November 28, 2009

Cardiologist’s Analysis Helps

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In forty years of calling on the sick, I can’t tell you how many times I heard from people who had gone through a surgery after they had recuperated, “I didn’t know how bad I felt before I had the surgery until now, now that I feel good again.”  I don’t think I realized just how heavy the weight was that I felt, thinking Mary Ann was declining at a faster and faster pace.

I can’t know how long the feeling will last since this is such a roller coaster ride we are on, but for the moment, it feels as if a deep and heavy sadness has been lifted.   Like a little child, I tend to act out when I am struggling with something.  I act out by getting grumpy.  I make no promises to anyone that I will now be nicer for a while, but there is a profound sense of relief.

Our Cardiologist, Dr. M, was a parishioner for the last dozen years of my ministry.  We have come to appreciate him very much.  He combines a lot of traits that a patient looks for in his/her doctor.  He takes the time to listen well.  Not only that, but he takes what the Patient and Caregiver have said into account when making decisions.  He is decisive in a way that respects those whose lives are impacted by those decisions.

He has made clear that he is not in the business of predicting the future and cannot answer the “how long” questions.  What he will do is disclose what he knows, analyze it and make a logical assessment of the situation.  While I am always looking for something that help clarify where we are on our journey, there simply are not definitive answers to my questions.

Today, I took an approach that allowed Dr. M to analyze the data with me and compare where we are to where we were eight months ago (the last round of tests).  He also looked back farther so that we could get a sense of the trajectory we are on, at least in terms of Mary Ann’s heart and kidneys.  The Neurologist is the one to ask about the Parkinson’s and Parkinson’s Disease Dementia.  The heart issues in particular provide the most concern in terms of longevity.

Dr M’s look at some key indicators seemed to reveal, that while Mary Ann’s heart and kidney health has declined, in most ways she has been moving back and forth along a pretty level trajectory.  Her numbers have been worse at times in the past than they are now.  They also have been better than they are now.

The conclusion seems to be that Mary Ann is fairly stable, not on a trajectory that is taking her quickly toward free fall.  Mary Ann and I are fully aware that something precipitous could happen, but the truth is, that is so for all of us.  The Parkinson’s itself has been moving very slowly.  There are not likely to be dramatic changes in its progress.  The Parkinson’s Disease Dementia, is another matter.  It is very unpredictable.  It changes in fits and starts and can turn on a dime in a new direction or return to a better place thought never to be seen again.  Other than trying to control the Autonomic malfunctions to the degree we can, we have only the Exelon patch to help with cognitive issues.

As to her heart and kidneys, it is the high blood pressure that is the enemy.  Today Dr. M responded favorably to my suggestion that we consider the addition of  Mestinon to Mary Ann’s medication regimen.  That drug has the potential of helping control the fainting by raising her BP only when she stands up, the time it drops thereby precipitating a fainting episode.  It is an off-label use of the drug, but there are no major concerns that militate against trying it.  It does not conflict with anything she is currently using.

My intention is to cut in half the dosage of the Midodrine (okay with Dr. M) for a few days, then add the Mestinon. It is always wise to change only one med’s dosage at a time so that any problematic changes that might occur will be easier to trace to the source.  I will try to take her BP as often as possible and ask our Parish Nurse if she would stop by to check it also. The goal is to use as little Midodrine as possible since it raises BP all the time, not just when standing.  BP is highest when lying down, since it does not have to fight gravity.

The information received today through Dr. M’s analysis helps in a couple of ways.  Both Mary Ann and I perceived what he said in a positive way.  I feel a sense of relief that revealed just how down I had felt about her perceived decline.  We understand her to be pretty stable and on a fairly flat trajectory in the progression of the heart and kidney problems.  Another way that we are helped by having more clarity on where we are in this journey, is that we can use our ability to deal with the challenges more efficiently.  We can’t afford wasting our days fighting things we cannot change.   We can’t afford to waste our energy because we are in denial about the realities of our situation.  As I have said before, a certain amount of well-placed denial can be very helpful in living through our days as meaningfully as possible.  However, we need to know what to accept and what to fight.  We don’t want to accept something when we should be fighting it, nor do we want to fight something that it is time to accept.  Today helped us better discern what to fight and what to accept.

At least tonight, my assessment is that I had moved toward acceptance of a more rapid decline than is actually happening.  I feel more bold now about stretching the limits of what we are doing.  I will, of course, not be foolish about tackling things that put us at an unhealthy risk.  A certain amount of risk, however, is necessary to stay alive and well.  After so many years of practice, we have ways of dealing with most of the problems that arise when things do not go well.  If we try something and it goes badly, we will deal with it and try something else.

I guess it has been a good day!

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.

 

November 20, 2009

Update and Gifts of Daily Bread

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Noma called this morning and asked if she and Herb could bring over a couple of bottles of Herb’s home made wine.  For a number of years, Herb has provided home made wine for the Thanksgiving Communion services at the congregation from which I retired.  He makes very good tasting wine.  Herb and Noma also brought a little meatloaf that Noma had made, and some home made peanut brittle.

