Information on Parkinson’s

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August 8, 2010

Mary Ann: The Energizer Bunny!

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Life History, Meaningful Caregiving, Uncategorized | Tags: , , , , , , , , , |
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That January, Mary Ann could simply no longer care for herself.  I didn’t know what to do.  I needed to work to support us (60-70 hours per week as a Pastor).  We couldn’t afford that many hours of paid help.  It would cost more than my salary. The options simply weren’t there.

Then Margaret came to the rescue.  Margaret was (still is) the Parish Nurse at the congregation I was then serving.  She just started phoning people and before I knew it, there were Volunteers from the church staying with Mary Ann when I was away from the house at work.

After it became clear that she could not do the scheduling task and still continue her work as Parish Nurse, Carol stepped in.  For over six years, Carol scheduled Volunteers for weekdays while I was at work, evenings while I attended meetings and did Counseling, Friday evenings and Saturdays for weddings and retreats, Sunday mornings (I had paid help for the early morning hours), even emergency Calls when there was a serious illness or a death.  At one point there were at least 65 different Volunteers.  Some days had as many as five different people filling two or three hour slots.  I have never figured out how one person could manage all that.  I have nominated Carol for Sainthood.

By February, we had gotten back to KU Med Center, the Parkinson’s Clinic. They had transitioned to a new Neurologist, Dr. Pahwa.  He was able to put together a new regimen of meds that allowed Mary Ann to return to a significantly higher level of functionality.  The bathroom needs and the falling would still not allow her to stay by herself for any length of time.

After a year or so, we entered the two years from Hell.  Mary Ann had often complained of heartburn, since she was taking so many pills (I think 30-40).  At least that is what I thought.  It has always been hard for me to accept that I didn’t pick up sooner on the possibility that it might have been more than heartburn.

On June 30 of 2003, Mary Ann was admitted to the hospital through Emergency with a case of Congestive Heart Failure that came within a hair’s breadth of putting her on a Ventilator.  It was discovered that she had had a number of silent heart attacks.  Two of the three main arteries on her heart were completely blocked.  The surgeon was able to stent a branch of one of the arteries, but that was all.  She had another MI (heart attack) while in the hospital.

Mary Ann always moved into a hospital psychosis when hospitalized, hallucinations, agitation, inability to sleep, trying to get out of bed, pulling at tubes.  I stayed all night every night since the Parkinson’s meds were so complex, the various shift changes made it necessary for me to track what was going on.  The staff needed my help to manage her reactions, day and night.  I had to be there when the various doctors came to check on her or report the results of the endless tests and procedures.

By the end of those eight days, after an entire night of Mary Ann repeating “help me” over and over again, for the second time in my adult life, I broke down in tears.  Gratefully, Son Micah was there to hold me.  When she was released and came home, it was one of the lowest times in our life together.  Everywhere I turned to come up with a solution to how we could go on came up empty — except for Carol and the Volunteers.  They are the only reason I was able to continue in the ministry and we were able to survive.

Almost exactly one month later, she was back in the hospital with another MI and another unsuccessful attempt and getting through one of the blockages.  It was a shorter stay.  She came home again.

For a while after that she was doing better.  We returned to a reasonable quality of life.  It would take more than a little heart trouble to stop Mary Ann.  After a year and a half we even risked going on a week long trip by plane from Kansas to Tucson, Arizona for a retreat for older adults.  We had decided that we were not going to just sit at home and feel sorry for ourselves.  We chose to live as fully as possible given the circumstances.

I still blame the air quality on the plane.  Mary Ann was fine when we left the Kansas City airport but had some congestion when we arrived in Tucson.  By then we were using a wheelchair most of the time.  We joined in the activities, got to visit a wildlife center outside of Tucson.  As the week wore on, she was having some labored breathing.  It was March 10 of 2005. I called an ambulance to take her to the nearest hospital.  On the way, the dyskinetic movements that come with the Parkinson’s medicine were so bad that the tech in the back with her could not keep an IV in her arm.  Mary Ann was flailing around and almost flying off the gurney.

They sedated her when we got to the Emergency Room.  Then they took an X-ray.  When the ER doctor returned he said that all he could see what white where her lungs were supposed to be.  By that time she was completely unresponsive.  When I asked if I should call our children to fly into Tucson, he said yes.  The ER nurse confirmed that — so I did.  I will never forget the feelings I had as I sat alone in that ER room, knowing no one there, having been told she might not survive the night.  Mary Ann had been taken for some other test.  I am now living what I feared that night.

The Kids came, Lisa with baby Ashlyn in tow.  Mary Ann was so agitated that even with me there, they provided a hospital sitter to be in the room also.  Four days later, Mary Ann and I were on a plane home.  She had bounced back from that flirtation with death.

Within one day of a month later, the Ambulance came to out house in Kansas to take her to the hospital again.  She had had a stroke. It was April 9 of 2005. At first her speech was gone and her right arm was virtually useless.  It was not a bleed or a large clot, but a cluster stroke, plaque from her carotid artery broken into tiny pieces, lodged in a cluster in one part of her brain.  With a few weeks in the hospital, rehab, followed by outpatient therapy, she regained almost everything.  She was left with some spatial issues that reduced the control of her right hand making feeding herself more of an issue.

Mary Ann refused to give up.  We continued to have a reasonably good quality of existence in spite of the limitations.  The Volunteers and Mary Ann’s strength of will, kept our life on course.  Also by that time I had come to know a great deal about the diseases that had assaulted her and the medications used to treat them.  I was able to make helpful recommendations to the doctors and monitor her condition daily.  I think my advocacy for her with the medical professionals helped the quality of her life, until finally in the last weeks, nothing I did could stop the inevitable.

Before that inevitable day two months ago came, there was more of life to be lived.  That will come next.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

August 1, 2010

Finally, a Neurologist Who Understands!

Posted by PeterT under Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , |
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We were shocked when even his Assistant knew what we were talking about when we described the symptoms of Mary Ann’s version of Parkinson’s.  KU Med Center was an hour away, but Dr. Koller had a monthly clinic at hospital right here, only ten or fifteen minutes away.   We could hardly believe it. 

