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Two generations at once...

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Jmac
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Two generations at once...

Postby Jmac » Sat Aug 17, 2019 7:36 am

Discovered a few months back that my mom was having serious issues with her cognition. We had been up for family gatherings and noted she was having some minor issues but it didn't seem bad. My parents are the type that won't share their problems and don't go to the doctor unless under duress so we had no idea how bad it really had gotten. Mom's issues finally became obvious enough that I went for a longer visit to help and see what was going on.

I won't go into all the symptoms and problems, but I started researching, watching YouTube videos, listening to podcasts, reading books, etc. I "assumed" it was AD or some form of dementia as it "fit". My grandmother had heart problems and a form of paranoid dementia, my great-grandmother also had dementia issues toward the end. I've always been concerned that I would walk the same path so have been somewhat of a 'health nut'.

It's been a few months. During that time I ran across an old YouTube video interview by the 700 Club (Christian station) with Dr. Dale Bredesen. My mom is a strong Christian so I thought that would be a great motivator to get her to make dietary changes. As I started binging on Bredesen, and others like Amen, Gundry, Hyman, etc., I realized that it might be a good idea to go ahead, bite the bullet and do the 23andMe health/DNA thing. While I was debating Amazon popped up with a half-price deal on Prime Day so I took that as a "get off your butt moment" and bit the bullet. I learned that I was a 3/4.

The info they gave in the report looked great --- not a carrier, no other health issues, just that pesky APOE4. Then I took the raw data and ran it through Rhonda Patrick's FitnessMyFitness program (whatever the technical term is :-)). I learned that I had all kinds of genes that contributed to making me more prone to AD or dementia. I have choline issues, don't process this and that properly, and so on (more on this at the end if you're interested). Now I'm working on fixing the things that are fixable.

What a journey! I think doing the 23andMe may have been the smartest thing I've ever done in regards to my own health --- and it's helped me help my mother. Plus my sisters are getting ready to "23andMe it" and have been making changes in their diets and lifestyle.

No matter what happens with my Mom --- and I have great hope --- her children are going to benefit from her life.

Going back to my mother's issues... I finally got her to a doctor this past Wednesday, ran blood tests. We also convinced her to go see a urologist for her urinary issues. The doctor recommended a neurologist and we were lucky enough to get in yesterday, Friday.

Mom had half her thyroid removed 30+ years ago and the other half didn't function. She has been taking Synthroid since then. During my Bredesen reading, and other reading, I learned that Synthroid can stop working and that weight loss can affect the dosage --- and that excess can result in all the symptoms mom has been experiencing (brain fog, memory issues, tremors, hair loss, weight loss, etc.).

Mom had lost from a size 16 to a size 5 or 6 over the past year or two (which we attributed to her determination not to take cholesterol meds and the resulting dietary changes). The blood tests showed that she had an excess of Free T (thyroxine). Her new doctor wasn't sure that could be the problem so suggested we go ahead with the neurologist. The neurologist did her assessment and, when she found out about the thyroid issue, said before we went any further we needed to address that, so her dosages are going to be decreased. We went ahead and set up an appointment with a neuropsychologist but it'll be a few months before we can get in, the neuro said we can cancel easily if it turns out the issue is primarily the Synthroid.

My thought process is that the combination of urinary issues and the restlessness issues from too much thyroxine seriously impacted her sleep for who knows how many years. The lack of decent sleep with the overdose of Synthroid may have kicked in AD/Dementia and it may or may not be reversible. We're addressing all the issues from diet to sleep to Synthroid.

Given that I have one APOE4 marker and all the other contributing factors, I'm "assuming" that I probably got it from my mom as there is nothing remotely like dementia on the paternal side. Heart issues also run on mom's side of the family which is another factor that makes me think it's her side. SO, I am going to encourage her to keep on with the Bredesen Protocol (although we haven't done the actual RECODE, etc.).

