Sarah's Parkinson's Story.

Periodically I post things written by friends because Parkinson’s affects each of us differently and we learn from each other. The following was written by my friend Sarah. She was diagnosed with Parkinson’s in 2010. Her title for this post is Do I Have Parkinson’s Or Does PD Have Me. I call it Sarah’s PD Story.

I look at other Parkies and compare their symptoms to my own.  If I see someone who looks like they

 have PD I really want to ask them If they do.  I once asked a stranger’s wife if her husband had PD as I held the door for them.  She said yes, I said, me too.  She said, “God bless you”.  Another time I told a former coworker (both of us are retired) that I thought we had something in common.  What’s that?  PD, I said.  He asked if it was that obvious.  I said, no, I’ve just learned how to recognize it. 

I don’t want pity or attention.  Some people feel it’s important to ask first if someone wants help.  I’ll take all the help I can get!  I started wearing a PD bracelet when I go out so that people might see it and understand why I’m so slow handling money and fumbling with bags, etc.  How petty/vain I am!  Somebody always has it worse than I do.  I’m still getting used to the idea that I have PD and all the baggage that comes with it.  I always say we’re like snowflakes - - no two Parkies are alike.  We don’t experience the same symptoms, speed of progression, etc., so we’re in uncharted water.  

I’ve been asked to come back to work for a special project lasting about 6 months.  How many hours can I work without getting tired?  Will my hands and brain hold up?  A nap at lunchtime may suffice.  I’ll let you know how that goes.

I’ve got the PD “masked face”.  People think that I’m mad or sad or sick.  I try to smile more to compensate.  I try to stand up straight and not shuffle when I walk.  I catch myself walking by the mirror moving like a zombie with my mouth agape.

I take dance and chorus classes for people with PD.  By the way, why is it called a disease?  It’s not contagious.  Why not call it a syndrome?  Then we’d have to call it PS.   But I digress.  I walk 3 miles every morning.  It takes an hour.  Sometimes toward the end of the walk, if I’m tired, I list or lean to the left.  I’ve fallen 2-3 times, but no real injuries.  

When your symptoms get visible you can’t be private about PD any more.  A lot of Parkies become shut-ins, not wanting to eat in front of people, for example.  I like my PD groups where everybody knows your name and they’re always glad you came.  

Why did I get Parkinson’s?  I don’t know.  Nobody knows.  My maternal grandfather had it plus I grew up and lived on a farm for 17 years with DDT and other chemicals.  My father died of pancreatic cancer at age 75, my mother - - colon cancer at 93 and my brother - - brain cancer at age 35.  My sister-in-law who lives on the farm has had breast cancer.  Who knows what - did what - to whom.  I fear for my siblings and provide them with a list of symptoms to watch out for.

Have you done a will and health directive?  I’m working on it.  I’ve decided they can keep me alive for a week before unplugging me.  Willing my brain to science sounds so righteous but I don’t know if I can do it.  I’ll let you know.

I scan the obits to see who died of Parkinson’s and Lewy Body Disease.  I started doing that upon diagnosis because I was curious how long we live after diagnosis and at what age people die.  The verbiage is usually “a long struggle with PD” or “a brave fight” or “a 10 year-battle”.  I cut out the obits and glue them onto a cardboard portfolio like you would use for a school project.  I must have collected 300 by now.  Do you want to see them?

I’m obsessed/curious about death now, especially since my Mom died on “my watch”.  It was about 3 years ago, she was 92 and at her home in hospice care.  I’ve been reading books about death and dying, trying to figure it all out.  The latest is “Dying Well” by Ira Byock, M.D..  

I have a great fear of what will happen to me.  I’m really scared. I suppose it’s natural to feel that way.  I’m trying to face that fear.  I’ll probably move back east to be near my siblings.  My two sisters say they’ll take care of me but they’re both older and may need me to take care of them!  Back to the DDT farm?  Maybe I’ll get cancer and not have to worry about the end stage of PD.  My husband is 5 years older than I am and has had cancer. I may outlive him, my caregiver.  I’m 62 years of age, diagnosed 6 years ago.  I take Mirapex, 1.5 mg three times a day.  Hardly anyone else I know takes Mirapex because of the side effects such as compulsive gambling, shopping, sex, etc.  I don’t gamble.

As I write this I’m lying flat in bed on ice and Ibuprofen due to hurting my back pulling weeds.  By the bed I have a walker, a “footed (quad?) cane, a grab-it apparatus, a TV tray and a collapsible cane.  These items are getting a test drive and I’m getting an inkling of what life might be like for me in a few years.   I finally got my husband to install grab bars in the shower.  I hold on for dear life, knowing that it only takes a second to fall.  I’ll let you know if the shower chair is worth the money.

