Yay!  I was able to change the picture on the blog!  Don't ask me how I did it, I have no idea!
Let me start this blog about things we have tried by saying that after reading all the testimonials, that I have come to the conclusion that what helps one person may not help another. Or it is in a different stage of the disease that it helps, or may be more of a preventative measure than something that helps after the disease has developed.
Bob is very sensitive to medications.  First of all, he has never taken any.  So when the the primary care doctor we were going to at the time (the year 2000)  recommended that he take a statin just as a prophylactic measure I was quite hesitant.  His cholesterol and trigylceride levels were all normal.  But we started it.  It was a year later I started to notice the changes in his memory so I immediately stopped it.  There were studies out at the time that statins were shown to cause memory loss.  (I have taken statins for years for what I think is a hereditary elevated cholesterol and have had no side effects at all).  And here I digress to get on my soapbox.  These were the good ole days for the drug reps.  They were the people dressed immaculately that you saw coming in and out of doctor's offices while you waited impatiently for your appointment.  The more the doctor ordered patients the product the more perks they got--free golfing, free trips etc.  I won't say I didn't enjoy those perks as well--lavish foods at the nursing stations, and free samples of medications that saved me a ton of money since I didn't have to buy them.  So doctors were freely ordering medications they probably shouldn't have.  That has thankfully changed with new regulations in place.  I can't say that is what caused his problems, but have often wondered what would have happened had he not taken the statin.
When Bob was diagnosed he was started on Aricept and he did very well on that and did very well for about 5 years.  But as he progressed the neurologist added the Excelon patch.  That made Bob noticeably more belligerent, my sweet Bob who hardly ever got angry in his life.  So the doctor switched him to Namenda, which is the standard treatment in conjunction with the Aricept.  But we didn't even get through a month of that, as it also made him more belligerent.  So I asked the neurologist for an antidepressant, as I had asked some of my nurse practitioner friends what worked for them in their practice.  The neurologist started him on an old drug with few side effects, Citalopram or Celexa.  He warned me to watch for side effects as antidepressants sometimes cause the patient to have thoughts of suicide.    Isn't that ironic?  He started him on the lowest dose (the little old granny dose to quote him) and then later doubled it.  That has done more than anything to keep things on an even keel.  Now Bob is very happy, even if he doesn't know what he is happy about!  But it has increased his penchant for talking to a non-stop level which folks do not know  quite what to do with!
I will go into some of the things that we have tried to slow the process of the disease, but it marches on.  First of all, Bob has always exercised like a fiend.  We had an Schwinn stationary bike in the basement and he kept track of the miles he rode on it.  He went around the world 1 and 1/2 times, but never got out of the basement.  Then he switched to the Concept II rowing machine.  He would record his result of each day on the computer and compete with others in his age bracket.  One my one people he was competing against would drop out and he would wonder what happened to them.  I would beg him to only exercise for an hour at a time and he would come up dripping wet with sweat, but he exercised 2 hours a day at top speed....We have a friend that recently started a KU (Kansas University) study (she is in the control group).  She said they would probably be interested in talking to me about Bob, and I told her no, I wouldn't do that, as it would most certainly skew their study!
A dear friend sent me a book "Awakening from Alzheimer's" and I have been interested to note that we have tried a lot of the things that quote "Maverik doctors" recommend in this book, and have studies to prove their theories.  But remember what I said at the beginning of this blog, that what helps one may not help another, or it may be more useful for prevention than it is to help once you have dementia.  We have tried coconut oil, we drink green or rooibos tea every day,  and have tried to go on a much lower cholesterol diet in recent years.  This reminds me of another interesting fact.  Studies done in recent years have linked the cholesterol plaques in the arteries of the heart to the plaques found in the brain of Alzheimer's patients--they are made up of the same material.  We also tried Prevagen, the one they are touting on TV now that has the active ingredient apoaequorin, first discovered in jellyfish.  I have a friend that says it has really helped her.  I had read about curcumin,  the active compound in the popular Indian spice turmeric, a main ingredient in many Indian dishes.  Curcumin's anti-inflammatory powers are legendary, and so are its antioxidant properties.  Some researchers attribute the relative rarity of Alzheimer's in India to the frequent us of turmeric in the typical Indian's diet.  And right after I started Bob on it, totally unbeknownst to me, a friend had also started doing research on it for a company in Minnesota (not Mayo).  So he has included Bob in his ongoing studies.  Another interesting thing the neurologist we go to told me this week.  He is at a research institute and they used a substance they had developed to inject patients last year, but all the testing afterward showed it had dissolved all the plaques in the brain, but it didn't help the symptoms of Alzheimer's in those patients.  Maybe the damage had already been done to the brain?  So next year they are going to try it in patients in an earlier stage of the disease.
