New medication for constipation

Like most of us with PD, I have had problems with constipation.  In the past, I was able to deal with this using a herbal laxative, fiber powder, prunes, hydration, and exercise.  A few years ago I developed an ongoing problems with bloating that was not relieved by gas pills.  My gastroenterologist (does my colonoscopies) had me start on Linzess about 2 years ago.  Gross alert! My stools have consisted on mostly water for the last 6 months and the bloating had not improved.  

After my last colonoscopy in December we revisited these problems.  He told me there were new meds that he wanted me to try.  I took Xifaxin-550 mg (an antibiotic) for two weeks and then started on Motegrity-2 mg five days ago.  I have had multiple "normal" bowel movements every day.  I had some headaches initially with both drugs and there is some dizziness, but it is well worth it for me.  The motegrity is a 90 day prescription that I think I will be taking for 6 months and then decide with doc where to go from there.  Meanwhile, my quality of life feels much improved!  

Legacy

1/4/18

It is 4:30 in the morning.  I do a lot of my “deeper” thinking during the night.  It seems like I have better “clarity” at that time.  Possibly because there is less mental traffic to clog my circuitry.  Another possibility is that my judgement is not great at that time, which leads to ideas that “lose their luster” in the light of day,

In any case, I have been thinking about the above topic since writing the piece yesterday morning about Robin Williams.  I think most of us, or at least some of us, think about what our legacy will be from time to time.  That may lead to thinking further about what we would like it to be.  I spent a lot of time in my business career doing strategic planning.  One of the most important parts of this process was deciding “where you were trying to go” as an organization.  Later in my career I had a business that helped people with career planning which often started with the individual answering the question “what do I want to be when I grow up”.  In other words, developing an individual strategic plan.

That is all any of us can really do when it comes to our legacy.  Imagine someone describing our legacy at some point in the future and what we would like to hear them say.  Then we at least have the opportunity to do things that might lead to those comments after we are gone.  Because legacies can’t really be built.  They are described in hindsight.

When I look back at my career “pre-PD”, it seems to me that much of what I did in my business career was preparing me for what I have been trying to do as a PD advocate (my current job description).  If I had died at 59 instead of being diagnosed with PD, I can’t imagine my legacy being very memorable when it comes to my career.  Actually, I think my legacy would have been the wonderful boys that Linda and I raised.  I still believe that will be our most important legacy.

So where am I going with this?  I better get back to that or I will lose the thoughts that got me out of bed.  Regarding my “advocacy career”, I feel that I am doing work that is personally meaningful for the first time in my life.  That is a real gift!  I don’t spend a lot of time thinking about what I am going to do.  One thing leads to the next thing and so on.  It has been that way since I was diagnosed.  It has become more challenging to maintain my “forward momentum” the last couple years.  But each time I have “slowed down”, it seems that I eventually have been motivated to “re-enter the fray”.  I don’t really know if anything I have done or will do has any lasting value.  That is not and can’t be my motivation.  That will be for whoever is in charge of describing my legacy to decide.  I am just grateful to have had the opportunity to finally do something that seems important.

Robin Williams’ Legacy

1/3/18

Robin Williams will be remembered by the general public for his “unearthly” spontaneous comedic wit as well as superlative acting in movies that include Dead Poet’s Society and Good Will Hunting (I loved both of these, but would also include another personal favorite, the classic comedy movie RV). 

In the PD world, I believe his legacy has been “etched in stone” thanks to a letter written by his wife, Susan, to the Neurology journal.  I posted this link of my PD facebook page last week.  It has been viewed over 1000 times and has been shared 11 times.  For my FB page, this is an enormous response, which made me wonder: Why?

One of the reasons is Williams’ popularity and the tragic nature of his death.  There has been a great deal of speculation about his illness and what may have motivated his actions at the end.  Susan fills in the blanks in a thoughtful, informed letter she sent in hopes that, by doing so, awareness could be raised that will help others in the future.

So, the second reason is that, by sharing Robin’s experience in painful detail, she has done the PD and Lewy body dementia worlds a great sevice.  As an advocate with (at least) mild cognitive impairment, the distinction between PD and dementia with lewy bodies (DLB) is something I have been personally interested in for almost ten years.  It motivated me to write a book on this subject that included my personal experience.  It led to my relationship with the Lewy Body Dementia Association (LBDA) and participation in a webinar designed to build awareness about LBD/DLB in the Parkinson’s world.

