Another Year Above Ground: John’s Extremely Dull Holiday Letter

 

Dear Friends and Family:

 

Introduction:

Well things have gone this year. Another year has almost passed by without me seeing my friends or family very much. I think that I contributed to a published article and was interviewed by an online magazine or two. Of course, all these mediocre accomplishments were related to the fact that I still have Parkinson’s disease. Medical science is moving forward and this year, two new drugs designed to slow or stop the progression of the disease failed and will never make it to market. Keeping my fingers crossed that 2022 will provide several opportunities for many new drugs to fail.

 

 

 

Career Achievements:

I have been working in the same position for about 3 years now without much hope of advancement or any real increase in pay. I am still in the “middle management” category of higher education. In August, I started working on campus 3 days a week. Since then, two students stopped by my office to complain about stuff, and I attended four in-person meetings and a retirement gathering. Due to my involvement in a clinical study, I may be able to achieve my ultimate career goal of working another 5 years and then retiring!

 

The Day-to-Day Stuff:

I managed to save a bunch of money on dry cleaning and our pre-owned Honda Civic is still running. I went to the dentist twice and I am considering having an orthodontist give me an estimate on getting my teeth straightened. 

 

With April @ Green-Wood Cemetery

 

Cindy's Holiday Card

 

Exciting News About Friends and Family:

I was happy to receive Cindy’s holiday card, which was only mildly offensive this year, so my family allowed me to hang it up. (This is an inside joke. Each and everyone of Cindy’s holiday cards have been displayed in our home. If you ever received a holiday card from Cindy, you would understand.) I went to Point Pleasant NJ three times to see my parents and siblings. I am grateful to report that none of us were hospitalized this year, other than my older brother’s "cardiac event". Word to the wise; eating nothing but hotdogs is not a diet recommended by the American Medical Association. I ran into Sara Jane Sloves when taking my son to Ample Hills and we spoke for about 5 minutes. Recently, while taking a walk in Green-Wood Cemetery, I bumped into April Palmieri. Neither of us were there to attend a burial. A friend of hers, whose name I will never remember, took some pictures and I posted  one here. I also managed to eat lunch with Sam Sloves twice and have photographic evidence of one of those occasions!

 

Lunch With Sam

 

 

Conclusion: 

I am still hanging in there, which beats the alternative. I wish all of you and your families an uneventful holiday season and a drama-free 2022!

A Clinical Study Story

 

A note from the blogger:

While I should have publish this post in July, a shorter version (and probably a better one), was published on the Parkinson's Foundation website. You may be thinking, "Hey, did he just tell me not to read this post?" The short answer is no. The longer answer is, if you already read the article on the Parkinsons Foundation website and you would like to take a deeper dive, please read the blog post below.

Prologue:

Kate’s family has a weekend place in Treadwell NY, near Oneonta. It is off a dirt road on 16 acres of land with a private pond for swimming. The entire family calls it the “Country House.” If you stay for more than 3 days, the world seems to slow down, and if you let it, a wonderful sense of calm will overtake you.

 

When in Treadwell, Ocean and I often throw rocks in the stream and make wishes. The word most often used to describe Ocean is “kind.” That shows in wishes he makes. He has, on a few occasions told other wishers to “think bigger.” in the Fall of 2019, we were at the stream and Ocean lobbed in a stone and said, “I hope that my cousins and I always come to the Country House.” I tossed in a stone and said, “May our family stay healthy and happy.” Ocean picked up 2 big handfuls of rocks, tossed them in the stream, and wished for, “A cure for Parkinson’s disease.”

 

Ocean In Treadwell Editing One Of His Horror Films

 

 

Introduction:

It’s been a while since I last published a post. I have been in a clinical study which has taken up the majority of what little free time that I have. I have also been working on a short video based on my experience with the working title: “This Is What Hope Looks Like.” I recorded a video each time I had a clinical study visit. My plan is to edit these short clips together and maybe add some videos of doctors and researchers talking about Parkinson’s disease and the importance of advocating for additional research and taking part in clinical studies.