The week started with Jan bringing with her a very tasty Mexican chicken pie on Sunday when she came to spend time with Mary Ann.  Then early in the week Mary brought by a large container of soup made using the Olive Garden recipe for their Pasta E Fagioli.  Jeanne came over for a part of the day today and brought a Quiche from Copper Oven, along with a piece of pie from there for each of us.  Mary Ann’s pie was one of her absolute favorites, Lemon Meringue.  Tomorrow, Mary is going to bring us some pork loin and dressing.

So much of the time Mary Ann is forced to eat my culinary creations, which I just decided to dub, Pastor Pete’s Pottage.  Mercifully, the pottage is interspersed with Glory Day’s pizza slices, Bobo’s burgers, Perkin’s pancakes and a variety of take out foods.  This week Mary Ann is eating like a Queen.  I, of course, am not wanting for good food either, since she needs help in consuming it all.

When food is brought to us, as it has been this week, very often it is brought with the instructions that it can be put in the freezer (or some portion of it) to be enjoyed at some time in the near future.

One of the best things about the food this week is that it is coming at a time when I have been concerned about getting more calories in so that she can stop losing weight.  Convincing her to let me feed her is not always an easy task, but she has let me do so here at home more often.  When I help her, she eats much more.  She has been eating very well with all the good food that has been appearing at our home. We weighed her this afternoon and found that she had gained back about a pound, after having dropped five pounds.

At lunch today, Mary Ann age a full quarter of the Quiche, followed by that very large piece of Lemon Meringue pie.  With my help feeding her, she ate every crumb of both.  She had eaten a good breakfast, the usual yogurt, juice and a large bowl of Shredded Wheat Mini-bites.

She was very tired today.  Yesterday, she got up fairly early and then went back to bed for a relatively short nap.  She ate well and was up the rest of the day.  Today, after the good breakfast, she really shut down and needed a nap.  Shortly after Herb and Noma came by followed by Jeanne’s arrival, Mary Ann got up and was up the rest of the day.

There was one episode that moved me to go ahead and increase the Midodrine that raises her blood pressure.  Between the Quiche and the piece of pie, as she was sitting in the chair at the table, she just went out, had a fainting spell.  I managed to take her blood pressure after she came out of it.  Her BP was 100/60.  That is pretty low for just sitting in a chair.  It sometimes drops lower than that, much lower, when she stands up.  (One time during a tilt table test at the hospital, it dropped to 50/30, when she was moved from lying down to 70% of the way to standing upright.)  When she is lying down it is often as high as 180 or more, over 105 or more.

I have changed out the pills in her daily pill containers so that the dose of Midodrine will return to the pre-hospital stay level.  I have also printed from the Internet an article by the National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health.  The article describes a study of a drug named pyridostigmine (brand name, Mestinon), which seems to help the problem of Orthostatic Hypotension (low blood pressure when standing) without raising the patient’s blood pressure when lying down.  The drug’s intended use is to treat myasthenia gravis.  This is an off-label use of the drug.  The study concluded that a low dose of Midodrine combined with therapeutic dose of Mestinon was able to control the Orhostatic Hypotension in most of the subjects.

I will fax or mail or take the article to our Cardiologist to see what he thinks of the idea of trying this new approach.  Our Neurologist, a nationally known authority on the treatment of Parkinson’s, had suggested the option of using Mestinon when the problem of fainting got so much worse last summer.  The goal, of course, is to gain a manageable quality of life without raising her BP to a long term harmful level.

At the moment, Mary Ann seems to be sleeping soundly.  We will hope for a good night.  The weather is supposed to be great tomorrow.  Maybe we can get out of the house for a while.

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.

 

November 18, 2009

Parkinson’s Webinar Attended

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Mary Ann was pretty tired today.  While I managed to get her up, dressed, to the table for pills and breakfast in time to get to her Tuesday morning group, she did not feel up to it.  She had said when I got her up that she didn’t think she would go today, but I thought after waking up fully and being ready to go in time to get there she might change her mind.

She did act pretty tired after she got up and ended up taking a major nap beginning in late morning.  She probably would not have been able to stay alert for the entire length of the group meeting had she gone to it.

After getting up, she ate lunch and we headed out for a bit.  I needed some coffee. After picking up the coffee, I offered to take her and she accepted going to Dairy Queen to use our buy one, get one free coupon for Blizzards.

It was late enough in the afternoon that she ended up changing into her PJ’s and heading to bed very early.  The Blizzard will have to serve as supper.  I suspect there will be some snacking once or twice during the night.

At noon today, I attended a live Seminar on the computer.  They are called Webinars.  The Neurologist was both a clinician and a researcher in Movement Disorders.  This Webinar concentrated on the non-motor symptoms of Parkinson’s.

The motor symptoms are what people see, stiffness, tremors, shuffling gait, falling, speech problems, problems with swallowing, dyskinetic movements (wavy rather than shakey) caused by the medication.  Then there are many more symptoms that are not visible, that, in fact, have in the past been ignored even by physicians who did not recognize them as part of the Parkinson’s Disease.

