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my own clinical trial of 1: aromatherapy
galfromiowa
Posted: Tuesday, December 10, 2013 3:42 PM
Joined: 11/23/2013
Posts: 309


 I've been reading the pros and cons of the effectiveness of aromatherapy for AD. Admittedly, the majority of it was over my head but I persevered and read everything Lain and Jab had to say. I even braved a trip to the big city and found essential oils in Des Moines.  I'm not sure if this will work, but my dh has been labeled a "non-responder"for meds, he has gone from a CEO of a company in Dec 2011, to stage 6 visual varient early onset. I don't  see the down side of trying something/anything. 

 

So here's my plan. Essential oils of rosemary and lemon, 2 sniffs each nostril 3 times a day with a night time sniffs of lavender and orange. I did my own pre test with dh counting from 1 to 10 forward. (He got a 100%) then counted backward from 10 to 1 (He got 80%) After showing him how to hold the pencil, he was able to draw a circle. After showing him how to hold the pencil (again), he was unable to sign his name. I will retest in a month or so. As a side note, he was unable to distinguish between the smells of the oils. 

Thoughts? Ideas?


Myriam
Posted: Tuesday, December 10, 2013 5:30 PM
Joined: 12/6/2011
Posts: 3326


Wow. I'm impressed with your study and am looking forward to hearing about the outcomes. I've been using aroma therapy (the scents Lane has identified) for the last couple of years and believe it has been a factor in keeping me in the early stages (I was diagnosed about 4 years ago). I sniff the aromas right out of the bottles, too, but only do it in the morning and the evening. But I also follow best practices:

 

Eating a Mediterranean diet (e.g. cooking with olive oil and lots of veggies)

Staying socially active

Vigorous exercise

Taking meds as directed


Vita99
Posted: Wednesday, December 11, 2013 5:30 AM
Joined: 9/4/2012
Posts: 469


I too use aromatherapy and look forward to your results.
Lane Simonian
Posted: Wednesday, December 11, 2013 9:59 AM
Joined: 12/12/2011
Posts: 4986


I admire everyone of you and not just because you are trying aromatherapy. I admire you in part because you never give up against this disease either for yourself or for your loved one.  And you are attacking the disease from multiple angles. 


 

I keep gathering information because I have seen too many good reports about aromatherapy to ever believe that it is new age hokum.  My mother never recovered her ability to sign her name but she did start counting numbers again--up to 30.  One day she counted in multiples of 2 and I jokingly accused her of showing off. 


 

I remember one night when she was having troubles following asleep and I asked her why.  She said she was having troubles remember her name. I told her her name and she went right to sleep.  But she almost never forgot her name in the latter years of the disease.  One day she started with a capital C.  She became very proficient at reciting the alphabet. 


 

She often would tell me this was not her home and when we visited her brother that he was an impostor.  She asked why her parents were being left out in the cold.  After the aromatherapy, she recognized her home again. Once we were not even to the driveway and she said we were almost home. She felt very comfortable around her brother again.  She would sometimes ask for her parents but never again why they were being left out in the cold. 


 

I would definitely combine aromatherapy with other treatments and other Best Practices.  There are no major miracles but potentially many minor ones which for me at least seemed like major miracles. 


 

Best wishes to each of you. 


galfromiowa
Posted: Wednesday, December 11, 2013 8:54 PM
Joined: 11/23/2013
Posts: 309


I'm modifying my Clinical trial to include a gluten free diet. Hubs blood tests came back positive for gluten sensitivity and after reading the connections between alz and celiac, I'm adding this to the treatment plan. I know I'm prob getting my hopes up, but there really isn't any other place to go, but up.
a.mon.mor
Posted: Sunday, December 21, 2014 10:07 PM
Joined: 11/19/2014
Posts: 10


Hello! My father is interesting in learning more about aromatherapy. He's in the early stages and I can hear him trailing off in thought when we're on the phone. I guess I noticed it almost a year ago but really just thought he was distracted. So my question is, how does this work? You purchase essential oils and the person smells it? For how long? How many times? What oils? I don't want to seem like I'm asking for the magic cure but more information on what others have done and what kind of results there have been.  Thank you ssoooooo much for any insight.
Lane Simonian
Posted: Sunday, December 21, 2014 11:08 PM
Joined: 12/12/2011
Posts: 4986


Some of the best essential oils for cognition are clove, bay laurel, rosemary, holy basil, and nutmeg.  If agitation becomes a problem, orange, lavender, rose, bergamot, and lemon balm may help.  You can have your loved one smell two or three essential oils at a time for a few seconds under each nostril once or twice a day.  Let us know your experiences.  Best wishes.
Jimmyvihufuva
Posted: Monday, May 18, 2015 4:44 AM
Joined: 5/18/2015
Posts: 2