Mary Ann’s symptoms had worsened as the medication regimen set up in the hospital in Tulsa before we moved to Kansas simply could not handle them.  In the very first appointment with the KU Med Parkinson’s Department Neurologist, Dr. Koller, he assessed her situation and added a medicine called Permax.  Permax is dopamine agonist. It works by stimulating dopamine receptors in the brain.  It makes the basic medicine, Sinamet, more effective. 

Within one month, the time it took to titrate the Permax to its therapeutic dose, Mary Ann’s symptoms were reduced to being barely noticeable.  That level of functionality remained for almost four years.  It was as close to a miracle as we have experienced. 

In addition, a group of ladies in the congregation welcomed Mary Ann and took a special interest in her welfare.  She developed friendships that ultimately grew beyond the fact that she was the wife of the Pastor.  Connie, wife of Pastor John who had retired from that congregation was also someone who chose not to be defined simply by the role.  She had set a good pattern for Mary Ann to follow. 

I found much comfort in seeing Mary Ann develop those friendships and experience new relationships.  She became much less intensely private and finally admitted that it was true when I told her “they like you better than me.”  She had always in the past contended that the church folks were only connected to her through my ministry.   That had changed with the folks at the congregation I was serving here in Kansas.  Also she realized that she had friends from former congregations who remained friends with her long after we had left those parishes.  They were truly her friends.  In spite of the Parkinson’s, the dozen or so years here before I retired seemed to be some of the best for her in some ways.   

We had found a townhome in a shared maintenance subdivision that was the right size (less than half the size of our home in OKC) with everything on one floor.   It had come on the market the day before.  We got in the first offer at full list price.  The realtor realized that we were very fortunate to get into a maintenance free area at that price.  It turned out to be a very wise choice.

Since Mary Ann could no longer work, eventually there was a small amount of disability income that she was awarded.  It helped us alter the interior of the home so that it was more user-friendly for Mary Ann.  Friends enlarged doorways for us.  A contractor who was a member of the congregation built a roll-in shower and extended the bathroom a bit to allow it to accommodate a wheelchair comfortably in anticipation of that need arising.

We replaced the carpet with one that did not resist her feet moving when they shuffled.  It was a firm enough weave to allow a wheelchair or walker to move easily.  Parishioners did the labor on finishing the downstairs so that live-in help could stay there if that was needed.  There were aesthetically pleasing grab bars that look like and can be used as towel racks placed strategically in the bathrooms, along with tall stools. 

We found a couple of portable electronic doorbell systems that we put together so that there were four buttons spread throughout the places where Mary Ann spent her time.  She could buzz me whenever she needed help.  All the various tools provided an environment that was comfortable and welcoming.  We made a very functional living environment for ourselves — with the help of a lot of parishioners.  We are in debt to all of them for what they have done to help us and care for us. 

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

July 22, 2010

Life with Parkinson’s in OKC

Posted by PeterT under Daily Challenges, Information on Parkinson's, Life History, Meaningful Caregiving | Tags: , , , , , , , |
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Mary Ann insisted that her diagnosis remain secret for the first five years in Oklahoma City.  Some of it may have been her unwillingness to accept that it was so.  Certainly, much of it was that she didn’t want people looking at her and treating her as if there was something wrong with her.

It was very difficult to keep that information in since it had such a powerful presence in our lives.  Recently, Daughter Lisa told me how difficult those years were for her, not having permission to talk about it openly.  Mary Ann gave me permission to reveal it to a couple of people so that I would have someone to talk with about its impact on our lives.  If I wanted to add anyone to the list, I asked for permission from Mary Ann before telling him/her.

The secret became especially difficult to keep when the symptoms began to become more visible.  She would not let me tell our best friends from KC with whom we even vacationed at times.  I can remember the evening she gave me permission to tell them.  We were vacationing together in New Braunfels, Texas.  Mary Ann stayed at the condo since she was tired.  The rest of us went to a Beer Garden in nearby Gruene.  We sat together at a table and I finally told them what they already knew, that she was sick.  I told them it was Parkinson’s.

It was helpful to be free to talk about it with folks in the congregation when finally Mary Ann gave permission to reveal what it was.  All of them were loving and caring to us as we tried to deal with it.

Mary Ann had worked with a couple of Temp Agencies when we first arrived.  After about three years of that, one of the companies to which she had been assigned, Jack Cooper Transport, hired her from the Agency.  She worked something short of full time for the next six years there.  The people she worked with became her friends and support group.

Mary Ann could not be involved much in the life of the congregation since work took all the stamina she could muster.  There was certainly no chance to have the energy to do anything in the evenings, and little left on weekends.  I took Fridays off and tried to keep up with the house cleaning.  I was not terribly conscientious at it, but I tried to get the bathrooms and the vacuuming done and the beds changed so that we could spend time on Saturday together.

We made friends as a couple with some of the families in the congregation and visited, ate together, enjoyed each other’s company at various times.  The people in Oklahoma are some of the most gracious folks we have met.  The attitude there seems to be that people are accepted until they prove themselves unacceptable.  Folks don’t wait until people have somehow proven themselves to be worthy before accepting them.

Finding a Neurologist who knew enough about Parkinson’s to deal with the complexities of Mary Ann’s early onset variety was a challenge.  We never found one!  We started with a fellow who was pleasant to talk with.  He prescribed the basic beginning dose of the standard medication, Sinamet.  It helped some, but each time we met with him, we sat in his office across from him as he sat at his desk.  He asked if we thought the dosage should be changed in any way (yes, he asked us).

Immediately after the diagnosis, we began going to the Parkinson’s Symposia done at KU Med Center in Kansas City.  They have a Parkinson’s Clinic with a national reputation.  We would drive up there, at first without telling anyone why we were going to KC.  As a result, we had access to the latest and best information about Parkinson’s treatments.  It seemed clear very quickly, that the Neurologist we were using just did not have more than a very basic understanding of Parkinson’s and the available treatments.