It was interesting to hear the list of non-motor symptoms.  It was the story of our last twenty-two years (twenty-three in March).  Long before diagnosis came the first of the sensory symptoms, the loss of Mary Ann’s sense of smell (and taste).  At pretty much the same time the Rapid Eye Movement sleep disorder began, acting out dreams vocally and physically.  While not diagnosed, what sounds very much like sleep apnea also began.  Then came the pain in her left shoulder, going down her arm, the odd feeling in her left hand.

The presenter talked about the fact that in the vast majority of cases, the symptoms begin on one side.  Mary Ann’s symptoms were classic.  As the disease was diagnosed and progressed, early on, the bladder problems and constipation joined the party of symptoms.

Later in the disease process, cognitive issues have arisen, the tip-of-the-tongue frustration as words get lost just before emerging from the mouth (who among us doesn’t share that one). The Orthostatic Hypotension (fainting when erect due to low blood pressure) has come on board with a vengeance.  Hallucinations have also joined the other non-motor symptoms.

Mary Ann’s expression of Parkinson’s includes almost every one of the fifteen or so items listed as possible non-motor symptoms.  Again, they are the ones that are hidden from view.  The presenter pointed to a misconception about Parkinson’s: If she/he looks good, she/he must be doing well — not necessarily so!

One of the benefits of writing this blog, is that I get the chance to describe what is actually going on away from public view as we deal with this disease and its offspring.  When folks ask how Mary Ann is doing, I usually respond with something fairly non-committal, realizing that there is neither time nor interest in the gory details.  Actually, I have the benefit of a cluster of folks who have been in our home with Mary Ann, who understand the behind-the-scenes of what we are experiencing here.  I can share pretty openly with them.  They seem genuinely interested and they know what I am talking about.

There were two areas of disagreement with the presenter today.  She is obviously far more intelligent and knowledgable about Parkinson’s than I am.  Again, she is both a Medical Doctor and a Researcher in Parkinson’s.

She said that in all cases, a change in symptoms that comes on suddenly, in days or a few weeks, cannot be due to a progression in the Parkinson’s Disease.  It only moves very slowly, never quickly.  Her point is well made.  If something changes noticeably, get to the doctor to see what is causing it. Don’t just assume it is the Parkinson’s.  On the other side of it, having lived with Parkinson’s for almost twenty-three years, I am convinced that there are various times when the disease process passes a certain threshold that makes symptoms apparent, symptoms that were not at the same level days or weeks before.  They appear as rapid changes.

My analogy for that is the speech of a toddler.  When words first come, they are indescribably cute, coming one at a time, sometimes at surprising moments.  There is a time of a paucity of speech, just a word here and a word there.  Then all of a sudden, words start getting put together into intelligible streams, short sentences, soon becoming an endless torrent of speech.  It seems to happen so fast, when the process actually has been going on for months in that little mind.  The full speech just bursts out when finally a certain threshold is crossed.

It seems to me that over the years, that is how this disease has progressed, in fits and starts, pleasingly slowly at some times and frighteningly quickly at other times.

The other area of some disagreement was concerning the likelihood of the Parkinson’s leading to dementia.  The presenter seemed to say that the onset of any sort of dementia was just coincidental, not part of the Parkinson’s.  She said it was less likely in the early onset Parkinson’s than in those who were diagnosed later in life.  I had understood the opposite to be so.  Those whose primary symptom, especially at the beginning was tremors, have no more likelihood than anyone else to have dementia later.  At least I read or heard that somewhere.  I cannot guarantee that it is true.  Those whose primary symptom at least at the beginning was bradykinesia, slowness of movement, as was Mary Ann’s, are more likely to have dementia later on.  Again, that is what I have read and/or heard, whether true or not.

The presenter did not seem to be completely conversant with Parkinson’s Disease Dementia, the Dementia with Lewy bodies that can emerge later in the disease.  In fairness, her not mentioning it may have been more a function of the time available in the Webinar than any lack of knowledge.  Her credentials and focus on Parkinson’s and the research she is doing makes clear that she knows whereof she speaks.  I should not presume to question anything that she said.

All in all, the webinar was well done and interesting.  Since I agreed with 98% of what she said, she must have known what she is talking about!  Okay, I know my limitations.  It is just that after so long focusing so much attention on this Disease, watching it progress little by little, following its fluctuations from such an intimate vantage point, it is easy to feel like an expert on it.  The truth is, I am an expert only on one expression of the disease, Mary Ann’s version of Parkinson’s.  On that issue, I will defer to no one, doctor or otherwise.

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.

 

November 14, 2009

Fainting Returns!

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Twice today Mary Ann fainted.  She has not done so in many weeks.  The fainting is due to a sudden drop in blood pressure, referred to as Orthostatic Hypotension.  It is another of the systems run by her compromised Parasympathetic Autonomic Nervous System.  That system runs the smooth muscles, such as those that create the peristaltic movement that keeps everything moving through the alimentary canal (esophagus, stomach, intestines, colon).  It also runs the smooth muscles that cause our arteries to constrict when we stand up, raising our blood pressure to compensate for the pull of gravity.

