Welcome!!!

A primer for newbies and old pros alike.
DebS
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Re: Welcome!!!

Postby DebS » Wed Aug 07, 2019 7:02 pm

heidilien wrote:Julie, I have heard about you through Dr. Bredesen's work and am very hopeful to be one of the successful survivors of ApoE 4. Both my mom and grandma suffered from Alzheimer's and I hope to break that cycle. I am so passionate about what is possible. Thank you so much for this group.


Hi heidilien! I'm glad you have found the site. I too have had experience with family suffering from Alzheimer's and am grateful for all of the information I've found here. Our primer, written by Dr. Stavia is another great place to start. It offers prioritized preventative steps you can take. There is quite a bit of information here and many possible ways you can take that reduce risk. Please give yourself time to make changes and remember that any steps you take are positive. You don't have to do it all at once.

Please feel free to reach out with any questions that come up. I look forward to your future posts.
Deb
Functional Medicine Certified Health Coach
National Board Certified Health and Wellness Coach
Certified Reversing Cognitive Decline

thewife
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Re: Welcome!!!

Postby thewife » Wed Aug 14, 2019 3:58 am

Hi. I found this group from Dr. Bredesen's book. Originally I was reading/exploring for myself as a preventative measure largely due to the last number of years of my mom's life. However, more priority of the moment is my husband. His mom and grandmother had/has Alzheimer's but he has been diagnosed over his lifetime with Cerebral Palsy. He has another diagnosis recently of Cerebellar Atrophy which might be putting the first diagnosis in question despite the longevity. His currently rapidly increasing symptoms seem to match neither. I have tried for years to find a doc that would work towards helping him maintain his health as long as possible to no avail. He/we have done a fair amount...improved weight, blood sugar, cholesterol, eating choices, etc. but things are getting worse and docs give us options like spinal taps/steroids/etc. with little chance that these will help. There is no recommendation of other strategies (as a matter of fact the specialist we saw wanted to take him off of all vitamins/supplements) and really a general belief that there is nothing to do to help. So long story, short, we have not tested for Apo4 (resources are tight - we took care of my mom's dementia/illness for 5 years and are dealing with the financial consequences of that) and Alzheimer's is not the issue (of the moment, anyway)...is this forum appropriate? At the moment we are looking for a provider that might be helpful, ideas for coping, ideas for thriving as long as possible, etc. Thanks much.

DebS
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Re: Welcome!!!

Postby DebS » Wed Aug 14, 2019 6:47 am

thewife wrote:Hi. I found this group from Dr. Bredesen's book. Originally I was reading/exploring for myself as a preventative measure largely due to the last number of years of my mom's life. However, more priority of the moment is my husband. His mom and grandmother had/has Alzheimer's but he has been diagnosed over his lifetime with Cerebral Palsy. He has another diagnosis recently of Cerebellar Atrophy which might be putting the first diagnosis in question despite the longevity. His currently rapidly increasing symptoms seem to match neither. I have tried for years to find a doc that would work towards helping him maintain his health as long as possible to no avail. He/we have done a fair amount...improved weight, blood sugar, cholesterol, eating choices, etc. but things are getting worse and docs give us options like spinal taps/steroids/etc. with little chance that these will help. There is no recommendation of other strategies (as a matter of fact the specialist we saw wanted to take him off of all vitamins/supplements) and really a general belief that there is nothing to do to help. So long story, short, we have not tested for Apo4 (resources are tight - we took care of my mom's dementia/illness for 5 years and are dealing with the financial consequences of that) and Alzheimer's is not the issue (of the moment, anyway)...is this forum appropriate? At the moment we are looking for a provider that might be helpful, ideas for coping, ideas for thriving as long as possible, etc. Thanks much.


Welcome thewife! I am sorry to hear about the increase in symptoms your husband is experiencing. Yes, I do think that the site can be helpful both in preventative measures for you and certainly in ideas for coping and thriving. It is not necessary that you test to be part of the community. This site is a wonderful resource for information and support.

In my quick search, I found that Cerebellar Atrophy is the degeneration of the neurons. While not a professional opinion, I would imagine there would be some overlap in the applicability of the nutritional and supplemental support presented in the Bredesen Protocol. Our Searching for a Healthcare Practitioner section of the Wiki will help you approach and execute a practitioner search. In terms of cognitive decline, our primer, written by Dr. Stavia, has a prioritized list of preventative strategies and more information.

Please feel free to ask any questions you have. 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

NF52
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Re: Welcome!!!