 

Timeline:

• February 5, notified of selection for clinical trial
• February 11, first clinical trial study site visit
• May 6, I am finally randomized and received the pump with either the medication or a placebo
• June 4, after almost one month of wearing the pump, things change for the better
• June 28, most recent study site visit
• Week of July 26, last visit for the phase III double blind study and first site visit for the open label phase

 

The Waiting Is The Hardest Part…

The first thing that you will probably notice from the timeline above is that it took almost 4 months between my first site visit and receiving the medication or placebo. This is one of the many reasons for attrition in clinical studies. Try to imagine going to a clinical study site over 16 times prior to receiving the medication or placebo. I must admit that the pharmaceutical company made it very easy. They sent car service to pick me up and take me home on every clinical study visit. While it was certainly nice to be chauffeured around, I still spent roughly 32 hours of travel time prior to even getting the medication. This does not include the 1 to 5 hours I spent at the clinical study site each week.

 

What They Did At The Site:

At several visits they took blood samples and from what I can recall, they did an EKG at every visit. Each time I went to the site, they went through the UPDRS which is an instrument used to determine where I was on the Parkinson’s disease scale. At each and every visit, the site team administered the Suicidal Ideation Attributes Scale (SIDAS). (What does the D stand for?) This is a testing instrument, administered by a doctor or a researcher, in which the participant is asked in many different questions if they are planning to kill themselves or if they have ever tried to kill themselves. After I took it about 10 times, I started to think of smart-ass replies in my mind. Some of the things I thought to myself were: “Why does my life seem that bad to you?” “Are you trying to give me ideas?” and “Well, maybe if this treatment doesn’t work…” After I received the medication (or placebo) and the pump, they also collected the unused medication as well as the used cannulas and syringes, which I kept in a sharps container.

 

Once I Received The Pump, I Followed The Following Study Protocol

 

Daily:

• Change battery
• Fill new syringe with medication, or placebo from the vial
• Change syringe
• Take carbidopa/levodopa or placebo at the same times each day that I took my regular medication

 

Every Three Days:

Change cannula and tubing

 

How My Progress Was Measured:

• I kept a daily electronic diary with information on changing the infusion site for the cannula, the times that I took the medication or placebo, a record of on and off times, and if and/or when I took the emergency carbidopa/levodopa (I never did)
• A, PKG-Watch
• Study site observations
• UPDRS results
• Counting the unused medication
• Counting the used syringes and infusion kits
  

The pump is heavy and fairly large. At 7.5” x 4.5”, It is over twice the size of the pumps used by people with diabetes. The results, at least in my case, were definitely worth the effort.

 

Results:

I knew that I was definitely feeling better and that there was a good chance that I was receiving real medication and not the placebo. When I watched the video taken on May 6 (first day I started to use the pump) and compared it to the one that was taken on June 4, the changes were obvious. The first thing that I noticed was that my dyskinesias had all but vanished. In addition, my tremor was not as severe and friends and family who saw the videos commented that my voice seemed to be stronger.

 

Before I started using the pump, my medication was not working more than half of the time (8.5 hours daily). These times are referred to as, “off periods.” After I began using the pump, my off periods were down to 2 hours a day! Not only that, during my off periods, my symptoms were much less severe. Prior to using the pump, I was often dragging my right leg and now, during my off periods, I have a slight limp. In addition, I suffer from fatigue much less often.

Modeling My Pump

 

 

Predictions of Things To Come:

If other study participants achieved the same results that I did, this treatment will be a game changer. It could potentially change the way that Parkinson’s disease symptoms are treated. Depending on how long it takes to get the product market, we may see many people wearing pumps at the 2022 World Parkinson Congress in Barcelona.

 

Hopefully, if the treatment is successful, the pharmaceutical company will manufactured smaller pumps. The technology is already out there. It may be possible, for example, to adapt one of the already existing pumps used to treat diabetes. These pumps are much smaller and far easier to use. Over 10 million people worldwide suffer from Parkinson’s disease and in the United States alone, 60,000 people are diagnosed annually. This treatment, therefore, could potentially improve the lives of millions of people.