That was a lot of technical language that simply means that people with Mary Ann’s version of Parkinson’s and Dementia are often constipated and often faint after getting up from a sitting or lying position.  In both cases today, Mary Ann fainted when on the toilet stool, after trying to get up.  Having watched this at close range for so many years, it was clear to me that both syncopal episodes (medical term for fainting is syncope) happened when a dose of her generic Sinamet kicked in.  When it kicks in her body starts involuntary wavy motions called Dyskinesias.  Sinamet (Carbidopa-Levadopa) is the main medication that treats Parkinson’s.  It is the same medication that has been used for decades.  Most of the newer meds just help the Sinamet do its job better.

During the hospital stay, I suggested lowering her dosage in half of the medicine (Midodrine) that raises her blood pressure to keep her from fainting.  Last summer we doubled the dosage when the fainting got out of hand and was reducing dramatically our quality of life. That medication and the higher BP slowly damages the heart, reducing its flexibility.  Her heart is enlarging, stiffening, her kidneys are being damaged.  If we eliminate the Midodrine, it might add a little time, but the time would be of little quality.  The goal of my suggestion of lowering the dosage is to find a middle ground that gives us the best we can get of both longevity and quality.

I am not yet ready to raise the dosage of Midodrine.  If the fainting comes only when the Sinamet kicks in, I think we can manage the problem.  If the fainting increases to the level it was last summer (multiple protracted fainting spells, sometimes even just when sitting in her chair) we will need to increase the Midodrine back to the full dosage.  We will do what is necessary when it becomes necessary.  Gratefully, the Cardiologist and Neurologist understand the problem and have given Mary Ann and I the freedom to adjust the two meds (Sinamet and Midodrine) within a prescribed range as we determine appropriate.  I am grateful for the latitude in dosing, and I also feel the weight of that responsibility.

The day continues: Mary Ann slept until about 2pm.  I got her some lunch.  She did reasonably well at feeding herself.  She still is not eating enough.  I convinced her to let me help her with some cake after lunch.  She kept putting the fork to her cheek instead of to her mouth.  She was resisting my help, but eventually I was able to get most of it in her mouth  She managed a snack of ice cream later.

We got to the grocery store!  I was hoping we could get it done.  Since she is in the wheel chair, mobility is not an issue when going to the grocery.  I push her with one hand and pull the grocery cart behind with the other.  It is a little tough on my wrists, especially when she drops her feet to the floor and I am pushing against rubber soles on a tile floor.  Years ago, she used one of the motorized carts.  We gave that up.  There were too many displays put at risk by a driver with spatial issues.

We brought home Sesame Chicken from the Chinese counter in the store, so supper went pretty well.  She went to bed at about 7pm and has been sleeping pretty soundly since.  The first couple of hours after she goes to bed are usually pretty good. I will continue this post tomorrow with a report on how the night went (way more information than any who read this blog actually want or need).

Next day (Friday):  The night wasn’t too bad, but it was another early morning with multiple trips to the commode in the wee hours of the morning and finally up before 7pm.

She ate a good breakfast with my help on the bowl of cereal.  After a while in her chair she wanted to get dressed.  Immediately after getting dressed, she got back in bed for a nap.  That was about two and a half hours ago.  She did get up once for a trip to the bathroom.

The issue of fainting continues to be a concern.  She said that she has been dizzy the last couple of days.  That is usually from the low BP.  I tried to take her blood pressure while she was lying in bed this morning, but it didn’t register on the electronic monitor.  That usually means it is too high for it to measure.  BP is usually highest when lying down, since the heart is not pumping against gravity.

While she hasn’t actually fainted today, she came close to it once when I was trying to get her to the bathroom.  She also has seemed to be dizzy at least a couple more times.  I suspect that the switch to the higher dose of Midodrine will be needed.  I am giving it another day to be sure.

The day continues:  After getting up from her nap, I discovered something mightily irritating.  We had to start using new disposable underwear today.  Kroger’s generic has worked very well for us.  They have just discontinued the combination male/female one for new gender specific ones.  The same size and weight as we used before, but in the new female version managed to leak.  It happened twice.  All her jeans had to be washed.

I can only conclude that someone in the Kroger braintrust decided that it would be better for sales if they marketed gender specific disposables.  That would be fine if they had bothered to make them in a way that actually accomplished their purpose.  To those of us who use them, it is no small inconvenience.  The small amount it took to leak the two times it happened today suggest that a long nap or a long time between trips to the commode during the night would provide enough leakage to demand changing the bedding and washing the linens, as well as whatever she was wearing.

I took them back to the store, got my money back and bought the Depend’s brand in hopes that they will work better.  Even though they also are gender specific, the appear to be constructed in a way more like the generic male/female ones we were using.  The Depend’s brand, of course are $12 and change versus the $9 and change price for the generics.  We buy three or four packages every time we go to the store.  There goes the grocery budget.  We will soon determine if the Depend’s are adequate to the task.

The good news is that I found part of a package of the old generic ones in the bathroom closet.  Hopefully that will get us through until tomorrow.  I change the disposables often to protect against urinary tract infections.

Mary Ann was up for a while this afternoon, after her long nap.  She ate a good lunch, lots of left over Sesame Chicken and a huge piece of cake with ice cream.  We were able to run a number of errands with her in the car while I did the errands.  She is now down for her third nap.  It didn’t begin until almost 5pm.  It is now almost 7:30pm.  She has had no supper.  I don’t think there is a chance there will be much sleeping 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.

