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!

Bob's health has always been excellent.  It is amazing, because he was born with cerebral palsy and didn't walk until he was five years old.  But he rejected the braces and other devices to help him along.  He wanted to play baseball so badly, but was always the last one chosen for the team.  But he kept at it, sometimes spending all day playing.  And that was the best physical therapy he could have had.  His grandma who raised him said he would come home at the end of the day crying because his legs hurt so bad.  But the exercise stretched the tendons, and by the time I met him when I was 16 and he was 18, you wouldn't have noticed anything but a slight limp.  He has had MRIs and CT scans through the years which shows that the hydrocephalus in the brain has not changed and he has compensated for it.  So I asked the neurologist if that had anything to do with the dementia, and he immediately said "no".  He also injured his knee playing football in high school and that same knee has bothered him all his life.  We met our junior year in high school when I moved from Idaho to Baltimore and started in the new school on my 16th birthday.  But we didn't start noticing each other (he says differently, that he knew that first day he liked me) until our class trip our senior year camping in the Shenandoah National Park.  Schools back then didn't go to England or France on their class trips, or at least ours didn't!  We went on a hike and he was so intent on the hike that he didn't notice the girl behind him doing her best to keep up!  Maybe he was trying to impress me! We started dating on graduation weekend, but then our paths separated and he went to college in Michigan, and I started nurses training in North Carolina.  But we kept in touch by letters (when I could read his handwriting).  We married in 1963, and moved to Hinsdale, a suburb of Chicago, where we both worked at the Hinsdale Hospital.
We always enjoyed hiking. When we moved back to Silver Spring, Maryland for 8 years where our children were born, we would take them to our beloved sentimental Shenandoah National Park and camp and hike, even though we would end up carrying them!
After we moved to Shawnee, KS, a suburb of Kansas City we looked for places to take the children to camp and hike.  We fell in love with Colorado and made sure we went there every summer.  We would be on a trail, and another trail would branch off from it and we would look at it longingly.  We would say "When we retire we will come back and do that hike"!  Laugh out loud!  After the children finished college and left home we started traveling more and it usually involved hiking.  One of the most memorable was on the Napali coast in Kauai, Hawaii when it had just rained and we came back covered in mud.  Another was at Machu Pichu, Peru where we climbed the centuries old Inca Trail, still very much intact, up to the Sun Gate and looked down on the ruins, just tiny little structures below, but with snow capped mountains in the distance.  Then we discovered Arizona, in the good ole USA!  We have done so many hikes there.  One was in Catalina State Park near Tucson, and we were on a trail trying to reach the Seven Pools before sunset.  Bob either fell and twisted his knee or twisted his knee and then fell.  Long story short, I had to run back to the ranger station (thankfully downhill) and they sent a helicopter for him.  They radioed which hospital they were taking him to, and I frantically drove the rental car back across town to the hospital, which was very near the hotel where we were staying.  They already had the surgery crew called by the time I got there, but Bob told them they had to wait till his doctor got there to approve it.  They asked who his doctor was and about that time I walked in and he said "There she is"!  I told the orthopedic surgeon I was sure he was good, but please just put a brace on it, give him some crutches and let us get back to Kansas to the hospital where we worked and to TJ, the surgeon that I knew and wanted.  He ended up only needing physical therapy.
Bob only missed three days of work in his whole career and that was due to a kidney stone that wouldn't pass on its own, and he had to have surgery to remove it.
On my next post I will write about some of the things we have tried hoping against hope they would help.

