I Have Been Doing Some Writing & Not All Rainbows & T-Shirt Slogans

Introduction

I really have not been doing much blog posting since COVID. One reason is that 2 of the pieces that I have written for this blog were published elsewhere. In addition, I managed to co-author an article for the Journal of Parkinson' Disease with Soania Mathur who is a physician, patient and advocate. 

Dr. Mathur is a member of The Brian Grant Foundation Advisory Board, on the medical advisory board for Parkinson's Canada and serves on the editorial board of the Journal of Parkinson's Disease. Many patients, family members, care givers, doctors and researchers have read and were inspired by, her piece: "To My Newly Diagnosed Self." If you are reading this blog, you should read this piece as well. I am honored that Soania agreed to write a journal article with me.

Inspiration

I joined a few Parkinson's Disease support groups on Facebook during COVID.  Posts from these support groups inspired me to do some writing. I will paraphrase one of the quotes below:

"Parkinson's Disease is horrible. I am tired of being called a warrior and constantly being bombarded by catchy t-shirt slogans. Somebody please do something!"

The next day, I read several posts about how doctors offered patients medication and treatment options for some of their symptoms but not others. What I learned from reading these posts was some physicians were not asking patients: "What do you really want?"

Timing is everything. The next day, I received an invitation from the Journal of Parkinson's Disease to write an article entitled "What People With Parkinson's Disease Want." A few days later, I asked Dr. Mathur to co-author the piece and was honored when she agreed. 

The article explores the differences between symptoms that are most measured, treated, are the most bothersome and those that patients want treated. Please read it if you can.

My experience of working on this article has taught me a few things that I think doctors and PWP should say and ask.

Doctors:

"I have noticed your symptoms are...."

"Do you have any others?"

"Which of these symptoms would you want to explore treatment options for?"

 

PWP:

"The symptoms I have noticed are..."

"What are the treatment options for this symptom?"

"I have noticed that I can no longer sleep through the night (fill in any other symptom as this was just an example). Could this be caused by Parkinson's Disease?"

"__________ is really bothering me. What can be done to treat it?"

Am I disabled enough?

I was inspired to be a guest blogger for the Journal of Parkinson's Disease by the post below from an online support group that began:

"I know that I am not as impaired as other here but..."

This made me concerned that in our efforts to make people feel better, we may be minimizing their suffering and grief. I warn you that this piece is not a walk on the bright side. It is entitled: "Something to Cry About: Grief, Depression and Parkinson's Disease." If you have 5 minutes please read it.  

Conclusions and some thank you notes

Recently, I read that Michael J. Fox is losing his short term memory and ability to memorize lines. This made me sad because he is only 59, but he also said that he is happy that he can write:

"I'm down to this," Fox confessed. "My guitar playing is no good. My sketching is no good anymore, my dancing never was good, and acting is getting tougher to do. So it's down to writing. Luckily, I really enjoy it."

 

This seems like a good place to conclude because this is also why I write.  I never turn down an opportunity to contribute to a research article or to publish something in a blog. I write because I can and because I hope it might help others, but mostly, I write because it helps me.

 

Thank you

I often receive thoughtful texts, email messages and phone calls about my blog and other writing. I do not always respond for several reasons. Mostly due to fatigue and depression. You may or may not be able to relate, but sometimes, it seems like I have an insurmountable amount of work to do and I just shut down and do nothing. I also want to make it clear that sometimes, I do not respond because what you wrote means too much to me. It strikes a chord. Depending on the day, I just may not be able to go there. Sometimes, I just have to decided that it will be a "no crying day."

PLEASE FEEL FREE TO SHARE ANYTHING THAT I PUBLISH. 

I DO NOT NEED TO BE ANONYMOUS.

 

Happy Anniversary to Me? 5 years with PD.

5 Years Ago @ P.A.I.R. Training

On July 24, 2015 I was diagnosed with PD.  (I have probably had Young Onset Parkinson's Disease, YOPD, since my early thirties, but I will get to that.)  On Friday, July 24, 2015, I walked into Dr. Jori Fleischer's office at the NYU Movement Disorders Center and I was diagnosed with Parkinson's Disease. 

All the signs were there
I had been diagnosed with frozen shoulder 3 times, my toes were curling under involuntarily, my gait was off and my right arm was not swinging naturally when I walked. There were others signs as well, I had lost most of my sense of smell, lost weight and people were always saying "huh" whenever I spoke.

Looking back on it now, there were times, long ago,  when I came close to being diagnosed. I had a slight tremor that developed at around age 30.  At one of my regular physicals, my doctor said:

"Stand with you feet shoulder width a part, hold out your arms and spread your fingers."

To which I responded:

"No"

"We need to do something about that tremor," he said.

Then he asked: "Does anyone else in your family have that?"

I told him that my mother, my aunt and at least one cousin had it.

He asked:"How do they treat it?"

I replied: "We all pretend not to notice it."

I just did not want to be a person with a tremor. (Yes, I realize that this is the same flawed logic that applies to the statement, "If we stop testing, we will have less cases of COVID-19.)


