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.

Parkinson's And Death

A Washington University School of Medicine study of 138,000 Medicare beneficiaries diagnosed with Parkinson’s in 2002 found that 64 percent died within six years of diagnosis. “After adjusting the data for age, race, and sex, people with Parkinson’s had a nearly four times greater risk of death than people with no disease and nearly double the risk of death than for those living with other common diseases such as colorectal cancer, stroke and ischemic heart disease.  People with Parkinson’s had nearly the same risk of death as those who had experienced a heart attack or suffered a hip fracture.” The Parkinson’s Disease Foundation website.

I’m sure that my beliefs about death will change as I continue to age and get closer to dying. So why write about it? It took Parkinson’s to make me accept that I am going to die. It’s not that I thought I was immortal. I just didn’t spend a lot of time thinking about death. Death and dying would come into my mind but I couldn’t wrap my mind around it. I would just stop thinking about it. Since my Parkinson’s progressed I fully accept that I am going to die. It was not something I thought much about. I was aware of death but only as an elusive shadow in my mind. It was there but not there. I am not sure what that means but the possibility of death now exists for me. Death. The D is strong, definite. The TH is soft, lingers for a moment then ends completely. Death. I hear the word and now consider it. Life ends. Don’t misunderstand me. I am not attracted to it or looking forward to dying. I am not particularly worried about it or depressed. My attitude is pretty good but I now know death exists. It is there.

Does Parkinson’s kill you? Here is some medical mumbo jumbo. Parkinson’s “itself is not fatal. However, related complications can reduce life expectancy.” Parkinson’s doesn’t kill you but “Patients with PD have a somewhat shorter life span compared with healthy individuals that belong to the same age group.” Or how about “While Parkinson’s does not directly result in a terminal diagnosis, as symptoms worsen, complications can arise, threatening the patient’s health sometimes becoming fatal.” Despite their own studies and statements, the medical profession continues to claim that Parkinson’s doesn’t kill you. Nonsense was the common response of almost every PWP I talked to. So what is the disconnect here?

Do life insurance rates go up? Yes. Does life expectancy go down? Yes. Does end stage Parkinson’s exist? Yes. Can you get long term care insurance if you are diagnosed with PD? No. The Centers for Disease Control (CDC) states that complications from PD is the 14th leading cause of death in the United States. My answer. PD chips away at your life a little more each day and finally kills you and even if it doesn’t kill you, PD is a life sentence without chance of parole. This may be hard to take but living with Parkinson’s seemed to clear my mind, strengthen me to see things as they are, and accept the reality of what is. 

Parkinson’s is a great teacher. It prepares us for death. We learn to see death as an end to suffering. An escape from the progressive torment of PD. So yes, PD does kill you but it is comforting to know that there is an end to the misery of Parkinson’s, a way out. I am not looking forward to dying but probably won’t rage against it and instead be more willing to go gently into that good night.

Parkinson's And Sinemet

My PWP friends often discuss their meds: are they working or not, should they take more or less, stop completely or try a new one. According to the AMA one-quarter of all new prescriptions are never filled and patients do not take their medications 50 percent of the time. Most non adherence is intentional. People decide not to take their medicine based on their knowledge, experience, concerns, and beliefs. The main reason is fear. They are afraid of potential side effects and believe that meds cause problems. Based on talking to PWP friends I believe another reason is because doctors often don’t fully explain why they are prescribing that specific drug, the importance of taking it, the benefits of it, the risks and the possible side effects. About 75% of the PWP I know do not take their meds as the doctor prescribed. They take less, or more, adjust it to how they feel each day, or rely on “natural” remedies

Sinemet (Madopar in the EU), a combination of levodopa and carbidopa (benserazide in the EU) is used to treat Parkinson’s disease symptoms such as tremors, stiffness, and difficulty moving. PD is believed to be caused by too little dopamine in the brain. Levodopa changes into dopamine in the brain, helping to control movement. Carbidopa prevents the breakdown of levodopa in the bloodstream so more levodopa can reach the brain. Sinemet has been the gold standard drug for Parkinson’s for 25 years. It is even on the World Health Organization's List of Essential Medicines but it doesn’t work for everyone. One doctor I saw put it at 50%. It also has side effects. Reading the list is scary. To take or not to take Sinemet that is the question. The easy answer is if it works for you take it. If it doesn’t don’t. So the real question is how to tell if it works for you and is the risk of possible side effects worth the benefits.