 

October 16, 2009

Quality of Life Is a Prime Consideration

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Her head is hanging over the side of the transfer chair resting on the table next to it.  I suggested that she go to bed, but she insisted on staying there for another half hour.  That half hour will be up in a few minutes.  I wlll take a break and get her into bed in a moment.

After a restless beginning last night, sleep finally came and stuck around.  There were only a few commode trips after she finally settled.  She chose to sleep in until about 9:45am.  That rest seemed to help her alertness and responsiveness.  She has often put her head down on the table today.  I think the restless nights and early mornings have finally caught up with her.

I am heading off to get her to bed now.

She is in bed and already appears to be asleep.  It is too early to tell, but I certainly hope she sleeps well.  She needs the rest.

When the phone rang this morning it was the call I was expecting from the Cardiologist’s Nurse.  She had in hand the reports from the echocardiogram, the carotid sonogram and her blood work.

The call was another encounter with realities that are not visible.  Probably the most serious concern is the increase in the severity of her Pulmonary Hypertension.  That is the disease that took the lives of those who had taken the diet medication called Phen-Fen (sometimes designated in reverse, Fen-Phen).  Pulmonary Hypertension has been a part of the array of Mary Ann’s diseases for the last two to three years.  It is a funcion of the high blood pressure, which is, of course, raised by the Midodrine.  Any treatment would involve medications to reduce her blood pressure, bringing on the return and probably increasing the frequency of the fainting spells.

As last summer’s posts reveal, the fainting spells lower dramatically our ability to function.  Gratefully, both Mary Ann’s Cardiologist and her Neurologist understand the dilemma well and respect our decisions on how to proceed.

As I mentioned a number of posts back when reflecting on the report we had received on her blood work, her kidney function also has declined in the last six months.  She is now only one point away from Stage 4 (of 5 stages) of Chronic Kidney Disease.  A couple of years ago, her Nephrologist agreed that any treatment would lower her blood pressure, creating the same problem as the treatment for the Pulmonary Hypertension.

The Cardiologist’s Nurse said that the lesion in her left Carotid is still not past the 50% mark, which is the point at which the need for surgery comes into play.  She mentioned that there is a build up on her right side also.  I don’t remember whether that has been mentioned before.

The Nurse confirmed that there is leakage in more than one heart valve, including the Mitrovalve.  That regurgitation seems to have worsened some, but the language of the tests was not clear on that issue.  At our last appointment with the Cardiologist six months ago, the leakage was not bad enough for the surgery option to be up for consideration. There are also enlarged chambers in the heart, especially the left Atrium.  That problem has worsened.

All of the above has been factored into our consciousness at some point already in the past.  Hearing the results of the tests bring it all to the surface.  My questions always probe the rate of change.  This set of test results seem to indicate a more pronounced decline that in the past.

I plan to fax the Neurologist to probe further any treatment options for the fainting that might not raise the blood pressure.  At one point he mentioned an off label use of a drug called Mestinon.  The Cardiologist was unfamiliar with it and unwilling to prescribe it at that point.  I may try to get them to talk with one another about that or other options.  Getting doctors to talk with one another is not always an easy thing to accomplish.  They are both good doctors — maybe it can happen.

On the matter of the quality of life and the health of this Caregiver, the power of the Alien possession is now getting scary.  This is the Alien from planet Pedometer Prime who, as in the movie the Body Snatchers, is trying to change me into some sort of walking, exercising pawn.  This will frighten you.  Mary Ann and I made an afternoon run to the store for something.  Afterward, I offered to get some ice cream.  We went to Sheridan’s Frozen Custard for a what they call a concrete.  The one of choice is made with chocolate frozen custard with pecans mixed in.

Here is the terrifying development.  As we approached Sheridan’s, the Alien simply took possession and overpowered my will to eat ice cream.  Those of you who know me well (or have been following this blog) understand just how horrible this was.  I got Mary Ann a concrete as described.  Then the Alien took over the car and drove it to Cedarcrest where I walked the path while Mary Ann ate her treat.  It is a miracle we made it safely.  I certainly had no control over that car or, at the very least, we would have veered left at 17th and headed for Maggie Moo’s.

If that is not horrifying enough, the Alien had already forced me out to walk in the neighborhood early (for me) this morning while Mary Ann slept.  Keep alert, you never know when one of those Aliens will try to take you over too!!

By the way, Mary Ann actually said she liked what I made for supper tonight.  There were a couple of pork chops in the fridge recently thawed and needing to be cooked.  We had some red potatoes, onions and fresh broccoli in the there also.  I cut up the potatoes and veggies and put them on a foil covered cooking sheet (I hate cleaning pans).  We had some Hendrickson’s dressing and marinade that we have used in the past and liked.  I tossed the veggies in it.  Then to make the food preparation easier, I put the pork chops in a baking dish and covered them with the same marinade.  Both dishes went in the oven (375) for almost an hour.  I really liked the meal, but then I like everything.  Mary Ann only ate the meat, but volunteered at one point that it was good.  There is such a feeling of victory when something has passed muster with those finicky taste buds!

Just in case the Alien attacks again in the morning, I had better settle in for the night and get some rest.

