Saturday, February 29, 2020

Hope Is A Plan B (V2) & I Want A New Drug!

Hope Is A Plan B





I had a great time at the CUNY Emerging Leaders Conference at Brooklyn College on Friday, February 28.  I presented my workshop on hope as an active process: "Hope Is A Plan B."



As always, the CUNY students in attendance were top notch! Many stayed long after the workshop was over, and I am pretty certain that at least 2 students missed lunch to stay and chat. I firmly believe that, a Universities most valuable asset is the time of their students. With that in mind, I would like to thank all the attendees for their time and attention.

If you scroll down, you will find information on my presentation along with with some useful links.

Taking Hope On The Road!
This is presentation is free for all CUNY Colleges. If any other colleges or universities are interested, my fee will be a donation to the Parkinson’s Foundation.


I Want A New Drug
I wonder how many post titles on my blog are lines from Huey Lewis and the News Songs?
,
 

If you have noticed me walking lately, you have probably seen that I have a more pronounced limp. A dyskinesia is causing my right foot to turn in making it more difficult to walk. I am going to try a new medication, Gocovri . In true drug dealer style, “the first month is free!” According to a representative of Adamas, the company will work with me to get a grant to the cover the co-pay after the first month. You may not want to look at the possible side effects

Drug warnings always remind me of Happy Fun Ball.

 


I am really hoping that this works. It would be nice to walk without consciously thinking about it. As an added bonus, it is supposed to reduce off periods!  A review will follow shortly.

Until next time...

Information on My Hope Presentation


1 = Definitely False   2 = Mostly False  3 = Mostly True  4 = Definitely True

_____ 1. I energetically pursue my goals.

_____ 2. I can think of many ways to get out of a jam.

_____ 3. My past experiences have prepared me well for my future.

_____ 4. There are lots of ways around any problem.

_____ 5. I have been pretty successful in life.

_____ 6. I can think of many ways to get the things in life that are most important to me.

_____ 7. I meet the goals that I set for myself.

_____ 8. Even when others get discouraged, I know that I can find a way to solve the problem.




Willpower =Odd

Waypower = Even


24 Average score

Below 24 = low hope

Above 24 = high hope


Links to other hope scales and further research:

Adult State Hope Scale
Trait Hope Scale
Handbook of Hope
Academic Domain Hope Scale







Monday, February 10, 2020

What do whataboutism, manufactured rage and internet memes all have in common? Plus, Parkinson's Revolution

What does this have to do with Parkinson's Disease?  Please read on....

What do whataboutism, memes and 
 manufactured rage all have in common?

The answer is simple, none of them are making the world a better place. We see someone attack one of our candidates and we fire back. Often this involves showing an article about another candidate or a former president who apparently has done something worse. This is classic whataboutism and does nothing to answer the accusation leveled at the original political candidate. Hillary, Obama and Biden are not in the White House and Trump is.  You cannot defend his behavior simply by comparing him to other politicians.  So often, when people fire back in an attempt to defend their candidate, they use internet memes. The problem is that much of the information conveyed in these memes is false. Finally, there is the manufactured rage spurred on by the media and both parties.

When it comes to whataboutism, Trump Supporters take the prize. One example of whataboutism is the 23 women (some say 25) who have accused Trump of sexual assault. It has been repeatedly proven that women do not lie about being a victim of sexual assault. With 90 to 92% of reported sexual assault cases proven to be true (but not always prosecuted or convicted), the odds of Trump sexually assaulting many of his accusers are overwhelming. Comparing this to the Monica Lewinsky case or the Chappaquiddick incident is just absurd.  While I will not defend Clinton or Kennedy, or their role in these scandals, they in no way rise to the level of having multiple women accuse you of rape, especially when Trump has incriminated himself with his own words. After these stories came out, I found it nauseating that people still voted for him. How do people defend, this? They use "whataboutism."