A friend was recently prescribed Sinemet by her doctor. She was  diagnosed with Parkinson’s three years ago and has worked hard with alternative therapies to control her PD. She has a noticeable tremor in one hand and is having trouble sleeping. She seems fairly healthy and happy but when she told her doctor that it was getting harder to perform daily activities like dressing and caring for herself he suggested she start taking Sinemet. Now she finds herself looking at the bottle and trying to decide whether or not to start taking the pills.

Her first thoughts are I don’t want to have to take this for the rest of my life and she is worried about the possible side effects down the road. After a month of indecision she says she will give it a chance and see if it improves her quality of life but is waiting for the right moment to begin. If there isn’t noticeable improvement after a few weeks she will stop. 

Three months later she finally pulled the trigger and started taking Sinemet and became dizzy and confused, lost stability and stumbled, and wanted to stay in bed and sleep all the time. She contacted her doctor who replied, “Sounds like you feel worse on the drug, not better. Sounds very predictable, so I would stop the carbidopa/levodopa. Unfortunately some people have this "sleepy dopey" effect. Often likely associated with blood pressure drops.” To which she says, ”So I am free!! I feel like I dodged a life sentence and can get back to my alternative efforts. I was so deliriously happy, I stayed awake all night on a high of joy!! Now when I droop, I can't blame meds!! Also will need to get more disciplined overall since meds don't seem a viable fall back position. Oh well!!” 

Another friend has been trying to decide whether or not to increase her Sinemet because her tremors have gotten worse. Her neurologist said she should take as much Sinemet as necessary to keep ahead of the symptoms but she is worried about the side effects specifically the dyskinesia. She finally decided to increase her dose because “all I have is now and I want to enjoy my life.” She sees it as if she is deficient in an essential nutrient that Sinemet supplies much like taking a vitamin pill for a vitamin deficiency. The increased dose is helping her tremors, she feels stronger, is more energetic, more able to participate in the day so that she is much happier and at times even forgets she has PD. She “loves” the improvement.

I was prescribed Sinemet but didn’t take it for the first three years. The disease developed slowly until I didn’t feel well. I then took it for a year but the PD seemed to accelerate and I wondered if Sinemet was making it worse. So I periodically take less or stop for a short time. I shake more when I stop, my body feels stiff and aches, and I am not as steady, but strangely I feel better over all and I am not sure if the discomfort is due to PD or due to coming off Sinemet and trying to kick the Sinemet habit. I discussed this with my doctor and he said that I should be taking more not less. It’s not that Sinemet is less effective over time, the Parkinson’s gets worse. I increased my dosage but didn’t feel much better so went back to taking less and I feel okay. So is Sinemet helping me or not? Sometimes it it helps with my symptoms and gives a mild feeling of well being but does it cause additional problems? The answer should be easy. Just follow your doctors advice but what if it is different for each person helping one, causing another problems, and having mixed results for a third. You think I’m confused. I know a doctor who has PD and he questions how to take his meds. So what's a poor PWP like me to do?

Parkinson's Bad Days

Sick As A Dog

What is a Parkinson’s bad day? A bad day is when I can’t get out of bed. A bad day is when I get out of bed but don’t have the energy to brush my teeth. If I can do those things but my legs are too tired to walk it’s a bad day. Pour the cereal in the bowl, ok. Do the dishes, forget about it. If I can just do the ordinary and necessary it’s an okay day. What is a good day? A good day is a joy and pleasure and provides stock to go on.

On bad days when the PD completely takes over I no longer fight it. I try to relax and let it have its way. I used to resist, push myself, get up and try to be active and fend it off. Now I sit in a chair looking out my window. I am up high and see hills and the open blue sky to the East. A university campus is to the North. Small boats sail between islands that dot the bay to the West. Students carrying books walk hurriedly by, a woman with a content smile lazily pushes a baby in a stroller, and the old jogger with the gray pony tail wearing only running shorts on a cold day checks his Fitbit. Technology won’t help you my friend. Your pace will continue to slow. There is nothing you can do. We are born dependent, cared for by others, then grow and learn and spread our wings and sometimes experience happiness and pleasure and accomplish great things but our wings melt with failing health and the inescapability of age and we learn the meaning off words like Parkinson’s, bradykinesia, Sinemet, retropulsion, dopamine, tremors, dystonia, rigidity, anxiety, depression.

