With Magic, Anything Is Possible

Disclaimer:  I rarely perform magic any more because I am a person with Parkinson's disease and therefore, I have a  tremor that is inconsistent, so I can never really plan a show.  I am a collector and what people in the business of magic call a "methodologist." (I am going to get back to the term methodologist later, I promise.) In short, I collect methods. I am very aware, however, that the method is NOT the magic. I should also add that the method that I use to achieve the effect or "the magic" is almost always the simplest one. Intrigued?  Read on.  Okay, Okay, even if you are not intrigued, please read on.

Learn Magic
Please take a moment, read this short article by Ian Frisch and watch the videos. Then, learn the magic and share with your friends. Now more than ever (nod to Ryan), we all could use a little magic in our lives and these are two great effects.

I take a controversial stand on magic and that is "magic belongs to whoever can do the research, discover the secret and then, rehearse and perform it well." What follows the “and then” part of the above sentence, is what makes all the difference.


It Is Not The Method
As the phenomenal magician David Regal said (paraphrasing) in a recent interview “Having the sheet music does not make you a great musician and the same goes for secrets and magic…”


Please allow me to illustrate my point. Many years ago, I had a series of three library shows on the NJ shore. My brother Paul picked me up from the NJ Transit Train station and as soon as I got in his car, he said,

"Hey you better not do the that thing with the...    ...that masked magician guy exposed it on TV last night and..."

I replied: "I'm not worried about it..."

After the first show, my brother came up to me and said, "I see that you decided not to do that thing..."

I replied, but I did, I just did it this way..."

My point is that the secret is not the thing, "the magic" is.  To truly entertain people you must separate "the move" from the moment of magic. Watch the coin effect in the video from the the article that I have posted and you will see what I mean.


And Old Friend
Let me to tell you about an old friend Neal AKA Effervescent. I know Neal from my days of swing dancing in NYC.  He is one of the co -founders of yehoodi.com and as his nick name suggests, he has style. I taught Neal a few simple effects and he amazed people with them.  How did he amaze people with such simple effects? The answer is also simple, he performed them as though they were miracles and he seamed just as amazed by the effect as the people watching.

What if you are annoyed by magic, or God forbid, "hate magic?" Then, I would argue,  that it is even more important for you to learn these effects.  Please do this for me, I promise that you will not regret it.


Challenge/Offer
Perform one or both of these effects, video tape it (preferably with someone watching) post it on Facebook and let me know.  Then, I will teach you at least two additional effects via zoom! Remember the secret is not the magic!


A Word About Universal Design.  
 If for whatever reason, you cannot perform these two effects, contact me and I will come up with something that you can perform. Sound fair?


Magic Is Important: Bringing It All Home
Magic is important for so many reasons. First, when done well, it is entertaining and maybe even amazing. More importantly, it teaches us that what we thought was impossible is really not. Think about all the things we accomplished from home during this pandemic.  Many of these things we once thought were impossible.

If you could take coin and magically penetrate a solid wooden table, then what else could be possible? Is there more than one way to to accomplish things? Could we cure Parkinson's and other diseases?   Could patients, doctors, researchers and pharmaceutical companies become methodologists and search for a range of solutions? (I told you that I would get back to this!) For example, is freezing a degenerative disease in its tracks less of a miracle than a cure? What about repairing a gene so that someone at risk never gets the disease? 20 years ago, was it possible for patients to be real partners in medical research and/or write journal articles? If we do not label something as "impossible," is anything possible?

David Regal
David Regal is a writer, actor and magician. His book "Approaching Magic" is one of the most important books on the subject. His new book "Interpreting Magic" has received rave reviews
(reaches for wallet). While the effects in these books (there is much more to these books than effects) are not technically difficult, they are not really for beginners either. If you are a beginner, would I discourage you from purchasing these books? Of course not, after all, anything is possible!

David Regal on Penn and Teller Fool Us.


Thank you for reading!

Gocovri, Imbrija and the CoronavIrus

Gocorvi
So, it turns out that my limp and head shaking are caused by off period dyskinesias.
In short, in the time between when one dose of my carbidopa -levodopa is wearing off and when the next one kicks in, my head shakes (as if I was saying no) and my foot turns in causing me to limp. 

