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.

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.

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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..

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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World Parkinson's Day, Parkinson's Disease Awareness Month & The Danish Consulate

Today, April 11th, is World Parkinson's Day & the month of April is Parkinson's Disease Awareness Month. With this in mind, the Parkinson's Foundation has requested that we share our KeyToPD with the community. These are essentially life hacks, I made the video below encouraging people to adapt.

Here are some additional life hacks:

• If you cannot button your cuffs or that annoying little button on your sleeve, roll up your sleeves. This is a completely acceptable fashion statement, especially since the chances are that you have worked hard all your life and probably have nothing to prove to anyone. (Thanks Jori E. Fleisher, MD, MSCE).
• What if you like the look of a button-down shirt, but do not want to deal with all of those buttons? Why not try a popover shirt? You can further disguise the shirt by wearing a tie or a sweater vest.
• I used to be able to hold my coffee & shoulder bag while simultaneously opening my office door. Sadly, those days are over. If you find yourself in the same situation, simply install (or have someone else do it) a cheap wall shelf from the dollar store or Home Depot. Put all your stuff on the shelf, unlock the door, hold it open with your hip and then grab all your stuff. If you have Parkinson's disease this is much easier than having to place all of your belongings on the floor prior to opening the door. With PD, bending over can be a challenge.

Here are some more facts that you may not be aware of from the Parkinson's Foundation:

Sadly, I am one of those 70 to 90%. Good thing that my wife reminds me when it is time to change the litter box! While this seems like a minor annoyance, food does not taste as well, which explains why so many PD patients lose weight!

The above image is a nice segue into:

 

I was proud to represent the Parkinson's Foundation at Danish Science in the City 2019. After an introduction from, Consul General in New York, Ambassador Anne Dorte Riggelsen, I was part of the patient panel conducted in an effort to explain to pharmaceutical companies, investors and researchers the experiences of patients with clinical trials.

One of the big takeaways from this day was that while there may be many gene therapies in the pipeline for the treatment and/or cure of PD, these may not be developed unless health insurance companies are willing to pay for them. While cures for orphan diseases may be developed, neurological conditions, such as PD, may affect far too many people (1 in a 100) & therefore, insurance companies may not pay for these treatments. Organizations like the Parkinson's foundation are working on this, so more news to follow.

How Am I Doing?

I have been asked repeatedly to make this blog more personal. Everyone has been so kind to me and not a day goes by without someone asking, "How are you doing?” The answer is okay. While I really have not progressed on the Parkinson's scale, it seems as though I have developed some dyskinesias. One of these makes my right foot turn in when I walk & this makes it much more difficult to pretend to walk, "normally." In addition, I have developed a neck tremor or dyskinesia which makes it look as though I am shaking my head no. So if you think that I am disagreeing with everything that you have said, it is probably just my tremor!

I am busy enjoying my life and I am about to leave for Paris with my wife to celebrate her 50th birthday and our 10th wedding anniversary. You are okay Kate Lynch! I love you more today than ever. Kate is busy with her blog, podcasts, website,and planning a yoga retreat. She is promoting yoga for everyone & contributing to a more inclusive yoga community.

Our son Ocean is eight years old and we are very proud of him. He is busy with school, soccer and learning all about outer space. Ocean, I am very proud to be your Daddy!

That is all for now. Thank you for reading and please, consider joining my blog.

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Multidisciplinary Care For People With Parkinson’s Disease: The New Kids On The Block!

Introduction

“Everybody does have a book in them, but in most cases that's where it should stay.”

 The above quote (which I love) aside, I may someday write a book entitled, "What I Wish I Knew About PD: I Stumbled So You Won't Fall." 

One chapter might be, "What the hell is Thermoregulatory Dysfuntion or Why I am I Always Freezing or About to Pass Out." Yes, Thermoregulatory Dysfuntion (the inability to adjust to hot or cold weather) is a thing with PD Patients that gets worse as the disease progresses. I am always shivering outside in the winter. This summer at Coney Island, my son and friends admitted it was hot, but nothing out of the ordinary for July. I on the other hand, had to seek out shade because I was on the verge of passing out!  So, In Jamaica, I went from the water to a lounge chair under an umbrella. Tanning is for the foolhardy anyway. This winter, I purchased two pair of lined pants, ski gloves, several sweaters, vests and hats. The result: I was almost comfortable!

Chapter 2 will be, "How to Make Your Dentist Rich." Last week, I slammed my fist into the arm of a dental chair in time with the chant, "FUCK-FUCK FUCK!" I then realized that my dentist was still in the room and muttered, "Sorry Charlie..." (We have known each other for over 25 years, so he cuts me some slack.) I had split another tooth in half and had to schedule dental surgery for my third implant since my PD diagnosis. Yes, there is a correlation between PD and dental issues. These are most likely caused by a lack of saliva and teeth grinding exacerbated by Dystonia.

There will be several chapters on medication and side effects such as hypersexuality (don't ask). At least one chapter on community building and getting involved as working with the Parkinson's Foundation has really helped me through some tough times.