I am saving my pennies as at some point I will probably spend the money for RECODE. Right now I'm taking the supplements he recommends, was already gluten-free and sugar-free, was plant-based but now have added wild-caught salmon to my diet, already had a workout routine (although I've moved it from the evening to the morning to improve my sleep) and made other changes.

A few interesting things from Rhonda Patrick's report: Turns out I have the gene that gives me susceptibility for celiac and gluten intolerance. I was already gluten-free as many, many years back learned that it caused issues but it was kind of cool getting confirmation. I also have a bunch of fat genes (thank you mom :-)), problems with choline, shorter telomere length, a number of genes that point to longer lifespan, some genes that give me increased chance of cancer (one combined with longer lifespan, ha), some that are contradictory (less mental decline with one, dietary issues that increase chances of mental decline --- hoping they cancel each other out :-)), B12 assimilation issue, problem going into deep sleep and so on and so on. With all that's been going on with Mom I haven't had a chance to really dig in and find out what it all means ---- that's my next step.

I am not the least bit worried or down or overly concerned about anything in my report. It gives me great hope for good things because I have the info. I can make the changes now, keep all those nasty buggers from kicking in if possible. I am hopeful in regards to my mother. She is determined to fight and mostly hopeful (she had been extremely depressed, something she didn't share with anyone but my dad). I am thankful that I ran across Dr. Bredesen's info, for all the great info we now have at our fingertips via the internet, all the others who are researching and fighting and learning things that will help us all, and for this forum which has been a fount of information and support.

(Boy, I went long, didn't I?)

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SusanJ
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Re: Two generations at once...

Postby SusanJ » Sun Aug 18, 2019 8:40 am

Jmac wrote:I am not the least bit worried or down or overly concerned about anything in my report. It gives me great hope for good things because I have the info. I can make the changes now, keep all those nasty buggers from kicking in if possible. I am hopeful in regards to my mother. She is determined to fight and mostly hopeful (she had been extremely depressed, something she didn't share with anyone but my dad).


Your attitude is amazing and the work you are doing for your mom will pay off in the long term! Feel free to keep exploring the site and ask questions on any topic. You never know when someone else's experience speaks to your own unique challenges. And the search function can be very helpful to look for specific information like thyroid problems. If you haven't found it yet, we have a post on how best to use the site that will help.

Hugs from another 3/4 sister.

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Sara Mushel, MS
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Re: Two generations at once...

Postby Sara Mushel, MS » Sun Aug 18, 2019 4:42 pm

No matter what happens with my Mom --- and I have great hope --- her children are going to benefit from her life.


Hi Jmac,

I am so impressed by your hopeful attitude as you process all of this information; I also admire your approach to perceiving your mom's health issues as a blessing in disguise for you and your siblings. There is a multitude of exciting science about the epigenetics of disease and how lifestyle affects gene expression. On that note, I commend you for your incorporating Dr. Bredesen's recommendations. Knowledge is power! Thanks for being an inspiration for all of us! I hope you find that many of your mother's symptoms are indeed a reaction to excessive Synthroid and I look forward to hearing how that goes for her when you'd like to share.

Sara Mushel

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HopefulCaroline
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Re: Two generations at once...

Postby HopefulCaroline » Mon Aug 19, 2019 7:45 pm

Jmac wrote:Discovered a few months back that my mom was having serious issues with her cognition. We had been up for family gatherings and noted she was having some minor issues but it didn't seem bad. My parents are the type that won't share their problems and don't go to the doctor unless under duress so we had no idea how bad it really had gotten. Mom's issues finally became obvious enough that I went for a longer visit to help and see what was going on.

I won't go into all the symptoms and problems, but I started researching, watching YouTube videos, listening to podcasts, reading books, etc. I "assumed" it was AD or some form of dementia as it "fit". My grandmother had heart problems and a form of paranoid dementia, my great-grandmother also had dementia issues toward the end. I've always been concerned that I would walk the same path so have been somewhat of a 'health nut'.