The quickest way to utilize whataboutism is an internet meme. The two problems with these type of responses is that first, they do not address the accusations and second, they are often false. When Republicans found themselves defending the decision to present the Presidential Medal of Freedom to a known racist many used fake pictures of Democatic Presidents giving out medals to horrible people. People do not fact check these memes and even worse, they will often leave them up after someone points out that they are false. In fairness to Rush, he has fallen victim to the fake memes as well.  While all the quotes attributed to Rush are not true, there is enough factual evidence to prove he is a racist. In addition to memes, people often defend their candidate of choice with links to news articles and videos. Unfortunately, many if not most of the articles posted, are not from reliable sources. We need to keep in mind that videos can be altered and that Facebook knowingly accepts money for advertisements with blatantly false information. The lesson: fact check.

Finally, there is manufactured rage.  Are people really so  outraged by by Pelosi tearing up the State of The Union Address? If so, why are many these same people not offended by Trump mocking a disabled reporter? Do you see what just happened? I used a classic example of whataboutism.  Regardless of what Trump has done, Pelosi's actions lack decorum. We all need to take a deep breath and get a reality check if we think that she is going to get arrested, charged with a crime or even censured.  The outrage over this incident has been manufactured by the media, the Republican party and Trump supporters.

Ultimately, whataboutism, internet memes and manufactured rage will do nothing to make the world a better place.  Instead, make some phone calls for your favorite candidate or donate to their campaign.  Alternatively, try giving to a charity every time you feel like posting a meme.

What does this have to do with me having Parkinson's disease?  The answers are simple, dopamine, energy and depression. Like many people with Parkinson's disease, I have about 25% of the dopamine as people in my age category. This lack of dopamine leads to fatigue and depression. Every morning when my alarm goes off, a conversation occurs in my head and it goes something like this, "...you can do it John...    ...just put your feet on the floor and stand up..." This discussion may last 30 seconds or five minutes but, so far, I have always managed to get out of bed.  I announced this Thursday to my wife that I have so little energy left, that I will not waste it arguing with or holding grudges against the people who I love. She is a very smart women and so she responded, "...what about all the energy you waste posting about Trump?"  All I could think was, "guilty as charged..." So while the "I do not care about politics" statement is often born of white privilege, I just no longer have the energy for whataboutism, memes and manufactured rage.  I am going to try to walk away from all of it. I invite you to join me.

In many major cities this Saturday, the Parkinson's Foundation hosted their first Parkinson's Revolution event.  This was essentially a Spinning (indoor cycling) fund raiser. They expected it to raise $50,000 and ended up making well over $100,000! Congratulations to Francesca Villa and everyone at the foundation!

With your help, I managed to raise $1325!  I would like to thank the donors. (Anonymous donors have been left of the list due to privacy issues.) Thanks goes to: Kate, Terry and Diane, Ginger, Sam, Cindy, Lauren, Caroline, Jennifer and Don, Erica, Adam, Manny, Tom and Ocean, Colin, Colleen and Grant, Jonathan, and Steven.

That's all for now...

Tuesday, January 21, 2020

Oh No, Not Ozzy! Plus, Spinning For A Cure!





Oh No!
Not Ozzy!
As you may have heard, Ozzy just announced today, January 21, 2020, that he was diagnosed with Parkinson's Disease. His current tour has been cancelled, but he plans to tour again soon, because he needs his fans. Good luck brother! You have Sharon by your side and all of your fans are hoping and praying for you. Everyone knows that Parkinson's Disease cannot hurt "The Prince of Darkness!"

 


The Shaky Cyclist Rides Again!

Please, let this serve as a thank you, since most of you have already gave!

As most of you already know, I am doing the indoor ride to raise $ for the Parkinson's Foundation!
We Did It! Together we raised over a $1000! I am truly touched by all of your generosity!

As of now, my team has 2 members. Want to find out more or ride with us? Click Here 

More to come...