Postby NF52 » Wed Aug 14, 2019 11:06 am

thewife wrote:...priority of the moment is my husband. His mom and grandmother had/has Alzheimer's but he has been diagnosed over his lifetime with Cerebral Palsy. He has another diagnosis recently of Cerebellar Atrophy which might be putting the first diagnosis in question despite the longevity. His currently rapidly increasing symptoms seem to match neither.... things are getting worse and docs give us options like spinal taps/steroids/etc. with little chance that these will help. There is no recommendation of other strategies (as a matter of fact the specialist we saw wanted to take him off of all vitamins/supplements) and really a general belief that there is nothing to do to help....resources are tight... At the moment we are looking for a provider that might be helpful, ideas for coping, ideas for thriving as long as possible, etc. Thanks much.
A long hug from another wife, who knows what it means to suddenly have the new "priority of the moment" be your husband

I am no expert in Cerebellar Atrophy, but spent my educational career meeting and cherishing the courage, resourcefulness and often sly humor of kids with CP (and kids with other unique differences.) So I know that CP is something of a catch-all term. Decades ago it was assumed to be caused by loss of oxygen during a difficult delivery. Later it was discovered that some kids with CP showed signs of perinatal clots or bleeding (which seems to happen in about 1-2% of births, somewhat more with preemies). More recently, with genome-wide testing, it seems that some cases of CP may be linked to mutations in DNA that either happen spontaneously or that are carried in some families. (Sort of how lots of people on this site knew they had Alzheimer's and heart disease in their families and only with 23&me discovered they had a genetic contributor to that pattern!)

So this is a bit of a wild guess, but I wonder if the neurologist thinks the effects have been the same as CP caused by birth injuries, but might have a genetic link which is now showing up with cerebellar atrophy.

More importantly: You and your husband have had years of experience learning how to adapt to his "CP". That will help you emotionally and physically deal with this new diagnosis. One way to frame this is that your husband's issues may involve new, and sometimes challenging motor symptoms while sparing the things that make him who he really is--his language, his memory of himself, his interests, his love for his family. Doesn't mean you wouldn't take a pass on this journey if you could! We are all in the waiting room of a "progressive" diagnosis of one sort or another. The Stoics say we cannot choose the outcome of our journey; we can only choose to prepare to the best of our ability and to seek meaning in the voyage.

So here are some more thoughts on "ideas for coping, ideas for thriving as long as possible":

1. Take a deep breath, lots of them!
2. Recognize that you and he are the same people you were before that diagnosis. You have time to each, in your own way, consider this news, grieve for the changes it is requiring now and might in the future, and remind yourselves of your well-honed coping skills, knowing that adjustments in life and advocacy for your needs makes a difference.
3. Start with small changes that will make life easier and don't cost much. Maybe you can agree that someone else can do some chores around the house and that day trips to see nature's beauty are as worthwhile as long drives.
4. Ask yourselves: What is important to me? What experiences do I want and what goals do I have? Dr. Atul Gawande's recent book "Being Mortal" is a wonderful guide to this.
5. Cerebellar atrophy is not nearly as common as Alzheimer's, although it is a feature of some cases of Alzheimer's and some of Parkinson's Disease and Progressive Supranuclear Palsy (PSP). The PSP Association PSP may be a helpful resource, as they also address Multiple System Atrophy, sometimes used as an umbrella term including Cerebellar Atrophy. The Parkinson's Foundation Parkinson's Foundation may also be helpful and has resource for financial and legal planning.
5.Advocate with your doctor for supportive therapies such as PT, which insurance should cover. If you need assistance, contact a representative for the Affordable Care Act and/or Medicaid. Your local UCP (United Cerebral Palsy) may have great support groups for adults, and access to pools for water-therapy, including hoyer lifts, if needed.
6. Tell your friends and family what specific things they can do to help. People want to be helpful; they just need to know "I need a coffee break once a week" or "We need a neighbor with a snowblower to help us out this winter."

We may not be a perfect fit for you, but we are definitely here for you, my friend.
4/4 and still an optimist!

thewife
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Re: Welcome!!!

Postby thewife » Thu Aug 15, 2019 2:44 am

Thank you for your welcoming, quick and elaborate response. Some great suggestions...I have poked around some of these things but you gave me a few more. I actually used to work in the DD world (prior to meeting my husband) so this gave me some starting points. I currently work in the mental health world and know that both of these worlds (and it seems others) can be very locked in their ways. I am glad to be "on the fringes" of this group who are diverse in their explorations of what can work or not work. We are having having some challenges with the traditional docs portraying a pretty dismal picture. I believe that everything you suggested counteracts that attitude and, I believe that there are other things that can improve our situation. Explore I will and I wish you peace and love in your journey.