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.

 

October 10, 2009

Walking Mary!

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She got out of the car and walked up the steps into Dick and Dee’s house.  It was a bit of a walk, but rather than stopping to get the transfer chair from the van, we just walked into the living area to sit down.  I brought the transfer chair into the house, but from then on, it was never used.

We talked for a while.  Dick is also a retired pastor, and Dee has been very involved in church activities.  Not only that, but they both, especially Dee, are avid birders.  They love the wildlife and the outdoors.  They have built a heavenly respite with a wall of windows with deck and bird feeders framing the view of a very large pond surrounded by trees.  Between family and church, birds and other wildlife, we had lots to talk about.  You should hear Dick’s raccoon stories.

We visited with our Nephew, Tom, who shares the love for birds, the flora and fauna.  Our Niece, Jill and her three boys came by.  It was a very pleasant and satisfying mini-family reunion.

Then came dinner.  Much to my dismay, the lavish meal of mostly homegrown, nourishing and tasty foods dramatized the paltry fare to which Mary Ann is subjected on a regular basis.  We both ate voraciously, realizing we would be back at our usual table soon.

Later we went next door to see Jill’s newly built home.  Mary Ann walked outside to get in a golf cart that delivered her to the garage of Jill’s home.  That is when the walking began in earnest.  The house is huge, well-designed, woodwork done by Amish artisans.  We walked from one end to the other, enjoying what would put to shame most of the Home Network’s best.

After touring the house Mary Ann walked back to the golf cart, rode to Dick and Dee’s place, walked into the house, and we talked some more.  Then she walked out to the van so that we could head back to the motel.

Those of you who followed the events of a number of weeks ago will appreciate the significance of that walking.  After going through a time when Mary Ann could walk only a few steps, sometimes not even that before fainting, this was a pretty dramatic display.  I conditioned myself to jump up and either help her walk, or ask her to sit back down so that I could move her from one place to another in the transfer chair — seeking to avoid a fall that could do damage to her.  As this roller coaster we are on moves up for a time, it seems that I need to re-condition myself to just let her walk.

The harsh reality is that tomorrow may bring another dip in the ride — but maybe not.  It is a challenge to re-train my auto pilot to respond differently when she gets up.  It is encouraging to see her walking so well.  My hope is that the more she walks the better she will do at it.  She has gone down but not very often.  For the most part, I still stay very close, often with my hand lightly on the gait belt or holding her more tightly.  If she seems to be walking well and she is on carpet, I back off.

A few weeks ago I was wondering if we were beginning the endgame.  That thought has retreated for now.  The fall weather is energizing, and Mary Ann seems have perked up also.  When we were walking into the house, having just returned from our week long trip, after 11 hours on the road in pouring rain, she said “that went pretty well.”  Last summer I thought our traveling days might be over.  At least for now, it seems not be so.  In two weeks we head for our very favorite Bed and Breakfast in Hot Springs, Arkansas, Lookout Point – Lakeside Inn. [http://www.lookoutpointinn.com/]  There is no knowing what will be so when the time comes to load up and head out for that trip.  For now, we will just enjoy the moment.

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.

 

September 23, 2009

Carotid Artery/Heart tests — No results yet.

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Warm gel is a good thing when having an echo-cardiogram and a carotid sonogram.  Yesterday was Mary Ann’s every six month check of the lesion in one of her carotid arteries (the ones in the neck that supply the brain with blood), and her every six month check of her heart, the valves and general condition.

The tests happen so regularly since at some time, should the lesion in her carotid artery grow past a certain point, the question of surgery will come up.  She has already had one stroke, probably caused by bits of plaque sloughed off from that lesion.  The most we can hope for is very little change in how much of that artery is blocked.  I will admit that neither Mary Ann nor I am much interested in a major surgery.  We would certainly discuss the option.  I would not presume to know for sure what Mary Ann might want to do if surgery is suggested.  Her Mom had it when she was in her 80’s, and she did very well.

What the echocardiogram shows could have some impact on medications.  It was interesting to watch the med tech do the test.  She had a student with her.  She described what she was looking at to the student as she pulled up each view of Mary Ann’s heart.  I had a great view of the screen during the entire test.  It was helpful to me to hear her point out and name the parts of the heart on the screen.  Having watched the screen for the last few echo-cardiograms, I am getting fairly familiar with the images on the screen.  It helped this time to have a running commentary on what I was seeing.

What was especially interesting was a little mini-drama, as the med tech was describing what she was seeing to the student.  At one point there is color added to the screen.  The red indicates blood coming toward the probe, the blue indicates blood moving away from the probe.  When the med tech was checking the valves using the color mode, her voice lowered as she spoke to the student.  I inferred that the movement of the colors was indicating leaking valves and she did not want to break protocol by revealing that within Mary Ann’s and my hearing.  I had been quiet (unusual for me) until then.  I decided to relieve her distress by mentioning Mary Ann’s problem with leaking heart valves. The med tech’s response indicated my assessment of her reaction had been correct.  Up to this point, the leaking is not severe enough to warrant raising the surgery option.