The type of dementia experienced by most people with Parkinson’s (PwPs) falls into the LBD category.  This is something all PwPs who want to be active participants in the management of their disease need to know as 85% or more of PwPs will experience LBD/DLB during their lifetimes.

LBD is not the same thing as Alzheimer’s (AZ).  LBD is the second leading type of dementia after AZ.  It is a terminal condition.  LBD falls into a category of illness called “atypical parkinsonism”.  These illnesses have symptoms similar to PD, but the causes and treatment are different.  Some medications used for PD can be very harmful to people with atypical parkinsonism, therefore it is very important to get an accurate diagnosis.  This poses a problem as “parkinson’s plus syndromes” (as they are also known) are usually difficult to diagnose.  This is yet another reason why it is crucial to work with a movement disorder neurologist as opposed a general of different specialty neurologist.

Awareness around this subject is growing which is a very good thing.  For more information, visit the LBDA website.

A Difficult Subject

1/2/2019

Have you ever had difficulty communicating with a friend or loved one who was struggling with serious illness?  I know I have.  Should I try to act like nothing is different?  Should I tell them how well they seem to be doing to encourage them?  Should I invite them to talk about how they are really doing?

And what about the person who is struggling?  Should they try their best to appear “normal” as a way of trying to minimize concern and put people “at ease”?  How should they respond to questions about their well-being honestly, when they are not sure if the person really wants to know? Even though they would welcome the chance to be open with someone who really cared and wanted to know the truth.

As I continue trying to be transparent about difficult subjects like PD dementia, this strikes me as a significant concern for many in my position.  I would like to be able to put on my “Benzi hat” (my movement disorder doctor and PD palliative care research friend) and think about how he would address this issue.

I know he would do two things.  Use humor to “humanize” the subject and reduce any related fear.  Then he would address the topic “head-on” without mincing words.

However, I am not Benzi, so I guess I will try putting on my “Shaky Paws Grampa” hat and say what feels right to me.

What I want most from good friends and family is to be loved and to be encouraged to love them in return.  I am blessed beyond measure in this regard!  I couldn’t ask for more.  Not everyone is so fortunate.

I don’t want to feel isolated.  It is OK to tease me about memory problems.  I have always been a teaser, so that would help put me “at ease”.

I know that some people in my position might not feel the same.  They may want to keep their feelings and problems to themselves so as not to be a burden.  I truly understand that.  I just don’t agree with it.  After all, what is more important than for family and good friends to love and support each other?

After writing this, it was very interesting that what I want reminds me of my Uncle Howard, who clearly wanted the same thing.  That and the occasional dance with anyone who was willing.  I enjoyed reading this link from five years ago.  I was a pretty good writer.  Not so much today, but I keep trying.

