How do I stop freaking out about this?

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
daydreams1991
Contributor
Contributor
Posts: 7
Joined: Tue Jul 02, 2019 4:26 pm

How do I stop freaking out about this?

Postby daydreams1991 » Sun Aug 18, 2019 3:26 pm

Let me say first off that I 100% understand that I’m taking this way too hard. I’m a 28 year old 3/4. I hopefully will have a long life ahead of me. I’m on a low carb, very low sugar diet. I exercise daily. My job is very brain intensive, among other things, and am constantly playing puzzle video games for years. And I cram a bunch of supplements you guys recommended here.

I just can’t stop thinking about my 4 allele. It’s been MONTHS now and every time I see an older person or forget a piece of information I’m reminded of it. I literally have to remind myself dozens of times a day to stop thinking about it and enjoy the present. My mom and siblings regularly tell me to stop worrying about it, which makes me stupidly bitter since I was the only one who ended up with the allele from my dad. I keep thinking I’m going to end up like my great grandmother who got dementia before she was 68 and died without knowing who she was at 72.

Every time I keep thinking I’m going to be OK, I see another study saying another gene I have could be contributing as well (I’ve stopped looking at such studies). I also keep thinking of the partial epilepsy I have and thinking that maybe it’s going to flare up and my medication won’t be enough and that it would help to rot my brain. (Fortunately my medication is only associated with better cognition, not worse.)

I guess what I’m asking here is: how long does it take for me to not worry about this anymore? I know I’m going to live a happy life, even if I were to get AD, but it’s hard getting to that point. My apologies for the incredibly selfish ramble.

Tincup
Mod
Mod
Posts: 2515
Joined: Fri Aug 08, 2014 2:57 pm
Location: Front Range, CO

Re: How do I stop freaking out about this?

Postby Tincup » Sun Aug 18, 2019 3:37 pm

daydreams1991 wrote:I guess what I’m asking here is: how long does it take for me to not worry about this anymore? I know I’m going to live a happy life, even if I were to get AD, but it’s hard getting to that point. My apologies for the incredibly selfish ramble.


I'm 64, 3/4 and my mother had dementia/AD. My suggestion is to assume the worst case, you get AD at some point. Then think how you will deal with it. Then go live your life. You are doing the right things healthwise to mitigate your risk. I have a 31 year old family member who is 3/4 and is also two years into a glioblastoma (brain cancer) diagnosis. He is now a "long term survivor" for that illness (same diagnosis as Sen. John McCain who lived 1 year). If he gets to the age where his 3/4 becomes an issue for brain or heart issues, he will be very lucky. My point being there are lots of things that can happen in the next 40-50 years. Living that long and getting AD is not the worst case.

Since you are already doing good things with your lifestyle, you may want to limit participation here and get involved elsewhere so your 3/4 status isn't being presented to you all the time.
Tincup
E3,E4

NF52
Support Team
Support Team
Posts: 1271
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: How do I stop freaking out about this?

Postby NF52 » Sun Aug 18, 2019 9:48 pm

daydreams1991 wrote:Let me say first off that I 100% understand that I’m taking this way too hard. I’m a 28 year old 3/4. I hopefully will have a long life ahead of me....
I just can’t stop thinking about my 4 allele. It’s been MONTHS now and every time I see an older person or forget a piece of information I’m reminded of it. I literally have to remind myself dozens of times a day to stop thinking about it and enjoy the present. My mom and siblings regularly tell me to stop worrying about it, which makes me stupidly bitter since I was the only one who ended up with the allele from my dad. I keep thinking I’m going to end up like my great grandmother who got dementia before she was 68 and died without knowing who she was at 72....
I guess what I’m asking here is: how long does it take for me to not worry about this anymore? I know I’m going to live a happy life, even if I were to get AD, but it’s hard getting to that point. My apologies for the incredibly selfish ramble.
Hi daydreams1991,
I'm going to quote your opening to make a point: "Let me say first off that I 100% understand that it is perfectly normal to feel the way you do" Here's a similar situation: Someone 28 (me) has her first child and finds out that he was born with several congenital (not genetic) anomalies. Not anything she did wrong in the pregnancy, just a 1 in 4500 chance that he'd be the baby who would need surgery at one day old, and five weeks old, and two years old and three years old and finally heart surgery when he was 5 years old. And she (ME) couldn't stop thinking it was unfair that other people's babies never even got ear infections and slept through the night. And she spent months worrying about his health--until she (I) realized what a smart, gorgeous, independent and brave person he was and how much I was learning from being his mother.

