Information on Parkinson’s


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.

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Tonight we met a couple who have just received the diagnosis, Parkinson’s.  It was their first time at the Parkinson’s Disease Support Group.  I will speak only in general terms since I did not ask for permission to discuss their situation here.  As I listened to what they have been going through in incorporating the diagnosis into their lives, I couldn’t help but remember twenty-two years ago, when Mary Ann and I were in our early to mid-forties and the diagnosis came.

The couple tonight had been spending much time and energy trying to look forward, trying to determine what to do to prepare for what is to come.  There is so much information available now. I don’t know what the status of the Internet was twenty-two years ago, but, since we didn’t have a computer, its status is irrelevant to what we experienced then.

Information was hard to come by.  What was pretty unnerving was that the first Neurologists we saw didn’t seem to have much information either.  It isn’t that the disease had not been identified long before 1987.  The Neurologists we went to at first were not specialists in Parkinson’s.  Their staffs knew only the basics.  Since every presentation of Parkinson’s is different in each person, the basics seemed more harmful than helpful since they didn’t always fit Mary Ann’s experience of the disease.

During those early years, we did make occasional trips to Kansas City from Oklahoma City either to attend a Parkinson’s Symposium, or visit the Kansas University Medical Center’s Parkinson’s Clinic.  There we discovered a Neurologist and Staff who actually knew about Parkinson’s.  What was so frustrating to us as we went to the Neurologists in OKC was the discovery that we had come to know  more about Parkinson’s than the Neurologists and their staffs there.

Even at that, the knowledge of Parkinson’s in 1987 pales in comparison to what is known about it now, especially the non-motor symptoms.  I have talked about this before in other posts on this blog.  The question that has come to mind tonight is, what would we have done differently, how would our experience these twenty-two years have been different had we known then what we know now?

We talked tonight about the challenges that lie ahead for this couple.  They have worked very hard at anticipating and preparing.  They have searched the Internet and found lots of information, information that was not available when Mary Ann was diagnosed.  They have one of the best Neurologist’s around, one who specializes in Parkinson’s Disease.  Their situation is much more challenging than ours since both of them are dealing with physical problems.  The current Caregiver (now diagnosed with Parkinson’s) is likely to be needing care as time goes by. The one who has been receiving care is likely to need to become not only more independent but able to help the current Caregiver.

With the diagnosis only months old, it is hard for them to imagine how they will deal with what is to come.  When Mary Ann was diagnosed, we had no idea what we were getting into.  We did not have but a tiny fraction of the information these folks have.  The question wandering around in my head is what would we have done differently had we known what they already know, had we known what we now know.

The answer that first pops into my mind is, nothing, we would have done nothing differently had we known then what we know now.  Even with all the knowledge we have gathered over twenty-two years of listening and reading and learning, we still don’t know what lies ahead!

As we have lived out each day for all these years, we have used common sense based on the information available.  We found our way to a good doctor.  We paid attention and tuned in to the treatments and medications and reasons for them.  We went to the symposia and continued to read and learn.  When we moved we got a home that was fairly handicapped friendly and then increased that accessibility as soon as we could afford to do so.  At each step along the way, we made choices that accepted the most likely progression of the disease, choices that seemed to make sense.

We could not and cannot know what lies ahead.  We can simply create an environment friendly to our situation and trust that we will make good decisions as the days and weeks unfold.  We can only do what we have the knowledge and resources necessary to do them.  That is more than enough to do.  Yes, it means thinking about financial issues so that things are in place to the degree possible.  It means developing contingency plans within reason.  We cannot cover every potentiality.  We simply can’t.  We have had to accept that.  No one can know what lies ahead, nor is it possible to have every base covered.

The good news is that by acting responsibly, doing the best we can with the information and resources available to us as each day goes by, we have the best chance of dealing with whatever contingency may come.  There are no guarantees in life.  I am hardly the first one to come to that conclusion.  It is a truism.  By giving up the illusion that we can anticipate and prepare for every problem the diagnosis will produce in the future, we are free to live the day we are in with some peace and enough energy to deal with whatever that day brings.

The couple tonight had come to that conclusion after working very hard at assessing what the future will bring and preparing for it now. They will clearly make the best of a very difficult situation.