It's been a few months. During that time I ran across an old YouTube video interview by the 700 Club (Christian station) with Dr. Dale Bredesen. My mom is a strong Christian so I thought that would be a great motivator to get her to make dietary changes. As I started binging on Bredesen, and others like Amen, Gundry, Hyman, etc., I realized that it might be a good idea to go ahead, bite the bullet and do the 23andMe health/DNA thing. While I was debating Amazon popped up with a half-price deal on Prime Day so I took that as a "get off your butt moment" and bit the bullet. I learned that I was a 3/4.

The info they gave in the report looked great --- not a carrier, no other health issues, just that pesky APOE4. Then I took the raw data and ran it through Rhonda Patrick's FitnessMyFitness program (whatever the technical term is :-)). I learned that I had all kinds of genes that contributed to making me more prone to AD or dementia. I have choline issues, don't process this and that properly, and so on (more on this at the end if you're interested). Now I'm working on fixing the things that are fixable.

What a journey! I think doing the 23andMe may have been the smartest thing I've ever done in regards to my own health --- and it's helped me help my mother. Plus my sisters are getting ready to "23andMe it" and have been making changes in their diets and lifestyle.

No matter what happens with my Mom --- and I have great hope --- her children are going to benefit from her life.

Going back to my mother's issues... I finally got her to a doctor this past Wednesday, ran blood tests. We also convinced her to go see a urologist for her urinary issues. The doctor recommended a neurologist and we were lucky enough to get in yesterday, Friday.

Mom had half her thyroid removed 30+ years ago and the other half didn't function. She has been taking Synthroid since then. During my Bredesen reading, and other reading, I learned that Synthroid can stop working and that weight loss can affect the dosage --- and that excess can result in all the symptoms mom has been experiencing (brain fog, memory issues, tremors, hair loss, weight loss, etc.).

Mom had lost from a size 16 to a size 5 or 6 over the past year or two (which we attributed to her determination not to take cholesterol meds and the resulting dietary changes). The blood tests showed that she had an excess of Free T (thyroxine). Her new doctor wasn't sure that could be the problem so suggested we go ahead with the neurologist. The neurologist did her assessment and, when she found out about the thyroid issue, said before we went any further we needed to address that, so her dosages are going to be decreased. We went ahead and set up an appointment with a neuropsychologist but it'll be a few months before we can get in, the neuro said we can cancel easily if it turns out the issue is primarily the Synthroid.

My thought process is that the combination of urinary issues and the restlessness issues from too much thyroxine seriously impacted her sleep for who knows how many years. The lack of decent sleep with the overdose of Synthroid may have kicked in AD/Dementia and it may or may not be reversible. We're addressing all the issues from diet to sleep to Synthroid.

Given that I have one APOE4 marker and all the other contributing factors, I'm "assuming" that I probably got it from my mom as there is nothing remotely like dementia on the paternal side. Heart issues also run on mom's side of the family which is another factor that makes me think it's her side. SO, I am going to encourage her to keep on with the Bredesen Protocol (although we haven't done the actual RECODE, etc.).

I am saving my pennies as at some point I will probably spend the money for RECODE. Right now I'm taking the supplements he recommends, was already gluten-free and sugar-free, was plant-based but now have added wild-caught salmon to my diet, already had a workout routine (although I've moved it from the evening to the morning to improve my sleep) and made other changes.

A few interesting things from Rhonda Patrick's report: Turns out I have the gene that gives me susceptibility for celiac and gluten intolerance. I was already gluten-free as many, many years back learned that it caused issues but it was kind of cool getting confirmation. I also have a bunch of fat genes (thank you mom :-)), problems with choline, shorter telomere length, a number of genes that point to longer lifespan, some genes that give me increased chance of cancer (one combined with longer lifespan, ha), some that are contradictory (less mental decline with one, dietary issues that increase chances of mental decline --- hoping they cancel each other out :-)), B12 assimilation issue, problem going into deep sleep and so on and so on. With all that's been going on with Mom I haven't had a chance to really dig in and find out what it all means ---- that's my next step.