So what you're feeling and I felt has a name "Acute Medical Trauma Stress Response". It happens when we or someone close to us has an unexpected medical crisis or possibility of future crisis and we feel anger, or fear, or crippling anxiety, or the need to learn everything we can, or the desire to avoid learning anything more. Or we don't sleep well, or we feel (correctly) that our loved ones don't understand our feelings and their response isn't helpful. The most helpful response is this, which medical people are now using more often: Validate the feelings as normal, NOT abnormal. Allow the person to talk about them. Encourage them to think of a future time when this might feel less of an issue (like if you're 67 and a 4/4 like me and still reading PubMed articles and critiquing grant applications for AD research panels and thinking--maybe this isn't going to be a problem)
Even better, encourage them to think of active steps they can take when feeling anxious--drawing, exercise, deep breathing, remembering how well you cope with a seizure disorder (your brain is a champ at work-arounds!)

You may even want to think about talking some with a knowledgeable health coach who can listen in a way your family can't right now. You can find some of them on our wiki: ApoE4-Aware Health Coaches, You may want to talk to your doctor about a trial of an anti-anxiety medication, or a medication that has both some anti-anxiety and anti-depressant qualities like wellbutrin.

And for that big question of how long it takes: It took me about 2 years when I found out at age 62. You don't have to have a "fix-by" date, though--you just need to tell yourself "I have been strong before and I will be able to be strong enough for this".

One last thought: Nobody could accurately diagnose your great-grandmother with Alzheimer's. From my own family history, a woman of that age who might have died in 1960 or earlier, was FAR more likely to have had heart disease that caused vascular dementia. Nobody then thought that blood pressure of 160 over 100 at age 60 was a problem, and nobody thought beef marbled through and through with fat was a problem and nobody thought women had heart attacks until they died from them or strokes or Alzheimer's. You are not your great-grandmother; her fate is not yours.

Be well, and have those good daydreams!
4/4 and still an optimist!

User avatar
Jmac
Contributor
Contributor
Posts: 136
Joined: Mon Aug 05, 2019 7:59 pm
Location: Georgia, USA

Re: How do I stop freaking out about this?

Postby Jmac » Mon Aug 19, 2019 4:42 am

daydreams1991 wrote:Every time I keep thinking I’m going to be OK, I see another study saying another gene I have could be contributing as well (I’ve stopped looking at such studies).


Great advice from the others. Here's another suggestion --- we are learning SO much NOW about this. More than likely, by the time it MAY be wanting to kick in for those who are your age the way you'll be thinking about it is "dang, I was ahead of the curve and worried about nothing" and you'll laugh. Right now the majority of the news I read and listen to via podcast or YouTube is that we're on the cusp of figuring out all the things that kick the gene into action. And that there are a ton of ways to stop it, even reverse it if it starts to happen. That's now. What are they going to figure out tomorrow? the next day?

That gene may mean you have a higher shot than the rest of the family, but you can stop it from happening 'cause you know about it. "They" (all the people in the know about prevention that I've read) say that you pretty much have control over whether that gene "expresses" or not. Look at the research, figure out how much you want to incorporate into your wonderful life and put a reminder on your phone for 10 years from now to kick it up a notch...and another for 10 years later to kick it up a bit more (assuming they haven't come up with the ultra-prevention program :-)). Sugar-free (or ultra sugar light), eating a ton of veggies, making sure you get good sleep, exercise are all things that will help keep you healthy. Period.

It never ever hurts to take care of your health, And knowledge is POWER. You know something about one little ol' aspect of what MIGHT happen. Turn it around. You can, in your head, tell yourself you're smarter and more aware now, that you are not going to let some roll of life's dice ruin your fabulous life. You're gonna kick butt in life and you will someday listen as they put the nail in the coffin of dementia long before it might rear its head in your life. Hugs.

User avatar
Stavia
Mod
Mod
Posts: 5265
Joined: Tue Apr 29, 2014 6:47 pm
Location: Middle Earth

Re: How do I stop freaking out about this?