Thank you for sharing this. At this point im willing to try just about anything to help my dear wife.
This seems very easy to do and i thank you for sharing this.


scma_2007
Posted: Monday, May 18, 2015 2:32 PM
Joined: 9/13/2013
Posts: 112


@ jimmyvihufuva

Also, try searching the SEARCH box using 'All Forums' and 'Matching any words' these two search criteria:

- best practice

- what work

These will produce POSTS that are from different Forums that shows other possible alternative supplements or therapies that might help.

And do check out this one list that is on this CT forum

Why when you stop things get worse
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147513560

My mom is Stage 5 moderate AD, but with Best Practices (life style changes and supplements) and therapies (aromatherapy, light therapy etc), she's in a much better place now. It defies the prognosis of continuous decline by what doctors and prevailing beliefs about AD have predicated for both EOAD and LOAD.

Baby steps are needed. It's worth trying one step at a time and you'll see what works and do not work. And of course, it would help to be careful and be aware of any drug interactions.

As some members here would say, 'there are no cures, but there are effective treatments'. So true. There will always be skeptics, BUT, bottom line - what is there to lose by trying? It does not cost a fortune for one. And some are free - like exercise, sleep, listening to music etc..





scma_2007
Posted: Monday, May 18, 2015 3:01 PM
Joined: 9/13/2013
Posts: 112


And of course, my mom is on Exelon medication. We cover all grounds.

(Can't edit an existing post.)

Lane Simonian
Posted: Monday, May 18, 2015 3:35 PM
Joined: 12/12/2011
Posts: 4986


Welcome, Jimmyvihufuva. Scma has provided very good advice and direction. A variety of therapies (aromatherapy, art therapy, music therapy, light therapy, pet therapy, massage, etc.) combined with various herbs and spices (Panax ginseng, lemon balm, rosemary, ginger, Bacopa monnieri, to name a few) provide a likely effective treatment for Alzheimer's disease. Clinical trials and case studies indicate that Alzheimer's disease cannot only be stopped but partially reserved, so that life becomes better both for the person with Alzheimer's disease and their loved ones.

People are afraid to be proactive for several reasons: they have been told so many times that nothing can be done to treat the disease that they fall into despair or disbelief (if it really worked they reason everyone would be using it). If anything will treat the disease, they often believe it has to be a drug--plants they have been told cannot treat anything. They have been warned to do no harm (certainly check for side effects and adjust whenever necessary), but when it comes to Alzheimer's disease doing nothing is doing harm.

Please stay with us and let us know how all is going.

Lane Simonian
Posted: Monday, May 18, 2015 3:40 PM
Joined: 12/12/2011
Posts: 4986


Partially reversed rather than partially reserved. Like so many others, I can no longer edit on this site. Funny how I often partially reverse letters and in this case I reversed reversed into reserved.

Best wishes to you and your wife. We all keep searching for answers, and collectively we are getting closer.

Dd197
Posted: Thursday, May 21, 2015 5:58 AM
Joined: 9/11/2013
Posts: 1085


Galfromiowa, yes,keep up posted on the aromatherapy. My LO lost his sense of smell years before the Alz diagnosis. We began aromatherapy, rosemary and lemon, a year ago and he has regained some of his sense of smell. We follow all the best practices including a gluten free diet as he has celiac disease. Hubby still has his sense of humor, can still be helpful around the house, exercises, but due to his impaired visual perception, he can no longer drive (2 yrs now).
Question for Lane Simoniam, we have been using Doterra oils....a friend began using Young Living Oils as he feels these are purer. Any thoughts on this...

Lane Simonian
Posted: Thursday, May 21, 2015 11:01 AM
Joined: 12/12/2011
Posts: 4986


I wish that I had an informed opinion about this but I don't. Both are huge companies that have more than their share of critics--but most of the criticisms have little to do with the quality of their essential oils. In that regard there is probably very little difference between the quality of their oils--no independent testing is done on the purity of essential oils so unfortunately it is impossible to know for certain who has the most pure essential oils.

I am sorry to say that Galfromiowa lost her husband. The disease progressed very rapidly in his case. I follow as many people as I can who are using aromatherapy. I have seen everything from dramatic improvements to no improvements at all and am still trying to figure out why.

The same compound that destroys the sense of smell is also the same compound that destroys memory (peroxynitrites) and the olfactory bulb and hippocampus are the only two parts of the brain in which neurons can be regenerated. So a partial restoration of smell is a good sign.