Wednesday, December 18, 2019

When Parkinson's Disease Comes For The Holidays



How To Have A Happy Holiday Season With Parkinson's Disease
The holidays can be stressful. Single and/or childless people will often be asked, "when am I getting grandchildren?" You may be forced to sit next to a Trump supporter (hopefully not). Some of you will be subject to a, “surprise guest” you would have liked to avoid and vegans will be forced to defend their lifestyle throughout several meals!
During the holidays, we sometimes see people that we have not seen for some for quite some time. For my wife Kate, I will own the statement by typing, "during the holidays, I will see people that I have not seen for quite some time.” Unfortunately, you may find out at a holiday gathering that a friend or family member has been diagnosed with Parkinson's Disease. If you are the person with Parkinson's disease, you may be seeing someone for the first time since you were diagnosed. Below you will find some tips on how to deal with these interactions.
Luckily, I have a pretty good sense of humor about my condition, but not everyone does. In addition, all of my family and friends are pretty understanding and therefore, this guide is not really for them or myself. I put together this guide in hopes that some people may find it helpful. Hopefully, you will not find this to be too annoying, but I make no promises (and to be honest, I really do not care).
For friends and loved ones:
  • Take your cues from the person with Parkinson's Disease. If they raise it, then discuss and if not, consider letting it go.
  • Discussions about the latest possible cures and treatments of Parkinson's Disease should be one-on-one conversations. 
  • Try to avoid the phrase, "I know how you feel…" In addition, keep in mind that you probably will not make the person feel better by telling them about someone who is worse off than they are. 
  • Parkinson's Disease and Alzheimer’s are 2 completely different conditions. Try not to confuse the two.
  • Anxiety, depression and fatigue are actually symptoms of Parkinson's Disease. While getting diagnosed with PD may be depressing and cause anxiety, these symptoms are generally present before the person is diagnosed.
  • Help the person avoid anxiety by telling them about possible stressful situations in advance. For example, if you are inviting that cousin that no one speaks to anymore, make sure they know about it before you seat them next to the person with Parkinson's Disease! Come to think of it, that is probably good advice for just about everyone!
  • Keep in mind that a person's condition can change from day-to-day or even from hour-to-hour. People with Parkinson's Disease often have difficulty during off periods (the time between doses of medication). 
  • Fatigue is a real thing. During a holiday gathering, if a person with Parkinson's Disease opts out of an activity, just let it go. Do not stop the activity or ask them why they do not want to participate.
  • Never use Parkinson's Disease to fill a lull in the conversation, especially at dinner. Think about it, if you were a person with Parkinson's disease, would you want everyone looking at you while you try to eat? As a vegan, I am used to this. Vegans endure endless questions about what they will or will not eat and why at the dinner table.
  • Do not correct children who stare or ask awkward questions. This may result in the child avoiding the person with Parkinson's Disease. We know that they are kids, we understand.
  • Related to the above piece of advice, do not call everyone who is attending the gathering and warn them that a person with Parkinson's Disease may be attending. This will probably only cause people to avoid them.
  • Try not to say, "you look like you're getting better…" As of yet, there is no cure, so the person is not getting better. If you feel inclined to say anything, be specific like, "I see that you're not shaking as much, how are you feeling?"  Again, these should be one-on-one conversations.
  • Try to avoid gifts related to Parkinson's Disease unless the person specifically asks for them. If you must, give these gifts privately. A set of weighted silverware can be a lovely gift, but not if the person is not expecting it and especially not if they are going to open the gift front of a lot of people. My brother gave me a set a few years back and they are great.  Keep in mind, that these soup spoons are only good in a larger circumference bowls.  Used in a smaller bowl, they will flip out and splatter everyone with soup!
  • Please do not tell the person with Parkinson's Disease about "Rocksteady Boxing", we know about it and receive endless phone calls and email messages whenever it is on TV, so give it a break.
  • People with Parkinson's disease, often use the mantra, "do not trade today for tomorrow." We live in the moment. Will you join us?
  • If you happen to make one of the above mistakes, simply say, "sorry, I am just trying to show that I care…" 
  • Remember, we are all just doing the best we can and that includes you.
If you are the person that has Parkinson's Disease:
  • Try to get plenty of rest.
  • Use your cell phone, Fitbit or smartwatch to set alarms to remind yourself to take your medication.
  • Try and remember to exercise.
  • Take advantage of the "early boarding for those who need extra time…" announcements when at the airport. Think about it, this will mean you will not hold the rest of the plane during boarding. In short, do not just do it for yourself, do it for the other passengers. If the person at the front gate questions you, then just whisper, "I have Parkinson's Disease," (or write it on a note card in advance) trust me, no more explanation will be necessary.
  • Stay hydrated, but keep in mind how long it will be before you can use the bathroom next. If you have bladder issues caused by Parkinson's Disease, you may not wish to stop every 15 minutes on a trip.
  • Give love ones permission to do something without you. Tell someone in advance so that they can support you with this. Try getting involved a little, but know your limits. For example, you may agree to visit your Aunt, but avoid the annual family caroling trip!
  • Take a deep breath and be patient with yourself and others. People mean well, so you may have to endure the story about Rocksteady boxing for the hundredth time!
  • Remember, we are all just doing the best that we can and that includes you.
On a side note, sometimes people think that people with Parkinson's Disease can do anything, even things that they could not do prior to their diagnosis. I have been invited to be part of a choir (clearly, they never heard me sing). They also have dancing, art and other activities for Parkinson's Disease. For many of us, however, it is like that old joke, "Dr., after this operation, will I be able to play the piano…" On Rocksteady Boxing, I tried it and it was a great exercise class, even for people without Parkinson's Disease. I stopped doing it, however, because while we may romanticize boxing, in the end, it is just a lot of sweaty people in a gym without air conditioning.
Happy Holidays!

