Monday, February 3, 2020

Recommended PD Information & News Websites



Tremble Clefs Grant


 
I remember receiving an email from Parkinson’s Foundation (PF) regarding a program they were offering to award community grants up to $25,000 to organizations that had direct impact on the PD community.  I immediately thought about how much we could use this money for our TC group. I also knew this would interest the CA groups in San Diego and Orange County with which we have a “working relationship”.

I contacted the two CA groups and learned that they were already working on proposals, so I forwarded the information to Jim and Sun Joo and asked if we had someone in our group with grant writing experience.  They were keen on the possibility of a grant, but said we didn’t have anyone with experience in this area. Jim asked if I would be willing to do it. Though I had never written one, I had some experience with them from my consulting days.  I told Jim I would give it a try.
I read through the application and started to work on it.  I remember debating about how much to ask for (anything up to $25,000).  As I reviewed the guidelines that talked about what they were looking for, I realized that our chances of getting approved would be much higher if we could come up with a plan that involved incremental benefit to the PD community in the Phoenix area (beyond what we were currently doing).  At the same time, I thought it was important for them to know that we are completely self-funded and that a lot of work (by our group members) goes into making ends meet on a yearly basis. All this without the support or encouragement of a regional support organization, which in our case is Parkinson Network of Arizona (PNA).  Due to the nature of this relationship, we had recently applied for and received 501c3 non-profit status. This turned out to be a good thing as it was one of the application requirements.
I thought it might be a good idea to estimate the potential demand for PD services such as TC by looking at PwPs (people with PD) as a % of the national population and applying that % to the population of Maricopa County. That showed that, even with the growth of our existing groups, there were MANY potential new members.  I also cited the growth we have been experiencing year over year in our existing Sun City group and that our resources were “stretched to the limit”.
After meeting with Sun Joo and Jim, we decided to propose a plan to add a second Sun City group.  I also remembered Sun Joo talking about a group that wanted to “come on board” in the Chandler area.  So the combination of this proposal for two new groups in the context of what was already being accomplished faced with a variety of challenges became the focus of the application for a $25,000 grant.
Another factor that I was hoping would help was the already-existing significant working relationship I had with PF and previously with PDF (they had merged the previous year).  I really don’t think this affected the outcome, but they did “cut me some slack” after the proposal had been submitted by asking for additional information and clarification.
In the end, I was able to respond to these requests as a result of the hard work and cooperation of members of our group.  I think it was in April that I received word that our proposal had been approved for $20,000. They explained that they were unable to fund the full request due to the volume of worth applications they received. While there was no guarantee of ongoing support, it was clear that they like what we are doing and implied that the support could be ongoing assuming we live up to our end of the agreement (do what we said we are going to do).  The first $10,000 check has been received. The next step will be to provide a progress report in October.
Another important part of the context for this proposal was a detailed description of the benefit of participating in TC to our members including the inspiration, community, support, strengthening of our voices, multi-faceted therapy provided by Sun Joo and, most of all, the joy that singing brings to our lives.  With that in mind, I shared with PF a vision of TC becoming a national program and my opinion that they are uniquely capable of helping make this happen!
So far, so good…………..


 

More Time




More Time

We have all known friends or family who died with little or no warning.  Whether it is a heart attack, a car accident, or something else unforeseen, we feel badly for the person and his or her family.  Of course, there is the pain and loss associated with the event. Beyond that, we wish for their sake that it had been different.  We wish they would have had more time.  More time to spend with people they loved and who loved them.  More time to finish things that were left undone. More time to spend doing the things they loved most.  More time to say goodbye.
And yet, if we were given the opportunity to know in advance when we are going to die, most of us would probably say no.  Why ruin the time we have left because we know that the “clock is ticking”. It is something we would rather not think about because we fear death.  That is human nature.
While living with PD is no picnic, we have traditionally been told that it will not kill us.  We have been told that we will die “with” PD, not “from” it. And yet, PD is the 14th leading cause of death in the U.S.  And up to 75% or more of PwPs will develop dementia, which is terminal, during the course of their disease. And we know that aspiration caused by  PD swallowing problems can be fatal.
The following is from the Michael J. Fox Foundation website:
Will I die from Parkinson's disease?
Most doctors say that Parkinson's disease itself is not fatal. You die with Parkinson's disease, not from it. However, as symptoms worsen they can cause incidents that result in death. For example, in advanced cases, difficulty swallowing can cause Parkinson's patients to aspirate food into the lungs, leading to pneumonia or other pulmonary conditions. Loss of balance can cause falls that result in serious injuries or death. The seriousness of these incidents depends greatly on the patient's age, overall health and disease stage.
I don’t think this information is designed to be purposely disingenuous (what a great word!), but it smacks of “word-mincing”.  By the way, similar verbiage is found on all the national PD websites
Please don’t book a one-way ticket on a “lemming express” (small arctic rodents that stampede, following each other over the edge of a cliff) after reading this.  OK, I’ll say it. We are all going to die! Big deal, right? Everybody knows that.
OK, everybody take a deep breath.  Then review my opening comments about wishing for more time.  You could still get hit by a truck tomorrow or die from an unrelated cause.  Otherwise, PD will get you eventually.  If you choose to accept the idea that PD is an “end-game” proposition, you have given yourself the gift of “more time”.  How much more is an estimate depending on your symptoms and how advanced they are, but you get more time regardless.
How will you use that time?  I came to the conclusion I outlined here a few years ago and this is what my care partner and I have done (I am 69 and was diagnosed ten years ago):
Linda and I have become “members” of the PD Palliative Care (PC) Clinic at University of Colorado Hospital.  The PC team (PC doctor, nurse, social worker, and chaplain) has helped us make end-stage choices and plans based on our preferences designed to minimize chaos-related stress when the time comes.  We both receive customized care, counseling, or other service based on our needs.

We are focused on quality of life and “living in the moment”, spending time doing things that matter to us (including PD advocacy) with each other, family and friends.
We have a strong sense of peace and acceptance about the future.
We are enjoying life and each other.
I couldn’t ask for anything more.


Sunday, January 26, 2020

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!  


Thursday, January 2, 2020

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.