PD and Humor

I have found pwp to often have an easily tickled funny bone. Certainly, many of us have chosen to use humor as one of our coping strategies.  What I want to do here is to share my favorite pwp humorists:  blogger, Allison Smith, better known as The Perkie Parkie, blogger Terri Reinhart, and blogger-cartoonist Peter Dunlap-Shohl.

The Perkie Parkie, by Allison Smith, who writes about dating with PD (she has Early Onset PD), what she’d really like for Christmas, her “anniversary” of being diagnosed, girl's night out gone bad, her dog's view of Barkinson's, and much, much more.  Very irreverent. And honest.  http://perkyparkie.com/ 

Studio Foxhoven, by Terri Rheinhart, is funny and all too real. Recently she wrote about side effects, "I found myself dragging more and more.  I thought I'd learned to appreciate the Way of the Tortoise, but the Tortoise wasn't moving much anymore.  I wasn't ready to learn the Way of the Potted Plant." She actually writes other blogs, too.  I'm going to have to look into those, because I enjoy her wry wit.  http://studiofoxhoven.com/parkjournal/

PD Pundit has a series of darkly amusing and informative cartoons about PD https://parkinsonsdisease.net/author/peter-dunlap-shohl/  written by Peter Dunlap-Shohl.  I can't do his work justice, so click on the link to see some of his work - you'll be glad you did.

He also wrote and illustrated the book My Degeneration which explains more clearly than I’ve seen elsewhere what it is like to have PD.  I’ve heard it called a graphic novel, but it’s not fiction.  It includes a home visit from a personification of PD, typical (and horrifying) ways doctors tell patients that they have PD, the worries we live with, and much more, told with fiercely sardonic wit and clever illustrations.  I’ve given the book to many in my family, because it explains the world of a PWP so very well.  He gets it.

An addition: https://parkinsonsnorris.blogspot.com/   Very funny.

If you read online discussion forums about PD, you'll often find humor in postings.  I'm particularly thinking of http://forum.parkinson.org/  and https://www.myparkinsonsteam.com but I'm sure there are others.  We try to find the funny in life, and why not?  Laughing helps us cope.

Images Pixabay, and Amazon.

Stem Cell treatment for PD

A word about stem cell clinical trials.  Here’s a research update on stem cells, one of many promising avenues in PD research: https://www.michaeljfox.org/foundation/news-detail.php?stem-cells-safe-in-pre-clinical-parkinson-disease-study I’ll quote from the update, dated August, 2017: Currently, there are no approved or accepted stem cell treatments for Parkinson's disease, and so, The Michael J. Fox Foundation urges people with PD to view so-called clinics offering stem cell therapies for PD with 'buyer beware' skepticism. 

There are new stem cell study results related to PD coming out all the time, but almost all are in petri dishes or in animals.

That means if somebody is promising treatment using stem cells, you should look at their claims long and hard.   If they say it is a clinical trial, but then want you to pay big bucks, then you need to ask a whole lot of questions, and probably want to grab your wallet and run.  Genuine clinical trials don’t cost you anything.

I looked up stem cell research trials on ClinicalTrial.gov.   Legitimate stem cell research is still carefully trying to see if the therapy is effective – and safe.  For example, studies at major medical centers use only 4 or 12 patients to check for safety of stem cell therapy – they want to risk as few people as possible.  So why would a non-university center take any warm body older than 16 (yes – age 16), for doing a “study” of 3,000 patients.  The non-university (read for-profit) center has a very interesting page on their website:  ... [We]  are not offering stem cell therapy as a cure for any condition, disease, or injury.  No statements or implied treatments on this website have been evaluated or approved by the FDA.  They want your money, but what they are offering is not a cure.  Hmmm.

Further, the for-profit clinic is offering patient funded research.  In a real clinical trial, treatment costs nothing for the people who participate.  Like I said: You probably want to run.  Legit studies are still finding out of the treatment is safe.

Remember that inclusion in the government clinical trial database does not mean it’s been okayed by the government.  In fact, Clinical Trials.gov states: Listing a study on this site does not mean it has been evaluated by the U.S. Federal Government. The safety and scientific validity of a study listed on ClinicalTrials.gov is the responsibility of the study sponsor and investigators.

This just in: the FDA has issued a Warning Letter to American CryoStem, the manufacturer of stem cells used by for-profit clinics to "treat" PD and other conditions. The FDA said these stem cells are a drug being marketed without benefit of FDA approval.  Further - and this is really scary - the FDA found "evidence of significant deviations from current good manufacturing practice requirements... such as potentially being contaminated with microorganisms or having other serious product quality defects. Specific deviations included unvalidated processes, an inadequately controlled environment, lack of control of components used in production, and a lack of sufficient and validated product testing." So the company isn't checking thoroughly to make sure the cells aren't contaminated, among many other basic controls. These are cells that the clinics want to put in your brain.  For further information, see:  https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm591371.htm 

Stem cells might be wonderful, and some very gifted researchers are working hard to find out how stem cells work, how stem cells can be used to treat PD, and if they are safe.  But our wanting this to be the answer doesn't make it the answer. 