To which he responded:

"The American Medical Association, does not recommend denial as a treatment option."

He also mentioned that it might be Parkinson's Disease, but since it did not run in my family, it was doubtful. I quickly forgot about that, until the memory of that day came flooding back to me on July 24, 2015. He gave me a script and I picked it up and immediately jumped in a cab to airport and boarded a flight to Berlin.  It was winter in Berlin and my hands and feet were freezing. This turned out to be  a side effect of the medication, so I ditched the pills.

The spring prior, I had lost 35lbs due to becoming a vegan and a new workout regimen.  All winter, I was freezing, but I wrote that off to the weight loss.  Now I know that People with Parkinson's Disease often have the inability to adjust to temperature changes or thermoregulatory disorder.

Then, came the repeated cases of frozen shoulder.  I wrote this off to weight lifting and swing dance aerials.  It was the 90's the Gap swing dance commercial hit the air waves and it seemed like everyone was swinging! I was mediocre dancer at best, but I was good at aerials. In any case, I ignored another warning sign.

Next, came the dental issues, which I never knew until 2 years ago were associated with  with Parkinson's disease. The implants nearly bankrupted me.

I was diagnosed and being treated for Cyclothymia, which I kept secret out of fear of being judged. Now I realize that my untreated mental illness damaged many interpersonal relationships. (Sincere apologies to those that were affected by this.) The above aside, I was hit with a case of depression so severe that there were days I did not get out of bed.

Then, at age 47, I found myself at a Neurologist, who after hearing my symptoms, simply blurted out:

"Well, these are all the classic signs of Parkinson's disease..."

She went on to say, that I needed to see a Movement Disorder Specialist to be certain. The appointment was less than 10 minutes and afterwards, I was on a hot New York City Street, all alone with no literature, no referral, no hotline number, no nothing.

Two sleepless weeks later, I met with a movement disorder specialist and had a diagnosis...

And then...
If you asked me 5 years ago what bothered me the most, I would say,:

"The shuffling gait and embarrassing tremor." 

Now, however, I am no longer embarrassed and I feel that my worst symptoms are shortness of breath, fatigue and thermoregulatory disorder. I used to love putting on flip-flops, shorts and tank top and heading out on a 90 degree summer day. While I still love the beach, summers are a bit of a struggle.

My Life With Parkinson's Disease
Since my diagnosis, I  have became A Patient Advocate In Research (PAIR) with the Parkinson's Foundation, appeared on three episodes of Parkinson TV, been the co-recipient of a small grant, contributed to one article, gave the patient perspective on another and recently, I have co-authored an article that will appear in the Journal of Parkinson's Disease.

I have a beautiful loving wife and a brilliant, quirky nine year-old son. I have a great job at Queens College, CUNY, and supportive family, friends and colleagues. In short, I live a good, full and happy life.

How is it living Parkinson's Disease?
I will not sugar coat this, it sucks. The fatigue makes it difficult to play soccer with my son and I could do without the depression, anxiety and frequent trips to the bathroom. I take 4 pills each morning, that are burning a hole in my stomach and three additional pills throughout the day. I can no longer write by hand and I struggle to type. During off periods, when my medication is not working, my head constantly shakes, as though I were saying no to everything and I walk with a limp.

I also realize that I am one of the lucky ones. I do not suffer from cognitive impairment and probably never will. I can still work and probably will not retire any time soon. Hopefully, I will live to be a very old man and dance with my wife at my son's wedding. He is only nine, so I will not  start pressuring him for grand children, yet!

Happy anniversary to me...

Thank you for reading.

Finding Silver Linings..

A Conversation With Kate...

Wednesday, June 10th, I said to my wife Kate:

"I am not doing any more writing in 2020..."

She just grinned and said:

"It's only June..."

I will get back to this conversation later...

How I’m Finding Silver Linings In the Pandemic: A Patient With Parkinson’s Disease Discovers Unexpected Bonuses Related To COVID-19. 

I recently wrote a short piece for "Brain and Life Magazine". I do not have much to add, so please check it out.

Lancet Neurology

I also added the patient perspective to an article published in Lancet Neurology entitled,

"Integrated and patient-centred management of Parkinson’s disease: a network model for reshaping chronic neurological care. I cannot find a link that will allow you to read the full text without signing up, so if you are interested, email me at jandrejack@gmail.com and I will send you the article as a PDF. In truth, my contribution to the piece was small, but I am honored to be in such

good company.

 Recently Taken At Green Wood Cemetery In Brooklyn

Coming Soon

An article that I co-authored for a journal was just accepted with changes. Changes have been made, article re-submitted and fingers crossed!

Back To My Conversation With Kate

So, on June 10th, I vowed to stop writing until 2021.  On Friday, June 14, I opened an email that I had been avoiding, due to the fact that it contained forms that needed to be filled out.  At the end of the email, there was an invitation of sorts, to contribute to another article.

I agreed...


Just a minor edit to thank Jori Fleisher for introducing me to many people in the PD community. For example, Jori was the person who recommended me to Brain and Life magazine and to many other opportunities over the last 5 years.


Thanks You For Reading...

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...