Help for my Mom 350 miles away

[Sherijordan]

I've been communicating with a local lady on here who suggested I post what I have told her about my mother. I am wanting to get her onto this program but am having a terrible problem finding doctors in the area where she lives. Indywoman suggested I post here, said I would most probably get a lot of suggestions. So here goes. Thank you so much in advance!

First let me tell you a bit about my mother. She's 80 years old. Last year August she traveled to my house and had knee replacement surgery with the same doctor who did mine in 2016. I took care of her until she was released for the car ride back to Manistee.

Before the surgery (which lasted roughly an hour) she was alert and fairly sharp. Maybe not what she was at 30, but in all she didn't forget much, just the occasional "senior moments'. She had bone on bone arthritis in her knees and A-fib, and a nodule on a vocal cord. But her mind was just about as sharp as mine. Well about a week after her very successful surgery I noticed she seemed to be a bit foggy. I wrote it off as a side effect of the Hydrocodone pain pills. I didn't realize how bad it was getting until a month had passed and she didn't remember going out to eat the day after we did so. I thought she was kidding and when I realized she wasn't I was freaked. My brother picked her up about a week later to take her home. She was so frantic to get home that all three of us thought that relieving that stress might do it. It didn't. MRI showed no evidence of a stroke. No urinary tract infection. A blood test finally showed a critically low sodium level. She was hospitalized and her sodium brought up. We expected her to come back after that. As the weeks went by and she did not improve I started scouring the internet. A friend of mine who is a nurse at Community North Hospital found and forwarded to me a link on something called Post Operative Cognitive Decline. I thought that since she made it through the surgery with no negative effects it couldn't have been that. But apparently that was a triggering event, and that a week after surgery is the median time when many seniors who have replacement surgery (hip, knee) start exhibiting the decline symptoms. Worse it can take a year or more for them to come out of this, and no guarantee that they ever will.

On to the neurologist and the neuropsychological tests. The usual dementia drugs haven't helped. Sleep study shows no sleep apnea. I've thought for decades she had that, but they say no. And the neuro tests show she is on the cusp between MCI and dementia. Which of course now that we know that there is still nothing more they can do other than trying another drug that doesn't work. I actually asked her neurologist about the type of testing and dietary and supplements that ReCODE looks at and he said he did not do that type of work. He referred us to a clinic in Grand Rapids (her neurologist is the only one in town) that I have set up an appointment with in early July. But they won't talk to me either. Just said we'll discuss all that at the appointment. The place is called the Born Clinic.

Mom's symptoms: She is very foggy, has a lot of trouble concentrating. Can't remember how to cook, doesn't know how to plan meals. Can't plan grocery shopping, doesn't know what to buy. She can't keep track of stories in books or tv shows so she doesn't read anything more complicated than the local paper, and the church bulletin. These she reads cover to cover. She is very aware that there is a problem and she is frightened. She keeps telling me she's old and on the way out. We keep telling her about her sodium and her surgery. She remembers both but forgets their connection to her current problems. She is also embarrassed by her symptoms and so she has stopped talking to her friends on the phone, and does not return calls when they call her. I have actually called them and explained what was happening, so they would understand and not give up on her.

My youngest brother Doug lives in town and takes care of her, and our middle brother who is schizophrenic, who lives with her. Doug is taking care of both residences, groceries and meals, maintenance, and bill paying for the three of them. He is also still working full time. I've been running up there for special appointments and to take over when he has had scheduled overtime work and needed help. Manistee is 350 miles straight north. Mom spends as much time sleeping as my cats do, saving her energy for when Doug is there, so she can do what she can to help him. She knows she needs to be exercising but does very little along those lines. She does have a recumbent indoor bike that she will sometimes get on and use, and she will walk when one of my brothers will take her out to places. She's always ready to do that. I think she wants to get better but doesn't know what to do. When I'm there she stays awake, is engaged, and we do go out and do things, even if it's just a ride or a walk in the cemetary. She hates to see me leave, every time.

