New here and scared

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Lilli88
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Re: New here and scared

Postby Lilli88 » Wed May 01, 2019 4:05 am

It is so nice to see that there are so many responsive and understanding people on the forum. Maybe soon I will share with you my hard problem with which I could not share with anyone. I do not know how your site relates to links, but I want to share a blog where I found some very interesting stories http://essaymonth.com the girl shared her life stories and gave people the opportunity to feel not alone in their problems.
Last edited by Lilli88 on Thu May 02, 2019 9:21 am, edited 1 time in total.

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CarrieS
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Re: New here and scared

Postby CarrieS » Wed May 01, 2019 10:20 am

Lilli88 wrote:It is so nice to see that there are so many responsive and understanding people on the forum. Maybe soon I will share with you my hard problem with which I could not share with anyone.

Welcome to the Community Lilli88
You have indeed found a compassionate and caring group of people to share with and learn from. When you are comfortable, we'd love for you to share what brought you here in the Our Stories forum. This entry in the Wiki is a great resource to help you figure out how to navigate the information in the Forums and, as the name implies, get the most out of this website. Hugs to you!
Carrie
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DebS
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Re: New here and scared

Postby DebS » Wed May 01, 2019 5:14 pm

Lilli88 wrote:It is so nice to see that there are so many responsive and understanding people on the forum. Maybe soon I will share with you my hard problem with which I could not share with anyone.


Welcome, Lilli88. Feeling scared is normal. I am so glad to see that you are finding support and understanding here. This is a wonderful, warm, and knowledgeable community. If you haven't found it yet, you might want to start with our Primer written by Dr. Stavia. There you will find a wealth of information as well as a prioritized list of action steps. Change takes time. In many cases, arming yourself with knowledge will help you begin to feel more in control.

Please don't be shy about reaching out for if you have questions about the content, navigating the site, or just need a little extra support. We are here to help! I look forward to seeing your future posts.
Deb
Functional Medicine Certified Health Coach
National Board Certified Health and Wellness Coach
Certified Reversing Cognitive Decline

Jtmon
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Re: New here and scared

Postby Jtmon » Fri May 03, 2019 11:23 pm

slacker wrote:Welcome Natasha;

You are tough! Hang in there. We are here to support each other.

PS. The ApoE4 allele is a risk factor for Late onset AD. Age 50 would be considered early onset. And you have one allele, not 2! Life is good ;)


I am also pretty Terrified, so I know how Natasha is feeling. I’m 55, have been on Klonopin 2mg for almost 20 years and on the highest dose of Effexor for almost that long. I’m also on about 12 other meds including insulin. My greatest fear is losing my mind, which I feel is happening at an increasing rate. As a lifelong hypochondriac, I’m aware that once you believe you have something, you start developing all the symptoms. Funny when you think about it from a safe distance, but many like us never feel safely distant. Positive changes I’ve made in the last week:

1) trying to get off the Klonopin. Going to go down .5mg every two weeks and see what happens
2) Going in a keto diet. Just in the last couple of days, I’ve had to reduce my insulin by around 50% since I am eating very few carbs
3) adding melatonin to take the place of Klonopin as a sleep aid. Also trying some cbd oil at night
4) wearing blue blocking glasses at night. Don’t know if this is snake oil but giving it a shot
5) adding about ten other recommended supplements to my pill load, in the hopes of reducing my need for prescriptions.

There is nothing lonelier than being scared and trapped inside your head. I’d love to think that, one day, there will be a way up and out.

NF52
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Re: New here and scared

Postby NF52 » Sat May 04, 2019 9:42 am

Jtmon wrote:I am also pretty Terrified, so I know how Natasha is feeling. I’m 55, have been on Klonopin 2mg for almost 20 years and on the highest dose of Effexor for almost that long. I’m also on about 12 other meds including insulin. My greatest fear is losing my mind, which I feel is happening at an increasing rate... Positive changes I’ve made in the last week:

1) trying to get off the Klonopin. Going to go down .5mg every two weeks and see what happens
2) Going in a keto diet. Just in the last couple of days, I’ve had to reduce my insulin by around 50% since I am eating very few carbs
3) adding melatonin to take the place of Klonopin as a sleep aid. Also trying some cbd oil at night
4) wearing blue blocking glasses at night. Don’t know if this is snake oil but giving it a shot
5) adding about ten other recommended supplements to my pill load, in the hopes of reducing my need for prescriptions.

There is nothing lonelier than being scared and trapped inside your head. I’d love to think that, one day, there will be a way up and out.
Hugs, my friend. You've taken many wonderful steps in the last 2 weeks, including bravely reaching out on this forum. In fact, all of those steps required you to think about a future that is better, and different, than your life today. Dr. Martin Seligman is a wonderful psychologist (who I had as a professor decades ago when he was starting out). He is credited with coining the term "learned helplessness" to refer to the reaction that happens when animals or people have severe, chronic and unavoidable stress. More importantly, he also is a leading figure (and the founding father in my view) of the field of "Positive Psychology". He talks about how many people, himself included have an innate predisposition to anxiety and/or depression. Those people tend to see even a simple fender bender through the lens of "Permanent/Pervasive/Personal" as in "I am such as terrible driver; no one else would have backed into that sign. I can't do the simplest driving without a problem; I'll never be someone who isn't a klutz." An innate optimist will say "Who put that stupid sign here?! I'm a great driver; everyone has an accident once in a while; it's no big thing." In other words; they frame failures or undesired outcomes as External/Specific/Temporary.

Some of us inherited these tendencies (hand raised) and also had parents who with those same tendencies modeled those statements without malice (hand raised again). My own mother, when I was 10, came home and announced her doctor told her she had anemia and then added "and if I'm not careful it might become leukemia". Took me years to figure out that her hypochondria and not the doctor added the last half of that sentence!!

So trust me when I say that we don't have to be perfect. We do have to practice re-framing our thoughts into something like this:

"I have ApoE 4/4. The most recent large-scale studies of populations with this (not just people who show up at a memory clinic) predicts that I have a 45-70 % chance of NOT getting either Mild Cognitive Impairment or Dementia by the age of 85. If I were ApoE 3/4 that would rise to a 75-80% chance of keeping a healthy brain for my lifespan. If I exercise, keep up social contacts in person and online, eat a healthy diet, monitor my blood pressure and control my diabetes as much as possible, I can drive that risk even lower. I have many reasons to feel that this problem is specific and manageable!"


Be well, my friend.
4/4 and still an optimist!


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