We looked until we found another Neurologist in OKC.  That was our worst experience.  He is the one who came into the exam room without ever looking at either of us.  He sat at a little table just inside the door, looking down at the chart.  When he talked to us, he never looked up.  It was actually very weird.  By this time, Mary Ann had been on the basic med for treating Parkinson’s for a few years.  It worked reasonably well, as is usual in the first stages of Parkinson’s.

The last time we went to him was more than I could tolerate.  He suggested that Mary Ann might not actually have Parkinson’s, but have had a mild stroke impacting the left side of her body.  When I asked why then the Parkinson’s medicine seemed to be controlling the problem, he made a circle around his ear with his finger, indicating that improvement was in her head.  By the way, any Neurologist who knows Parkinson’s at all is aware that one of ways of confirming the diagnosis is to use Sinamet.  If the symptoms improve, it is most likely to be Parkinson’s.  Even I knew that.

By this time, Mary Ann’s symptoms were becoming more obvious.  After about eight years of taking Sinamet, the side effect of dyskinetic movements becomes a problem.  Those movements are the wavy ones that are often visible when Michael J. Fox is in the spotlight.  Mary Ann never had tremors, the fast movements in a hand or fingers.  Tremors are often a symptom of Parkinson’s, but not always.  She did have the dyskinesias that come from many years of using the Sinamet.

One time when she was at work, she just slipped off her desk chair on account of those movements.  She hit her side on the corner of a two drawer file and broke some small ribs.  There was nothing other than pain medication that could be done until they just healed on their own.  Mary Ann’s co-workers at Jack Cooper were caring and supportive, always watching out for her.

After the horrible experience with the last Neurologist, we were at a loss as to what to do.  Somehow, I became aware of an attempt by a hospital in Tulsa to develop a Parkinson’s program.  It was brand new.  A local Neurologist was developing a team approach.  We applied and Mary Ann, of course, qualified.

She was scheduled for three weeks of in-patient care as they would try to come up with a medication regimen that would work for her.  Tulsa is 90 miles from OKC.  I was doing full time ministry, trying to go back and forth.  Mary Ann hated being there, and I hated having her there.  What was especially frustrating was seeing how haphazard the treatment was.  Pills were often not given at the scheduled times. (the doctor’s schedule).  The Staff seemed unaware that the timing of Parkinson’s meds is crucial to their effectiveness.  Having been to enough of the KU Med Center Symposia, I knew that protein in the stomach at the same time the Sinamet  competed with its absorption and reduced its effectiveness.  That meant there was a need for low protein meals early in the day when the Sinamet was taken and the ability to move was most crucial.  I mentioned that the Neurologist in charge of the program.  She did not consider it an issue of any importance.

The medicine regimen that Mary Ann ended up with was a fairly complex combination of regular and time release Sinamet.  A problem was that the time release version of Sinamet exacerbates the side effect of dyskinetic movements.  That was Mary Ann’s most difficult problem.

Mary Ann just could not stand staying there the whole three weeks.  She managed two weeks.  When she returned to OKC, it was apparent that she would not be able to handle returning to work.  She was on temporary disability from her work, but it was at that time that we moved, since I had been called to a congregation here in Kansas.

During the years in OKC, the Parkinson’s grew in its impact on Mary Ann and on our lives.  We never found our way to anyone there who seemed able to handle the complexities of Mary Ann’s early onset variety of Parkinson’s.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 22, 2010

Perfect Storm Damages Resolve

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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Can it get tougher?  Apparently so.  Those who read this regularly must be getting awfully tired of hearing about the list of problems Mary Ann is dealing with and my complaining about their impact on me.  I debated even about writing a post today. It was ugly and messy.  My reaction was noisy and complaining.  There was absolutely nothing entertaining about today’s perfect storm of problems converging at one time. There is no resolution in sight.

Each of the elements of this perfect storm by itself is enough for Mary Ann and me to deal with.  I will describe again the ones relevant to this meteorological marvel.

One element:  Mary Ann has had Parkinson’s Disease for more than 23 years.  The medication of choice for Parkinson’s is a form of L-dopa.  The brand name is Sinamet.  That is the only effective medication for providing mobility.  Without it, Mary Ann stiffens and becomes rigid from head to toe.  After years of taking Sinamet, a side effect is wavy involuntary movements of body, arms and legs (as seen when Michael J. Fox is in the public eye).  Those movements are called dyskinesias.  The result is legs twisting together, body shifting one way and another, arms moving this way and that.

Another element:  People with Parkinson’s Disease develop problems with the functioning of the Autonomic Nervous System [ANS), the part of the brain that runs a whole list of activities in our bodies, activities that happen without conscious intervention.  In a small percentage of those with Parkinson’s, the ANS’s ability to quickly constrict blood vessels when they stand up keeping their blood pressure high enough to make sure that the brain gets enough oxygen no longer remains consistently able to do so.  That means the person affected gets dizzy at best and loses consciousness at worst.  Mary Ann has won the unfortunate privilege of having a severe and erratic version of that problem.

Another element:  Again, only a moderate percentage of those with Parkinson’s Disease develop Parkinson’s Disease Dementia.  There seems not to be a clear and consistent assessment of the percent of folks who move on to the dementia. This form of dementia is a form of Dementia with Lewy Bodies.  While there is no good dementia, it is a particularly insidious form of dementia.  More than memory issues, it is about visual hallucinations, delusions of all sorts, and vivid dreams that cease to be differentiated from reality.  There are few available in the way of medications that control the symptoms.  Most that might do so ultimately make the symptoms worse.

Another element:  One of the problems that comes with Parkinson’s is bladder activity.  There is the need for many trips to the bathroom day and night.  Because of the movement problems that come with Parkinson’s, help is needed when using the bathroom or bedside commode.  Another of the problems that come with Parkinson’s is sleep issues, the ability to get to sleep, stay asleep, disturbing dreams that interrupt sleep.  Another problem is that those with dementia often hallucinate most at night.  The combination of those problems is that those with Parkinson’s and those who care for them often have sleepless nights.