I've gotten her onto a 2000 IU Vitamin D supplement just because it has helped me enormously with depression through the years, and her neuropsychological testing said she showed signs of depression. But that's it right now in terms of any kind of real treatment. Sooooo.... thoughts, anyone? I feel like I have to get this right, because if I have to take her to an appointment that is a multihour drive away from home I'll get one chance. And even then once the testing is done and we find out what she needs to do there is no guarantee that she won't decide she would prefer to just stay in her chair in the living room sleeping until she regresses to the point where my brother can no longer care for her and she needs to go to a nursing home, rather than turn her life upside down with the dietary changes and exercise. At eighty years old this is certainly her decision to make. But I want to do everything I can to get her to try this before I accept her going off quietly into the sunset.

Thanks.

Sheri Jordan

[MicheleCC]

At eighty years old this is certainly her decision to make. But I want to do everything I can to get her to try this before I accept her going off quietly into the sunset. Thanks.
Sheri Jordan

Hi Sheri,
Thank you for sharing your story. Your mom is lucky to have you and your brother who are willing and able to help take care of her. If she were my mom, these are some questions I would ask...why was her sodium was so low? What does she do to prevent it from happening again? Does she have other health conditions that she’s being treated for? Is she taking any medications? Is there an assisted living facility that focuses on cognitive care that she might benefit from? Of the various aspects of the ReCODE program, what do you think your mom would be most willing or able to follow through with and what would she need to support her in doing so?

That said, if I were in your shoes, I would also research UNDA drainage and seek out a functional medicine, naturopathic or integrative gerontologist who is familiar with this therapy. There is a lot of help available online right now from all types of health providers. It may be helpful for you or your brother to consult a health coach who is familiar with the ReCODE program to explore what actions you can take while waiting to see the neurologist. Here is a list of apoe4 aware health coaches should you consider going that route.

Whatever course of action you take, nothing is more valuable than your time and love.

Warm regards,
MicheleCC

[slacker]

I
I actually asked her neurologist about the type of testing and dietary and supplements that ReCODE looks at and he said he did not do that type of work. He referred us to a clinic in Grand Rapids (her neurologist is the only one in town) that I have set up an appointment with in early July. But they won't talk to me either. Just said we'll discuss all that at the appointment. The place is called the Born Clinic.

Hi Sheri;

If I understand correctly, you are looking for a practitioner who works with ReCode, Dr Dale Bredesen's protocol. If this is not the case, please ignore the rest of my post!

A quick scan of the Born Clinic didn't show any mention of training in the Bredesen Protocol, or interest in reversing cognitive decline. If you are looking for a ReCode approach, I would be concerned if no one there has taken the Institute of Functional Medicine's Reversing Cognitive Decline course or has experience with implementing it. The staff should at least be able to answer this question over the phone. Just my opinion.

[Sherijordan]

Slacker and MichelleCC,

thank you for your responses! The sodium issue, they think, was caused by a combination of the compression stocking and the time she had to spend with her leg elevated above her heart during the recovery from the knee surgery, and the water pill she was on for her previous problem of her ankles accumulating fluid. They took her off the water pill (diurectic) immediately. Since then she has continued to get blood tests once or twice a month to be certain she is keeping her blood sodium levels up.

I looked at UNDA after you suggested it and it sounds promising. I'd like to look into that when I can get up to Michigan to work with her. My brother has his hands full though, unfortunately, and it sounds like something that would need to be administered and followed by a practitioner. My brother has asked me for a couple sentence summary of ReCODE because he doesn't have time to listen to, or read, any more than that. I don't really blame him, his life is not his own as it is. That leaves it to me, and Manistee is such a desert when it comes to medical care. Well, actually, when it comes to most things.