So what is the answer. What to do in the face of inevitability? I have no answer. There is no answer except to get through the bad days as well as possible and appreciate the good days. Go outside and join the flow. Continue to learn what life has in store. Cherish your family and friends and those you love and try to be as healthy and happy as possible.

Parkinson's Doctor Office Visit

I’ve seen three different neurologists so far. All have been pretty much the same. How are your meds doing, take three of these a day and see me again in a year. I wasn’t much better as I didn’t prepare for visits, wasn’t always fully truthful with them, often tried to appear better than I was, didn’t ask the hard questions and didn’t even remember their names. It was as if we had a tacit agreement to spend a pleasant half hour together. We could have served tea. I realized that this was not helping me fight Parkinson’s and decided to make my next appointment more meaningful.

I didn’t wait for the yearly visit but was proactive and called three months early. I want to make an appointment to see my neurologist. Why she asked? I need his help fighting Parkinson’s. I can fit you in in six weeks. Six weeks, don’t you have anything sooner. This is serious. I’m loosing the battle with PD and need help. Sir, if you have a medical emergency we suggest you call 911 or go to the nearest Emergency Department. Hmmm, let me think about this. Is PD a medical emergency? 

A little setback but six weeks later, still determined to be the poster boy in the fight against PD, I see the neurologist. How are you he asked? Not good, I have Parkinson’s and want to know how to stop the progression of the disease and be cured. Concerned look, there isn’t a cure. I’m serious I said. I need a comprehensive treatment plan based on todays best medical knowledge to help stop the progression. There is no proven way to slow or stop the progression of PD. What about exercise? I thought exercise helped. Exercise is good because it can lessen the effect the disease has on you but it will not help protect the dopamine producing neurons in the substantia nigra. I thought new research shows that exercise can help develop new nerve cells in the brain. Yes, that is true but in a different part of the brain that can mostly benefit some stroke patients. There is no evidence of dopamine producing cells regenerating or of new ones developing. Diet, exercise and a good life style can help you stay healthy, active, and mobile. They can lessen the effect PD has on you but nothing has been proven to slow or stop the progression of the disease. Coenzyme Q10, for example, was thought to help but clinical trials have been stopped because it doesn’t. Scientists are researching a number of things like stem cell therapy and alpha synuclein busting drugs. We have hope for the future but there isn’t anything now except deep brain stimulation and medications. The best way to control PD is to stay healthy and take the right medication in the right dose at the right time and let me know of any changes so we can make adjustments and prescribe correctly for you.

Okay, I have a progressive incurable disease called Parkinson’s. PD has a mind of its own and will develop at its own speed and in its own way. So, what to make of this and what to do? Be me, not the disease. Do not let Parkinson’s control or dominate my life or become my identity. I have the disease, I am not the disease. Take a step back from it. Don’t be alone with it. Enjoy time with family and friends. Do what I can to be healthy. Enjoy the good days as much as possible. Admit and accept the reality of what is. Accept that it is going to get worse and prepare for the future which I admit I am having hard time thinking about. Try to maintain a positive mental outlook. Depression, get thee behind me. Brave words, easy to say, harder to do when PD affects every move I make and I know that somewhere down the road a hard rains going to fall. I’ll let you know how it works out.

The Parkinson's Diet

It’s going viral, the newest sensation that’s sweeping the nation. From New York to LA anfrom Miami to Hollywood. All the A list stars, all the top actors and athletes, and especially the top super models have hired personal trainers to prepare meals and coach them in the principles of the Parkinson’s Diet. The more dedicated are even asking their doctor to prescribe pills to inhibit dopamine production.

You’ve read the Parkinson’s Diet Handbook, over 20 million copies sold. Now the restaurant chain, Parky’s Place, is quickly spreading across America and beginning to penetrate the European and the Asian markets although for some reason it seems to be having trouble catching on in third world countries. There is a six month wait list for a reservation. The hippest thing to casually drop into a conversation and the hottest tweet is guess who I saw at Parky’s Place last night.