Another element:  One of the central non-motor problems with those suffering from Parkinson’s is constipation, intestinal issues.  The ANS not only runs the smooth muscles around the arteries, but the smooth muscles that move food and waste through the alimentary canal.  Those muscles slow reducing the natural ability of the intestines and colon to move things along.  Miralax and Senna are the tools of choice needed for Mary Ann to keep her insides running.  The result is not always orderly when finally there is activity.

Now to the Perfect Storm.  We have had two sleepless nights in a row, hallucinating has gone wild, morning, noon and night.  Just as we headed into the bathroom, the dyskinetic movements kicked in with a vengeance.  Then came the horrifying last element of the perfect storm.  There was soft and nasty matter that ended up spread on her back side and legs from her waste (on shirt) to her ankles.  My job was to clean her while she was popping up (the dementia – no matter how many times or how loudly I asked her to stay seated), fainting again and again, legs twisting and crossing and rubbing against one another when sitting or standing (with me using all the strength I could muster against her leg muscles to keep them apart), again, while trying to clean her up. There was another bout later in the day — not as bad, but not too far from it.

The hallucinations are still continuing tonight.  She has been hallucinating all day.  A short time ago I had two trips into the bedroom trying to convince her that it is time to go to bed, not get up.  Four minutes after the second trip in, finally convincing her that it is dark out, time to be in bed, she got up trying to get ready to go to church.  Last night once I woke to her sitting on the side of the bed yelling “help” and when I sat next to her she said someone was going to rape her.  This morning she woke me as she was sitting on the side of the bed crying, describing her beating at the hands of a policewoman who kept pounding on her.  I am afraid that the images from all those Law and Order episodes are folding into her hallucinations. I have been in at least a dozen times in the last hour or so.

Even though we had difficult nights, the the last two nights, this morning I managed to sleep while she napped for a couple of hours.  The perfect storm came right after that nap.  I was completely exhausted physically and mentally after the major bathroom battle.  Everything hurts, muscles, gut and mind.

These events are hacking at my resolve, my commitment to see this through to the end here at the house.  I am disappointed in my own seeming inability to handle this, but more horrified at the thought of not keeping my commitment to caring for Mary Ann at home.  I don’t want her not to be here, so that resolve is not just for her sake.

I wrote a bit on my dilemma in an email to the online Lewy Body Dementia Spouses’ group (many of whom have had much more difficult situations than mine).  One response was simply this little poetic piece:

who knows who knows
what do you do
when you break your commitment
or it breaks you

For now, I am taking some small comfort that while what happened this morning took me far past my ability to cope, I still did it.  I had to.  I am still alive, in some more pain than I care to have, but alive.  …and, for that matter, so is Mary Ann, alive and clean — still hallucinating in a steady stream.  I doubt there will be much sleep in this house tonight.

One reminder to those who wonder that you don’t hear from me (a retired pastor) glowing words about my faith life making this task easier to endure. Nowhere does there come any promise that life will be easy, that we will feel less pain, experience less frustration, because of our trust in our Maker and the One who healed our relationship with that Maker and the One who inspires us with His Power.  My faith is not weakened by my human weakness.  Instead, the One who does the healing retains the power.  I am all the more grateful that the healed relationship does not depend on my strength, but His.  His strength, my weakness.  That is the heart of the message of the Cross.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 16, 2010

Happy Birthday Mary Ann!

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Well, it wasn’t wild and crazy partying, but given our circumstances, it was okay.  After sleeping well last night, Mary Ann got up some time after 10am.  For some reason, when we were finishing with her pills and food (she was already dressed). I remembered a couple of music CD’s we had gotten when Occupational Therapist Karen was working with Mary Ann using rhythmic movements in her therapy.  It is a CD of big band music from the thirties and forties.  Even though we were not born until the early 1940’s, the music was part of our very early history.

I put the CD’s on and invited Mary Ann to dance.  As I have admitted before, I don’t dance.  I can, however, sway.  She laughed at me, as usual.  We stood for a minute or two of swaying/dancing before she fainted from the Orthostatic Hypotension (drop in blood pressure when standing) that has come from a combination of medicines and a compromised Autonomic Nervous System (due to both the Parkinson’s and the Parkinson’s Dementia).

Today did not include the option of going out anywhere since Mary Ann fainted every time she stood up — that is every time!  There was some intestinal activity, which always included a cluster of fainting spells.  I just hung close to her at all times.  If she just stood up in front of her chair to stretch her legs, she fell back into the chair and was out for a time.

In spite of that, the day went better than I thought it might.  She was awake most of the time.  She did not seem to be hallucinating very much at all.  She got good, long phone calls from both of the kids.  Daughter Lisa’s crew sang happy birthday, and both of the girls (5 and 7) had stories to tell about what was going on with them.  Mary Ann was able to respond a little to both Son Micah and Lisa.

My Sister, Gayle, phoned and sang happy birthday also, so Mary Ann got lots of attention.  There have been lots and lots of cards.  She now has a bank envelop with the words “for ice cream only” filled with a total of $60 in cash.  The bank teller wrote that note on the envelop in accord with the note on a $50 check.  I believe there will also be some Graeter’s ice cream from Louisville delivered when Lisa and her crew come to visit in June. That has to rank as one of the best in the world of ice cream.

Don and Edie came over again to deliver some flowers and visit for a few minutes.  Volunteer Coordinator Mary had brought over a bouquet yesterday.  Friend Jeanne called, widhed Mary Ann happy birthday, and arranged for a visit on Monday.

After eating a slice of Glory Days Pizza for lunch (left over), we each had a piece of rhubarb pie (Volunteer Coordinator Mary made it a couple of days ago using Mary Ann’s recipe).  Mary Ann’s piece, of course, had a couple of scoops of ice cream on it.

Mary Ann dozed for a while with her head down on the little table in front of her, but was awake most of the time.  The big band music was on for much of the time.  Later she lucked out and found a couple of episodes of “House,” followed by an NCIS marathon.  We went through birthday cards.  She was not as alert yesterday when I read some to her, so we went through them again.  She was much more alert today.

