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