Both Mary Ann and I had blood tests a week ago.  Her orders came from our GP (thyroid and cholesterol check), mine came from our Cardiologist (cholesterol).  Mary Ann is the one with problems, right?  Her numbers were great!  Mine produced a message from the Cardiologist to double the dosage on my cholesterol lowering med.  Mary Ann’s annoying ability to stop eating when she is full, as well as her distaste for leftovers and much of what I cook, seems to be serving her well in the blood chemistry department.  My inability to stop eating until everything is gone on my plate and all the containers on the table, does not serve me so well in the blood chemistry department.  I suspect a program of improved diet, exercise and weight reduction is in my future — perhaps I should have a snack and lie down until that thought passes.

We got a copy of the written results of our blood work yesterday after the tests were done.  Mary Ann’s results revealed the continuing reduction in her kidney function.  The surface of her kidneys has hardened due to decades of high blood pressure.  If you have read earlier posts about her struggle with Orthostatic Hypotension (low blood pressure when standing, producing fainting spells) you will catch the irony.  She is now taking medicine to raise her base blood pressure to reduce the problem of her BP lowering too much when she is standing and walking.  If I am reading the lab report correctly, she has just moved into stage three of five in her Chronic Kidney Disease. The good news is that we all have so much kidney capacity that it could lower to 30% of full functioning without becoming dangerous. When I include that sort of information, remember that I am not a doctor.  Don’t take my word for it. A few years ago a very candid Nephrologist told us that Mary Ann would likely die with Chronic Kidney Disease, not of it.  At that time we all agreed not to treat the kidney disease since the treatment would make the fainting worse by lowering her blood pressure.

As the tests were going on, I thought about how scary all the test results can be.  When we first were told about each of the problems, there was that feeling in the pit of the stomach that the end might be nearing.  After years of monitoring the results of the tests, it is just more information confirming what we already know.  Even if there is something new, Mary Ann has faced down so many medical problems for so many years, we just take it in stride.  Mary Ann could die in ten minutes, ten months, ten years, or more.  So could I.  Death lives just on the other side of life.  Coming to terms with that provides a sense of peace, and affirms the sweetness of the life we have at any given moment.  Our spiritual foundation steals from death its ultimate power to destroy.  Neither of us longs for it.  We both recognize the pain that is left to those we leave behind.  At the same time, we recognize our mortality and have learned to live with it.

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 19, 2009

Visit to Neurologist Specializing in Parkinson’s

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Today was our semi-annual visit to the Neurologist at the KU Medical Center’s Movement Disorder’s Clinic.  Dr. Pahwa is a national level Neurologist specializing in Parkinson’s Disease.  We have struggled mightily with this disease every time we have not been seeing either Dr. Koller before him or Dr. Pahwa.  Geography and insurance interfered with access to KU Med for a number of years during the twenty-two since Mary Ann’s diagnosis.

We are pretty well convinced that we have the best care available.  That is both good news and bad news.  It is good news since we have access to the latest and most effective treatments.  The bad news is that there is not much else we can do to improve Mary Ann’s ability to function.   This is the best we can expect.

Today, we reviewed the medications.  We reported on the changes that have been made.  At Mary Ann’s request, we reduced the dosage of Sinamet, the primary medication that treats the motor symptoms of Parkinson’s.  It is the same medication that has been used for decades.  With all the promising research projects going on, and the various news stories touting a potential cure, not much has changed since the middle of the last century in treating Parkinson’s.

The benefit of reducing the medication is that it has lots of side effects.  Since reducing the dosage Mary Ann has had fewer and less intense hot flashes that are shorter in duration.  There is a little less of the dyskinetic movements (as seen in Michael J. Fox) during the day.  Dr. Pahwa confirmed that change to be appropriate.  That is a medication that often is left to the patient to determine how much is taken.  Those changes are done within the range acceptable to the Neurologist.

I reported the increase in the Midodrine to keep Mary Ann’s blood pressure high enough to reduce the fainting spells (Orhostatic Hypotension) to a more manageable level of intensity and frequency.  The change in that medication was done in consultation with our Cardiologist, who prescribed the Midodrine.

We talked about the increase in hallucinations and their interference with sleeping.  As expected, he suggested a small increase in a medication called Seroquel.  He reminded us that one problem with increasing the Seroquel is that it can make the blood pressure problem worse.  Again, we are riding on a tiny margin between side effects battling one another.  We are in hopes that the contest will end in a draw.

I made the mistake of mentioning something about the online Lewy Body Dementia spouses’ group and information about the Autonomic Nervous System I researched on the Internet.  I can only guess that he is frustrated with Patients and Caregivers who second-guess his recommendations based on the often bad information.  I just made the observation that in looking up what the Parasympathetic side of the Autonomic Nervous system governs, the list included pretty much every area in which Mary Ann has a problem.  He was not rude, nor did he say anything much in response.  He just moved on to closure of the appointment.

I trust his knowledge and experience.  I just recognize that the more we know about the disease, the better we can do at dealing with multiple doctors and the more likely we are to make good decisions by actually understanding the options and their implications. That knowledge has been especially helpful when Mary Ann has gone to the Emergency Room and/or has been hospitalized.  The medical professionals there deal with such a variety of problems that they can’t possibly keep up on the details of all of the various diseases.