God knows that we want a magic pill but the closest thing we have so far is exercise.

Image from Pixabay.

Clinical Trials - research into PD causes, treatments, and cures

Should I be involved in clinical trials?  What about my family – they don’t have PD but they’d like to help.  What if I don’t want to give up the meds that I’m already taking?

Guess what?  Everybody who is an adult and can give “informed consent” can be involved in a clinical trial – PWP (people with Parkinson’s), family and friends, PWP who aren’t taking meds, PWP who are taking meds, PWP who aren’t sure they want to try a brand new drug for safety reasons, PWP who want to test new treatments on themselves.   Not every clinical trial is appropriate for every person, but if you want, you can find a way to be a part of research into the causes of PD, improved living with PD, prevention of PD, slowing or reversal of progression, and someday... a cure or cures.

What exactly is a clinical trial? Here’s Clinical Trial 101 from Michael J. Fox Foundation, probably the most aggressive PD research funder:  https://foxtrialfinder.michaeljfox.org/understanding-clinical-trials/clinical-trials-101/

New treatments, including new medicines, are not possible without clinical trials; some kinds of clinical trials demonstrate whether something done in the laboratory can be done in humans – safely and successfully. 

Here's a description of research results for 2017 that includes clinical trials:  https://www.michaeljfox.org/foundation/news-detail.php?closer-to-cure-download-our-2017-research-year-in-review

Not all clinical trials are testing new treatments; some are observation – surveys, telemedicine (can you treat PD from a computer-to-computer session similar to Skype?), keyboarding software (Tappy) that tracks the way you type by looking for patterns that can help diagnose PD and its progression.  For these kind of studies you don’t have to travel. 

Other clinical trials require you to go to a specific medical center (you decide what’s too far for you to travel), to go a certain number of times a year for examinations, tests of what you can do, maybe blood or spinal puncture tests, maybe imaging tests.  Informed consent means that you are told what you might get out of it, and any risks. You decide if you want to participate, if any risks are acceptable to you; some studies require blood draw or spinal fluid tap, but there may be imaging studies that insurance wouldn’t cover, or the chance to try a new drug. Sometimes what are called “healthy controls” are needed – people without PD – which is one of the ways family and friends can help.

One observational study that everyone can participate in is Fox Insight, “an online clinical study where people with Parkinson's disease and their loved ones share information that could transform the search for better treatments.”  You enter lots of information and answer surveys every 90 days.  Your personal identifiers are separated from the data and then it can be used by researchers.  If you have 30-60 minutes four times a year to answer questions online...  https://foxinsight.michaeljfox.org/

Another observational study is  the Brain Health Registry, which is looking into PD, Alzheimer's, and other brain disorders at http://www.brainhealthregistry.org/how-it-works This works similar to the Fox Insight study.  I participate in both these studies. 

Where can you find out about Clinical Trials?  The following are three possible websites you might want to look into.

• https://foxtrialfinder.michaeljfox.org/ This website focuses on PD. I’ve found the information clear, and you can contact researchers directly via FoxTrialFinder.  You also receive periodic emails about new trials that might interest you.
• https://www.clinicaltrials.gov/  This website is not restricted to just PD.  While the US government maintains this database, the government has not evaluated the studies.  In fact, a few listings are not really clinical trials at all – the company hopes that you will pay for them to experiment on you.  A real clinical trial is careful to limit those who participate to those who fit very narrow parameters, so the scientists can see clearly what is related to the results.  Even more important, in a real clinical trial, all tests are paid for by the trial, not by you.  “Patient-funded research” is aimed at profit, not at genuine research.  (I will be writing about stem cell “research” like this in a future post.)
• http://www.centerwatch.com/   Information here doesn’t seem to be as detailed as on the previous two websites.  You have to contact the researchers for more information, but you can do that directly from this website, which is also not restricted to PD.

In all cases, you decide if you want to participate. 

Image from Pixabay.

Finding information about Parkinson's

       One of the difficulties, ironically, is that there are so many Parkinson’s organizations.  Even if you just look at the national organizations, the internet seems littered with them!  (See Who the heck are all these organizations?) Both among PWP (people with Parkinson’s) and their loving caregivers, there is a great desire to help other PWP.  Many of these organizations have good information, but some are better organized and more focused than others. 

I’ve found a few resources that are particularly helpful – and are not overwhelming.