After speaking with my doctor, I decided to try Gocovri, a treatment for off-periods.

It is a time release version of amantadine. I took a half-dose for about a week and then a full dose for 5 days. Unfortunately, before the drug started to take affect, a side effect did. I had such severe dry eye that my eyes watered to the point that I could barely see.  One day, while driving to work, my eyes were watering so badly, that I had to turn around and come home!

Oh well, one miracle drug down the tubes!  Please do not let my experience keep you from trying it, just know the risks.

Inbrija
Now I am trying Inbrija.  Essentially, it is just Levodopa in an inhaler.  It is also for off periods.  I tried it the other day and my limp went away!  There is one very minor problem and that is, you must get used to inhaling a dry powder.  After 2 or 3 tries, I got the hang of it. I will know more about how well it works for me when the "shelter in place" period is over and I am out and about more often, but I am hopeful!

Coronavirus &  Parkinson's 
People ask me; how does the Coronavirus affect people with Parkinson's disease?  The answer is complicated. Since only 4% of people with Parkinson's disease are under 50, just like other people in this age range (60 and over), they will be more vulnerable. It appears as though the Coronavirus is more dangerous when you have a comorbidity, so people with PD should be more cautious.


Here are some suggestions for helping people with PD:

• Have your medication delivered and if absolutely necessary, have someone else pick it up for you.
•  Avoid beef and dairy just prior to and immediately after your medication.  (I would avoid it entirely, but that is a story for another time.)  Meat and dairy appear to make PD medication less effective. 
• Take your medications at the prescribed times!  
• Get the medication list and schedule for a loved one with PD.  I cannot stress enough how important this is.
• Offer to get things at the store for a neighbor, family member or friend with PD.  UNLESS, you are also over 60 and then, get whoever is doing your shopping to pick stuff up for them.  Do NOT be a hero! 
• Unfortunately, children can be asymptomatic carriers, so this is not a good time for visits from your nieces, nephews and grandchildren. 
• If someone you know has PD, set them up with a Zoom account (or something similar) so they can stay in touch with family and fiends.
• Call to say hello at their medication times so that you can remind them. If 4 people call daily, you will have this covered! Try this, "I am sorry to call at this time. Is this when you normally take your medication?"

Worst Case Scenario!
If you, a friend or family member gets the Coronavirus, you must talk to the doctors and nurses to ensure that you/they are given their medications at the prescribed times. Even in the best conditions, hospitals often ignore prescribed medication times. Hospitals are normally chaotic, I cannot imagine what our healthcare professionals are going through now!

Here are some additional tips:

• Send thank you notes with cookies or a pizza (several times) along with a note that reads: "Thanks for taking care of my Dad, (insert name).  As you may know, he has Parkinson's Disease.  His symptoms are...  He must take the following medications at these times...
• Get one of these now! Seriously, right now!
• Get help and support for yourself!

Here is a helpful video from the Parkinson's Foundation:

Caring for Caregivers
While doing some research recently, I found several studies which indicated that depression and anxiety are often worse for the caregiver than the patient.  This is especially true if the patient has untreatable symptoms.  Many of us, myself included, have had the experience of seeing a loved one suffer.  Now imagine, if you can, seeing that everyday and knowing it will only get worse. The effects are devastating.

Here are some tips:

• Ask, "What can I do to help?" This implies, "I am going to help you, I just need to know how." Do not ask, "Can I help?" This implies, ""Please, please, say no!" Thanks to Kate Lynch for this tip.
• Send food. If you know what they like, order, then call 2 hours in advance and say, "I have arranged for dinner to be sent at this time..."  This is better than, "Can I send you dinner?"
• Ask, "I was wondering how you were doing? I have heard it is often worse for the caregiver than the patient..." Let them know that you are aware of their suffering and that they do not need to be brave for you.
• Pick up the phone.
• Take them out to dinner (with drinks).
• Pay for a massage.

By the way, I am fine, but you may want to ask my wife!

Until next time...

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

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.

Parkinson's Revolution

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...

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...

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!

"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.