I am glad that all things considered, your husband is doing all right. The combination of aromatherapy with Best Practices is a particularly good one.

onward
Posted: Thursday, May 21, 2015 7:14 PM
Joined: 12/20/2011
Posts: 217


Lane Simonian wrote:
... I am sorry to say that Galfromiowa lost her husband. The disease progressed very rapidly in his case...

I'm so sorry to hear of Galfromiowa's loss.

onward
Posted: Thursday, May 21, 2015 7:18 PM
Joined: 12/20/2011
Posts: 217


Lane Simonian wrote:
Partially reversed rather than partially reserved. Like so many others, I can no longer edit on this site. Funny how I often partially reverse letters and in this case I reversed reversed into reserved.


As you may know, one trick is to sign in, go to the post that needs editing, copy it, delete the original post, then post a corrected version as a new post. I actually did that once. (Yes, a big nuisance. And, unless you do it promptly, you may mess up the order of the posts in the thread.)

It saddens me that the style or format selected for this discussion forum has so many glitches, unlike any other forum format I've experienced. With most other forums - including the predecessor to this forum - it's so very, very simple to navigate, post, paste and edit.




Lane Simonian
Posted: Friday, May 22, 2015 7:30 PM
Joined: 12/12/2011
Posts: 4986


Thank you for this work around, Onward. I should have thought of it myself. Supposedly, the editing fix is on its way.

I am sad for the people that we have lost to dementia. The people we have "lost" due to the clumsiness of this new board pales in comparison, but it is still regrettable.

pirate57793
Posted: Thursday, May 28, 2015 11:24 PM
Joined: 5/28/2015
Posts: 6


Just new to the site tonight, but I am excited to try aromatherapy with my hubby... I have been just getting started with young living oils, so will have to order a few more things. I am so pleased that this site is available, and can't wait to see the improvement!
Dd197
Posted: Friday, May 29, 2015 5:57 AM
Joined: 9/11/2013
Posts: 1085


Welcome Pirate57793. Let us know how your loved one responds to the aromatherapy.
Lane Simonian
Posted: Friday, May 29, 2015 3:32 PM
Joined: 12/12/2011
Posts: 4986


Welcome, too, Pirate. I will be very interested in hearing about how your husband does, as well.

I remember about a month after starting aromatherapy with my mother she asked why I had moved something on her shelf and why I had been giving her this to smell every day for a month. Her sense of time and place improved significantly. Less so her clarity of thought. But gradually over the course of five years she become much more connected to the people and to the world around her.

The only thing that I would have done differently would have been to use herbs in conjunction with aromatherapy (such as panax ginseng, curcumin, Bacopa monnieri). If interested in this approach, scma has given some good input and places to look in a post above.

Del Rickel
Posted: Saturday, May 30, 2015 11:19 AM
Joined: 4/10/2014
Posts: 3


New to this site.

Is there a way to arrange the posts such that newer ones appear at the top, reverse chronological

I find several that I would like to comment on, but since they actually appeared years ago, have no idea if the poster is still around

Del Rickel
Posted: Saturday, May 30, 2015 11:33 AM
Joined: 4/10/2014
Posts: 3


Thanks to Lane Simonian reaching out with his research several places on the internet, I am looking into the potential of aromatherapy for my 62 yo spouse with a 2 year old diagnosis of EOAD

I have a located an online source for a number of the oils reputed to be high in eugenols, Edens Garden

I have played around with heating oils in the past with a candle diffuser

This is a more serious approach to these substances and I am curious about how others are doing this

Do you simply sniff from the bottle, candle diffuse in a shallow bowl, or the elaborate plug-in diffuser units

Thanks

Lane Simonian
Posted: Saturday, May 30, 2015 11:40 AM
Joined: 12/12/2011
Posts: 4986


Welcome, Del Rickel! I am glad that you have come here.

I don't think there is any way to rearrange the order of the posts or the response to them. If there is, hopefully someone will let you know how.

Unless someone says something, it is very difficult to know who is here and who has left. There are several posters on this particular forum who have contributed so much such as Myriam, Onward, Tom(ek), and Serenoa who don't post for awhile and then come back to post (it is possible that they have left for awhile or that they continue to read but don't post very often). I have not heard from Vita for awhile so she may or may not be still here. Myriam is very active as an advocate for more research and treatments for Alzheimer's disease, so she may not be back often or at all.

Part of the problem is tracking the response to aromatherapy or to other supplements, beyond the initial response.