The wildlife was entertaining to both of us at various times.  Three very colorful Baltimore orioles were in and out of view for much of the day.  It was rainy outside, but only occasional sprinkles.

After some more leftovers for supper, we each had a big piece of the three layer melt-in-your mouth chocolate cake frosted with thick layers of whipped cream and coconut frosting.  I made a pot of Sumatra Badak Rhino Blue Tawar coffee from PT’s. It is a moderately dark roast that fit my taste perfectly.  Mary Ann is not much for the strong coffees that I enjoy.  She prefers Pepsi.

Today, I included the additional half tablet of Seroquel in the morning cluster of pills.  The Neurologist is suggesting we try that addition to see if it might help reduce the hallucinations.  It can cause her to sleep more of the time and increase the fainting, but the fainting had already started before she took her meds and long before the medicine could have gotten into her blood stream. She didn’t sleep as much as usual during the day today.  It is way too soon to draw any conclusions on the effect the increase in Seroquel might have.  Today she seemed to have minimal trouble with hallucinations and more fainting, but the medicine may have had no part in those characteristics of the day.

Mary Ann slept well and for a long time each of the last two nights.  I also have had two full nights of sleep.  I have absolutely no clue whether tonight will be a night of sleep or a night of hallucinations/delusions/dreams mixed with reality, up and down with no sleep for either of us.  I do know which I would prefer.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 11, 2010

Between a Rock and a Hard Place

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Almost every moment Mary Ann was awake today, I was never sure who she was seeing or where she thought we were.  She talked to people, the little girl, her Mother.  She whispered to me that there was some woman standing “right there” inside the van when I was trying to give her some medicine.  In the car after coming out of Perkin’s Restaurant, she asked why “he” gave directions to Laramie (Wyoming, the state in which her estranged brother lives).

That is the rock.  The hard place includes two things.  One is that she has continued to faint often.  There are times during the day when it seems more likely, but it can happen any time.  They often result in a subsequent nap.  That is the second thing of the two things in the hard place.  She has slept during much of the day many days.

The medication of choice to control hallucinations is Seroquel.  The most prominent side effect is that it causes drowsiness and can result in lots of sleeping, day or night.  Another concern the Neurologist mentioned is that Seroquel increases the vulnerability to fainting due to low blood pressure (orthostatic hypotension).  By increasing the dosage of Seroquel, the other problems worsen.   If we reduce the Seroquel, the hallucinations would be likely to increase.

As I have mentioned many times before, the medicine that is used to keep blood pressure up, reducing the fainting keeps her blood pressure at a dangerously high level.  Today in the Dermatologist’s office her BP was 208/93.  That is without taking the med to raise her BP so that she faints less often.

We turn one way and face up against the rock.  When we turn the other way, we face up against the hard place. It is a difficult spot in which to remain for very long without beginning to tire of it.

Because of the unique character of Parkinson’s Disease Dementia/Lewy Body Dementia, there is a sensitivity to sedative type medications that precludes the use of any but a very few.  The choices are very limited.  The problem with trying other meds for hallucinations to see if they will work is that the sensitivity of LBD and PDD results in losses that cannot be regained.  We can’t just try things for a while.  Mary Ann is now on the medications that are most recommended for treating the problems caused by PDD/LBD.

This spot between a rock and a hard place seems to be the place we will be living for the indefinite future.  We choose to live in an intentional state of denial, but it is not easy to maintain it.  While I always hope that the latest sign of decline is transitory and better times will return, it is beginning to seem that the better times are long gone.  The Neurologist of someone in the online LBD spouses group told her that some time her husband would have one of his fainting spells and just not come back. Sometimes having a support system that includes lots of information about the disease one is dealing with includes too much information.  Some things are better not to know.

I have rushed to the bedroom a dozen or two times as I have been writing the last few paragraphs.  Mary Ann is hallucinating and pretty adversarial and angry that I don’t respond appropriately to things that simply make sense to me or have no corporeal existence outside of Mary Ann’s mind.  I can only wait until, hopefully, she just wears out and goes to sleep.  She has been in and out of fainting most of the times I have gone to the bedroom to get her back into bed.  In fact she has been vocalizing some while fainting, sometimes acting in a belligerent way while in that state.

This morning I knew problems were beginning.  She was up a number of times very early, and when she could no longer stay in bed, she had that intensity that signals the beginning of the streaming hallucinations.  There was some fainting early on, but Bath Aide Zandra didn’t have problems with her.  After Zandra left, I got her breakfast and pills.  She sat in her chair for a while in pop up mode, but soon put her head down.  Finally, she wanted to lie down.

After lying down, I got her up to go to the Dermatologist appointment she has been asking about for a couple of weeks, often thinking it was the day of the appointment. She was concerned about some bumps she felt on her head.  There were no problems discovered.  The nurse asked Mary Ann what she was doing at one point.  Mary Ann said she was separating her fingers.  It was the thread or gold chain hallucination.

I just headed back to the bedroom again.  She asked if they served breakfast and lunch.  I confirmed that she thought it was a motel.  I tried to convince her that she was in her bedroom.  She responded angrily that I kept moving her from house to house.  I asked if she wanted some applesauce.  She said yes.  Then while I was getting it, she got up, walked around the end of the bed to the area between the beds and fell.  She did not hurt herself, but that spot is one from which it is almost impossible to extricate her.  The only alternative was to lift her straight up and on to the bed.  My back reminded me just how risky that move is.  That  area between the beds is too small to get the lift in and manage to put the sling around her.

I got her around to the side of the bed and started feeding her the applesauce.  She fainted, completely falling into me since I was sitting next to her.  Even when finally she was awake and ready to eat again, I had to hold her up and try to keep her hand away from her mouth so that I could get the applesauce in.  Sometimes when I am feeding her, she moves her hand to her mouth as if she is feeding herself.  I have to try to figure out how to get the food around her hand and into her mouth.  She gets irritated when I push her hand out of the way to get to her mouth.