What lies ahead?  We have some clues, but only clues.  We won’t know what actually lies ahead until it happens.  Doing the best today with what we know, dealing responsibly now with what is actually happening, doing what we can today to position ourselves for what seems likely to come is not only a productive way to live, but it gives us the best chance of being able to deal with whatever it is that does lie ahead.

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How would you like to have a nickel-sized hole drilled in your skull and a wire threaded through your brain from the top of your head to the bottom of your brain, right at the brain stem?  That is where your brain meets your spinal cord.  How would you like to have that procedure done while you are awake?  And then how about having a second surgery just like it five weeks later?

Tonight at our Parkinson’s Disease Support Group meeting, there were a number of people present who have done just that.  They have had the Deep Brain Stimulation Surgery to help control the symptoms of their Parkinson’s Disease.  Their willingness to seek out such a surgery should give us a clue as to just how hard it is to live with Parkinson’s Disease.  The surgery does not cure the disease, it just sets the clock back a while so that the person living with Parkinson’s returns to a quality of life they had before the medications side effects began to outweigh its benefits.  Ideally they gain four to six hours of fairly normal mobility.

A technical description of the surgery can be found on the Kansas University Medical Center’s web site:  “To treat Parkinson’s disease, DBS [Deep Brain Stimulation] delivers controlled electrical stimulation, most commonly through bilaterally implanted electrodes, to targeted cells in the subthalamic nucleus (STN) or internal globus pallidus.”

Tonight Dr. Jules Nazzaro, the Neurosurgeon who does the surgeries talked with the group in detail about how he does the surgery.  He then spent a great deal of time answering questions.  There were some in the group who were considering the surgery, one very anxious to have it done as soon as possible.  One of those present who had the surgery a year ago, when asked how it went, got up and walked around the room.  There was no obvious evidence that he had Parkinson’s.  Before the surgery he fell about a dozen times a day, had a hand tremor, was taking well over twenty pills a day to help give him some mobility.  He is now taking only four pills a day and will soon reduce that to two.  After a time those pills create at least as many symptoms as they control.  Reducing medication is one of the most thrilling of the results of DBS.

There is a rigorous evaluation about three days in length to determine if a patient with Parkinson’s is likely to benefit from the surgery.  First of all, the person needs to have what is called idiopathic Parkinson’s rather than some form of Parkinsonism.  Parkinsonism is some other pathology that produces Parkison’s-like symptoms.  Because of the time spent working in the brain itself, those for whom the disease has progressed to the point that there are memory problems are vulnerable to those problems worsening. There are a variety of criteria for qualifying for the surgery.

Dr. Nazzaro is part of a team including Neurologist, Rajesh Pahwa, who happens to be Mary Ann’s Neurologist.  Dr. Pahwa is the one who determines whether or not a person is a good candidate for the surgery.  He prescribes and manages the complex regimen of medications that control Parkinson’s.  Dr. Pahwa is a master at finding just the right formula of pills to match each Parkinson’s paticnt’s unique needs.  When the medication options have finally been exhausted, but the patient is still healthy enough to go through it, Dr. Pahwa finally recommends considering the surgery.

It was a number of years ago that he suggested the surgery for Mary Ann.  She was just not interested.  At that time, I had mixed feelings about it.  I wanted her to have it, but I was not willing to try to influence her decision.  For one thing, selfishly, I didn’t want to have any responsibility for the decision if something went wrong.  As is obvious, there are risks to the surgery.  A second consideration is the importance of the attitude of the patient undergoing the surgery.  The patient her/himself has to make the decision and be committed to the recovery.

Actually, the two surgeries putting the lead deep into the brain are two of four surgeries.  There are two additional outpatient surgeries to thread a wire from each of the two leads under the skin into the chest area and insert the two generators.  The generators are turned on and off by a magnet.  The generators stimulate  specific areas of cells, actually to reduce their activity.  The missing dopamine that causes the Parkinson’s is what usually controls those areas.  One of those areas produces tremors if not properly controlled and the other produces immobility if not properly controlled. At least that is my understanding after attending so many Parkinson’s Symposia.

As an aside, Michael J. Fox has had what is called a Pallidotomy.  In that surgery a permanent lesion is made on the Globus Pallidus to reduce its activity and help control the movement difficulties that come with Parkinson’s.  One advantage of the DBS surgery is that it can be reversed.  There is no permanent damage to the brain should some more effective treatment come along (or a cure!).  If I understand correctly, controlling the two areas has a better track record for reducing symptoms and the need for medication.