Slacker, I have the same concerns about the Born Clinic. I will be calling them again and trying to see if they will allow a doctor to call me back. I'm hoping since I have an appointment scheduled, and with the Covid19 restrictions on travel, that they might be willing to be more flexible on their rules. If they won't then I will probably cancel the appointment before this is over. It's too bad, because they actually work with my mom's insurance.

I'm going through all of the additional resources I have since I discovered this site, and pulling together a list of foods that Mom should have in her diet, as well as things she should avoid, that Doug might be able to work into her meals. He asked me for that. Can't do the standard elimate glutin and sugar stuff right now, although we can try to limit her exposure by adding other things in their place, IF I can give him some specific ideas. That's my task right now, as well as preparing to leave my home for a period of at least six months, and finding a place I can rent up there (my two cats have to come with me, and they're not welcome at anyone else's home).

Thanks!!

Sheri Jordan

[laurie]

.

Mom's symptoms: She is very foggy, has a lot of trouble concentrating. Can't remember how to cook, doesn't know how to plan meals. Can't plan grocery shopping, doesn't know what to buy. She can't keep track of stories in books or tv shows so she doesn't read anything more complicated than the local paper, and the church bulletin. These she reads cover to cover. She is very aware that there is a problem and she is frightened. She keeps telling me she's old and on the way out. We keep telling her about her sodium and her surgery. She remembers both but forgets their connection to her current problems. She is also embarrassed by her symptoms and so she has stopped talking to her friends on the phone, and does not return calls when they call her. I have actually called them and explained what was happening, so they would understand and not give up on her.

Sheri Jordan

Hi Sheri I am so sorry to hear about your mother. My heart goes out to you and your family. It is possible your mother's blood brain barrier was compromised during surgery. Here is a link to a paper about this https://www.frontiersin.org/articles/10 ... 00752/full. If this is the case her cognitive issues maybe a result of aluminum getting into her brain. Aluminum can cause the cognitive problems your mother is experiencing. The good news is drinking silica rich mineral water (Fiji water is an example) is effective at removing aluminum from the brain. This would be something very simple to try.

Aluminum is a causal factor of Alzheimer's. My mother in law who has Alzheimer's and my husband who is a scientist has been researching and writing about aluminum and other neurotoxins for the past several years. He has helped his mother, the progression of the disease has stopped and her cognition has improved. She is drinking silica water and taking some supplements. My mother in law couldn't cook/ plan just like your Mom and she also had the same short term memory problems.

Here is a link to a write up written by my husband on Aluminum and Alzheimer's and silica water. https://prevent-alzheimers-autism-strok ... imers.html Here is a link to a write up I did on my mother in laws journey. https://aluminum-alzheimers-autism.blog ... er-in.html

In terms of the planning issues your Mom is having, aluminum is also a causal factor of ADHD (executive functioning such as planning is part of this diagnosis) Silica water has been found to help with ADHD. http://prevent-alzheimers-autism-stroke ... rch?q=adhd

You are a very determined person you will find a way to help our mother. Keep reading, keep asking questions, keep searching. Let me know if I can be of any further help. Regards, Laurie

[MicheleCC]

Slacker and MichelleCC,
I'm going through all of the additional resources I have since I discovered this site, and pulling together a list of foods that Mom should have in her diet, as well as things she should avoid, that Doug might be able to work into her meals. He asked me for that. Can't do the standard elimate glutin and sugar stuff right now, although we can try to limit her exposure by adding other things in their place, IF I can give him some specific ideas. Thanks!! Sheri Jordan

I've heard many stories of people who have successfully recovered cognitive functioning and what I've noticed is exercise, hydration and mental activities or exercises were key components of any program. Setting up waters for the day to make sure she's getting adequate hydration, setting an alarm for a specific time every day when she can do whatever exercise is most doable for her, AND setting her up with a sudoku book, cross-word puzzles, or brain game websites (I like http://www.lumosity.com) may be good for starters.