We are not the subject of his thesis. He started a blog to be able to answer, in detail, the FAQ that his and other doctors' patients ask, but do not get thorough answers in a 10 minute office visit. He may do a monthly blog on my home page on a particular subject - right now we are just in the brainstorming stage, as I mentioned.
It's a two way street - we will be able to get information from him, and he will get more information on caregiving than he ever imagined from us. That can only benefit his patients and their caregivers. As Marsh said, "When I became a caregiver I realized that when I was the doctor caring for AD patients I had NO clue as to what the caregivers were going through. When a doctor is taking care of an AD patient he/she should spend at least as much time with the caregiver as the patient, particularly since there is not much of any value that can be done for AD. The primary goal of the doctor should be to keep the caregiver healthy so he/she can do a good job of taking care of the AD patient. "
It could be axona is missing something that is in MCT or coconut oil that many are getting benefits from. If Axona turns out to only be good for a short while or otherwise not worth bothering with, from the results many have had with MCT/Coconut oil means they missed the mark with Axona.
Someone posted before that some pharmacies will accept returned medications and give them (free, obviously) to people who don't have good health insurance when they come in with a prescription. It might be good to ask your pharmacy if they do that.
This is the blog of the geriatrician that Joan posted about back in June. I had forgotten about until I saw it in my 'bookmarks' so went to it. His latest blog is on talking to a patient/caregiver about hospice. I like it because he advises doctors on how they should 'talk' to them.
Before that he talked about surgery for geriatric patients. Here is part of it on surgery: 'One number that I always remember is that an elderly person who is on bed rest for four weeks will lose 50% of their muscle mass and 75% of their strength. Joint contractures (permanent stiffness of the joints) can occur in as little as a week in an elderly patient and sometimes as little as 24 hours. Bed rest can cause a loss of calcium, and nitrogen that may never recover and new onset diabetes after 8 weeks of bed rest. In someone who is already cognitively impaired, pyschosis is not uncommon or infections such as pneumonia and urinary tract infections.'
I will try to remember his blog because I find it interesting that most of his approaches are the opposite of what we actually experience.
Charlotte, <<I find it interesting that most of his approaches are the opposite of what we actually experience.>> This is interesting, can you give an example of what you mean?
He does not rush into surgery on older people and he tells doctors they need to listen more and talk less. He is referring to hospice in this blog, but I believe it can apply to all issues. There are not that many blogs there yet, so it won't take long to read all his blogs.
Just got an e-mail from Axona to do a survey about our use of Axona. If qualified, they would pay $50. We never used it - so don't qualify. Evidently the e-mail was sent to those who had gotten the coupon.
I just learned something new for those who are using MCT oil, or want to, that there is a powdered form of it available in bulk from a company called True Protein - https://www.trueprotein.com/Product_Details.aspx?cid=24&pid=86. This would be useful for those who don't like the idea of taking oil. It has a milk protein with it that allows it to be in powder form, and apparently can be mixed easily with water or other liquids. I am ordering some to try it out. This could also be ideal for traveling by plane or taking to restaurants.
My dh was diagnosed with Lewy Body Dementia almost two years ago. He was caught early but the specialist did say last summer that he was progressing slower than usual. He is slower and slower physically but he can still help his 98 year old aunt when she forgets how to use her cell phone and he doesn't have hallucinations.
He's been on MCT oil and coconut oil for about a year. He takes about 2 teaspoons of MCT and 1 teaspoon of coconut oil a day, usually blended into a smoothie. He also takes Sinemet, 5 mg of Aricept (more affected his balance too much), and Wellbutrin.
My DH's doctor fully approves of the Axona and thinks it's probably the reason for his improvement, but I haven't asked about coconut/MCT oils. Joan, have you asked Sid's doctor about this?
I was mixed up about the 3 - axona, MCT, and coconut oil, but now that Dr. Newport explained it, I will ask Sid's neurologist which, if any, he thinks would benefit Sid.
As I have mentioned before, Coconut Oil and MCT did nothing for my wife except give her diarrhea. I tried Axona, but quit after 3 doses since she complained of abdominal distress each time. I saw no improvement after it.
I saw no improvement with cocnut oil or mct but I probably never reached the correct dosage. Also it is very likely that my dh has FTD. We are still using the coconut oil.
I didn't notice any difference but like Jeanette I know I didn't give him enough. I still have an almost full bottle of MCT oil. I still buy it cause he likes it on his cinnamon raisin bagel every morning.
My husband has been on Axonafor 5 weeks .No noticable change.The neurologist said if ther is no improvement in a month stop it ,it's not working,but I thought I'd give it another month,I am desparate for something to help.Has anyone had success with the Axona? I ordered the powdered MCT and will try that as soon as it comes.
You can find much more information about Axona and MCT/coconut oil on the Alz.org message board for "Medications/Treatments for Alzheimer's and Other Related Dementias": http://alzheimers.infopop.cc/eve/forums/a/frm/f/762104261
Here are the threads specifically about Axona, MCT oil and Coconut oil: http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/63910335 http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/1911048343 http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/8601036143 http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/5521094343
I got one some time ago and I "fit their needs" even though I told them he only took it a few days. I don't know what "fit their needs" meant but they sent me a check for $50.
I have not tried Axona for my husband since the MCT oil has worked very well. He is definitely better today than he was in December of 2008 when we started. For a few months I gave him a tablespoon of MCT and coconut oil mixture three times a day. I have cut back to 1 tbsp. of MCT oil in the morning and a tsp. at noon and at dinner. Diarrhea was not a problem since he had a tendency to be constipated. However, weight gain is a problem.
No one has posted since April 19th 2010, I was wondering if you give an update on where your LO's are now with taking Axona or coconut oil. I am new to the site and was looking for results on this treatment. My DH is between stage 5 and 6. Fluctuating around. He is on Namenda and Aricept. ON Namenda for 4 years and aricept for 5.
I tried my wife on Axona a couple of years ago. She immediately felt nauseated and developed diarrhea, so I stopped. She had previously been on the MCT Oil, with no obvious benefit.
Coconut oil/mct oil did nothing for him that I could see. I do have him on tumeric - when I started him on it about 2 years ago it was from a small Korean study. Now researchers are looking more carefully at it - I have read a few articles the last few weeks on it - curcurmin.
My husband has taken MCT and coconut oil for about 3 years. His Lewy Body Dementia is progressing very slowly--he can still carry on a political conversation with friends and make his own lunch. Is it a result of the oil, or would he have progressed slowly anyway? No way to know.
The increased alertness in my husband was obvious when we started on the MCToil/coconut oil three years ago. There was also a great improvement in his ability to do the "clock" drawing (it’s nice to have some objective “proof” rather than just subjective observations.) His decline over these years has been gradual and he now needs help with daily activities. I have no idea if it is still helping or where he would be without it, but I will continue to give it to him.
Some additional information that may be of interest. I post on a food intolerance forum. One of the problems that some have are “brain fog” and memory related problems. There are several on that forum who use coconut oil for their memory (non-Alzheimer’s) problems.
Also, MCT oil is marketed on sports related sites. My son who does long distance cycling uses MCT oil.
Tried the Axona W was unable to tolerate it, non stop burping, and Gi Distress. MD said was worth a try, but he felt this was due to her prior surgeries, Gall Bladder, Liver and Intestinal, all have limited her ability to digest fatty or oily substances .