She was sitting up in the chair in front of the television.  Her head started jerking forward and back up.  Her arms fell to the sides of the transfer chair.  She was out.   She had not stood up, she was just sitting there when it happened.  Medical folks call it Syncope.  You and I call it fainting. passing out. 

Why did it happen?  Her blood pressure dropped until it was no longer high enough to fight the pull of gravity.  There was no longer enough blood pumping to adequately supply her brain. 

It didn’t just happen once, or twice, or three times.  I lost count.  It was probably five or six times, one right after the other.  It has happened before, but never that many times in a row.  Only two or three times before has it happened while sitting down, unless it was right after standing up or walking or trying to get up — not just sitting down.

There is no explanation of which I am aware as to why the blood pressure is too high sometimes and too low other times.  It has been high almost her entire adult life.  That is called Hypertension.  She also has Orthostatic Hypotension.  That means, when she stands up, sometimes the Autonomic Nervous System [ANS] does not trigger the smooth muscles surrounding the arteries quickly enough to constrict to compensate for the additional gravitational pull down on the blood in her circulatory system.  Read the side effects on very many of the common medications we take.  They warn that there may be dizziness when standing up while taking the med.  That dizziness is a moment of Orthostatic Hypotension, low blood pressure when standing up. 

It sometimes happens to folks who have had Parkinson’s Disease for a long time.  It very often happens to those who have a form of Dementia with Lewy Bodies.  Parkinson’s Disease Dementia is one of those forms.  Little bits of material called Lewy Bodies form on brain cells in the part of the brain that runs the Parasympathetic System of the ANS. 

What all that means is that there is an insidious process that makes life still more difficult to some who are already in a very tough battle.  I know what the explanations are for high and low blood pressure in Mary Ann’s circumstances.  What I don’t know, nor does anyone else, is why for many weeks it has hovered at a frighteningly high level with no fainting spells, and now it is running high at times during the day and plummeting at other times. 

She had fainted some earlier this morning when she was up and down, using the commode. When it happens there, I have to hold her up with my shoulder to keep her from slumping forward.   Then after maybe ten or fifteen minutes of multiple times fainting while sitting in her transfer chair in front of the television, the Hospice Aide Sonya arrived for her first time giving Mary Ann a shower, washing her hair and dressing her.   I thought there was not a chance that Sonya would be able to handle her, even with the new shower chair with arms. 

Mary Ann did not faint once during all the ups and downs of getting into the shower chair, transfering back to the transfer chair she sits in during the day.  Why not??  Why does she faint one time and not another.  This is such a nasty disease, refusing to submit to patterns that can be anticipated. 

Now comes the question, do I resume giving her the Midodrine, a medication that raises blood pressure?  Her heart and kidneys are being damaged by high blood pressure.  I will take her BP in the morning and decide what to do.  If it is exceedingly high, I will not give her the Midodrine.  If it is exceedingly low, I will.  Of course, it is not as simple as that.  If her BP is normal, what should I do?  Normal is not high enough to guard against moving too low when she stands.  It often changes from way too high when she first gets up to way too low in an hour. 

This is an old story heard many times by those who have reading these posts since I began writing this blog just about a year ago now.  You have heard me talk about this many times before.  Here it is again.  It no longer scares me.  It just makes it harder to deal with Mary Ann’s penchant for hopping up and heading off, especially when she is hallucinating.  I have to actually sit a few feet from her every moment she is awake and alert, since she will stand and may fall soon thereafter.   She is completely unaware of any concern.  She doesn’t know she has fainted after she has become conscious again. 

She surprised me and slept fairly well last night.  She did all right at breakfast, fainted for a while, had her bath, ate lunch as Hospice Nurse Jennifer filled out some forms and took her BP.  It was 100 over something, still very low.   Mary Ann sat for a while and then headed to the bedroom and slept for four or five hours. 

I got her up for supper.  We went out again to pick up ice cream and a tankard of PT’s coffee to reheat in the morning (I’m a hopeless fan).   Since she was again in pop-up mode, I needed to get her in the car, seat belted in, so that I could relax and know that she was secure.   The ice cream was just an excuse for getting her into a secure place for a while.  You believe that, right?

Not long after eating the ice cream, she headed off to bed.  In spite of the long nap, at least at the moment she is sleeping.  It may not last. 

One of the people in the online Lewy Body Spouses group lost her husband today.  She described in detail the rapid decline and the process of dying.  My words to her were these:

You have been a mainstay in this group for a long time.  You have put words to what we have been experiencing.  You described what awaits us.  My condolences are laced with anticipation, as a result, I feel vividly what you have just experienced and pray for the peace Charlie now has to free you to find peace here, understanding that the peace does not void the pain you feel.  That is the price of love. 
Peter”

Our turn will come.

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It was the top line, one letter only, an E.  It was huge.  With her right eye, Mary Ann could not read it.  The Nurse had gone through all the sizes of letters available until finally she had the screen full from top to bottom with that one letter.   She could not read it. 

While Mary Ann seemed unfazed, I was taken aback by the impression that Mary Ann was essentially blind in one eye.  She had been to the Optometrist within the last year and a half.  She had gotten new glasses.  It was hard to imagine what could have caused such a dramatic change so quickly.  Neither she nor I had noticed her losing sight in that eye.  It just did not compute.

The Doctor came in to get more information and do a check of her eyes before the dilating procedure that would follow.  When the Doctor checked her right eye, she was able to read with difficulty letters on the screen that were large, but a size that allowed four somewhat smaller letters to show on the screen instead of only one huge letter.