I finally got her back into bed.  I am sure she will be up again soon.  Needless to say, this has not been one of our better days!  Here we go again — again demanding lifting and shifting and adjusting her in bed. Each time I have gone to help her there has been the same need for the physically demanding help.  This is another one of those times I am wondering how long I will last.

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May 3, 2010

Mary Ann Attends but Misses Trio

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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As we rolled back to the car after the concert this afternoon, Mary Ann asked why the trio I was singing in had not been asked to come up to the front to sing.  We did sing, but somehow it did not register in her mind.  Caregiver Debbie said that she had pointed out when I went up front to sing and that Mary Ann had responded that she saw me. The Parkinson’s Disease Dementia is such an odd sort of disease.  Perception is sort of like Swiss Cheese, there are random holes with no explanation as to why they are where they are.

The concert seemed to go well.  It was tough logistically to pull off since there was a huge choir made up of folks from five congregations.  There were numbers of instrumentalists playing at different times depending on the style of music.  There was classical music and contemporary music, liturgical dance, poetry, drama; there were soloists, ensembles, a hand bell choir, pieces with organ accompaniment and piano accompaniment and combinations of any or all of the above.  It would have been tough to sit through that concert without finding something to like. It struck me what a complex organism the event was with each of us having our little piece that when put together with all the others could provide something of such magnitude.  There were no stars, no one to single out, other than Young, the project director who had the vision and put it all together.

I enjoyed being in the setting, talking and thinking and listening to and making music.  One of the choir directors from another congregation sang in the trio.  He and I had a chance to talk music off and on.  It is a world in which I have spent much quality time in earlier decades.  I find it engrossing and energizing, as well as spiritually uplifting.

Yesterday I had a chance to talk with our eleven year old Granddaughter whose choir concert was also this afternoon, resulting in my missing it.  She seemed okay with my missing her concert.  She told me about some of the songs they would be singing.  Our Son said he would try to get some of the concert on video for us.  I feel better having made that connection.

Mary Ann and I both slept well last night.  I had plenty of time to get her ready this morning, dressed, fed two meals, hair washed.  There was lots of fainting again, raising some concern about how things would go if she tried attending the concert.  When Home Instead Caregiver Debbie came, we just headed over to church.  Mary Ann seemed to do fine.  The concert was almost two hours long, plus a reception afterward. Lots of people made a point of greeting Mary Ann.  Now that there is an awareness that she is enrolled in a Hospice Program, folks are probably less sure what to expect and more surprised to see her appearing to be doing reasonably well.

Last evening and this evening, after Mary Ann went to bed, I was able to spend almost an hour on the deck, enjoying the sound of the waterfall, watching clouds and birds, as dusk arrived and the lights in the waterfall shone at the base of each level, sparkling in the sheets of water coming over the rocks. As a result it is now getting late.  I will hope for another good night’s sleep tonight, but, of course, whether or not that happens is not mine to decide.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

April 21, 2010

New Twist – Hopefully Nothing Significant

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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Mary Ann lay down after lunch for a nap.  The moment she is settled in bed, I start doing tasks inside or outside, confident that she is very likely to sleep for a couple of hours without stirring.  Not so this afternoon.

When I came back in, her eyes were open.  She said that her esophagus hurt and she needed a Tums.  It seemed to be hurting more than usual.  She used the bathroom and had a fainting spell immediately after I put the Tums in her mouth.

The pattern we use is that Tums comes first.  If it does not help, a Nitro pill comes next.  If that hasn’t eliminated the pain in five to ten minutes, another Nitro pill is taken.  She has to be lying down for that since Nitro pills lower blood pressure dramatically.  Since she had just fainted, it was apparent that her BP was already fairly low.

Hospice Nurse Emily came to the door for her weekly visit as we were waiting for the Tums to work.  Mary Ann said that it seemed to be helping.  The new twist was that when Emily checked her oxygen saturation level (98%, very good) and heart rate with the finger monitor, Mary Ann’s heart rate was 111, almost double her normal, which is about 59 or 60.  Nurse Emily took her blood pressure, which was in a reasonable range for Mary Ann, 150/96.  It is always a puzzle that it can be that high just minutes after she has fainted from a drop in blood pressure.  She had stood up and sat down when the fainting happened, but she was lying down when Emily took her BP. Blood pressure usually measures higher when lying down than when sitting or standing for anyone..

Nurse Emily measured her heart rate a second time, and it had come down to 85.  After Emily left, Mary Ann said it was hurting again.  I gave her a nitro pill.  Her heart rate was over a hundred.  After a little less than ten minutes, her chest/esophagus was still hurting.  I gave her a second Nitro pill.  About ten minutes later I checked again.  By that time she said the pain had subsided.  I took her blood pressure at that time and it was 110/50.  As expected, the nitroglycerin had lowered her BP.

The concern, of course, is an unexplained increase in her resting heart rate.  I just pulled out the three pages of information on Cipro.  One of the bullet points under “Other serious side effects of Cipro include” is “Serious heart rhythm changes”.   The next sentence is, “Tell your healthcare provider right away if you have a change in your heart beat (a fast or irregular heartbeat), or if you faint.”  Okay, Nurse Emily was here when the heartrate was almost double her normal.  It did not seem to strike her as significant.  As is so with anyone who has been a Caregiver for a while, I never give away responsibilty for Mary Ann’s medical care.  I will check with Mary Ann periodically tomorrow.  If there is any discomfort I will check her pulse.  If it is racing, I will call Hospice to check with their doctor about how to proceed.  Since Mary Ann’s and our intention is that she not be resuscitated (those words are hard to see appear on this page as I write), we have to be thoughtful in how we proceed.  (Mary Ann has not yet had a chance to sign the DNR form in front of a non-family witness yet — not sure whether procrastination or denial on my part.)

She has been fine the rest of the day and is now in bed, hopefully, for the night.  She went to Bible study this morning and, according to her report, stayed awake.  She had lamented when she first got up this morning that she sleeps so much during the group time, that it seemed fruitless to attend.  She then admitted that getting out with people was good, and that was the only regular time with others she had.