Prepare yourself for a unique experience. There is no silverware at Parky’s Place. All food is eaten with your hands so get into it. Upon being seated at your table the waitperson will present you with a small pill, often served on a silver tray, that inhibits dopamine production and enables the true Parkie experience. He will then ask if you are considering the lobster which is code for do you want a bib to protect your clothes from spills. You can drink as much alcohol as you want but wine is served in a glass only half full and comes with a straw. All mixed drinks are James Bonded, shaken not stirred. Shot glasses are verboten.

The rich and famous love eating with their hands although the tremor canceling Google Spoon can be purchased for use. Soup is drunk straight from the bowl. Sandwiches for the tame but nothing beats grabbing a whole leg of lamb or ripping a tender juicy steak apart with your bare hands and don’t forget to lick your fingers after the mashed potatoes and gravy. Dessert, try something wiggly like jello although creamy cakes are a favorite. Said one model, I’ve been dieting and watching my weight for years but at Parky’s Place I can shovel all the cake into my mouth that I can get my hands on and not gain a pound.

Pictures of the rich and famous eating at Parky’s Place are appearing in all the media and testimonials are rolling in. Bibs of the more famous are signed and hung on the wall. “To Parky’s Place with all my love” wrote a top model. “I couldn’t have done it without you. I lost 20 pounds since going on the Parkinson’s diet and I’m still shaking all over” said another. Lets be honest, can we talk here. Have you ever seen a 300 pound person with Parkinson’s?

Google's Parkinson's Spoon

Let’s get to the bottom line in the first line. The PD spoon works and is worth it if you need it but it is expensive (currently about $200) and can stand a few improvements.You know the story. Developed by Google because one of the founders mother has PD. Not fully true. Google didn’t invent it. The original “smart spoon” actually debuted in December 2013 and was designed by Lift Labs, a startup that Google has now acquired. My family gave me the Parkinson’s spoon as a present. I had mixed feelings and didn’t know how to respond. Why did they give this to me? Were my tremors that bad and they thought I needed it now or was it because they we're being thoughtful and looking ahead?

I should have known but had to laugh when I discovered “spoon task analysis”. It breaks eating with a spoon down into the following tasks: move hand to spoon, pick spoon up, move spoon to plate, scoop food onto spoon, bring food to mouth, put food into mouth, move spoon back to the plate or put the spoon down. The PD spoon helps with the heart of the problem, getting food onto the spoon and then into your mouth.

It is technically called a “tremor-canceling” invention, which means that it reads incoming movement and uses built in motors to offset that movement and keep the bowl of the spoon as stationary as possible. It isn’t just mechanical shock-absorbing stabilizing technology. It has to dynamically undo the movement caused by the tremors and random nerve movement of Parkinson’s while also identifying and not trying to offset the user’s attempts to move the spoon toward his mouth.

The utensil has two parts: the stabilizing handle with all the technology and three possible utensil attachments consisting of a soup spoon, a dessert spoon, and a fork. Each utensil has to be purchased separately. Attach a spoon or fork to the handle and the utensil automatically turns on. Place it face down and it turns off. It comes with a travel case and so can be taken to a restaurant or a friends house. Lift Labs claims the battery charge will last for “several” meals.

Improvements. The spoon looks techno but doesn’t feel right in the hand. The handle length is too short, handle width too thick. It feels awkward to hold and takes getting used to. You hold it in your fist like a shovel not in your fingers like a spoon. It will not work if your hand shakes too much and there are some reports of the battery not charging after a year. Only the detachable spoon is washable not the handle.

My family was excited to see me try it out so I gave it the soup test and even though my hands shake I didn’t spill a drop. Was kind of fun for a while. I finally understood what to do. Thank my family and be happy that they thought and cared about me but I decided to return the spoon and get an electric toothbrush instead which unlike the spoon I will use every day. According to my son, they were great about the return and seemed to be genuinely interested in his feedback. May purchase it again when I am more in need of it and it will hopefully be improved and less expensive.

Parkinson's Community Love Letter

FROM THE HEART

To the Parkinson’s community, to all those people with Parkinson’s that I met, to those with PD that I haven’t met, to the care givers and family of those with PD, to all the friends of those with PD, to all the teachers and medical professionals who worked with us. We are the Parkinson’s community.