At this point in the progression of the disease, along with the other major health problems that have joined the assault on Mary Ann’s body, she is no longer a good candidate for the DBS.

The surgery is recommended now earlier rather than later in the disease process.  It is a quality of life issue.  I have often heard people say that they finally had their back surgery or knee or hip replacement surgery when the pain was worse than their apprehensions about the surgery. The same is so for DBS surgery.  When finally the symptoms of the Parkinson’s itself and the side effects of the medication are  frustrating enough, the DBS surgery offers hope for a better quality of life.  There are not guarantees that come with the surgery, but the track record is very good.

University of Kansas Medical Center did the first DBS surgery, and Drs. Pahwa and Nazzaro are among the very best in the nation.  For those who are suffering the effects of Parkinson’s Disease, if the time is right, DBS surgery offers hope.

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.

She was taking so many pills, it just seemed as if the problem was acid reflux.  Looking back, it now seems so obvious.  Her chest would start hurting when we walked very far.  It often seemed to hurt when she had strong dyskinetic movements, the ones that come with years of taking the main Parkinson’s med, Sinamet.  The movements are the ones that Michael J. Fox often has.  I can even remember once hearing her say as we were walking back from the mailbox, I think I am having a heart attack.  The pain always seemed to subside after a bit.  There were so many aches and pains that were attributable to some aspect of the Parkinson’s that I just didn’t put two and two together. I take some comfort in realizing that neither did our General Practitioner or our Neurologist or our Endocrinologist or our gastroenterologist put two and two together.  As many medical tests as Mary Ann had had in more than a decade of the Parkinson’s no one spotted it.

When finally one night she had a heaviness in her chest and she went to the Emergency Room, the process began that revealed she had blocked arteries. She truly had had some silent heart attacks.

It seems so obvious now as I look back.  I think what happened is that the one already diagnosed major degenerative disease, Parkinson’s, took up so much space in my perception of our reality, that there wasn’t room for another health issue.

I remember when ministering to parishioners before I retired how difficult it was for people to handle multiple problems at once.  Some seemed to feel that if there was one health issue or other major problem in theier lives they had reached their quota for problems.  If a second and third major problem joined the first, it was an affront to fairness. How could it be?  The one problem was enough.  How could another problem and then one more be added?

Our journey has taught me in no uncertain terms that having one major problem does lessen the likelihood of having another.  Mary Ann has the Parkinson’s, high blood pressure problems, low blood pressure problems, low thyroid — she has had congestive heart failure, a major life-threatening pneumonia, four spots of skin Cancer removed. Some health problems actually make a person more susceptible to certain other problems.  When that is the case, the doctors and the Caregiver watch out for symptoms of those problems.

It is when a health issue emerges that is not related to the main diagnosis that it can slip in unnoticed.  Just because Mary Ann has Parkinson’s does not mean she cannot have some other health problem.

The same single focus can cloud the perception of Caregiver’s and doctors when the patient is elderly.  New symptoms are dismissed as a consequence of getting older.

What brought this topic to mind was the trip to the Dermatologist to have the stitches removed from the surgery on Mary Ann’s latest Basal Cell Skin Cancer.  I asked the doctor to look at a couple of other tiny spots just to be sure.  They are no problem.  We did, however, make a routine appointment for six months down the line.  I will continue to watch for spots on her skin that look suspicious.

The Parkinson’s needs not to cloud our perception or lessen our vigilance for other problems.  Mary Ann has her annual Mammogram.  She has a periodic Colonoscopy.  Blood tests check her thyroid activity, urine tests check her kidney function, her blood sugar level is checked along with her cholesterol. She has gotten the Pneumonia shot and will get the booster in another couple of years.  She routinely gets the flu shot.  She has gotten the shot to help prevent Shingles.  Her eyes are checked for Glaucoma, Macular Degeneration, and cataracts.  She has had a bone scan for Osteoporosis.

There are no rules concerning how many or how few health issues one person may have.  Things just happen.  Problems come when they come.  It is not a matter of fairness or lack of fairness.