I had an especially good time during the Bible Study,  I had a chance to talk for a time with a cluster of the staff with whom I worked at the church from which I retired.  I realize just how much I miss having those folks to talk with.  When there was some experience or encounter, one of little consequence in the grand scheme of things, it was nice to have some place to report whatever it was.

I headed over to the coffee shop (of course, PT’s) and ran into one of the owners I have known for many years.  As usual, he had just returned from another part of the world where coffee is grown, this time somewhere on the continent of Africa.  He is always entertaining.  I followed that with a visit to the Wild Bird House.  There I could review the experience with the Mallards yesterday and hear some stories about rahabbing ducks.  I didn’t realize that bullfrogs ate ducklings — not a pleasant thought, but interesting to know. Melody rehabs the birds, and Todd is a sort of Renaissance man, who plays in a group and teaches guitar, creates websites from scratch, and builds decks, as well as running the store with Melody. He and I talked deck issues — my bowing crosspiece.

We headed for the store, loaded the car with gas and the back seat with half gallons of ice cream, as well as Mary Ann’s Sesame Chicken dinner.  That is the lunch following which the problems began.  She had the same for supper without any discomfort, at least yet.

This afternoon, while Mary Ann was having problems and then napped, I took on the task of taking up the Snap-Lock mesh flooring in the bathroom to spread out on the driveway, spray with a fungicide, clean with a broom and bathroom cleaner wih bleach in it.  It is  a dreaded job.  The ceramic tile in the bathroom beneath the mesh gets the same treatment.  Tomorrow, Kristie will come and do her monthly cleaning.  This time she will also clean the ceramic tile now that it is uncovered. (The mesh is on the floor to avoid Mary Ann being hurt badly when she falls.)

This evening, Volunteer Jolene came to stay with Mary Ann.  I used the time to do a few things here at the house and then headed to Dairy Queen to take advantage of this week’s special — buy any size Blizzard at full price and get the same or smaller sized second Blizzard for 25 cents.  They are celebrating the 25th birthday of the Blizzard.  We are happy to help them celebrate.  After eating the Blizzards, I headed out again to check on getting a roll shade for the east end of the deck.

It was a full day for both of us. The central concern is Mary Ann’s heart rate.  Since she had a number of silent heart attacks that we missed seven or eight years ago, I do not take this lightly.  Those heart attacks were masked by what we thought was esophagus pain.  It certainly never gets dull around here.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

April 20, 2010

Infection Diagnosed

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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I have to wonder how long this has been going on.  I wondered about it right after coming home from the hospital last November.  There were none of the usual symptoms that were different from the symptoms of the problems already diagnosed and being treated.  It seems unlikely to me that such an infection could have been going on since November, although there is a chronic version of this diagnosis.

Hospice Nurse Emily phoned shortly after lunch time today to report that Mary Ann’s urine had tested positive for a Urinary Tract Infection [UTI].  In fact it is apparently a fairly serious one.  She reported that the doctor had insisted that Mary Ann manage to get in both the morning and evening doses yet today.  We have now done so and Mary Ann is in bed.

The medication is an anti-biotic called Cipro.  It is a strong anti-biotic whose sheets of warnings and side-effects (three pages of small print) read like a Stephen King novel.  The good news is that the Hospice doctor has a current list of all Mary Ann’s meds and a chart that includes all her medical problems.  The Hospice Staff have regular Team meetings on each patient.  It is a fairly small Hospice organization, serving only about thirty patients.  We regularly get a copy of the Team meetings.  Each report includes hand-written notes by each member of the team, including the doctor.

It certainly is a challenge to discern the signs of a UTI when every one of them matches something that is normal for someone with Parkinson’s Disease, Heart Disease, Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), Hypertension, Orthostatic Hypotension, Chronic Kidney Disease, Hypothyroidsim, Urinary and Bowel Incontinence, a stroke victim who has also had a life-threatening bout with Pneumonia.

Here is an interesting item on the list of those symptoms that are often indicators of a Urinary Tract Infection:  “Mental changes or confusion (in the elderly, these symptoms often are the only signs of a UTI).”  Imagine trying to catch that symptom in someone with a Lewy Body Dementia that has as its central symptom, mental confusion that comes and goes.

On the Medline Plus web site from which I got the information in this post there is a list circumstances that increase the likelihood of getting a UTI.

The following also increase your chances of developing a UTI:

  • Diabetes
  • Advanced age (especially people in nursing homes)
  • Problems emptying your bladder (urinary retention) because of brain or nerve disorders
  • A tube called a urinary catheter inserted into your urinary tract
  • Bowel Incontinence
  • Enlarged Prostate, narrow urethra, or anything that blocks the flow of urine
  • Kidney stones
  • Staying still (immobile) for a long period of time (for example, while you are recovering from a hip fracture)
  • Pregnancy

Mary Ann is not pregnant, does not have a prostate gland or kidney stones, nor is she diabetic, but all the rest fit to one degree or another.

I will admit that this diagnosis seems like good news in the sense that it provides a glimmer of hope for some positive change.  Mary Ann declined pretty dramatically after her hospital stay (during which a catheter was used).  It would be wonderful to be surprised by improvements coming with progress in treating the UTI.

Mary Ann (and I) got a pretty good night’s sleep last night.  She seemed to be doing somewhat better today but still had some confusion periodically.  There was a little more of the fainting and bowel activity.  She had a nap of a couple of hours during the mid-day.

We had a special treat today.  This afternoon Pastor Mike and Judy came to visit for a few hours.  They are warm and caring, as well as strong and intelligent people who have made their mark for great good in a central city area in Kansas City, Kansas that has had all the struggles that often come with older city neighborhoods.  I have tremendous respect for them as they have stayed engaged with and present in that community for decades.  Without fanfare or tangible rewards they have continued to serve in creative ways people sometimes gasping for air just to keep from drowning in a sea of failed attempts at trying to get by on their own.