The next appointment is six months from now.  We will see if the increase in Seroquel has a positive effect.  Dr. Pahwa is willing to increase the dosage more if this does not work.  He increased the dosage from 100mg to 125mg.  He suggested that we move to 150mg if the smaller increase doesn’t move the hallucinations back to a level that does not interfere with sleep.  That decision is in our hands.

At the moment, we seem to have the best of what is available to deal with the Parkinson’s and the Dementia.  While we would like to have a better quality of life, our job is to make the best of what we have.

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 16, 2009

Better Day Today (Fainting and End Table Update)

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She is in bed watching the Chiefs play a pre-season football game.  They have not been doing well tonight, but they just scored a touchdown.  After the variety of problems reported in the last two evenings’ posts, today has been a better day for Mary Ann. 

She slept through the night with the usual few trips to the commode.  She got up at 9am.  The hallucinations seem to have subsided some for the moment.  She has been up all day, and went to bed to watch the rest of the game at about 8:30pm.  Of course there is no telling whether she will get to sleep or have a restless night after the game. 

There was a point this morning when she began to shut down some, but I offered to wash her hair.  She appreciates getting that done, so she chose to stay up.  After that we got in the car, ate a good lunch at Boss Hawg’s BBQ, ran errands that lasted long enough that we could justify getting a treat at G’s Frozen Custard.  There was a visit to the Library included.  We rounded out the errands with a trip to the grocery store. 

By that time it was late enough in the afternoon that we could watch the news and have a late supper.  I am, of course, hoping that keeping moving all day will help her sleep well tonight. 

As an update on the fainting problem, the Orthostatic Hypotension (the inability of the body to adjust the blood pressure after standing up), Mary Ann has returned to a more manageable pattern.  There is still some fainting, but not so much as to keep us homebound.  The episodes are fewer and generally milder.   The timing of the improvement seems to suggest that it just took the increase in dosage of Midodrine (blood pressure raising medicine) a few days to work.  Gratefully, the semi-annual Echocardiogram (and carotid artery ultrasound) is coming in about a month.  That will help us see how her heart is holding up to the raised blood pressure.  I have some concern that when I checked her BP the previous two days it was pretty low.  That might suggest that the Midodrine dosage is not adequate.  What encourages me is that the fainting spells have not increased.  I suspect it is too risky to raise the dosage of the Midodrine any more. 

One bit of good news on the periphery of our struggle is that the Black Walnut end table that my Dad made has been fixed and returned.  That is the one that broke one of the times Mary Ann fainted last month and fell on it.  (She was not hurt!)  Some good folks from the congregation, Myron and Orvin, worked on it and made it stronger than before by reinforcing it underneath.  They also  added a beautiful and protective new finish to it. 

The Chief’s lost, but it is only the first pre-season game.  Time will tell.

Today was a better day.  How tonight will go remains to be seen.  Then tomorrow is another day.   We will see what comes!

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 23, 2009

Living on the Edge

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There has been almost no fainting today, but at what price? 

It appears that the increase in Midodrine, a medication that raises the baseline blood pressure, has moved Mary Ann back over the threshold to the ability to stand up and walk without fainting due to a sudden drop in her blood pressure. 

Earlier today, our Cardiologist had Mary Ann come in to have a Holter Monitor hooked up to a number of leads that had been put on her.   If I understand correctly, the monitor is a miniature EKG recorder (Electrocardiogram).  The pattern of Mary Ann’s heart activity is recorded for that twenty-four hours.  We have a log on which we are to record the time of and describe any symptoms, in her case any fainting episodes (Syncope).  The Cardiologist will be looking for any irregularities in her heart beat during the symptoms.  Mary Ann has had this test two other times in the last three years.  If I remember correctly what the Doctor said, there were no irregularities those two times. 

One of the results of the timing of the increase in the dosage of the medicine is that it is working well enough to all but remove the episodes that are to be monitored. 

Here is why the title of this post is “Living on the Edge.”  I asked the Tech today if he would check Mary Ann’s blood pressure since the increased dosage of the Midodrine might be raising it too high.   In fact, I asked if he would first take it while she was lying down.  He did so.  It measured 240/110.  He had a look on his face that was mild shock.  I asked him if he would take it with her sitting up.  He did so.  It measured 248/118.  I was a little surprised since I thought it would lower some.  Then I asked him to take it after she had been standing for a few moments.  He did so.  It measured 140/70. 

The Tech was pretty surprised by the rapid change.  He said that in his twenty year career as an EMT and Clinic Tech, he had never seen anything like it before.  We feel so special!! 

Apparently, Mary Ann’s blood pressure needs to be kept far too high to keep it from going far too low.  When I measured two days ago it was 165/85 when she was sitting down, but when she stood up for a few moments, she fainted and was out cold for many minutes. 

The high blood pressure has weakened her heart and diminished her kidney function significantly.  Gratefully we have much more kidney capacity than we need, so she is not yet in serious danger because of the diminished kidney functioning.  As the Nephrologist said, she is likely to die with that problem, not from it. 

I guess for some, living on the edge makes life exciting.  I am here to say that Mary Ann and I would gladly accept a less exciting life!

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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