Whether a chronic illness has joined your household or not, there needs to be the same amount of vigilance.  We all need to do whatever is reasonable and affordable to check for and help prevent the onset of the common diseases that come to many as the years go by.

I now look at and listen to Mary Ann more attentlvely and no longer assume that whatever the pain, it must just be the Parkinson’s.  There is no quota for the number of problems one person can experience.  Caregivers who understand that will give better care.

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.

It finally happened this morning.  I went to the kitchen just for a moment.  Then came the usual thump.  She was down.  The last time she fell, we had to go back to the Dermatologist to re-sew a two inch row of stitches, actually two rows, one deep in the wound and one pulling the surface of the skin together.  She had fallen directly on the wound and had broken the stitches.  The Plavix thinned blood ran freely.

It was just the other day that it dawned on me that we were then almost three weeks out from that drama, and there had not yet been another fall.  To appreciate the significance of that record, you need to know that Mary Ann has fallen multiple times a day, up to a dozen, in the recent past.  Up to that last disastrous fall, the pattern had been that falls came daily, sometimes two or three times.  On occasion there would be a day or two without a fall, but that was rare.

Mary Ann falls for a variety of reasons.  One of them is a symptom of Parkinson’s.  In fact it was one of the central symptoms that took her to the doctor when we first suspected that there was something wrong late in 1986.  She had pain and tight muscles in her left shoulder.  She had pain and stiffness in her left hand.  She would on occasion lose her balance and roll to the ground.  Maybe five years before that, we went on a couple of three day long church ski trips with other famiilies.  Mary Ann struggled especially with getting off the lift.  She always fell and had very much trouble getting up.  Finally, she just chose to stay in the lodge while we skiied.  Little did we know that a few years later the diagnosis of Parkinson’s would come.

That particular symptom of Parkinson’s cannot be corrected with a pill.  Physical therapy can help, but other than that there is no medicine that restores the balance.

A central symptom of the particular expression of Parkinson’s with which Mary Ann has been diagnosed is called bradykinesia.  Wikipedia has a good definition of bradykinesia: “Slowed ability to start and continue movements, and impaired ability to adjust the body’s position.”  When Mary Ann tries to start moving, the top part of her body may move forward while her feet refuse to move. Of course, when that happens, she falls unless there is an arm or a walker supporting her.

She seldom tries to use a walker any more.  She doesn’t have the physical strength to move it ahead of her.  When she did use it, she would often lean forward, body moving and feet cemented to the floor, leaving her in a very precarious position, hanging on to the walker for dear life.

With bradykinesia, a soft carpet may as well be wet cement.  Her feet just won’t move.  We have replaced all the carpet in the house with a short-knapped berber that is firm enough that she can move her feet (and we can roll the transfer chair), but soft enough to cushion her falls.  Most falls still leave a rug burn or a bruise or both.

When Mary Ann gets out of her transfer chair and tries to turn to walk around it, falls often happen.  When she tries to pick up something from the floor (now it may be something that is not actually there) she is, of course, vulnerable to falling over.

Since her stroke and the addition of the Parkinson’s Disease Dementia, a Lewy Body Dementia, Mary Ann has had some spatial perception problems.  Getting the utensil where she intends it to be when eating is a problem now.  When she is walking, sometimes she just does not perceive accurately where things are so that she can move her feet around them rather than trip over them.

In the last few years the Orthostatic Hypotension has been added to the mix.  That is a term that refers to the body’s inability to constrict the blood vessels fast enough to raise a person’s blood pressure to counteract gravity when standing up.  An adequate supply of blood is not pumped to the brain.  The result is called syncope, a fancy word for fainting.  It is not hard to figure out what happens next.  When people faint, they fall.

The time not so long ago when Mary Ann was falling up to a dozen times a day, it was the fainting that caused the increase.  She now takes medicine (Midodrine) to raise her blood pressure.  The medicine has helped some, but it has not eliminated the problem.  In fact the high blood pressure is taking a toll on her heart and her kidneys. There are often trade-offs that need to be made to maintain a reasonable quality of life.

Maybe now you can understand just why it was such a monumental accomplishment to make it twenty-two days without falling.  I am not completely certain why we managed to avoid falling for so long, but there are some things that seem to have potential for helping reduce the falls.