I finally decided to tell people about Bob's disease this week, and it has been an emotional week.  I could not do it before as he was very sensitive about it, and has never acknowledged that he has it, even in the early stages.  He is so good with covering it up, it is amazing.  If you watched the Glen Campbell story you will know what I am talking about.  When asked a question, he would just pass off the answer by saying, "Oh, I don't have to know that (and neither do you!) and I don't care about it.  One time in the neurologist's office when they were trying to get him to tell them where he was, he was evading the answer so cleverly that we all got to laughing so hard we were crying!  So when he was aware, I could not tell anyone.  Bob has always been excellent at names, much better than I am.  So when he didn't know people's names or introduced them wrong, I was really concerned.  And even after he was diagnosed, he was on the computer sending and receiving emails, he was active on Facebook, and he loved calling people on the phone.  He had a whole network of friends he kept up with.  So recently I opened his Facebook for him, and there were many messages there that hadn't been answered.  So when I put the message on my Facebook timeline, and also on his, I got an overwhelming response of love and support.  Then many on his Facebook sent private messages saying they wondered why they were not hearing from Bob.  It is surprising that so many people that responded had or has a relative or spouse with Alzheimer's.  And several others were dealing with other diseases that put them in a caregiver's role.
When I first decided to get a few people know, as it was becoming obvious that there was a problem, I was very unsure how to do it.  Bob had been a leader both in his hospital job and in the church a lot of hospital employees attended.  They would be used to him being in that role and would look for him to function like that.  Also, he was very good at seeking out the hospital employees that needed a little extra help or encouragement.  So I went to the Alzheimer's Association for help.  They suggested that I tell a few people that I trusted and tell them it was OK to tell people.  A lot of our friends knew, but in confidence.  But the first week we went to church after that, a member came running up to me and said "Bob says Roma is at the door handing out bulletins.  Is that true?"  I had to tell her he must have been mixed up as Roma moved away many years ago, and she wasn't there that week!  So that worked somewhat, but there were still others that didn't know.  Also, when he was talking to someone and got "off the track" I would slip them a little card, available at Alzheimer's Association offices that says "My companion has Alzheimer's disease.  Please understand."  Those have also been very  helpful at restaurants, etc.
The grandchildren have known for several years now, since they were picking up that things weren't right.  I read them a wonderful book by Maria Shriver titled "What's Happening to Grandpa?"  After I finished I asked if they knew why I read that to them and they piped up "Because our Grandpa has Alzheimer's".
So now I can relax more, since people will understand.  Until next time...Betty

Journey through Alzheimer's

Bob and I have been on many journeys.  We have traveled the world and have been to every continent except Antarctica, where I have no desire to go!  But now we are on another journey, a journey we had no idea we were going to take.  We made no reservations, and would have declined, had we been given the choice.
It began with a trip to Australia and New Zealand we were taking for our anniversary and Bob's birthday.  We left 3 days after 9/11/2001, and weren't sure planes would even be flying by then, but
with luck they were.  I noticed that Bob was having trouble remembering things the guide told us, like what time we were going to have dinner, but chalked it up to 16 hours of jet lag.  Things were fine when we got home, but then the same thing happened 3 years later on a safari to Africa.  Again I
chalked it up to jet lag and we were both having trouble hearing with our ears stopped up from so many plane rides, a lot of them in small bush planes.
I retired from nursing a year later in 2005 but Bob wanted to continue working.  He had always worked in the daytime and I had always worked at night so we got along fine!  But I started noticing more things now that we were together more.  My father had Alzheimer's and things started happened that were eerily similar, that we hadn't picked up on right away with my father.  I mentioned it to our
(former) primary care doctor and he just laughed and said "Oh, women don't ever think that men listen to them".  I told him, that no, it was more than that, I had had Bob's hearing checked and the audiologist said everything was fine, he was just tuning out what he didn't want to hear.  Then we met some friends we hadn't seen for years at a funeral and Bob talked to them like they were his boss some years back.  The lady called the next day and asked if I knew that Bob didn't know who they were.  I had just heard a little of their conversation but I had picked it up as well.  I confronted Bob with that information and he said, yes, he remembered after he got home, and wondered why the wife didn't belong with that husband.  I asked him to go see a neurologist, but he refused.  He said there was nothing wrong with him, and he was usually covering things up very well.
Bob retired in 2006, at my urging.  I didn't want his wonderful career to end by them having to ask him to leave.  I had wondered if his long time secretary in the hospital administration had picked anything up, but was hesitant to ask her.  He went to one last hospital function which I didn't attend, and on the way home he made a left turn right in front of an oncoming car, and totaled his car.
The people in the other car were injured.
I told him that was it.  He was going to a neurologist.  The neurologist (former) did minimal testing and told me he didn't think there was an elephant in the room and that lightening wouldn't strike twice (referring to my dad also having it).  But he did say that one of the first signs of dementia is losing the ability to judge distances, such as making a left hand turn with not enough time to do it.
Nurses have a wonderful networking system.  So I started asking my nurse friends about other neurologists in the area, and found the doctor that we have been with since 2009.  I was more than
happy with his testing, and he is the most kind, compassionate man I know.  He started Bob on Aricept which helped for a few years.
We are much further along in the journey now.  I will end for this time, and continue on later before
we both become glassy eyed!  It is a long road, but we live one day at a time.