After the glaucoma check and the dilating procedure had taken effect the doctor returned.  I asked her what might have caused the swelling that appeared yesterday and had disappeared by today.  She said it might have been a  chalazion, a blocked oil gland.  She observed that sometimes they will go away after a time and sometimes they have to be surgically removed. 

Then I asked her about the large quantity of thick, dark mucous that would sometimes gather on the edges of her right eyelid.  She mentioned the possibility that it might just be a flareup of blepharitis, an inflamation of the hair follicles of the eyelashes.   She prescribed a topical antibiotic if that should flair up again.  I will admit, having experienced blepharitis before, I am not convinced by that explanation, but we will use the antibiotic should it happen again to see if it helps.       

Neither the chalazion or the blepharitis are anything of major concern.  Then the Doctor checked the retina in each eye very thoroughly.   Her observations were good news in that Mary Ann’s retinas appear to be in very good condition.  The margins (?retina or eyelids) are in excellent shape, clear and clean.  She has cataracts, but ones that are a long way from needing surgery. 

The bad news is that the vision problems seem pretty clearly to be neurological.  The images from her eyes mechanically are being transmitted appropriately, all the parts working well.  The problem is in the processing of that information by her brain.  The Doctor did not say it, but it seems reasonable to conclude that there is no treatment for that problem. 

While I forgot to mention the stroke Mary Ann had about three years ago, it seems reasonable to consider that a factor in this problem.  The cluster stroke effected her right side.  The problem is with her right eye.  Ever since her stroke she has had problems using utensils to eat.  I mentioned in earlier posts the time she couldn’t see the meatloaf on her plate but could see the baked potato, the time she got up to get her Pepsi when it was right at the top of her plate inches from the food she had been eating. 

When I asked Mary Ann how she felt about the appointment, she asked if she needed new glasses.  I don’t know how much of what was said settled into her awareness.   We will make our routine appointment with the Optometrist since we are due anyway.  Mary Ann very often says she needs new glasses.  She seems to be convinced that any problems seeing are the fault of the glasses.  Since the iris of the eye is run by the neurotransimitter (Acetyl-choline) used by the Autonomic Nervous System (ANS), her compromised ANS (and the medications that treat it) has been affecting her vision for many years.  More of what the Parkinson’s and the Lewy Body Dementia have brought along with them when they joined us on our journey through life.  

As always, Mary Ann is just taking it all in stride.  It seems to be something of a blessing that some of the things she is dealing with have just not fully entered her awareness.  That may be by choice, or it may be a function of the Parkinson’s Disease and the Parkinson’s Disease Dementia.  It may all be sinking it, may simply be choosing not to talk about it.  It may be a defense mechanism to keep from dwelling on the problems.  It may be any combination of all of them.

Whatever is so, there seems to be nothing resulting from the appointment with the Eye Doctor that changes our current version of normal.  That is about the best we could have hoped for. 

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.

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.

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.

Today was a little better, but not much.  So far, the decline is having more of a permanent than a temporary feel.  As always, tomorrow things may change.

It’s all about the Autonomic Nervous System (ANS).  I have just been looking at some online information about the ANS, the Parasympathetic Nervous System, a subset of the ANS, and Acetycholine, a basic Neurotransmitter that communicates messages to various parts of the body.

Sounds technical, but for me it has very practical implications.  The messages that are communicated from the ANS impact the movement of the iris/pupil in the eyes, the glands, sweating, the mucosa (nose running and drooling), the smooth muscles of the heart, the vascular system and its capacity to constrict and dilate blood vessels, the alimentary canal from top to bottom, food entering, begin digested and waste leaving, bladder function and urine production.

The list of actions under the control of the Autonomic Nervous System is a list of Mary Ann’s Problems.

We have gone to the Optometrist many times to try to get glasses that will fix her eyes ability to focus and make reading possible.  Her eyes and those of many with Parkinson’s will not cooperate.  Changes in glasses have no impact on the problem.  It is a combination of the ability to concentrate and the eyes inability to function normally.

There is hardly need to say again just how debilitating the daily sweats are when they come.  The fact the the ANS acetylcholine transmitter talks to the sweat glands and other glands in the body is very revealing.

Mary Ann’s nose has been running constantly for a decade.  We buy four ten packs of Kleenexes when we go to Sam’s Club.

The problems Mary Ann has with her heart may or may not have anything to do with the ANS, but certainly her life long problem with high blood pressure and now low blood pressure does.  The ability of the blood vessels to constrict when standing up is governed by the ANS as it connects with the smooth muscles around the blood vessels.  That ability is compromised by the disease and medications.

The workings of the alimentary canal are an obvious problem as Mary Ann has struggled with constipation for most of her life, now worsened by the Parkinson’s and meds as the smooth muscles around that canal slow.

The frequent urination and incontinence are on the list of bodily functions impacted by the Autonomic Nervous System.  Our lives are dominated by the actions of that canal.

I guess it doesn’t really make any difference that I can see the connection between Mary Ann’s many non-motor symptoms and the Autonomic Nervous system, but somehow it seems helpful to put some of the pieces together.  I don’t like it any better, but I understand it better.

One thing that is clearer to me is that there is not a whole lot we can do about the decline that is happening.  The Autonomic Nervous System governs involuntary actions.  We can’t decide to make it work better.  It has a mind of its own.

It is just confirmation of the obvious: we are not in control.  We can watch and react, we can whine and complain, but we can’t fix it.   We are left to live with it.  That is what we are doing.

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.