We have known Mike and Judy since the early 1970’s.  I was a few years ahead of Mike at the Seminary we both attended in St. Louis.  Mary Ann and I have  listed Mike as the requested preacher at our funerals.  He and Judy have known Mary Ann since before the Parkinson’s.  As well as the personal fondness we have for them, they share with us an understanding of church that is deeply rooted in some core faith issues.  We have great conversations.  Judy especially made a point of talking with Mary Ann one on one, so that Mary Ann’s thoughts and words were not lost in the energetic talking of three others.

After spending time at the dining room table talking with Mike and Judy, we moved on to the deck.  It was a glorious day here, about 70 degrees and abundant sunshine.  As we sat on the deck, the pair of Mallard Ducks wandered back and forth, in and out of the waterfall, munching at the ground level platform feeder a few times.  They just sort of hung out with us, maybe twenty feet away.  The birds were singing their spring songs probably meant to impress some potential or current mate.  At one point a black Grackle (with that shiny deep blue head), Blue Jay, Cardinal and bright yellow Goldfinch were in view at the same time in the branches or on the ground in the immediate area.  A couple of Robins were nearby also, as well as the Mallards.  It always strikes me that colors no designer in his/her right mind would put together in the same space, work very well when in proximity in a natural setting. It would seem there might be some other artist at work weaving colors together.

Yesterday, our system here seemed on the verge of becoming impossible to sustain.  A good night’s sleep, some time during Mary Ann’s nap to get a few sort of recreational chores done (filling bird feeders, more weeding in the waterfall area), relaxed time visiting with good friends, has pulled us from the verge of impossible back to possible.  Since we live in a fairly small space between possible and impossible, I will not venture a guess as to where we will be tomorrow.  We will deal with that when tomorrow becomes today. Speaking of which — it is time to go to bed.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

April 9, 2010

Beautiful Mary Ann!

Posted by PeterT under Daily Challenges, Family, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , |
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Even at our age and in a wheel chair, Mary Ann is pretty.  Looking at those pictures of Mary Ann from the time before we started dating and pictures of her in our dating years and early marriage, I was reminded just how pretty she has been all her life.  No wonder I fell in love with her.  I am not so shallow as to have only looked at the surface.  Her personality has always been intriguing, exciting, unpredictable, entertaining and complex.  There has never been any pretense about who she is.

One of the things that jumped out in the pictures from earlier years was her bright smile.  That is one of the things that Parkinson’s steals from those whose lives it impacts.  Facial expressiveness diminishes.  Those pictures were poignant reminders of just how expressive and beautiful that face has been.  They also confirm and reinforce the image that still comes through when I see her.  It is a good thing when people grow old together.  These old bodies still contain young people.  When we grow old together, we can see past the old bodies to the young people living inside.

Mary Ann revealed that she was excited to have the chance to reconnect with her family.  It meant so much to her.  She has felt very disconnected after losing her Dad two weeks after we were married and two brothers, both when they reached the age of 51.  Her Mother has also been gone for many years.

The old pictures and conversation gave our two children a chance to discover more fully the family with which they have had little contact.  Their Cousin Diana and her Daughter Rachel provided through their presence and their stories about family a window into the other half of the gene pool from which our Children have emerged.

Mary Ann soaked it all in and responded as she could.  The night before last had been a tough one with multiple times up.  She crashed during lunch.  She could not hold her head up any longer as I tried to help her eat.  Finally, she gave in and decided to lie down.  After a long nap, she was able to interact and enjoy Diana, Rachel and our Children as they talked about and asked questions about the past.

Last night, Mary Ann went to bed and was asleep as soon as her head hit the pillow.  This morning, she was in exactly the position she was in when she fell asleep last night.  She had not moved a muscle, nor had she gotten up during the night to use the commode.

Our Daughter, Lisa, along with Husband, Denis, and the girls, Abigail and Ashlyn left for home early this morning.  Diana and Rachel were able to spend the day with us.  It was a good day, a little less intense and more relaxing.  We just spent the day getting to know each other better.

I had thought about giving them a quick tour of the area.  Mary Ann reminded me of the Tulip Festival at some spectacularly beautiful gardens at the edge of a lake on the other side of town.  The flowers provided clusters of vibrant colors, one after another, some more formal and symmetrical, others very natural with an asymmetry that was pleasing to the eye.  The weather was perfect, sunny, cool and clear.  The lake was sparkling and serene at the same time,  The gardens are filled with ponds and streams and waterfalls.

We moved on to travel west into the Flint Hills.  It would have been a crime to come this far and not see those rolling hills, prairie as it was hundreds of years ago.  Some areas were green with fresh grass growing.  During April comes the burn.  All the random seeds brought in by wind and wildlife germinate during the growing season and threaten to overpower the natural prairie grasses. In past centuries, buffalo fed on the grass until there was nothing left above ground. Roots extending fifteen to eighteen feet would assure that the native grasses returned the next spring.

On account of the decimated buffalo population, burning the foreign growth returns the hills to their pristine past.  Through the ashes soon burst the Big Bluestem, Little Bluestem and Indian Grass.  There is nothing like the contrast of that bright green emerging through the black ash cover.

The tour of the Flint Hills was a treat for me, and seemed to be so for Diana and Rachel.  We found our way to a little town called Paxico.  There is no grocery or gas station there, at least that I have found.  The buildings contain lots of old things for sale, ranging from flea market fare to expensive antiques. It is not a contrived and artificial imitation of an old town just for tourist consumption.  It is the real deal.  There is an outlet there for the pottery made by the Potter who turned the dishes and bowl that Mary Ann uses.  We have other pieces, bowls and cups and pitchers.  The name is Jepson Pottery.  His studio is in Harveyville, Kansas.

Mary Ann was ready for ice cream when we left Paxico.  We had leftover Grasshopper and Mud pies from Baskin and Robbins for supper.  Mary Ann is in bed and, after a snack and some Tums, she seems to be sleeping.  Tomorrow is likely to be a recoup day.  Hopefully, she will have another restful night tonight.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

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