Confessions of a Hobbit-wannabe

5/20/17

I used to really love reading.  I think I really got hooked when I first read The Lord of the Rings by J.R.R. Tolkien my senior year at Ohio State.  Not for a class, but for pleasure.  I don’t remember for sure who “turned me on” to that book, but it may have been someone I knew at a campus men’s wear store where I worked part-time, College Classics.  I tried working at McDonald’s and walked out after a few hours.  I guess it wasn’t meeting my career goals.
I probably read all three books five or six times over the next ten years.  I do believe that on at least one occasion, I started the first book (Fellowship of the Ring) immediately after finishing the last book (Return of the King).  I wasn’t just reading those books, when I picked them up I was in Middle Earth.  If by doing this, I was “escaping” the real world for a time, that’s OK with me.  That is one of the things a good book is for.  I have gradually become aware over the years that, whether it’s a personally engaging book or movie, when it’s over I feel like I was there.  Sometimes it takes me a while to recover afterward, because of the impact the book or movie has had on me.  These feelings have been amplified the last couple years, I am sure due to PD.
As I got older, I would read at night before going to sleep.  Another favorite reading time was on long airplane trips for business.  During my “free time” when I wasn’t working I was busy going to watch our son’s games, running (I jogged wherever we lived and on trips-I can remember jogging in Tokyo, Las Vegas, Los Angeles, Detroit, Buffalo and lot’s more), playing tennis or golf, or doing yardwork (with the help of my reluctant staff-our boys).
For example, I remember getting into James Clavell’s Noble House books about Hong Kong on several flights back and forth to that great city.  I was a big fan and ardent reader of Stephen King for many years until I read Pet Semetary (I don’t think I have fully recovered from that one to this day).  I can remember reading the Agony and the Ecstasy (if I remember correctly, it was about the life of Leonardo DaVinci).  One book that had a big impact on me in the early 1990’s was The World Is Flat.  It helped me to understand the “big picture” of how the world was changing at an accelerating pace and the challenges we would face as a result.
Fast forward to the more recent past when I became a fan of Tom Clancy and John Grisham, in particular.  I read very little in the few years after my PD diagnosis.  I tired easily and basically gave up on it.  As time has gone by, I have “re-engaged” in many ways including reading.  I started reading on a much more regular basis the last couple years.  Books that I found to be particularly memorable included A Man Called Ove which was made into a memorable movie (mostly shown at small “art” theaters). 
My son gave Linda and me their children’s used Kindle Fires for Christmas last year.  After getting over the initial intimidation factor I experience with any new technology, I found that a fabulous door had been opened for me.  I learned how to up or download (I can’t keep straight which is which) ebooks from the library to my Kindle Fire using Overdrive.com.  It still takes me a long time to navigate the system, locate a book that I would like to read and actually get it sent to my Kindle, but I have persevered.  I have really enjoyed Bill O’Reilly’s Killing books and found more good Grisham books.
I just started a fascinating (and controversial) book that was loaned to me by my younger son’s father-in-law (and good personal friend), 1421: The Year China Discovered America, that makes a convincing case that China became a major force in world exploration in the early 1400’s before the time of the famous European explorers.
If you have PD and have “given up on reading” like I did, you might want to give it another shot.  I am glad that I did.

C is for Constipation

12/7/18

I am “borrowing” Sherri Woodbridge’s creative approach to sharing PD information.  I don’t know what her “C” was, but this will be information that I hope will be useful based on my experience.  

This is not the most pleasant topic to write about.  However, after ten years with PD I know that it is one of the most important!  I learned early on that constipation was on the list of non-motor symptoms.  I don’t know what the stats show, but I have never met anyone who has had PD for a few years or more that doesn’t have this problem.

I am not a doctor, but I understand that PD constipation is caused by changes in the intestinal muscles that humans rely on for bowel movements.  I think I started to notice this problem at around 3-5 years and it has progressed gradually.

Some years ago, Dr. Michael Okun shared with me that there a few things that play a major role in the quality of PwPs daily lives.  Quality of sleep was one (no surprise).  I think hydration was another (it can affect many things, including headaches, blood pressure, dizziness, “regularity”, and more).  The third was the “C” word.

According to Dr. Janis Myasaki, PD palliative care pioneer who recently did an online PD palliative care “expert briefing” for the Parkinson Foundation, the goal for PwPs should be to have at least one bowel movement EVERY DAY.  This has been my own personal strategy for about the last five years at least.  If that didn’t happen, I would start feeling “lousy” (due to bloating, indigestion, headaches, and lack of energy).

Reverting to strategic planning terminology, the tactics I used to stay “regular” have evolved over time.  Different people use different tactics.  Whatever works is good, but be sure to discuss this with your movement disorder neurologist.  I started using Puritan Pride Herbal Laxative (I am not promoting this product, but it is what worked for me).  My doctor told me I didn’t need to worry about “overusing” this type of product.  Just stay hydrated, get exercise (beneficial on many levels), and use enough for it to work.  I would suggest experimenting with the number of capsules (taken at bedtime for results the following day).  If Plan A as described isn’t effective, I use glycerin suppositories and, as a last resort, Fleet enema bottles (available at most drug stores or in the pharmacy department of your grocery store, WalMart, or Target).

Abdominal bloating has become an ongoing problem for at least the last three years.  I have tried all kinds of “Gas X”-type products with no noticeable success.  I made an appointment with the gastroenterologist that does my colonoscopies to discuss this issue.  He prescribed Linzess to achieve regularity (supplemented if necessary by a minimal amount of herbal laxative) and to try to reduce the bloating.  I can report that, while this hasn’t helped with bloating, it has achieved dependable regularity.  I have found that the nature of the movements (we are now moving from mildly distasteful to totally disgusting information) has varied from solid to squishy to pellets to mostly water (this isn’t diarrhea so medication for that not required).  Also, be forewarned that movements can be “ballistic” occasionally so have a toilet brush available (helmet optional).  Might as well have a little fun with this. 