 

Closing Thoughts:

In late July/early August I will be in the open label phase of the clinical trial. This means that for the next two years, I will receive the medication, the pump and supplies for free! It also means, that my trips to the clinical study site will be limited to once a month.

 

I feel extremely lucky to be one of 130 people worldwide who were selected for this study. I am grateful to the doctors and researchers at the clinical study site and the pharmaceutical company. I am aware that it takes millions of dollars to bring a drug to a clinical trial and in many cases, the treatment fails and never reaches the marketplace. I am grateful to have a job at the City University of New York (CUNY). Working at CUNY allowed me to save up and use the many sick days that were necessary to participate in this study. I am grateful for the support provided by colleagues, friends and family members. Most of all, I am grateful for the love and support provided by my wife Kate and our son Ocean. 

Ocean's Elementary School Graduation

 

 

Some people have asked me, “If the treatment did not work, would you still be willing to take part in another clinical study?” The answer is yes. I would still do it in hopes of playing a very small part in testing a treatment that could help myself and others. Every time a treatment option fails, the Parkinson’s disease community takes one step closer to finding one that will work and ultimately, a cure. If you have the time and the desire to help yourself and others, I strongly recommend getting involved in a clinical study.

 

Epilogue, Fourth of July weekend 2021:

Ocean and I are back at the stream in Treadwell. Ocean tossed in a stone into the stream and said,

 

“I hope that many people will be able to get the Parkinson’s pump so that they can feel better too!”

 

 

 

Thanks for reading...

Pond At The Country House

Wild Flowers, Treadwell, NY

 

 

 

Good Omens and The Clinical Trial

A Crazy Dream 

The other night I woke up from a dream. It took me a few moments to recognize that I was awake because in the actual dream, I woke up with my wife on my left and a tiger snuggling with me on the right.  He followed me though the house (Kate's family’s country house in upstate NY). He was very affectionate, and we were not afraid. Our reaction was, "Hmmm, this is odd, I guess we have a tiger." 

 

 

 I decided to look up interpretations of tiger dreams. This is the one that seemed most relevant:  "Dreaming about a friendly tiger: If you dreamed about a tiger which acted friendly towards you or others, such dream might indicate some situation which puts an end to your fears." 

I am in a clinical trial and on May 6th, I get randomized. Maybe, subconsciously, I really think that this new treatment will help me. I am considering the dream to be a very good omen.

No Tiger King jokes please! I never watched it and strongly believe that wild animals should not be kept as pets.

The Clinical Trial   

Yes, I have been in the study for months and I am finally getting the treatment! This is probably one of the reasons that these studies have so much attrition. What you need to be in a clinical study is patience! In most cases, the process will be very long and require you to be very flexible with your schedule. It can be taxing spending 6 to 8 hours at a doctor’s office. You will need the support of family, friends, and coworkers as well as good sense of humor.  

This Thursday, April 29th, will be my 6th visit to the study site. They have taken samples (blood and urine) and they will do so again this week. I took the Suicidal Ideation test, and I will have to take it again soon. If you have never taken this before, it is a testing instrument with about 30 questions, which are all some version of, "Do you want to kill yourself?” Apparently, this screening instrument is used in many clinical studies. 

I have also been trained on how to use the pump which delivers the medication, and tested to see if I could do it correctly. I have been warned that I will be tested at least one additional time before receiving the medication. I have filled out multiple release forms and financial paperwork for reimbursement. To be honest, I cannot really recall all of the forms that I filled out and signed.

May 6 is the big day! I will either get the medication or the placebo. If I get the placebo, they will test the actual medication on me for 12 weeks after the study (open label phase). Either way, if the medication works for me, I will receive it along with the pump and all the necessary supplies for the next two years.

I am not thrilled about wearing a pump 24 hours a day (except for an hour or two to bathe and exercise) for the rest of my life, but anything is better than taking medication that does not work half the time. Some day in the future they may come up with a better treatment, or even a cure. I may not have to wear it forever. 

You can watch the videos of patients who have used the pump here. To be clear, these patients are using a very different delivery method from the one that I will receive. They have had a surgery, in which a port was placed directly into their small intestine. The biggest problem with this delivery method, as you can probably imagine, is the risk of infection. 