I am not the least bit worried or down or overly concerned about anything in my report. It gives me great hope for good things because I have the info. I can make the changes now, keep all those nasty buggers from kicking in if possible. I am hopeful in regards to my mother. She is determined to fight and mostly hopeful (she had been extremely depressed, something she didn't share with anyone but my dad). I am thankful that I ran across Dr. Bredesen's info, for all the great info we now have at our fingertips via the internet, all the others who are researching and fighting and learning things that will help us all, and for this forum which has been a fount of information and support.

(Boy, I went long, didn't I?)



Welcome Jmac,
We are so happy to have you! Thank you for sharing your story. I can very much relate as your mother's symptoms sound very similar to what my own mom is experiencing. Your positive attitude is very inspiring to me as well as your mom's determination to fight! That is fantastic. I hope you continue to share. I have finally convinced my mom to see a neurologist and am nervous to hear any bad news. I will keep your positivity in mind! Thank you.
Wishing you the best,
Caroline
Caroline
ApoE4.info Intern
Functional Medicine Certified Health Coach
“What grows never grows old.” -Noah Benshea

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Jmac
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Re: Two generations at once...

Postby Jmac » Tue Aug 20, 2019 8:57 am

HopefulCaroline wrote:
Jmac wrote:Welcome Jmac,
We are so happy to have you! Thank you for sharing your story. I can very much relate as your mother's symptoms sound very similar to what my own mom is experiencing. Your positive attitude is very inspiring to me as well as your mom's determination to fight! That is fantastic. I hope you continue to share. I have finally convinced my mom to see a neurologist and am nervous to hear any bad news. I will keep your positivity in mind! Thank you.
Wishing you the best,
Caroline


My mom was so nervous when we went to the neurologist that she was shaking. It would have been helpful if they had a "what to expect" on their website! I could have prepared her better (and myself!). They did the standard test, gave her three words to repeat, remember, asked her to spell "world" backward, draw a clock and put the time they gave on it, etc. Most of the visit was rather comfortable with the neuro trying to put mom at ease, very friendly, with questions about what she thought, when she thought she started having memory issues, what else was going on, history and more. She also asked my dad and me questions but didn't make it seem as though she was talking around, down, or about mom, involved her. They tested her physical reflexes with the standard thing where they push on arms and ask you to resist, thump the spots on knees, etc.

One thing the neuro did NOT do which I wish she had was ask about her nutrition, how she ate, what she was doing to keep her mind and body strong. She told mom she needed to be eating more given her weight loss, but suggested ice cream. Yikes!!! I found a stevia sweetened protein shake with a bunch of veggies, all plant based, that I ordered for her. She is going to add it to her daily smoothies (spinach, blueberries, Amla, and other fruits, veggies, avocados). She is sticking pretty well with the suggested Bredesen-type diet and has gone sugar-free, gluten-free, plant based primarily with pastured chicken & eggs (they eat eggs on Saturday --- very set in their ways re diet, which makes it easier), a tiny bit of grass-fed hamburger (once a week, their "treat").

I am very lucky to have a wonderful father who is still living --- he is doing the diet with mom even though he doesn't have any physical or cognitive issues aside from a bit of high blood pressure. He is working to get off the blood pressure meds, irritates him that he can't be totally drug-free at 87 :-)

Good luck with your mom. Knowing that we can have a positive impact, can stem the tide or even reverse it is a very positive thing. I keep that in mind at all times.

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Melanie R.
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Re: Two generations at once...

Postby Melanie R. » Tue Aug 20, 2019 9:34 pm

Welcome to the forum Jmac! You have come to a good place. I admire how brave, and postiive you've been and appreciate how you are able to share so much of your journey so far with others.
As someone very focused on Nutrition in my own life, I can understand your shock regarding diet suggestions for your Mom. What a wonderful thing that you've equipped yourself to be able to support her in that area as well.
Thank you for your contributions.
Warm regards,
Melanie
Functional Medicine Certified Health Coach
Reversing Cognitive Decline for Coaches (ReCODE)


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