As I said, this has been my experience and what works for me.  Don’t be reluctant to discuss subjects like this with your doctor! 

A Parkinson's Metaphor

 3/21/16

I am often asked how I'm doing by friends and acquaintances who know I have Parkinson's.  While I am sure they care, I know that most of them don't really want an honest answer because it would make them uncomfortable.  This does not make them bad people, it is simply human nature.  So I say "I'm fine" or "no complaints".  When I do decide to try to share something real, more times than not I will get a response that attempts to minimize what I am telling them like "I have had that happen too - that's a normal part of getting old".  I guarantee that if you ask a PWP about their "pet peeves" this will be on the list.

Another factor is that it has become S.O.P. to at least try to project that things are under control, even if they're not.  At least part of the reason for this is that we (PWPs) understand that it is important to stay as positive as possible and to "not let PD own us".  Not only for our own sake but for the sake of our fellow PWPs, care partners, families and friends.

What would I say "behind closed doors" to doctors or other people we know who really are interested in an honest answer?  Because my dominant problem is mild cognitive impairment, my first reaction would be to try to explain how this has made life for me, and even more for my wife/care partner, more challenging. Obviously, I am willing to do this since I wrote a book on this subject (Window of Opportunity). However, my explanations are typically vague because, at this point, I can’t remember many of the details or examples.  

I am not sure what made me think of this, but I thought of an image that provides a good idea of the impact of this problem on my life.  It does not explain what is happening,but rather explains how I feel as a result of what is happening.  The image is that of“Wilson”, the volleyball with the blood-stain face that Tom Hanks becomes attached to in his movie Cast Away.  We can clearly see how distraught Tom becomes as “Wilson” is jarred loose from the raft and slowly floats away.

Projecting myself into “Wilson’s” predicament, I imagine the raft as “normal” and myself slowly drifting away.  “Normal” here is loosely defined because, like many with PD, “normal” is an abstract concept that changes over time until we no longer have a frame of reference for “true normal” pre-PD.  Regardless of what “normal” we are talking about, I am inexorably floating away from it.

So I have taken off my “game face” in order to try to describe, futile as it may be, what I and many other PWPs are going through.  I feel obligated to try.  The good news is that the PD world is now willing to address this subject and is doing so openly, a big change from the not-too-distant past.

A Good Day

12/8/16

It is early December.  We just got back from Arizona last week so that we could participate in our oldest grandson’s 13^th birthday party.  The party was for Carson, the subject of my first children’s book Carson And His Shaky Paws Grampa (he was seven when the book was written).  Where has the time gone?

Linda and I have been working on getting our Colorado home ready inside and out for Christmas.  We have lots of decorations, some of which we have had for many years from the time when our boys (now in their 40’s) were growing up.  I took care of the outside lights and Linda did most of the inside.  Last night we worked together on decorating the tree.  We take our time doing this so we can enjoy the memories associated with the ornaments.  Some of them the boys actually made when they were little, some are associated with family vacations, some feature our favorite sports teams, some are in memory of family members no longer with us, and many are connected to our grandchildren (we have six-3 of each ages 9-13).  Places of honor on the tree are reserved for themes that we value like faith, peace, love, family, and hope.

All this was happening in a context of memory “events” that had been increasing in frequency.   I have not been able to keep track of what is on our schedule each day or even what day it is many times.  I seem incapable of remembering names of people unless I know them very well and have frequent contact.  Complex problem solving has been an ongoing problem.  There are many examples, but I can’t remember what they are.  This is frustrating and, sometimes, very discouraging for me.  I can tell that Linda is concerned as well.  This is especially hard to deal with at this time of year when we want to enjoy “living in the moment”.

This sets the scene for what happened earlier yesterday.  I had ordered one of the new “Echo” products from Amazon.  We heard about it from friends and got to see and hear one in action during Carson’s birthday party (my older son, Kevin, had ordered one).  It was very unlike me to take this leap as I have avoiding getting involved with any of the latest technology gadgets (we still use the old style flip cellular phone).  In this case, I was captivated by the ability to access any music I wanted so quickly and easily.  To make a long story shorter, I was actually able to get it set up and operating (we got a 30-day Amazon Prime trial that gave us access to lots of music, movies, and much more that I will try to absorb some other time).  I did run into a problem.  In order to hear music, you have to say “Alexa, play ____________”.  It works beautifully, but I kept forgetting what her (Alexa) name was.  I have since come up with an association that helps me remember.