 I will be receiving the medication sub-dermally (under the skin). So, while the videos of the patients at the link above seem very promising, bordering on miraculous, different delivery methods have been known to provide very different results. The results from phase 2 of this study have been very promising, and I remain hopeful.

I want to encourage People with Parkinson’s Disease to get involved in clinical trials (if you can). We cannot just wish for a better treatment or a cure, we have to work for it!  Hope is a verb! 

 

Thanks for reading, 

 

John 

 

 

I Still Believe In A Process Called Hope.

Hope Is A Plan B Presented At Hostos Community College

A Big THANKS to Hostos Community College

I am grateful to Jason Libfeld, Student Leadership Coordinator, for inviting me to present my workshop "Hope Is A Plan B," at Hostos Community College, CUNY. I have worked in Higher Education for over 30 years and I can honestly say that Jason knows more about leadership than anyone else who I know. The students at Hostos were dedicated leaders who encouraged and inspired me.  

My presentation is based by the work of Dr C.R. Snyder who created the Hope Scale. You can take the Hope Scale yourself by clicking here. While there are several articles and books that feature the hope scale, I found the book, "The Psychology of Hope: You Can Get There From Here" by C.R. Snyder, to be one of the most accessible ways to learn about it. Used copies are available from Amazon.

My colleagues know the way I feel about "edutainment."  This is the term sometimes used for self tests and scales that are easy to administer and understand, but lack in research that validates them. Scores of the Hope Scale have correlated to optimism, self-efficacy and self-esteem. Some research indicates that higher scores on the Hope Scale are related to better outcomes in academics and sports!   

C.R. Snyder viewed hope as an active process. Simply put; hope = willpower + waypower (mental plans or roadmaps) used to achieve a goal. Snyder's work also provides

Feedback From Students

Here are two quotes from the wonderful students at Hostos Community College:

“I am legally blind. 10 years ago, I lost my vision and I thought everything was lost. I decided to have a plan. Today, you gave me what I need, a booster. Thank you, John, for this essential treasure and thank you for your story.”

Carlos Santiago

“Thank you so much for sharing with us John great workshop!!”

Isabel Neira

The Presentation

My current presentation focuses on academic performance in college and utilizes the Academic Subscale of the Domain Specific Hope Scale. (This workshop examines the correlation between hope and academic performance.) I am, however, willing to tailor this presentation to almost any audience.

 

                                                This Is What I Want The Participants In My Workshop To Remember

 

Booking This Presentation & Raising $ For Charity

It has been said, that within the Parkinson's community there is a, "conspiracy of hope." Patients, doctors, researchers and representatives from various foundations and pharmaceutical companies gather together at several events throughout the year and discuss plans for ways to improve our quality of life, treatments that will slow or stop progression of the disease and ultimately a cure!  How would you like the people on your campus or in your organization to form a conspiracy of hope?

 

My goal is to put a mini tour together in which I will spread the message of hope and raise money for the Parkinson's Foundation. This presentation can be done in person (after this pandemic) or online. I offer it for free to all CUNY schools. If you are interested in this presentation for your next training or event, the process is simple. First, you email me (jandrejack@gmail.com) and then, we decide on a fee that works for your budget. Next, you write a check for that amount to the Parkinson's Foundation! 

 

In short, I will not profit off of any of these presentations, the individuals in your organization learn about the process of hope and together, we raise funds to fight an incurable, degenerative disease! Please email me!

 

 jandrejack@gmail.com

 

Thanks for Reading

John

 

I Am In A Clinical Study!

 

Treadwell NY February 2021

Introduction

For the last six months, I have not been doing so well. My limp has gotten worse, I frequently suffer from fatigue and I am out of breath a good deal of the time. The times when my medication is not working (off periods) have increased from 20% of my day to about 40 to 50%.

What I Did

I was/am extremely frustrated with my current condition and decided that something needed to be done and done quickly.  Three months ago, my search for a clinical study began. At first, I looked into a study in which the medication would be delivered via an implant in my arm. I made it through an online and a telephone screening, but the sight coordinators never got back to me.