One thing is that Mary Ann’s last fall was pretty traumatic.  She has fallen hundreds of times and rarely done much damage to herself.  This time there was damage.  The return trip to the Dermatologist to be sewn up again was no picnic.  Mary Ann’s automatic pilot may have been reset to reduce her inclination to put herself at risk for falling.

Another thing has been my increased commitment to getting to her before she has a chance to fall.  I now spend less time in another room unable to see her.  I move more quickly when I suspect she might be on the move.

Since that last major fall, I have obtained the audio-visual monitor that allows me to see as well as hear her when she is lying in bed or sitting in her chair and I am at the computer.  I am now able to anticipate her getting up and heading out.  I can see her shifting or leaning forward, about to get up.  I am able to be there and help her before she falls rather than waiting for the thump and running to pick her up.

One recent change that may be having some sort of subtle impact on her stability is the new medication she is taking, the Exelon Patch.  It is intended to help with memory and alertness. To my knowledge it is not supposed to have any impact on the motor symptoms.  While I can’t put my finger on any identifiable dramatic change since she has been using it, she does seem to be doing better in most areas of functionality.  Since we live on a roller coaster of symptoms that come and go, sometimes very quickly, most of the time there is no clear reason for declines or improvements in Mary Ann’s ability to function well. There is no telling for sure how much, if any, impact the patch is having.

In the matter of this morning’s fall, Mary Ann, as is usually the case, did not hurt herself.  I still contend she could lead workshops on how to fall without hurting yourself.  I was upset that it happened, but no one can prevent the falls completely. As a full time Caregiver, I have to accept that. Most of all, I am still celebrating twenty-two days without a fall. Of course any decent celebration requires ice cream.  Two Pecan Cluster Blizzards from Dairy Queen beats a champagne toast any 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.

Count them, twelve prescriptions and three over the counter medicines make up Mary Ann’s daily regimen.  That translates into Mary Ann consuming twenty-one doses of that collection of meds most days. 

One medication is not supposed to be taken with food.  Another that is taken five times a day at two hour intervals, alternating between one half and one full pill, should not be taken with protein.  Another prescription is to be taken every four hours, a whole pill for the first two doses and a half pill for the last.  It is not to be taken too late in the day or if she is going to lie down for a nap (a need that comes without warning).  One pill is taken half in the morning and half at night.  Another is kept in her purse at all times to be used only if there is chest pain that is not diminished by taking a Tums, suggesting that it might be her heart.  She has to lie down to take it so that she doesn’t faint.  One over the counter med is to be mixed with juice or water and taken Tuesday, Thursday, Saturday and Sunday. 

One prescription is intended to raise her blood pressure so that she doesn’t faint.  Another prescription is intended to lower her blood pressure and help control heart pain. 

One prescription, when she first took it immediately after diagnosis, helped her keep movement, rather than freezing up.  It ceased to be helpful after about three years.  After a decade or so hiatus, it was added again to help diminish the extra movements produced as a side effect of the main medicine she takes to keep from freezing up completely.  Those extra movements are what Michael J. Fox often presents.  They are called dyskinetic movements, or dyskinesias. 

Side effects of the two meds that treat the movement disorder aspect of Parkinson’s increase the susceptibility to hallucinations.   The disease process itself of the Parkinson’s and Parkinson’s Disease Dementia produce hallucinations.  That means there is also a prescription to help diminish the hallucinations.  That is a medicine which can produce a fatal side effect in the elderly.  You tell me just how old we have to be to qualify for that side effect.

The brain chemistry of Parkinson’s produces depression.  Wouldn’t a person with Parkinson’s have to be crazy not to be depressed once in a while?  There are some prescriptions to help with that chemical imbalance.  The side effect of one is to make Mary Ann sleepy, but some of the others make her restless. There is something added to help her sleep. 

Two of the meds thin her blood and help reduce the likelihood of her having another stroke.  The lesion on her carotid artery has a rough surface — not a good thing.  The list of side effects of most of her medicines includes the matter of dizziness when standing up.   That means they interfere with her autonomic nervous system, reducing her body’s ability to adjust her blood pressure quickly enough when she stands up.  The disease process of the Parkinson’s and Dementia are complicit in that nastiness.  The result of the low blood pressure is that she faints, increasing the likelihood of hitting her head and having another stroke or breaking the skin and producing a major bleed. 