Another thing the neurologist told me this week--Bob scored 12 on the MMSE test this week, down from 14 just three months ago.  He basically said we are doing all we can.  He had mentioned at one time he thought Bob had NPH (normal pressure hydrocephalus) and had recommended a brain shunt.  But my experience with them in the hospital had not been good, and Bob has such a delicate balance as well because he has had hydrocephalus all his life and has compensated for it, so I didn't want to mess that up, with disastrous consequences.  This plus my doing a lot of research on the computer, which some doctors frown on, by the way.  But I believe you have to be informed to make the right decisions.
Until next time,
Betty

This is the 4th post of this blog.   If you missed some, on my computer it tells how many posts are on the blog, and then lists the posts, so you can access them.  And sometimes when I click on it, all the posts pop up.  I am going to start this post by listing the 7 stages of Alzheimer's and commenting on them.  There is also a "mini-mental state exam" (MMSE) test that they give him every time we visit the neurologist.  The perfect score on that is 30, and Bob started out at about 28 six years ago.  The score is supposed to go down 2-4 points a year but it hasn't necessarily followed that pattern.  He did very well for the first five years after the diagnosis.  But this past year he has declined very rapidly and the test scores bear that out.  It was 14 at the visit in May, down from 22 the year before.  The doctor was so surprised by the significant drop that he ordered a CT scan, which was unchanged from the first one he ever did.  He saw him a month later, and that day he scored 18, which really perplexed the doctor.  I told the doctor, "I told you he had good days and bad days!"
Back to the 7 stages of Alzheimer's:
1.  No impairment.  The neurologist at this point called it MCI (also the call letters for the KC airport!) or Mild Cognitive Impairment.  He said it could go on to Alzheimer's or might never progress.
2.  Very mild decline.  At this point I could see a progression.
3.  Mild decline--difficulty in finding the right word in conversation, or difficulty in remembering people's names, which never happened before--either of them!
4.  Moderate decline.  In this stage they have poor short term memory (but NOT long term memory!)
They are supposed to have trouble with simple arithmetic, but it is so weird, Bob has never been good at math, and he couldn't answer the question on the MMSE test about what season it was, but could count backwards from 100 by 7s with hardly any trouble!
5.  Moderately severe.  There is significant confusion (he can't even tell you which sport team he is watching).  There is difficulty dressing appropriately (he had on a polo shirt and a tie the other day) but they can stall bathe and toilet independently.  I was having trouble getting him to shower about a year ago.  I mentioned it to the Alzheimer's Association social worker, and she said Alzheimer's patients usually don't like to shower.  Their brain already feels scrambled and the water hitting their head intensifies the feeling.  So we switched to baths, and he is doing well with that.  I think he is currently in this stage.
6.  Severe decline.  The person is unaware of their surroundings, wanders, and has loss of bowel and bladder control.  He has not started wandering yet, but I just got bracelets for both of us--mine has "caregiver" on it and his has "Alzheimer's) with the emergency phone numbers.  Since I can still leave him, the social worker pointed out that what if I have a car accident or something and died, no one would know that there was a dependent person at home.
7.  Very severe.  They are near death.  They may lose their ability to swallow, and in my experience, they choke easily and can develop pneumonia if they aspirate.  A lot of times the cause of death is listed on the death certificate as pneumonia, when it should have been Alzheimer's, which is probably why the number of patients recorded as dying of Alzheimer's is inaccurate.
I know I said I would talk about things we had tried to slow the progress in this blog, but it is already too long, so I will do that next time!