Another challenge was facing me.  We had been watching movies on our 55” Visio TV home theater system the previous night when the sound went out on the sound bar.  Linda and I had tried everything we could think of to fix it to no avail.  So I called Vizio customer service to see if they could help.  It took patience on the part of the rep and perseverance at my end, but he was able to talk me through the steps to reset the sound bar and IT WORKED!  At this point, I was feeling pretty proud of myself.

With a new sense of self-confidence, I drove to our local Ace Hardware to see if I could find a string of lights to replace a defective one that I had put over the garage door.  Not a big deal but I certainly got “sticker shock” from the cost of the LED products!  Anyway, I had to get the right length and pick the right intensity to match my other conventional lights.  I put it up when I got home and it was perfect.  In fact, when I looked at the whole set-up (including a lighted garland over the front door, two wreaths and a lighted garland on the front window, the new lights over the garage door, and our 12” blue spruce with a combination of white and colored lights, it looked really good!  In fact, I think it is the best I have ever done at this house.

That evening, when Linda and I finished decorating the tree, I built a fire in our (real wood burning) fireplace and we had a glass of wine.  After a while, things took a romantic turn right there by the fireplace with Alexa playing Enya tunes in the background.  It was a good day.

Parkinson’s and Inertia

5/29/18

Some days it is hard to get ourselves to “take that first step” literally and figuratively.  Physically, stiffness, freezing and cramping can make it difficult to initiate movement.  The mental side of things can create an even bigger obstacle.  The “dark side” of PD whispers in our ears, telling us that we are not really up to it and don’t have to get off the couch today.  It can wait until tomorrow.  Or the next day.

We returned from Arizona to Colorado in early April.  I had experienced a series of challenges starting last December that made activity difficult.  I had hernia surgery in early December that forced me to be inactive in order to heal properly.  Later that month, Linda and I both came down with the “flu-like symptoms”, including cough and congestion that seemed to plague almost everyone we knew.  It took six weeks and multiple trips to the doctor to get over that.  Unfortunately, I then developed foot problems which I documented in a previous blog article.  It was around the middle of April when we finally found a solution that has helped.  I was finally able to get up and moving (I was more than ready after four months of relative inactivity).  I was able to ramp up my activity and exercise but was still feeling the effects of my “layoff” when we got back to Colorado.

Since we returned, I have gradually become more energized.  I have been doing a lot of work in my two “garden areas”, including my “meditation garden” adjacent to our back patio.  I started slowly, but became motivated to add some new plants that will give it more of the “English garden” look I wanted.  I also made some changes in the front yard garden and spent time fixing the irrigation systems.  It was challenging (and sometimes frustrating) for me to come up with a plan and then go out and buy plants that would work.  I also bought plants for the back patio and a new fountain to “dress it up” for the summer.  The finishing touch was distributing eight bags of mulch.  It was a lot of work, but I feel very good about it and have been spending time listening to the fountain and reading with Linda by our meditation garden.

I attended our local support group meeting last week.  We were talking with our guest speaker, a dance therapy instructor in our area.  As we talked about the ongoing battle to overcome the urge that many of us experience to remain sedentary, the phrase “a body in motion tends to stay in motion” popped into my mind.  Someone remembered that this was part of Newton’s theory, which I googled when I got home.  Sir Isaac Newton proposed his First Law of Motion, the law of inertia, in 1687: “A body at rest tends to remain at rest. A body in motion tends to stay in motion.” Those of us with PD know this first hand.

The four months I spent recovering have given me a new appreciation for being active, though there are still days that I would rather not.  We all have to continue to find the courage and energy to take that first step.  More often than not, we will be glad we did.

Shaky Paws Grampa Update

I made a difficult decision during the summer of 2019 to discontinue my SPG website as I was scaling back on most of my advocacy activities.  As I approach my 12-year anniversary of my PD diagnosis, I am no longer able to do the things I have enjoyed so much over the years.   My PD focus and priorities these days still includes PD palliative care and Tremble Clefs, but I am spending most of my time "living in the moment" and enjoying my wife and family.

I have re-opened my blogspot site which contains my earlier articles.  The SPG website included all my articles, but I couldn't find a way to move the last half over to this site.  My books are still available on Amazon.

I appreciate the interest that has been shown for my website, blog, PD facebook page and advocacy activities since 2011!

Kirk Hall

January 2, 2020