifics through our Private Messages.

And since you also scuba dive, ride horses and care for rescue dogs, according to your profile--keep doing all of what you love! It sounds like a great way to have fun and exercise and feel alive above and under the water!
4/4 and still an optimist!

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Re: Hey y’all, my first time.

Postby Lucy5 » Tue Feb 05, 2019 10:05 am

And here's an additional welcome to our community from another ApoE4/4 grandmother.

Nevermind, I'm so glad you found us and shared your story. From where I sit, I see an amazing woman with a wonderful family, an active life in a beautiful Florida town I would love to visit some day, along with an outlook on life that I so admire and believe can make a real difference in one's health trajectory.

You've already received a good deal of excellent advice from our NF52 and sfbogert. There's just a couple thoughts I'd like to add.
I feel that absorbing information about our troublesome gene and how to offset it's effects can definitely be overwhelming at times. It certainly was and often continues to be for me! So take it slowly and prioritize and focus on what may be the most impactful lifestyle changes for you. To help you do that, I believe our Primer is a great place to start because it provides that overview of our gene and the challenges it presents along with clearly stated, prioritized suggestions as to which approaches may be most meaningful. I refer back to it often when I get too lost in the weeds, so to speak, and it helps to keep me on track.

Nevermind, as I read your introduction, I was so sorry to hear what your family has been through. Many of us understand so well how difficult and painful it is to watch loved ones struggle in this way. And, of course, we become keenly aware of and worry about any perceived changes in our own cognition. But as you continue browsing through our forums and read the emerging studies discussing the positive impacts of key lifestyle strategies, I hope you'll come to believe that there is much each of us can do to impact our own stories going forward.

Please don't hesitate to continue sharing how you and your family are doing and ask questions any time as they come up! We've all been where you are now and want to provide the support to newer members that we all received along the way. Looking forward to hearing more from you...warmly, Lucy


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