I try to stay positive.  “Live in the here and now” people tell me.  What does that mean? Don’t think about the past or future?  Stick your head in the sand and make believe what has befallen you is not an elephant in your brain?  I can only change my attitude, not my predicament.  I’ll get back to you on that.

What is Important to you?  What makes you happy/smile?  Here’s my list, some frivolous, some cliché.

A good haircut            Care giver               Cat                       Chocolate chip cookies        Chorus

Clean sheets              Cleanliness             Clothes that fit     Clothesline            Comfortable shoes

Dance class                Dignity                    Driving a car        Electric blanket      Electric toothbrush

Family                         Fiber                       Friendship           Happiness              Heirlooms

Helpful salespeople    Home-grown tomatoes  Hot shower   House guests         Husband

iPhone                        Ices                        Jack Johnson       Jewelry                   Meds

Mobility                       Money                    My neurologist      Politeness              Practical jokes

Puzzles                      Rod Stewart           Sharp scissors      Snapple iced tea    Sunsets

The house I grew up in    Thrift stores      Walking                 Warm feet & hands

Will you get back to me on that.

Curing Parkinson's

All people with Parkinson’s know that in 1817 Dr. James Parkinson noticed tremor, rigidity, slow movements and stooped gait in some of his fellow Londoners which caused him to write his “Essay on the Shaking Palsy”. Being a good doctor and believing in the power of medicine he predicted “Although, at present, uninformed as to the precise nature of the disease, still it ought not to be considered as one against which there exists no countervailing remedy. On the contrary, there appears to be sufficient reason for hoping that some remedial process may ere long be discovered, by which, at least, the progress of the disease may be stopped.” It’s been 200 years and we are still uninformed as to the precise nature of the disease, there still is no cure and nothing stops the progression of the disease. The best thing you can do is be healthy, take you meds as prescribed, exercise, and live your life. 

I wanted to write about the most promising advancements in the fight to prevent and cure Parkinson’s but realize that I am unable to. The first reason is because there is so much research going on that I can’t decide what is the most promising. Another reason is that a lot of it is beyond my technical understanding. “Can gene delivery of microRNA’s 7 and 153 protect the nigrostriatal system from MPTP toxicity.” Instead, I’ve chosen five areas to highlight: early detection, improved medicine delivery systems, stem cells, gene research, and alpha-synuclein. Most research is directed at finding the causes of PD and preventing, curing, and stoping the progression of the disease. You can find other areas. My neurologist said there is so much top notch research taking place that he believes there will be a major breakthrough within 10 years. Let’s hope he isn’t off by as much as Dr. Parkinson was 200 years ago.

I started writing this post a while ago and it is probably about 75% accurate at this time. I was diagnosed in 2012 and have witnessed a lot of changes in PD research since then. Some things my first neurologist told me are no longer believed to be true so read the following with caution and be aware of the use by or best by date. A final thought. This has been a century of science and amazing medical miracles causing us to expect cures for all diseases but what if PD cannot be prevented, the progression cannot be controlled, and maybe there is no cure.

Early Detection: Parkinson’s symptoms do not usually appear until about 80% of the dopamine producing cells are gone. The presence of symptoms is what makes diagnosis possible. Treatment options therefore cannot be preventive and are limited to managing the disease after the damage is done. Researchers are looking for early indicators of PD, possibly through blood or urine tests, so they can develop therapies that can stop the disease before symptoms develop. 

Medicine Delivery Systems: Drugs and DBS are how we treat PD now. The drugs have serious side effects and DBS is invasive. Sinemet (levodopa and carbidopa) is still king. A concern regarding levodopa is that it is believed to cause serious side effects after long-term use. The pulsating effect of taking a number of levodopa pills every day which have an initial strong impact on the brain followed by a short half life is thought to be one cause of the problem. A dermal patch, a subcutaneous pump, and controlled release tablets have been developed to deliver levodopa in a continuous regulated way without jolting the brain. Providing a more continuous and regulated supply of dopamine to the brain may result in improved control of PD symptoms and lessen side effects.

Currently most PD medications are taken orally. However, it takes time for oral medications to be absorbed by the body before they start to work. An inhaled powder form of levodopa, Inbrija, passed clinical trials and is available. Self administered with an inhaler it reaches the brain faster than orally administered levodopa and provides rapid improvement of motor function to significantly reduce OFF time.