The newest prescription is a patch to be put on her back daily.  It is intended to help her memory and alertness.  It’s main side effect is vomiting.  I can hardly wait!  One additional side effect can be diarrhea, but then listed among the side effects of most of the rest of the meds is constipation.  She, of course, takes a couple of over the counter meds to counteract the constipation.   

I could go on!

Every Saturday my to do list includes filling the pill container, four compartments for each of the seven days.  Mary Ann used to do that for herself.  There was a time when she had even more prescriptions and multiple doses of some of them.  When she was having trouble getting them all organized and in their spots without missing some, she devised a numbering system for the bottles.  By the way, the numbers go up to eighteen, seven more than she has now.  The job of filling the compartments is now mine, but I still use her system.  I have to follow a meticulous routine with bottles set out in certain places on the table if there will be any hope of my getting the job done accurately. 

Once all the compartments are filled, we are ready for the week.  Each morning, one of the day’s containers is snapped out of the holder.  The pills must be distributed into the pill cup for the morning pills, taken with yogurt (with active cultures), juice and maybe cereal.  Pills from the other compartments are transferred into two pill boxes with timers, one set for two hours and the other set for four hours.   The timers beep at ten minutes, five minutes and three minutes before beeping for a full minute to tell us the time has come to take the pill.  It is a miracle that I haven’t thrown then on he floor and stomped on them to stop the endless beeping.  The bed time meds are left for another cup to be set out at the end of the day. 

Do I even need to tell you what the frightening error was that I made one dreary morning a few years ago?  I was sleepy.  I got Mary Ann to the table and filled the morning pill cup — with the night time pills!!!!!  It wasn’t until she was pretty much out of it and back in bed that I discovered what I had done.  I called the Pharmacist and we worked through the implications and what to do.  Gratefully, the doses were all low enough that no damage was done.  After that experience, I now make sure that all the lights are on, my glasses are on, I look at the pill container three or four times, and Mary Ann always counts the pills and examines them carefully before she takes them. 

Every once in a while, someone asks me what I am doing now that I am retired.  After they regain consciousness from my having whacked them up side the head, I explain gently that Caregiving is a full time job. 

The pills are a wonderful gift.  They have helped provide a quality of life we could not enjoy without them.  It is tough to live with them, but we can’t live without them. 

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.

There was a four night special on Alzheimer’s Dementia on HBO about a week ago.  A number of those who are in the online group for casegiving spouses of those with Lewy Body Dementia had no interest in watching the series.  Why?

We don’t subscribe to HBO (too tight to pay for premium channels), so it was not an option for us.  I don’t know whether or not I would have watched it if I could.

Especially when I was in the thick of ministry in a demanding parish, I had no interest in watching soap operas or reality television shows.  One reason was that I experienced on a surprisingly routine basis drama in people’s lives that matched or exceeded what was portrayed in the television stories.

One of the characteristics of the pastoral ministry is that due to its nature as a helping role and the concomitant vow of confidentiality, people often revealed what might be called their “dirty laundry.”  Sometimes they confessed their darkest side in search of forgiveness.  Often they revealed the worst of their family secrets. There are many revelations that I will take to my grave.

It was hardest to deal with revealed secrets that I was bound to keep even when interacting with other family members who were not privy to whatever it was.  I heard things that would not have made the latest soap opera because writers would have considered them too hard for the audience to believe.  You know those things we assume could never really happen, at least not to anyone we know?  They are happening in the lives of people all around you, people you could never have imagined could be involved in such behavior.

Having that window to the reality in which I was living, I neither needed nor wanted to immerse myself in some fiction attempting to provide me with a vicarious experience of the dramatic.  Real life provided enough drama.

The reason those online Caregivers were not interested in seeing a special on Alzheimer’s Dementia (AD), is that they are living the drama themselves.  For that group it is Lewy Body Dementia (LBD), which is different from AD in some respects.  The confusion and memory problems and hallucinations come and go, sometimes in minutes for those with LBD.  There may be a decline that is followed by a return to  former alertness.  There is a greater sensitivity to a number of medications, sometimes the very medications needed to control some of the symptoms of the disease.  Parkinson’s or Parkinsonism is often a part of the LBD experience.  There are very many characteristics that AD and LBD have in common.