Hopefully, this thread will serve as a place for follow up reports.

socwkr
Posted: Sunday, May 31, 2015 5:47 PM
Joined: 10/6/2012
Posts: 924


Hi, everyone. I used lavender with my husband for many years to soothe him and reduce any anxiety that he might be experiencing. I am very fortunate to live in an area with a lot of different stores, including Whole Foods supermarket, that sell essential oils at reasonable prices.

I had a small spray bottle that I filled up with water and then added the lavender essential oil. I gave it a good shake and used it throughout the day. I would spray a room, spray on him, spray on his pillow for sweet dreams. One day I found his aide using the spray under his arms. I found it to be very beneficial for him and I enjoyed it as well.

Best wishes, Debra.

eaglemom
Posted: Monday, June 1, 2015 8:41 AM
Joined: 3/7/2012
Posts: 2705


Welcome to the message boards Del Rickel. Unfortunately I do not know of a way to reverse the timeline of things posted. I will ask if that is even possible and get back with you.

As with everything some things work on some people and some do not. Which is just like medications. With the oils I've found I had to experiment until I found the "right" combinations for my DH. I tried to familiarize with reading several books, looking on line, asking Lane to understand what works well.

Let us know how your clinical trial goes forth. Very interesting for sure.

eagle

pirate57793
Posted: Monday, August 3, 2015 11:03 AM
Joined: 5/28/2015
Posts: 6


I have been using "lavender" and "peace and calming" in a almond oil base at night. I use a roll on applicator to both Bill n my wrist. He really likes the smell n I think it helps us get to sleep better. My biggest problem is his lucid dreams...He is on aricept n citalapram. Most nights around 3am, he starts twitching n swinging, kicking n calling out in his sleep. I have avoided getting hit until last night, when he got me good. I started crying, but I know I can't take it personally. I hate this disease n we are only 5 months in. I have started sleeping on a mat on my living room floor when he does this, which both of us hate, but I need my sleep. Any suggestions?
Lane Simonian
Posted: Monday, August 3, 2015 8:25 PM
Joined: 12/12/2011
Posts: 4986


Both Aricept (donepezil) and citalopram can increase lucid dreams (the evidence for both is based more on individual cases than extensive scientific studies, but that does not negate their validity).

https://www.psychologytoday.com/blog/dream-catcher/201112/psychopharmacology-rem-sleep-and-dreams

http://www.mumsnet.com/Talk/feeling_depressed/1413417-Citalopram-Anyone-else-fed-up-with-the-strange-vivid-dreams

https://answers.yahoo.com/question/index?qid=20080101073217AAIlfdv

Hopenow
Posted: Friday, December 25, 2015 10:37 PM
Joined: 12/17/2015
Posts: 32


Lane Simonian
Do you have an update for essention oils for cognition. 
Barbara

 

 


Lane Simonian
Posted: Sunday, December 27, 2015 9:12 PM
Joined: 12/12/2011
Posts: 4986


I keep looking for a follow up to the Jimbo study or new studies on aromatherapy to improve cognition in people with Alzheimer's disease, but have not found anything yet.  

http://onlinelibrary.wiley.com/doi/10.1111/j.1479-8301.2009.00299.x/full

I am trying to work on funding a clinical trial combining aromatherapy (clove, lemon balm, and bay laurel) with Korean red ginseng for Alzheimer's disease but the first place I tried required me to put money up a front.  I have another organization that might be able to do it for me.


OklahomaSue
Posted: Sunday, February 21, 2016 11:19 AM
Joined: 1/24/2016
Posts: 1


I am new to this board.  My mother lives with me and my husband.  We have went into another stage and I really don't know what stage we are in. She can do some things independently and other things we do for her.  My husband and I still work and we have a sitter that comes in when our schedules leave her alone.  So she has care 24 hours a day.  She can still go to the bathroom on her own and I have her do as much as she can on her own.  She wears depends and I have covered container for them to go in and she will bring that to me to put in the trash when she is reminded which now is about every day.  She was taking her own blood pressure and blood sugar but now she needs assistance with it but I still let her try. When she gets and infection of any kind her symptoms go straight down hill.  Recently she had a bladder infection and right after that she had pneumonia and was on antibiotics for each.  She in the last 2 days has gone completely down hill again which probably means another infection probably means UTI.  She has talked all night  long like someone was in her room.  When I go in her eyes are half open and she is just talking. This morning about 2:30 I gave her one of my valiums 10 mg.  The doctor sent in a prescription for Levaquin and said not to give her Aricept.  I can't seem to make myself do that.  I am having trouble enough without her being more out of it. I am questioning her current meds and trying to find what others are taking.  I want to try the aromatherapy I am reading about. Could someone tell me what to get and how to administer it?  Also is there anything else out there besides Aricept and Namenda XR and in the evening another Namenda 10 mg to add a boost in the evening.  Anyone have more current med advise.
Lane Simonian
Posted: Sunday, February 21, 2016 11:38 AM
Joined: 12/12/2011
Posts: 4986