I have always dreamed of spending Spring, Summer and Fall in Brooklyn and Winter in California walking on the beach with my Wife, Son and Grandchildren. (Hint-hint Ocean!) In this dream, I am never wearing dentures, sweating, shivering or using a cane!

With the above in mind, I jumped at the chance to contribute to the article below:

Multidisciplinary care for people with Parkinson’s disease: the new kids on the block!

I am proud to be one of the many authors:

Danique L. M. Radder, Nienke M. de Vries, Niels P. Riksen, Sarah J. Diamond, Ditza Gross, Daniel R. Gold, John Heesakkers, Emily Henderson, Adrianus L. A. Hommel, Herma H. Lennaerts, Jane Buschk, Ray E. Dorsey, John Andrejack and Bastiaan R. Bloem

Abstract (Simplified):

Parkinson's Disease is a progressive, complex disorder that can affect many areas of a patients health and treating this disease requires a team approach. When treating PD many people think of only movement disorders specialists and/or PD nurses. While this is true, a holistic approach also must include all of the patients health care professionals and the patient herself.

Some medical professionals who might be included in this team are gastroenterologist, pulmonologist, neuro-ophthalmologist, urologist, geriatrician/elderly care physician, palliative care specialist and dentists.

This Article Suggests A Patient Care Team Should Look Like This:

A Personal Note:

Reoccurring (three times) frozen shoulder was one of the my first early warning signs and I wish that my orthopedist knew more about PD. He is a great Doctor with an excellent bedside manner who is well respected in his field.  I continue to recommend him to friends and coworkers. He sent me to a neurologist, but was not treating me as a member of team of health care professionals. I only wish that I could get the time, sick days and co-payments that I spent on physical therapy back!

My dentist was the one who finally convinced me to seek out a second opinion and for that I am eternally grateful. Thank you Charlie! If you live in NYC call 212 473-2343 for an appointment.

My Dental Issues 

Since my diagnosis, I have had two dental implants and a third is scheduled! This is one of the hidden costs of PD. Why is this? Theories include a lack of saliva, which would normally breakdown sugar in a healthy patient and muscle tightness (Dystonia) which in turn causes teeth grinding.

From the Article
"In a study published in 2012,  researchers examined 90 people with PD and found
that they had an average of four additional missing teeth per person compared to their age-matched peers"

A Conclusion of Sorts :

I once read an article in my field (Student Affairs) which indicated that over 90% of published Student Affairs articles were never cited in other research studies! Of the 10% of the articles that were, 90% were cited by the author of the original article! I cannot think of what is worse, the fact that this articles was published or that I bothered to read it! At this risk of falling into this same trap, I will end this post by quoting myself,

"Finally,with the knowledge gained by working with multiple healthcare providers, patients can become better self-advocates and actively participate in the care delivered by the multidisciplinary
team. Healthcare professionals need to get together with their patients and discuss treatment options. So, have a cup of coffee together and save a seat at the table for us!"

Inbrija

So, what is this Inbrija everyone is taking about? I am so very glad that you asked! It is a medication (levodopa in an inhaler) for off periods. I will try to simplify this with a personal explanation. I take my medication (carbidopa/levodopa) at 6am, 12noon and 6pm and my off periods are roughly 11am to 1pm and 5pm to 7pm. Essentially, off periods are when the effects of one dose is wearing off and the next dose has not taken effect. At these times, my hands move slower, my voice fluctuates and my right leg drags as my right foot turns out.  Hopefully, Inbrija will help!

Why did the development of such a drug take so long? The answer to this question is long and complicated. Essentially, it is because there is no profit in it. Wow, that was neither long nor complicated! The reason for this is the patent is up on carbidopa/levodopa and it is available in generic form. Pharmaceutical companies spend millions of dollars developing and testing new drugs in exchange for a patent that gives them a period of exclusivity. (Side Note: Parkinson’s effects roughly 1 in every 100 people and therefore, carbidopa/levodopa is on the Word Heath Organizations’ list of essential medications.)

So how did this get developed? Simple, the Michael J Fox foundation paid for it to be developed! The Michael J Fox foundation provided Citiva now Acorda with two grants totaling $1.3 million

"...Inbrija exists only because of the efforts of the Michael J. Fox Foundation, which Fox founded in 2000. What's more, it's the first drug to be approved for treatment in which the Fox Foundation played a significant role in both the approach and the funding." (Allison Boiles, Bloomberg, January 23, 2019)

This man and his foundation are amazing! 

"In its 18 years, the foundation has raised -- and spent -- over $800 million. The scientists who have received Fox Foundation funding have made serious advances toward understanding what causes Parkinson's. Once a research backwater, Parkinson's research is now something scientists are eager to be involved in, thanks to the foundation. The Fox Foundation has become the fulcrum on which Parkinson's research pivots."  (Allison Boiles, Bloomberg, January 23, 2019)

Another post is coming soon. Thank you for reading!