Stem Cells: Stem cell treatment is designed to target damaged dopamine neurons and help create new dopamine producing neurons. Unfortunately PD stem cell therapy clinical trials have not been productive so far but in 2016 a California based company, International Stem Cell Corporation (ISCO), was given permission to start clinical trials on humans for the first time. Doctors implanted replacement brain cells, called neural precursor cells, into the brains of 12 people with moderate to severe PD. It was hoped these cells will finish maturing into the kind of neurons which are destroyed by PD. 12 participants were injected with neural stem cells directly into the striatum and substantial migration ares of the brain and monitored for a year to see how their brains and bodies reacted with the main goal of assuring that the transplants were safe and well tolerated. The stem cells were well tolerated and some improvement in symptoms was noted so a second group of 12 PWP was injected in 2018.

Gene Research: There are two areas of PD gene research: the identification of genes associated with PD and the manipulation of genes to treat PD. Researchers are identifying the genes that cause and contribute to PD. This will allow for the early identification and treatment of those at risk with customized targeting of individual genes associated with PD.

A good and understandable explanation of Parkinson’s gene therapy can be found at http://pdcenter.neurology.ucsf.edu/professionals-guide/gene-therapy-pd

Alpha-synuclein Research: The Michael J. Fox Foundation has donated more than $50 Million to alpha-synuclein research. The alpha-synuclein protein is a major component of Lewy bodies, toxic clumps of protein that damage dopamine neurons. Researchers believe that PD is caused by an increase of synuclein in the cell due to genetic causes. They are devising strategies to lessen the amount of synuclein in the cell which may prevent and possibly reverse PD. There are currently at least six sanctioned clinical alpha-synuclein trails under way utilizing vaccines that bind to alpha-synuclein and then clear it from the brain.

A good, but slightly technical, explanation of the importance of alpha-synuclein research and its application to PD can be found at:

http://journal.frontiersin.org/article/10.3389/fnins.2015.00059/full 

Parkinson's Awareness

The public, doctors, and people with Parkinson's. Who knows what about PD?

More than a million Americans have Parkinson’s, 60,000 additional cases are diagnosed every year, and more than 10 million people have it world wide. Thousands more have the disease but go undetected and yet the public doesn’t have a clue as to what Parkinson’s is or what it means to have it. Some of the things well meaning people told me when I was first diagnosed are that I would have to stop working, that I should prepare my will while I was still able, that I should start looking for assisted living now, and that I will probably be dead in X number years. Lack of knowledge pervades. Take the Parkinson’s IQ  test.What is Parkinson’s? Is PD genetic? Is PD curable? Name 4 major PD symptoms. Does Sinemet lose its effectiveness over time? Do all PWP have tremors? Does PD kill you?

Doctors, of course, know about PD but are not the best at treating it. They know the disease effects each of us differently but treat it generally not individually. Medication is the name of their game. Azilect or Mirapex to start if the PD is mild and then increasing doses of Sinemet (Madopar in the EU) as it progresses. They may also prescribe meds for depression, anxiety, dizziness, and low blood pressure. You could wind up taking pills by the fist full. Few doctors though prescribe a comprehensive treatment plan that includes physical exercise and mental well being or the value of social engagement or joining a PD support group. To be fair there is not much more they can do than manage symptoms.

PWP are fully aware of the disease. Really aware. The disease doesn’t let you forget. Most PWP have educated themselves to have a good understanding of the disease so they can make a self treatment plan to best care for themselves. They share their knowledge and experience and provide each other with information doctors don’t tell us. We are our own best resource. 
Current research indicates that depression may be the first sign of Parkinson’s beginning before motor symptoms appear and that it may even be part of the underlying disease process. Statistics show that 40% of PD patients suffer from depression but no neurologist has asked me in more than a general way how I am doing emotionally. All concern has been with the physical aspects of the disease. And at first I thought of Parkinson’s as a physical disease, a movement disorder. I now know it is mental. It is a battle with PD for the control of my mind and emotions. A healthy mind is the greatest asset in fighting the disease. It helps me to accept the reality of what is, neither making more of the disease or less. I accept that I am going to probably lose the physical battle with PD even though I exercise every day but I am not giving up the fight for my mind and how I feel. PD slowly and continuously wears you down. There is a heavy emotional cost to having a physically and mentally punishing neurological brain disorder that progressively gets worse and is not curable so I keep telling myself that I have the disease, I am not the disease. I have it, it doesn’t have me. Some of the time I actually believe it.