To those with PD that I met. Thank you for the comfort and support and knowledge you have given me. We are our own best resource. The truths I learned from you have given me the strength to go on. I listened to your stories and heard your joys and your pain. I admire you. We have danced together, and laughed together, and learned together, and shared our stories. You are my community, my brothers and sisters. I have a unique and special bond with you. Let us appreciate each other and smile a smile of recognition when we meet.

To those with PD that I haven’t met. We are in this together. When you shake I shake with you. When you fall I also fall. Your strength strengthens me. Your victories embolden me. The things we have in common unite us. We are community and in this together.

You who are partners and care givers are my heroes. You are incredible. I don’t have a care giver but I’ve witnessed the gentle loving care you rendered. I can’t thank you enough for your compassion and strength, for your kindness and patience, for your help and care. You haven’t been acknowledged enough. You can’t be thanked enough.

To the family of those with PD. I know that PD has been as hard on you as  it has been on us. I’ve seen you cry when you didn’t think I was watching. I’ve tried to protect you from the worst and know you’ve given me your best. You are there for me and support me just by being there when I most need it. I am sorry for the concern and worry I cause you and thankful for the loving help and support you give me.

To the friends. Thank you for helping me on with my jacket and pouring a drink for me and giving me a helping hand to get up without embarrassing me. Thank you for continuing to include me in all things and understanding why I sometimes can’t make it. Thank you for helping me understand the meaning of having a friend. 

Thank you to the teachers and workshop leaders and lecturers. Your gifts to us are beyond value and help delay the progression of the disease. I don’t have Parkinson’s when I dance and exercise with you. My mind is active and without burden during your presentations. Thank you from all those who gained so much by passing through your classes.

To the medical professionals. We need and want your help but except for a few fully dedicated doctors you are mostly not there. It is not enough to say take three of these a day and see me again in a year. We are suffering and need comprehensive treatment plans that address all aspects of the disease so we can fight PD and improve the quality of our lives. To the researchers looking for a cure thank you and may you go speedily and be successful in our time. 

To those who distanced themselves and didn’t want to be involved. I understand and hold no ill feelings toward you but do not label me, define me, limit me by the word Parkinson’s. I am more than that. I think, I feel, I dance, I write poetry, I love. You missed out on an incredible trip and are less for not having journeyed. I am more.

And what of me? My goal is to get up each day and try to live as fully as possible. I am afraid of what is to come but in my better moments take joy in each day. Parkinson’s has wrecked my body but has taught me how to be a better person. Every setback leaves its shadow but my spirit grows stronger. I know and don’t know what is to come so you my community let us support each other and be as socially, intellectually, and physically engaged as possible and by the quality of our lives defeat Parkinson’s. Let us celebrate each small victory together. You are my community. You welcomed me with love and kindness. We are united and bonded by common cause.

Ping Pong Parkinson's Neuroplasticity

You’ve heard the story of how researchers discovered that forced exercise bicycle riding is good for people with Parkinson’s and you've heard about the wonderful work the Mark Morris Foundation is doing with its Dance For PD program. You may have even heard about ping pong diplomacy which refers to the exchange of US and Chinese ping pong players in 1971 that paved the way for Nixon’s visit to China and started the thaw in US China relations. Well, I’ve discovered the ultimate beneficial activity for people with PD. Ping Pong. And it’s not because I’m good at it. I’m terrible, having played only two or three times previously.

I didn’t want to play because I was afraid of making a fool of myself by stumbling around and falling but another player was needed so I decided to try. Miraculously even though I was moving rapidly from side to side and back and forth I seemed to move smoothly and without thinking. And surprise, surprise I didn’t shake. Even though I have a noticeable tremor my hand was as steady as a rock and I didn’t shake even between points when the ball wasn’t in play.

But this post is not about ping pong, it’s about neuroplasticity, the brain’s ability to form new neural paths and reorganize synaptic connections throughout life. Until recently scientists believed that we were born with a fixed number of neural cells. When a cell died a new one couldn’t grow and we couldn’t generate new neural pathways. Modern brain imaging technology shows that the brain has the ability to reorganize itself and grow new neural cells and neural pathways throughout life. This is particularly important to people with Parkinson’s because the disease is thought to be caused a drop in dopamine levels due to nerve cell damage in the brain. Unfortunately neural regeneration has not yet been observed in the substantial nigra, the area off the brain most responsible for dopamine production. Let’s not give up hope.