Next I moved to the ABBVI-951 clinical study. below is the best description of the study that I found:

ABBV-951 is an investigational (unapproved) drug containing Levodopa Phosphate/Carbidopa Phosphate (LDP/CDP) given subcutaneously (under the skin) for the treatment of Parkinson's Disease. The study has two treatment arms . In one arm, participants will be given ABBV-951 plus oral placebo (does not contain treatment drug). In the second arm, participants will be given placebo solution and LD/CD tablets. Adult participants with advanced PD will be enrolled. Approximately 130 participants will be enrolled in the study in approximately 80 sites across the world.

In one arm, participants will receive ABBV-951 solution as a continuous infusion under the skin plus oral placebo capsules for LD/CD. In the second arm, participants will receive placebo solution for ABBV-951 as a continuous infusion under the skin plus oral capsules containing LD/CD tablets. The treatment duration is 12 weeks.

 

Please allow me to translate. I am extremely lucky to be one of only 130 people world-wide to be selected for a clinical study in which the medication will be delivered via pump under my skin. It is a double blind study, so neither I nor the medical staff at the study site will know if I am receiving the drug or a placebo. If I am receiving the placebo, then the additional pills they give me will be my current medication. If I am receiving the actual drug, then the pills that they give me will be a placebo. If I am in the control group (people receiving a placebo), then when the 12 week study is over I will receive the actual medication. If the medication works for me, then I will get the pump and the medication itself for free for the next two years. The first two phases have shown a great deal of promise and people in the Parkinson's disease community have had positive things to say about the study results so far.

 

Two Visits So Far

At my first visit, they collected samples, ran tests and had me complete paperwork. I had my second visit to the study site Thursday, March 4. I finished the first day of training on the pump itself today. It is a little complicated, but I passed the quiz after the training, so I think I am ready to start using it. There will be an additional hour of training on the pump at my next visit on March 18 and hopefully, soon after that, I will start on the medication (or placebo). I am also using a watch that sends important health data to the study team. It is a good thing that I am a person who likes to use electronic gadgets because on March 18, I will also receive an electronic diary to keep track of my symptoms. Soon there will be even more chargers plugged in all over our apartment!

The pump is different from the one that I have shown many of you before. I asked if I could take photos of it today, but they said that I am not allowed to photograph any of the equipment or to share a description of the pump.

It Was Not Easy

What I have just conveyed to you in less than a page actually took about 10 weeks to accomplish. I searched the web for studies, filled out online forms, sent medical records, and emailed and phoned site coordinators. If this seems daunting, it is because it was. I firmly believe that hope is a process, it is a verb and it requires action on your part. I decided that I had to be very hopeful!

 

What I Have Learned So Far 

You should always be on time since there will probably be a team of people waiting to work with you. I am working with two doctors, a researcher, a site coordinator and another individual who appears to handle all the technology.

While all five people were not working with me at the same time, at least two of them were. I spent four hours in which I was the center of attention of multiple people at the study site. Even for an extrovert like me, this is an exhausting process. If you are going to take part in the clinical study, you should prepare yourself for this.

Not Putting All Of My Eggs Into One Basket 

While I remain hopeful that this new treatment will be extremely beneficial to me, I cannot just assume that things will get better. I am also exercising a lot more than I have in the last six months. For my birthday, my wife and my family all chipped in to buy me a spinning bike. I am also using the Peloton app and have taken one cycling class a day for the last 14 days! I already feel much better. I am not really certain whether or not my off times have decreased or whether I just feel better during the time that my medication is working. What I do know is that increasing my level of exercise can only help. There is a tremendous amount of research available which correlates the level of exercise with the progression of Parkinson's disease. In short, current research indicates that the more I exercise the slower my disease will progress.

The Peleton Hack!

  

Thank You

Throughout this entire process, my wife, son, extended family and a great deal of friends have been cheering me on. I greatly appreciate all of the support you have given.  I will do my best to keep all of you informed. I remain hopeful.

On a side note:

March 3, 2021, First Shot Done!

 Stay hopeful and thanks for reading!

John