For a great summary of some immediate questions you might have right after diagnosis, take a look at https://www.michaeljfox.org/understanding-parkinsons/i-have-got-what.php from the Michael J. Fox Foundation.  (Yes, that Michael J. Fox, the actor with PD.)

Here’s basic information about what PD is, how it’s diagnosed, and symptoms:  https://www.davisphinneyfoundation.org/parkinsons-101/  This comes from the Davis Phinney Foundation, set up by an Olympic athlete with PD.

The Davis Phinney Foundation focuses on living the best life that you can with PD.  They’ve published a really helpful (and free) book which includes what you need to know about PD, what to do after diagnosis, young onset issues, exercise, diet and nutrition, emotional health, complementary therapies, medication, surgical therapies, care partners/children/family, and many worksheets/self-assessments/how to prepare for medical appointments and much more.  This is really useful: Every Victory Counts, at  https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017/ You can order the book to be shipped to you, or you can download it to your e-reader/computer.  Since I found the e-reader print a bit small, and since I like being able to dog-ear pages, write marginal notes, and flip around the book, I prefer the paper version. 

When you start discussing possible treatments with your doctor, it’s good to know what specific drugs are for, as well as their common side effects.  This information about conventional treatments, from the Parkinson Foundation, is helpful: http://www.parkinson.org/Understanding-Parkinsons/Treatment However, this may not be the place to learn about what are called “alternative” or “complementary” therapies, since this foundation limits itself to vitamins and  nutritional supplements when discussing alternatives.  As far as I can tell, “alternative” refers to treatments that avoid traditional medicine, while “complementary” refers to treatments used in addition to traditional medicine, but the terms are often used interchangeably.

For a solid review of complementary therapies, I’ve found a terrific book that deals with alternative/complementary therapies as well as conventional therapies.  I especially like that research (or lack of it) is discussed in detail in Optimal Health with Parkinson’s Disease: A Guide to Integrating Lifestyle, Alternative and Conventional Medicine by Monique Giroux, MD.  I really appreciate being treated as an intelligent person, able to make decisions for myself.  Since exercise is emerging as a particularly effective therapy – not just to make symptoms easier to cope with, but to slow down and possibly reverse PD progression – it’s useful to see what other possibilities are available.

I read a lot of books after I was diagnosed, but I found that I needed to re-read them months later because I just couldn’t take it all in.  You are adjusting to a huge permanent change in your life, so don’t be surprised if this happens to you, too.  You’ve joined the group of PWP (people with Parkinson’s), and while that can initially be horrifying, you may well find that these become some of your favorite people.  (Did you know that there is a Parkinson’s Personality?  More on that another time.)

Image from Pixabay.com.

Who the heck are all these organizations?

There are many organizations associated with PD.  Here are the main ones in the US (many states and regions have their own organizations, too.)

APDA – “The American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to finding Parkinson’s disease (PD) and works tirelessly to assist the more than 1 million Americans with PD live life to the fullest in the face of this chronic, neurological disorder.  Founded in 1961, APDA has raised and invested more than $170 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and ultimately put an end to this disease.”  APDA has many local groups. https://www.apdaparkinson.org/

Parkinson’s Foundation – “The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community.” The PF recently merged with Parkinson’s Disease Foundation.  The PF has great discussion forums and basic information. http://parkinson.org/ 

Davis Phinney Foundation –  “We help people with Parkinson’s live well today. We provide essential information, practical tools and inspiration to people living with Parkinson’s.  We fund early phase, innovative research that focuses on exercise, speech, movement and other factors that affect quality of life.  Founded by an athlete who has PD, this foundation focuses on helping PWP live well with PD. https://www.davisphinneyfoundation.org 

Michael J. Fox Foundation for Parkinson’s Research – “The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today.”  Besides an aggressive program of research funding, MJFF provides current information about PD and research, as well as information about clinical trials.   https://www.michaeljfox.org/ and https://foxtrialfinder.michaeljfox.org/

There are international Parkinson’s organizations, many of them.  One is:

World Parkinson Coalition - The World Parkinson Coalition "provides the only international forum on Parkinson's disease that invites all stakeholders to learn about the latest scientific discoveries, medical practices, and care initiatives that improve the lives of people living with Parkinson's disease. By bringing the full Parkinson's community together, including people living with Parkinson's, we hope to expedite the discovery of new treatments for this devastating disease until a cure is found." http://www.worldpdcoalition.org/ For a list of many international PD organizations, see http://www.worldpdcoalition.org/?page=Partners.  Some of these have discussion forums.

Most if not all have email newsletters with interesting information. 

Many PWP, caregivers, families, and friends are active with one or more of these organizations, some educating people about PD, some running and/or participating in support groups, some participating in fund-raising.  We all have different interests, abilities, and available energy. For now, be aware that there are many organizations out there who want to help.