It’s all about axons, neurons, synapses, and neural pathways. A neuron consist of a cell body containing a nucleus that receives incoming nerve impulses and an axon that carries impulses away from the cell body across a synapse to another cell. A synapse is where a nerve impulse passes from one neuron to another. A web quote “Brain reorganization takes place by mechanisms such as "axonal sprouting" in which undamaged axons grow new nerve endings to reconnect neurons whose links were injured or severed. Undamaged axons can also sprout nerve endings and connect with other undamaged nerve cells, forming new neural pathways to accomplish a new needed function.” Words like brain reorganization, new neural paths, and new needed functions are music to a person with Parkinson’s ear.

The way to keep the brain healthy and to develop new neural paths is to perform new activities and challenges that push your mental and physical limits. Learning a new language, solving sudoko puzzles, learning to play an instrument are all good but complex, demanding, random, forced physical activity repeated over time is best because it changes the way the brain works. Newly formed neural pathways need repetition and reinforcement to remain viable. The thing to do is to learn to look forward to new challenges and take pleasure in doing them.

One of the most important aspects of ping pong is that every shot is different and random. Ping pong involves fast reflexes, good hand-eye coordination, and demands balance. You’ve got to make continuous quick adjustments and decisions while rapidly moving because you never know where the ball is going to be. There are studies that show that fast paced (forced) random physical exercise demanding quick decision making and response is particularly beneficial to people with PD. Aerobic exercise is always good but static, repetitive exercise, like walking on a treadmill or stationary biking, is not as helpful to improve coordination, reflexes, balance and other movement-related skills as is random practice exercise in which you are required to change speed and direction and adjust responses at random intervals. I have a PD friend who plays ping pong with a paddle in each hand alternating hands with each shot. She says that it works both sides of her brain and forces even quicker adjustments and responses. She’s convinced it helps her PD. The problem with ping pong though is that the action is not sustained. It involves vey short bursts of activity and too many stops. Maybe the perfect exercise would be to play ping pong while riding a Theracycle.

Enough chit chat. Have to get back to the ping pong table and do more research so I can help cure PD and publish my findings in all the leading medical journals. Should I call it Ping Pong Parkinson’s or Parkinson’s Ping Pong? How about PPP or just P3? Ok, I admit I googled it and found out that a few other people say they found ping pong beneficial but no one mentions the best part - how enjoyable the laughter and excitement was and how good it made me feel to have fun with my family and friends.

How Parkinson's Progresses

IHow Parkinson’s Progresses

I’ve seen three different neurologists so far including one stated to be the most knowledgeable about Parkinson’s in this area.  All told me I have stage 1 and now stage 2 Parkinson’s. What does that mean? It means they were out of date by more than 40 years because they were referencing the Hoehn and Yahr scale that was published in 1967 and is still widely used even though supplanted by the ADL and UPDRS scales many years ago.

There are three main measuring tools: the old Hoehn and Yahr which assigns stages to PD and is still used by many doctors because they only have to observe you for a few minutes to administer it, the Schwab and England Activities of Daily Living (ADL) which is a scale that focuses on how well you perform daily tasks, and the modified Unified Parkinson Disease Rating Scale (MDS-UPDRS) which is administered by interview and is the most widely accepted because it is the most comprehensive and evaluates both motor and non motor aspects of PD including emotional health, mental sharpness, and physical ability. 

I pay no attention to the scales in judging how advanced or bad my PD is. Their value is that they lay out a “typical” progression to the disease which allows me to see what I don’t look forward to and prepare for it. What is important is are you able to take care of yourself and how you feel. Are you getting out of bed in the morning, can you manage by yourself, are you socially, intellectually, and physically engaged, are you happy.

Scale 1. Hoehn and Yahr defines five stages of PD and was later modified to add two more stages. It is intended to reflect the degree of motor impairment and disability and progression of the disease. It measures only the observable physical symptoms of PD and tries to show how PD progresses.

Stage 1. Mild non disabling symptoms on one side of body only. 