Postby Stavia » Mon Aug 19, 2019 12:16 pm

Hi daydreams and welcome.
You have got some really good advice here from members whose opinion I value very highly.
I would like to add that I see patients from time to time who can't stop thinking about a particular health anxiety - maybe a risk of cancer, or heart attack, or stroke or maybe something else. They report intrusive thoughts that are very distressing and exhausting.
Usually simple constant reassurance doesnt help, or knowing the facts that you arent at any risk now or for many decades doesnt help either, and they need therapy. Please consider this as an option.

Sent from my SM-N960F using Tapatalk

User avatar
Stavia
Mod
Mod
Posts: 5265
Joined: Tue Apr 29, 2014 6:47 pm
Location: Middle Earth

Re: RE: Re: How do I stop freaking out about this?

Postby Stavia » Mon Aug 19, 2019 12:20 pm

Tincup wrote:
daydreams1991 wrote:I guess what I’m asking here is: how long does it take for me to not worry about this anymore? I know I’m going to live a happy life, even if I were to get AD, but it’s hard getting to that point. My apologies for the incredibly selfish ramble.


My suggestion is to assume the worst case, you get AD at some point. Then think how you will deal with it. Then go live your life.


Tincup, this is absolutely how I feel. You put it beautifully.

Its also the Stoic philosophy in dealing with hardship.


Sent from my SM-N960F using Tapatalk

daydreams1991
Contributor
Contributor
Posts: 7
Joined: Tue Jul 02, 2019 4:26 pm

Re: How do I stop freaking out about this?

Postby daydreams1991 » Mon Aug 19, 2019 2:05 pm

Thank you to everyone for responding. I know that eventually this pain will fade and I'll be much more accepting of this. I know already that I've been feeling really good lately. I had a solid day today and I only thought about it a few times.

I'm not much of a "defeatist" per say. I want to hope that I live a life that is AD free. Instead of assuming the worst case as some have suggested now and in the past, I will instead say to myself: "I can get AD in the future, but I'm strong and I will do everything to prevent it. In doing so, I will lessen my anxiety over not only this but everything else. I will live a happier life because of my knowledge of my 3/4 status." I think that these comments are helpful, but, being a practicing Christian, I want to have hope.

I'll also start to take my trauma seriously, since I know realize that this is probably what it is. If this keeps up, I'll go and talk to a coach. (Therapy is unfortunately too expensive for me right now). Serious thanks especially to NF52 and Jmac. Your responses really helped me put things into perspective. Hugs back to all if you want them.

User avatar
Lisa G
Contributor
Contributor
Posts: 62
Joined: Sat Aug 03, 2019 7:05 am
Contact:

Re: How do I stop freaking out about this?

Postby Lisa G » Mon Aug 19, 2019 2:42 pm

daydreams1991 wrote:I think that these comments are helpful, but, being a practicing Christian, I want to have hope.


Hi Daydreams! Since you mentioned your Christianity, here's a beautiful verse from 1 Peter (5:10)
"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast."

You are strong!
Blessings,
Lisa
Lisa H. Gerardi, MA
National Board Certified - Health & Wellness Coach
Functional Medicine Certified Health Coach
Integrative Nutrition Certified Coach

donbob
Contributor
Contributor
Posts: 76
Joined: Wed Oct 31, 2018 6:59 am

Re: How do I stop freaking out about this?

Postby donbob » Mon Aug 19, 2019 3:52 pm

Considering the wonderful, wise responses you have already received, I hesitate to offer my layman’s input. Meditation and yoga have been very good for me with respect to unwanted ruminations. Best wishes.
DonBob
e3e4

IForgot
Contributor
Contributor
Posts: 23
Joined: Mon Jul 29, 2019 10:43 am

Re: How do I stop freaking out about this?

Postby IForgot » Thu Aug 22, 2019 3:24 pm

Hi Daydreams,
When I had feelings such as you're expressing, my Mom would say, "think on the bright side and all the positive things you have going for you".
To that end, you could be an e4/e4 and 70YO, like me. You have extensive time to make the right choices for the best outcome your genes can give you.
If it helps any, my advice is to learn all you can about your genetic deck of cards, make appropriate lifestyle changes, hit cruise and enjoy life.
About a year ago, I discovered Pickle Ball. It's a great sport that checks two boxes at once, aerobic exercise and socialization. I recently bought the app, Lumosity. It's a scientifically designed set of brain games for cognitive improvement. I look forward to my brain workout every morning!
Be well, be strong and carry on!


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 14 guests

 

 

cron