I am not a doctor. I am providing information based on experiences that my mom has with natural remedies. The purpose of this blog is to help folks to educate themselves. Use this information with your own discernment.

13 November 2009

Mom's Daily Routine with Lewy

I've learned a great deal over the last few months about Lewy Bodies Dementia, it is peculiar.  It appears on the surface to be Alzheimers, but what makes it different is that it comes with hallucinations about people, moving walls, extra animals and wild animals. 

Early on, the person who is destined for LBD is diagnosed with Parkinsonism, it goes with the illness.  The shakes, the tremors and the stiffness.

Sleep walking too, narcolepsy symptoms, these are all part of Lewy Bodies Dementia. 

It's pretty scary for the care giver.  When you are first confronted with it you are left wondering what the hell you are supposed to do.  But somehow, we always seem to know what to do. 

I am grateful that I trust in my Godself, my Higher Self, my Golden Angel inside, to guide me through whatever it is I'm going through.  She helps a lot.

From what I've learned, Lewy Bodies is the most misdiagnosed form of dementia, it's usually diagnosed as Alzheimers.  The misdiagnosed patients are given pyschotic drugs and they get worse.  They do not react well to the same meds as those folks who have Alzheimers.  With Alzheimers you can live a long time and just not remember.  You don't have hallucinations or poor vision.

How do you know if it's Lewy Bodies Dementia or Alzheimers? 

A symptom of LBD is hallucinations about the environment (for example, my mom sees moving walls, dark floors that are a big hole that she's affraid that she'll fall into) or people like "the man" or wild animals. 

From what I understand about the disease, Lewy bodies are protein tangles that break off and form a mass around them.  I read somewhere that the mass that forms around the protein tangle is the bodies mechanism to try and protect the body from the intruder.  It eventually eats up the brain.  My mom takes Choline to replace what the Lewy's are eating.  I think this is why she appears to be improving.

It affects brain tissue and the person declines fast. 

They will have trouble with their vision (my mom sees double these days) and often the patient will keep their eyes closed.  They just can't seem to open them.  My mom has times like this when she sits with her eyes shut.  She's been using NAC drops in her eyes.  It's only been a short time so the verdict is still out on whether they work or not. 

She's got cataracts.  We hate to run the risk of her LBD getting worse if she goes through a procedure to have the cataract removed.  I'm really hoping the drops work.

However, since she started to take Choline in the morning she appears to be improving.

Every morning we have the same routine.

One of us wakes first, sometimes it's me, sometimes it's my mom.

She takes her supplements:  coq10, Ashwagandha - 8 drops in a shot glass of water, Magnesium, Calcium, Vitamin D3, Cognifactor, Fish Oil, Cardio HNT, 10 mg Lisinopril

Check blood sugar and blood pressure, record the results.

For breakfast I always give her some sort of protein like yogurt, an egg, a little cottage cheese along with her fruit and her Choline drink, which she absolutely loves. 

She sometimes has a celery stick with fresh ground organic peanut butter.  Celery helps with constipation trouble that is so prevalent with LBD patients.  It seems to take about 4 hours for the celery to do it's job.  Absolutely amazing!

The Naturopath prescribed a serving of berries every day, so I make her drink of Choline with frozen blueberries. 

My days are spent asking her if she had used the toilet or how she is feeling. 

Sometimes she has stomach cramps.  Pain seems to bring out the Lewy Bodies Dementia symptoms.  Constipation brings them out too.

Lunch and dinner she gets 6 capsules of Seacure, 12 a day.  It's helping to feed her brain.

We usually get out and walk around or I get her on the treadmill.  On really good days, I get her on the Wii Fit Balance game. 

Bed time she has one Cardio HNT and one 10 mg Lisinopril, along with a shot of Ashwagandha and a 3mg of Melatonin.

So far so good. 

As long as she stays away from wheat, rye barley, oats, rice, eggplant and all baked goods with baking soda or powder, life is pretty darn awesome for her.

Things appear stable.
I'm treading in unknown territory.  Every single day.  I have no fucking idea if I'm doing it right or not, I find myself just letting it all go and just doing what feels right.  It's working.

In a way I'm happy that I have no idea what's ahead for us.  Maybe if I knew I'd be worried about it and wouldn't keep looking for different solutions, ones that come without side effects.  Those side effects are horrible. 

Care giving is hard, very hard.  However, I wouldn't have it any other way.  I don't care if people think I'm nuts to keep my mom home.  I do know that LBD is a different mental illness and those who get to stay home in familiar surroundings do better than those who go to a nursing home. 

Our routine may change because as the disease progresses her needs will change, maybe not.  I don't know.  I haven't found anyone else doing what I'm doing with my mom so I have nothing to compare it to.  It's the main reason I write this blog.  For the purpose of documenting so that someone else may give it a try and have success.  Who knows, this could be a new solution to a very nasty problem?

I'm hopeful that what I'm learning will help the rest of my family for generations to come, to avoid Lewy Bodies Dementia.  I've been reading that it's brought on by poor nutrition and or blows to the head.  All the boxed and proccess shit on the supermarket shelves, all the wheat... all of it is poison to our systems. 

Lots of boxers get LBD too.  Which tells you that fighting is totally stupid.

Yes, my mom is dying and I'm OK with it. 

From what I've been reading on support groups and in others blog posts about their caregiving experiences, my mom won't get better. 

I am refusing to believe it.

The natural remedies they appear to be improving.  I'm holding out hope, why not?

My only desire for my mom, the vision I hold, is that she has as many good days as possible, leaving the not so good days few and far between.

I believe that the natural remedies and organic diet are keys to her success  to living with the debilatating disease, Lewy Bodies Dementia.

Every day I learn something new about myself through my mom.  She's a blessing in so many ways.  I'm grateful to have this time with her and the ability to document our journey.


  1. I'm glad to hear the natural remedies seem to be slowing the progression. I've heard about the fish oil and Vitamin D, but that was just recently and his diagnosis was 3+ years ago.

    We have a meeting about hospice care tomorrow, so it looks like we may be reaching a new phase. I don't think we could easily start it now.

    Enjoy the good days, and kudos for being there for your mom. As I'm seeing lately, apparently not everyone would.

  2. I'm sorry to hear about the hospice care phase for your mom and you.

    I don't know if you could start now with what I found works for my mom and LBD.

    My hope is that someday someone reads my blog early enough in the diagnosis of LBD and find that the natural remedies work superb with out side effects.

    We're walking down a new path, my mom loves being a trail blazer. I often say to her, come one Ma, you could hold the answer to the cure, you have to keep living... you are doing great.

    I will use the power of the mind as much as I can to help my mom slow the progression or better yet, stop it!

    Thank you for reading my blog and my heart is with you.

  3. I'm replying to an old post but decided I just had to! You are the first person I've seen that has mentioned that their loved one with LBD sees/saw moving walls. This has been a recurring hallucination that my Dad has had since his dementia diagnosis (originally AD but recently changed to LBD). He thinks the walls are falling down or the doors are falling down. He actually tries to physically hold them up and calls for help to do it! He once even complained to me that "those people" (hallucinations) weren't very helpful in helping him hold the walls up. Thanks for your blog. It's very helpful!

  4. 5steamboats.... Thank you for your comment.

    The hallucinations can be troublesome. What worked for my mother was "calling dream master.". I learned it from another caregiver blogger. I don't remember who it was but her Dream Master solution helped give my mom peace from her hallucinations.

    I wrote posts about dream master and how I used to call him on a special phone in her room. It always worked.

    It's a tough road but one that was very rewarding on so many levels.

    Best wishes for strength and patience.