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floramaria
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Re: Welcome!!!

Postby floramaria » Thu Aug 15, 2019 11:31 am

thewife wrote:We are having having some challenges with the traditional docs portraying a pretty dismal picture. I believe that everything you suggested counteracts that attitude and, I believe that there are other things that can improve our situation. Explore I will and I wish you peace and love in your journey.

As for the dismal picture, one of my favorite neuroscientist/authors, Norman Doidge, has said that doctors are very concerned about giving “false hope” but not worried about giving false despair.
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IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)

thewife
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Re: Welcome!!!

Postby thewife » Fri Aug 16, 2019 2:35 am

My husband loved that quote...it is so much what we are experiencing right now. Thank you.

bouquetmalaise
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Re: Welcome!!!

Postby bouquetmalaise » Fri Sep 13, 2019 10:22 am

This is amazing! I'm Karen, a 58 yr old female who has 1 APOE4. Tested via 23 and Me also, so will need to figure the rest out. Anyway, THANKS so much to ALL of you who work on this site! I've been keto for 1 week. I've had Dr. Bredesen's book for a while, so I knew about APOE4. I don't know why it took me so long to really try a keto diet but in one week I seem to feel so much better. I've been a vegetarian (some fish) basically since I was 11. So in a way I think I've made things worse with too many carbs in the past. Symptoms - headaches, migraines, ADHD, fatigue, neuropathy, and forgetfulness. Some days I felt 20+ years older, if couldn't work from home I couldn't have kept my job. My husband (of 15 years) is a family doctor. So you know this is all so complicated. I can't wait to see how I'll feel in a month or a year, I think I've felt bad since I was 11 in one way or another. Also suffered a concussion at 11. Unfortunately, my mother suffered from a long slow dementia/Alzheimers over 10-15 yrs. But she lived until mid 80s. I believe I inherited it from her. I'll keep learning and work on my siblings. Anyway, again thank you so much, I will definitely donate.

NF52
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Re: Welcome!!!

Postby NF52 » Fri Sep 13, 2019 6:24 pm

bouquetmalaise wrote:This is amazing! I'm Karen, a 58 yr old female who has 1 APOE4....I don't know why it took me so long to really try a keto diet but in one week I seem to feel so much better. I've been a vegetarian (some fish) basically since I was 11. So in a way I think I've made things worse with too many carbs in the past. Symptoms - headaches, migraines, ADHD, fatigue, neuropathy, and forgetfulness. Some days I felt 20+ years older, if couldn't work from home I couldn't have kept my job....
Welcome, Karen!
We're so glad you joined our community of people who have decided that it's always a good day to start new habits. Most of us are like you: raised on lots of carbs (or processed foods that passed as carbs--a specialty in my house was something called "tuna cheesettes" made of hamburger buns, fake mayo, Velveeta cheese and tuna!) So the fact that you are already feeling better a week into a big change is wonderful! And your brain is still very able to use all that healthy energy.

As for that concussion at 11; don't worry about that. I've participated in several panels with scientists on the research into links between traumatic brain injuries and Alzheimer's or other dementias. It is still seen as highly individual and may be much more likely for those who have sadly suffered blast injuries or had prolonged periods of unconsciousness, or have co-morbid conditions that in themselves would make worse cognition more likely. I too had a concussion--at age 42, and I am still going strong at 67 with two copies of ApoE 4!

I think you'll enjoy browsing through the Primer, written by a doctor who, like you, is also about 58 and is also ApoE 4/4. She has great suggestions for the "low-hanging fruit" that will add to the improvements you feel, and also is helpful in explaining what is settled science and what is still open for varying views and actions on our parts.

And for tips on how to quote someone so they see your posts, how to search for topics and other handy forum tools, check our our Wiki section on "How-To" Get the most out of the ApoE4.info website. The Wiki itself, which can be found at the top of every page, has lots of suggestions and tips on ketosis and recipes.

I hope you continue to explore and share what works for you; we all learn best from each other in this forum of like-minded seekers of better health.
4/4 and still an optimist!

firinne
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Re: Welcome!!!

Postby firinne » Thu Nov 21, 2019 9:05 pm

Hello. I'm 48 yo female with E4/E3. Found this forum through promethease. I'm not much of a talker :) . I'm very interested in strategies for reducing high/elevated blood pressure and in supplements. Glad to find this forum, and amazed by the amount of information here.


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