What Causes Parkinson's Disease

“To date, despite decades of intensive study the causes of Parkinson’s remain unknown. Many experts think that the disease is caused by a combination of genetic and environmental factors, which may vary from person to person.” From the PD Foundation web site.

The Environment

Why me Lord? What have I done to so offend you? Was it the drugs when I was young? So I tried a few. What’s the big deal? They are even making some of them legal now and prescribing it medically. Do we pay later in life for the excesses of youth? No fair. We were young and free and happy to be alive at a great time. I know I’m not “perfect and upright” like Job but I can understand why he was just a wee bit upset. How have I so offended you as to deserve PD? “Teach me, and I will hold my tongue: and cause me to understand.”

Environmental causes means all causes that are not genetic. Age, the older you are the more your chances of getting PD. 1% of the population over 60, 0.001% under 45. It is not known why but men have a 50% higher risk to develop Parkinson’s than women. People who suffered traumatic head injuries, those exposed to toxic chemicals especially pesticides, and certain metals (manganese) and solvents have a higher incidence but there is no conclusive evidence that exposure to any single environmental factor acting alone can cause PD.

Genetics

Is it genetic? Did I inherit PD from my parents? They would be horrified. They were decent people and good parents. It’s the last thing they would have wanted. Am I going to pass this on to my children? I know you can’t argue with God but let me complain a little. Isn't there any wiggle room with heredity? Holy double helix, what is natural selection thinking? It’s bad enough that I have PD. No parent wants to pass disease on to their children. “Therefore I will not refrain my mouth. I will speak in the anguish of my spirit. I will complain in the bitterness of my soul.”

There are causal genes and associated genes. Causal genes occur in 1 - 2% of PD cases and guarantee that a person who lives long enough will develop PD without the influence of other genes or environmental factors. Associated genes increase the risk but do not develop PD on their own. A person with associated genes may never develop PD but is more likely to. They need to be combined with other genes or affected by the environment. Those with causal genes get PD if they live long enough, those with associated genes may or may not get it, and those with neither type gene may get PD due to environmental causes. 4 - 9% (the numbers vary) of those that have a parent or sibling with PD get it.  15 - 25% who have any relative with the disease get it.

It is more complicated than just environmental or genetic factors. Most researchers believe it is their interaction. That is, a person’s genetic makeup will determine the effect of an environmental exposure. Genetics make you a candidate for PD and environmental exposures can trigger it. In order to develop treatments to stop or reverse the disease scientists are working to identify the combinations of genes and environmental exposures that result in PD and researchers are looking for the genetic trigger that starts the cell death process in dopamine neurons.

Are there ways to prevent PD? There is no proven way to prevent PD. Some studies show that people who eat more fruits and veggies, high-fiber foods, fish, and omega-3 rich oils (the Mediterranean Diet) and who eat less red meat and dairy have a lower incidence of the disease. Reduced risk of developing the disease is also associated with smoking (yes smoking), caffeine, high vitamin D levels, exercise (everyone’s favorite), and greater physical activity. As of now though, “Man that is born of a woman is of few days and full of trouble.” Svet gornisht helfen, there is no help for it.

Joanna's Parkinson's Story

I invited a few friends to write posts because each person’s PD story is different and we learn from each other. The following was written by my friend Joanna. She was diagnosed with Parkinson’s in 2013. Her title for this post is Believing. I call it Positive Thinking.

In late spring of 2013, I found myself in a new phase of my life’s journey with the uninvited companion of Parkinson’s.  I decided we needed to accept each other and find some kind of peace.  I would do my best to learn whatever it brought into my path, but I would never let it take over.  And if I could discourage an extended stay, I would be delighted.  My first line of action was to let everyone in my circle of family and friends know about this change for me.  The support I asked for was to point me in the direction of anything that would make me laugh – movies, jokes, books, TV shows, cartoons.  This gave them a way to help me without eliciting a pity party.  

Laughter is healing. I learned this from Norman Cousins when I was in my twenties.  Now it’s a scientific fact and I can join in proving it.  (Confession:  I spent a lot of my life until my 50s often depressed and stressed, so I’m a latecomer to this practice.)  My primary healing strategy is to insure that I have as much joy in my life as possible.  It isn’t easy by a long shot - when I can’t sleep or when I unwittingly settle into despair and discouragement, old habit trails; when my body won’t function the way I want it to – fumbling with buttons, tremoring multiple letters as I type a message.  I can easily succumb to a sense of powerlessness, allowing negativity to finds its niche.  To counter this requires vigilance.  I stay acutely awake to my emotions so I can guide them back to joy.  Sometimes, it’s as simple as reminding myself of what I treasure in my life, of the sunshine or wisps of fog, of my family with all its foibles, of my good friends, old and new, for the birds at dawn.  Other times I am grateful that what the doctors call progression of this dis-ease is slow and it surfaced when I was closer to 70.  And then again, some of my symptoms can also be ascribed to normal aging in a body that has rarely experienced regular exercise.  It’s all a matter of perspective.  