Saturday, November 9, 2019

"I Don’t Want to Belong to Any Club That Will Accept Me As A Member" Groucho Marx




In reference to the Friars Club, Groucho Marks once wrote, "I don’t want to belong to any club that will accept me as a member." I have always related to this quote as I have never been a joiner.

Four years ago, I was handed a membership card to what I was told was an exclusive organization. I said, "No thanks, I never applied..." I was told, however, that I was one of 100 people who were, "selected." The membership chair told me that either "fate, genetics or environmental factors had nominated me."

The chair named many famous people such as Michael J Fox and Muhammad Ali and told me they were members. I was sympathetic but unimpressed.  Since then, new members such as Jesse Jackson and Linda Ronstadt have joined.  I should mention that none of the above people have invited me to any of the club's events.  If you have and extra $4000 laying around you could go to gala or maybe even the World Parkinson's Summit. Unfortunately, all of my expendable income goes to dental bills. (Dental complications are common among our members.)

I have asked to be "let out," but apparently our club is like an organized crime family, you are in for life.  Membership fees are steep.  There are co-pays, deductibles, medication, dental bills and many other forms of mandatory charges.

There are also some good committees such as the Michael J. Fox Foundation and the 
Parkinson's Foundation, which I joined. The task of these committees is to limit membership while improving the daily lives of those of us already in the organization.

Last year, we inducted a new member, Judas Priest Guitarist, Glenn Tipton.

I can not express in words how angry I am. This organization is just NOT exclusive enough.  In fact, two people who I used to go swing dancing with in the 90s were inducted! I certainly did not want them to join!

So today, I scream at the universe, god, the medical community and pharmaceutical companies, "Close The Damn Books!" "No New Members!"

Glenn on behalf of all of us here at the club, "It is with great sadness that we reluctantly accept you as a member."  If anyone has any way of contacting Glenn, please inform him that I am happy to work toward the promotion of his next benefit concert.