Stage 2. Symptoms on both sides of body. Minimum disability. Posture and gait affected.

Stage 3. Noticeable slowing of body movements. Problems with balance while walking or standing.

Stage 4. Severe symptoms, limited ability to walk, rigidity, cannot live alone.

Stage 5. Requires constant nursing care. Cannot stand or walk or care for self. 

Problems with H&Y and the following ADL scale are that PD affects everyone differently, lack of balance may appear before bilateral symptoms, not everyone gets all the symptoms and both tools look at only the physical aspects of PD. Neither takes into account a person’s mental or emotional state.  

Scale 2. The Schwab and England Activities of Daily Living (ADL) focuses on a person’s functionality and on their ability to perform the necessary daily tasks of caring for themselves. Does not examine the emotional or cognitive effects of PD. It is administered by interview and observation of the patient and like H&Y is based on how PD progresses.

There are six basic ADLs: eating, bathing, dressing, toileting, walking and continence.

SCHWAB AND ENGLAND ACTIVITIES OF DAILY LIVING SCALE

100% = Completely independent. Able to do all chores without slowness, difficulty or impairment. Essentially normal. Unaware of any difficulty.

90% = Completely independent. Able to do all chores with some degree of slowness, difficulty and impairment. Might take twice as long. Beginning to be aware of difficulty.

80% = Completely independent in most chores. Takes twice as long. Conscious of difficulty and slowness.

70% = Not completely independent. More difficulty with some chores. Three to four times as long in some. Must spend a large part of the day with chores.

60% = Some dependency. Can do most chores, but exceedingly slowly and with much effort. 

50% = More dependent. Help with half, slower. Difficulty with everything.

40% = Very dependent. Can assist with all chores, but few alone.

30% = With effort, now and then does a few chores alone or begins alone. Much help needed.

20% = Nothing alone. Can be help slightly with some chores. Severe invalid.

10% = Totally dependent, helpless. Complete invalid.

0% = Vegetative. Swallowing, bladder and bowel functions are not functioning. Bedridden.

Scale 3. MDS-UPDRS is the most comprehensive and includes aspects of Hoehn and Yahr stages and Schwab and England and fully recognizes that PD affects people emotionally and mentally as well as physically. It is administered with the active participation of the PWP.

The United Parkinson’s Disease Rating Scale (UPDRS) was considered the gold standard of PD assessment until it was updated by the Movement Disorder Society UPDRS (MDS-UPDRS) in 2007 which took into account a better scientific understanding of PD and input from PWP and caregivers. The test is devised so it can be self administered and is available on line but permission is needed to reproduce it so I haven’t. It is worth taking. I took it on my own and learned from it. Answering the questions gave me insight into my PD even without scoring the answers. A problem with both the UPDRS and ADL is that they are not specific to Parkinson’s and do not differentiate between PD and normal aging. An elderly friend who doesn’t have PD took them and scored almost as high as I did. I do recommend taking it though. We often aren’t completely honest when talking to doctors. I was more accurate and honest when I self administered it at home.

Then there is the widely used PDQ-39 which addresses quality of life issues not how Parkinson’s progresses. The 39 questions are used to determine such areas as mobility, activities of daily living, emotional well being, stigma, social support, cognitive impairment, communication, and body discomfort. Like the other tests, the PDQ-39 is  available on the web.

A last caution. There are many PD rating tools. These are the three most commonly used. Another big problem with all the tests is how to get an accurate reading because the medicines we take mask symptoms, affect our mood and distort our functional ability. None of the tests include information as to how quickly your PD is progressing so the thing to do is take a snapshot of a test every six months and compare the changes. You are not a test so do not take the tests too seriously. You know where you are at. Happy testing.

Parkinson's And Falling

I fell last night and hurt myself but the pain was secondary to the despair, this is my future, this is what I am in for from now on. I can’t live like this. I tried to get up but couldn’t. It wasn’t the shock, it wasn’t the pain, it was the despair, the immediate and overwhelming despair that got me. The realization that despite all my effort there is nothing I can do to prevent the advance of Parkinson’s. Its got me now and going to get me in the end.

Luckily it happened at home so I could lie on the floor until I was ready to try to get up. First push up on one elbow and come to a sitting position. Good plan but