Those who live with AD or LBD or PDD (Parkinson’s Disease Dementia – a Lewy Body Dementia that emerges after Parkinson’s has already been diagnosed), do not necessarily want to watch their struggle on television.  If anything, they want television to provide them some escape from Dementia World.

I have a thirst for information that might have led me to watch the Alzheimer’s Project on HBO, if we had HBO.  Information helps me objectify what we are going through.  Information takes away some of the apprehension because it demystifies the Disease.  It reduces its power to intimidate.  It becomes more of a matter of fact part of our lives, less able to blind side us with surprise attack of some sort. Of course anything can happen at any time, without warning, but at least we know what some of those “anythings” are.

It is fine to cut out articles and inform Caregivers of programs about the disease their Loved One is battling.  Just don’t be offended if they don’t read it or watch it.  They may be on information overload just dealing first hand with the disease.  They may, as do I, find the information a helpful tool for bringing the disease down to size.

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Would you believe, he told us at our Parkinson’s Support Group meeting to take our daily antioxidants and low dose aspirin.  He is Mark L. Weiss, Ph.D. whose life is centered on doing research on the potential of what is called Wharton’s Jelly.  Wharton’s Jelly is found in umbilical cords, a non-controversial source of stem cells.  Let me add immediately that Dr. Mark pointed out that he is not a medical doctor but a Ph.D. Any choices we make concerning medicine, even over the counter medicines should be checked out with our medical doctor.  He did say that it seemed pretty safe to suggest doing what every doctor and most everyone else also suggests, that we take antioxidants and low dose aspirin.

His encouragement to do so comes with the answer to the question, why?  Parkinson’s disease is caused by the death of the neuron cells in the brain that produce dopamine.  What kills those cells is an oxidant as in “anti”oxidant.  What first popped into my mind when I heard that was, broccoli wins again.  Eat those antioxidants.

The process that sends those killer oxidants on the attack is inflammation. Oddly, one of the hints that inflammation can play into the process that produces Parkinson’s Disease came after the flu epidemic of 1918.  There was an increase in Parkinson’s Disease after that epidemic.  Non-steroidal anti-inflammatories such as aspirin reduce inflammation. That is why the Cardiologists suggest taking them — to reduce the inflammation in the heart.

What was exciting about Dr. Mark’s presentation at the Parkinson’s Support Group meeting tonight was that certain umbilical cord cells (UCMS) found in Wharton’s Jelly can produce a form of stem cells having properties that hinder inflammation, interfering in the cycle that produces the death of the Neurons that supply the brain with dopamine.  In addition, there is a bonus that results in the rescue of the neurons that are dying.  If that is not enough, there is evidence that those particular stem cells can be transplanted without triggering rejection.

Please understand that what I have just written is what was heard by a retired pastor who has no formal medical training other than making thousands of hospital calls, listening to multiple doctors who deal with Mary Ann’s many medical problems, and going to many a Parkinson’s Symposium.  I could easily have completely misunderstood.  I will email my blog address to him and invite Dr. Weiss to comment and correct, although I am sure he has much better things to do.  All who read this post need to understand it is just my take on what I heard.

What I left wtih tonight was not so much an expectation that there will be anything that comes of this research that will change Mary Ann’s situation.  It was more an excitement that there are possibilities for slowing down the progression of the disease in those diagnosed with Parkinson’s.  Even hope that may not change our situation is hope.

Tonight I gained a level of understanding of this disease that I have never experienced before.  I credit the knowledge and communication skills of Dr. Mark.  I can’t speak for the rest of the group, but judging from the questions, it appeared that most of us gathered in that room now understand the disease process of Parkinson’s as well as some Neurologists.

Gathering with a room full of people who understand what it is like to live with Parkinson’s Disease is comforting.  We talk the same language.  We can talk about things that would either bore others or cause them to feel uncomfortable.  For some reason I feel empowered just by knowing more about the disease process.  It demystifies it.  Knowledge is power.  That Dr. Mark and others in the research community know as much as they do, increases the likelihood that a number of approaches to treating Parkinson’s will emerge in the years to come.

Tonight’s Speaker: Mark L Weiss, Ph.D. Professor of Neuroscience at Kansas State University; Associate Director of the Terry C. Johnson Center for Basic Cancer Research; Founder of the Midwest Institute for Stem Cell Biology; Anatomy and Physiology, College of Veterinary Medicine.

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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