Welcome, Oklahoma Sue.  You might repost part of this on the caregivers board to receive more responses.  If it is another urinary tract infection, you might try cranberry juice (although this might interfere with other medications).

http://www.webmd.com/women/news/20100823/cranberry-juice-fights-urinary-tract-infection-quickly

Aricept (and other acetylcholinesterase inhibitors) only treat symptoms of Alzheimer's disease but do not alter the progression of the disease and probably do little good as the disease progresses.  Namenda treats a cause of Alzheimer's disease (although not particularly well) and may improve activities of daily living but does not alter the course of the disease either.

Aromatherapy may work best through direct inhalation.  Have your mother smell two or three essential oils for a few seconds under each nostril once or twice a day.  Three of the most powerful essential oils for cognition are clove, bay laurel, and lemon balm. Rosemary, lemon, nutmeg, and holy basil may also be effective.  If agitation or restlessness at night are problems, lavender, rose, sweet orange, and patchouli are good choices.  

Best wishes.



docanddaughter
Posted: Wednesday, February 24, 2016 10:56 PM
Joined: 2/24/2016
Posts: 1


Hello,

I'd like to start my mother on something. She refuses to see a doctor. I am a doctor. She won't even take the vitamin and other supplements I have given her. She is very paranoid hat people are stealing from her and she is paranoid a pill may harm her. Sadly even one I give her. She and I were always so close. It is so sad. Looking for advice ...


Mimi S.
Posted: Thursday, February 25, 2016 9:44 AM
Joined: 11/29/2011
Posts: 7027


Hi doc and daughter,

Welcome to our world. 

You will get more answers if you copy and repost this on the Caregiver's boards.

Since you are an MD, I'd suggest you make a call to a neurologist who specializes in dementia and have a chat.

I don't like just giving meds, even though for you it's legal.  Some forms of common meds are great for most dementia patients. However, for a few, these meds are contraindicated.
I would suggest, from your library, asking for a copy of any book by Naomi Feil with the word Validation in the title. The method should help with your mom.

 Meanwhile, get your mom involved in as much as possible our Best Practices:

There are other things you can do to help slow down the course of this disease, including:

(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:

Basically, it involves:

- High intake of vegetables, legumes, fruits, and cereals

- High intake of unsaturated fatty acids (mostly in the form of olive oil)

- Low intake of saturated fatty acids

- Moderately high intake of fish

- Low-to-moderate intake of dairy products (mostly cheese or yogurt)

- Low intake of meat and poultry

- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal.

To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you. 

Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)

Avoid hydrogenated fats and trans fats like the plague.

(I also take Omega 3 and antioxidants.)

(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!)

(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful.  (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.)

(4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.)

(5) Plenty of rest. 

(6) NO SMOKING!!! and avoid air pollution as much as possible.

(7) Do whatever you can do to minimize stress.

(And take meds as directed.)

 

Aromatherapy is certainly worth a try.  I have a pillow stuffed with lavender that seems to help me get to sleep. Your mom may not allow drops, but some are in the form of lotions and you tell her they help her skin.

 

Hopefully, we'll meet again on Caregivers.


Lane Simonian
Posted: Thursday, February 25, 2016 9:48 AM
Joined: 12/12/2011
Posts: 4986


Welcome docanddaughter.  Aromatherapy may be a place to start as nothing is ingested. Sometimes it was hard to get my mother to sniff the oil (sometimes I sniffed it first--either this allayed her fears or it gave her the concept of sniffing).   Occasionally she would say that almost knocked me out.  And early in the process, she asked why have you been giving this to me every day for a month.  I suppose if it is impossible to get your mother to smell the essential oils you could use a diffuser, but this might not be as effective as direct inhalation.

For broader advice, you might post on the caregivers forum.  Wishing the best for you and your mother.


llee08032
Posted: Thursday, March 17, 2016 8:37 AM
Joined: 5/20/2014
Posts: 4408


After reading further I am assuming that lemon balm is different than lemon? And that I want to use different scents in the morning from what I would use in the evening? I want to use both the diffuser and sniff from the bottle. Does anyone have any experience in making their own oils and would it even be worth it to try? Thanks in advance.