Sunday, September 1, 2019

Parkinson's Foundation Volunteer Leadership Summit



Parkinson's Foundation Volunteer Leadership Summit

 View from my window

I have spent a great deal of this summer in upstate New York watching the grass grow, taking naps, eating big meals and generally spending time with my wife Kate and son Ocean.While there were far too many car trips, It has been wonderful!

I also attended the Parkinson's Foundation Volunteer Leadership Summit on July 24th and 25th in Hollywood Florida. I flew in on the 23rd, because flying twice in two days would be exhausting for me if I did not have PD and with PD, it is nearly impossible.  Fatigue is one of the symptoms of PD that most effects me. 

It was a wonderful resort and offered to charge me the group rate for the night of the 23rd.  Personally, I did not think that $250.00 was such a great rate for Florida in July and therefore, I spent the first night in a more affordable hotel, just down the road.  The reviews on Expedia described the experience as as, "like staying in an IKEA Catalogue..." The description was accurate, but the room was clean, quiet and across the street from the ocean.  Luckily the resort let me check in at 10am on the 24th and I had time for a quick swim in the pool and the ocean before the summit began.

People with PD have a great sense of humor (look at the drink special sign).


During the Summit, I learned about the new advances in research and a great deal about fundraising. Personally, I would have liked to hear more about how patients can assist with the development of new research, but foundations survive on fundraising so that must be the focus.

Some Helpful Fundraising Tips I Learned:
Never tell people that they are, "making a difference."
Why? It is trite and meaningless.  Think about it, we see signs everywhere informing us that we are making a difference when we reuse our towel at a hotel, recycle, return our shopping cart etc. Helping to cure Parkinson's Disease should not be described in the same way that you would thank people for not using a lid and straw when the purchase a beverage!

Personal stories should be less than 600 words and uplifting.
Of course, you want people to understand that they are helping to further an important cause. Just do it without literally boring them to tears.

Try to avoid asking and/or allowing major donors to speak at events.
Why? Well, mostly because it is boring.  Think about it, when have you attended an event and thought, "I had so much fun. I only wish there would have been more speeches..."? Instead, ask the donor to help present an award, cut a ribbon or fire the starting pistol. Give important donors something to do NOT something to say.

Get a good sound system!
Nothing you say matters if people cannot hear you!

Ask people for help not money!
Self-explanatory. Think about it.

Remember, people are not there for the food, drinks or the music.
The food and drinks could be great or terrible, but the important thing is to remind each individual of her or his personal connection to the cause. If you do this, the event is successful regardless of almost everything else.

.
Me & James Beck, Ph.D., Senior Vice President, Chief Scientific Officer


Conclusion
It was nice to see some other Parkys and I learned a great deal. My Next trip with the Foundation is to London in October. I will keep you informed.

Until next time..






Friday, August 16, 2019

I Still Believe In A Process Called Hope!





Introduction
In one of my earliest posts, I wrote about how on the weekend of my diagnosis, I wandered around the streets of New York City muttering to myself, "I need a plan… I need a plan… I need a plan..." I then remembered something my father said in talking about something horrible that had happened in his life. I asked him, "What did you do?" He responded: "What do you think I did? I had a wife and children to support. I got up the next day and I went to work." At that point, I felt that I did not need a plan. I believed strongly that all I needed to do was to get up on Monday and go to work.

I realize now that I was wrong. I did need a plan and I was forming one. Although I was unaware of it at the time, "getting up on Monday and going to work", was a step in a plan (actually a Plan B) toward a goal. The goal was happiness and I would reach it through a process called hope.

Brené Brown
I recently read Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead by Brené Brown. In this book, she illustrates that hope is often a Plan B.
In short, your life is going along well when something happens, such as an illness or financial crisis and you realize that you need a Plan B. She then referenced The Psychology of Hope: You Can Get Here From There by C.R. Snyder. Over the course of three evenings, I devoured this book.

C.R. Snyder

Snyder's research indicates that hope is not the same as wishing or optimism, but an actual process in which hope = mental willpower + waypower used to achieve goals. Hope is not optimism but there are correlations in that high hope people tend to be optimistic.