When my constellation of symptoms – loss of smell, dizzying low blood pressure, creeping stiffness, fatigue and tremors – was named as Parkinson’s, I actually was relieved.  I realized it could be much worse.  With a name, I could begin a search to understand my options and choose how to deal with it.  My biggest relief was accepting low blood pressure medications to minimize my swings and sways.  At first, I was willing to try some of the Parkinson’s meds, but they lowered my blood pressure even more and so had to stop.  Currently, I take 1 mg of Azilect. I have to confess it is mostly because I love the name. But I also like that it is preventive – supporting my fading dopamine to stay fully engaged for as long as possible.  When I first got my meds, I put them on my small altar and asked that they be blessed for their work with me.  I believe in calling on all the energies and spirits to join me in this healing journey, however this healing takes shape.  I may not get to a physical cure, but I’m definitely working for spiritual and emotional healing.

When I began my research, I was overwhelmed with the information available.  I had to stop for periods at a time.  It was depressing and left me dizzy and hopeless about sorting through it all.  I was intrigued by some of the stories, but not convinced one way or another; skepticism and suspicion a familial tendency.  My first move when learning I had this condition was to sign up for a Parkinson’s dance class.  My neurologist had wisely handed me this information along with drugs.  Dance took, the drugs did not!  I’m not a joiner by nature, but I sensed this was something I should pay attention to.  Choosing to do this would be positive action.  I would not be a victim.  And then, I fell in love with the class.  I felt great kinship and belonging.  And I had such fun, in touch with the little girl in me, that joyful and adventurous five year old.  

A few months into the diagnosis, a friend told me about Bianca Mollé and her cure from Parkinson’s following a regime of Qigong.  I knew about Qigong but never got myself into a class.  A friend in the dance class lent me a book by Mollé about her journey to Qigong.  He also strongly encouraged me to start with a 10 day retreat.  Realizing the powers that be were guiding me to this exploration, I took a leap of faith and signed up for my first retreat, with four more to come over the ensuing years.  I am deeply grateful I took this leap.  Zhineng (Wisdom Healing) Qigong has given me a framework to understand my body; a non-medical approach to healing and how to be pro active at home in managing my health.  To be perfectly honest, I struggle with the discipline of routines, so I’m off-and-on the qigong practice wagon, as my life’s rhythms shift and change.  But it’s given me the foundation I was looking for, an approach to living and such a deeper understanding of who I am in this incredible universe.  It is with me everyday.  Fellow Parkinson’s seekers at my retreats also told me of Howard Shifke’s website and his recovery from Parkinson’s.  Though I have not followed his recipe, it too includes qigong.  I enjoy checking into his blog periodically for a shot of his wisdom and encouragement.  I’ve discovered many informational sites, but can only take in so much information at a time.   I will periodically read mailings from Parkinson’s groups involved in medical research.  I am happy to participate as a guinea pig in non-drug research.  But I don’t want to make this my life’s obsession. 

Knowing myself, I cannot commit to an unrelenting and rigid program of activities uni-focused on Parkinson’s recovery – be they walking, boxing, ballroom dancing, biking, yoga, qigong.  I want to enjoy my life without heavy regimentation that serves as a constant reminder.  I may get to some of these activities eventually.  I know that when I do Qigong, my body feels great.  Resting also makes me feel good.  Sometimes, I even forget I have this condition.  I can laugh at the challenge of carrying a cup of coffee across a room without splashing, too much.  My laughter brings me energy, lightness of being, improved balance, more dopamine for the brain (even if not directly into the substantia nigra where tremors et al originate).  

Living well is the challenge, my goal.  Dying with a happy heart, with grace and joy is my destination…regardless of what condition I may have.  For me, the most important task is to go with what life presents with no illusion that I can be in control of anything more than my attitude and approach.   I do not fear death.  I fear a life not lived.  That Parkinson’s has happened along is part of what I deal with everyday – some days better, some days not so better.   But I am constantly learning about myself and that’s about as alive as one can be.  

We each have to find what works for us.  That’s the beauty of this condition.  The challenge is stepping up to our uniqueness and enjoying our life in all its dimensions of good, bad and brutally ugly.  I live with the paradoxes.  There is no other choice.