The difference is that an optimist often looks for external variables to explain away failures, while someone who is high on the hope scale links her actions to her success. High hope people often recognize that the plan used in attempt to achieve a goal was ill-conceived or poorly executed. Either way, they try again!

Key Points: 
  • Willpower is a reservoir of determination and commitment
  • Waypower is composed of mental plans or roadmaps, which provide a route to your goals
  • Waypower often provides alternate paths to goals or a Plan B
  • Hopeful people are often the ones who have overcome previous difficulties 


Back To Me
In my early 30s, I finally came to grips with fact that I was not a happy person. I also decided that I did not have to be this way and made achieving and maintaining happiness my goal. I soon realized that therapy and medication alone would not get me there. I decided, therefore, to take a behavioral approach. As a social researcher, I decided to observe happy people and then to do what they did. Yes, I actually did this! What I learned was truly enlightening and very simple. I found that happy people danced!

The year was 1998 and for some reason, it seemed like everyone I knew was swing dancing. I then saw the Gap commercial for khakis (see below) and it changed my life. I took swing dancing lessons three nights a week and even learned some fancy aerials. I never became a good dancer, in fact, I would say that I was mediocre. I did, however, make a lot of new friends who I am still close with today. These friends changed my life and I was happy.



After being diagnosed, I needed a Plan B. I knew that dancing, being physically fit and even becoming Vice President of Student Affairs would not lead to happiness. In an unconscious and haphazard manner, I put together this plan that included:
  • Seeing my doctor on a regular basis 
  • Taking my medication
  • Exercising
  • Clinging tight to family and friends
  • Asking for help when I needed it (Thanks to Kate Lynch for this advice)
  • Becoming involved with the Parkinson's Foundation (Thanks to Jori Fleisher)
How did it work out? Pretty well. My hope score is average (24), but overall, I would say that I am fairly happy. In the past four years, I (*we) have:
  • Participated on two patient panels
  • Raised $5000 for a Parkinson's Disease charity 
  • Was a guest on Parkisnon's TV 
  • Contributed to a published article
  • Attended two trainings with the Parkinson's Foundation
  • Was the co-recipient of a grant
  • Participated in a clinical trial
  • Donated my DNA
  • Took part in multiple research studies  
*I almost never accomplish anything without a great deal of help from family, friends and colleagues. The above accomplishments were the result of group effort.
I do not smile that often, but every once in a while, someone captures a moment.
Here I am with Ocean.

What Does This All Mean?

I think that the hope scale has tremendous potential for studying people with Parkinson's Disease. This instrument could be used to see how a lack of dopamine in Parkinson's patients affects willpower. I also wonder if the "fuzzy thinking" found in many Parkinson's patients affects waypower? I hope that doctors, nurses and therapists start using this instrument in treating people with Parkinson's disease.
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Hey You! 
Why not try the Hope Scale. yourself? Answer each question honestly with a corresponding number, add up your scores and and see how you did in both the willpower and waypower categories.


Hope Scale

1 = Definitely False   2 = Mostly False  3 = Mostly True  4 = Definitely True

_____ 1. I energetically pursue my goals.

_____ 2. I can think of many ways to get out of a jam.

_____ 3. My past experiences have prepared me well for my future.

_____ 4. There are lots of ways around any problem.

_____ 5. I have been pretty successful in life.

_____ 6. I can think of many ways to get the things in life that are most important to me.

_____ 7. I meet the goals that I set for myself.

_____ 8. Even when others get discouraged, I know that I can find a way to solve the problem.


Willpower =Odd

Waypower = Even

Links to other hope scales and further research:

Adult State Hope Scale
Trait Hope Scale
Handbook of Hope
Academic Domain Hope Scale



24 Average score

Below 24 = low hope

Above 24 = high hope
Conclusion
I still believe in a process called hope!   
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