The Beatles, Parkinson's, And Me

 “HELP”

I need somebody

(Help!) not just anybody

(Help!) you know I need someone”

10 million people living with Parkinson’s need someone to help  discover how to stop the progression of PD and how to cure the disease.

“I never needed anybody's help in any way

But now these days are gone, I'm not so self assured

Help me if you can, I'm feeling down”

PWP experience a wide range of mental and physical symptoms. Anxiety and depression are two of the most common mental health symptoms. Self worth, loss of memory, and dementia are also problems.

“I never needed anybody's help in any way

”But Every now and then I feel so insecure 

My independence seems to vanish in the haze”

The physically punishing symptoms of PD plus the possible psychological damage caused by mental symptoms can affect a PWP ability to perform the activities of daily life and cause serious depression leading to more dependence.

“I know that I just need you like I've never done before”

You know I need someone”

People with Parkinson’s need a dedicated team PD doctors, research Doctors, movement specialists, caregivers, teachers, family and friends, fellow PD people, movement experts, and caretakers to improve the quality of their life and to help make it through each day.

“Help me if you can, I'm feeling down

And I do appreciate you being 'round

Help me get my feet back on the ground

Won't you please, please help me?”                 

I’m feeling down because I have Parkinson’s and it is impacting my quality of life. I shake, at times uncontrollably, I have trouble walking and have to use walking aids - canes, rollers, and two different kinds of wheel chairs. Sometimes I fall due to balance problems. There is nothing that makes you feel more discouraged and uncomfortably foolish than falling down, your ass suddenly going out from under you and your legs, head, and hands sailing off in other directions until you are on the ground hoping that only your ego is hurt.

”I never needed anybody's help in any way

But now these days are gone, I'm not so self assured

Help me if you can, I'm feeling down

And I do appreciate you being 'round

Help me get my feet back on the ground

Won't you please, please help me?”

“And now my life has changed in oh so many ways

My independence seems to vanish in the haze”

Getting back up without help is sometimes harder than falling down.

A can do positive belief helps.

“There's nothing you can do that can't be done

Nothing you can sing that can't be sung

It's easy

Nothing you can make that can't be made

No one you can save that can't be saved

It's easy”

The secret is to get help,

“i get by with a little help from my friends,  I stay high with a little help from my friends. Love, love, love. I just need someone to love,” 

People with Parkinson’s  can lead a healthy, happy, and productive life with a little help from professionals and friends. 

“All you need is love, love, love, love. Love is all  you need."

Thank You Parkinson's

Thank you PD. You made me become me. I couldn’t have done it without you. I was a regular Walter Mitty. I would imagine being born in another country maybe India or Africa. I would look and think the way they did and my experiences and beliefs would be the same as theirs. Sometimes I would fantasize that I was a famous movie star or athlete or artist, a scientist, inventor, or the president. That I could kick the bully’s ass. That I was the guy that got the girl. If I liked a character in a book, oh boy, I was gone for days or weeks at a time. My reality was internal, defined by the wishful thinking of my mind. Then along came Parkinson’s and cut through all my fantasies and made me face reality. Made me accept me as me. I am a person with Parkinson’s, a progressive incurable disease that makes me feel miserable now and is only going to get worse. Now my reality is external, determined by the imposition of physical PD symptoms on my body. 

It started with Restless Leg Syndrome. Then the tremors began. My neurologist said I had Parkinson’s Disease. I went into his office feeling good about myself and came out as a disease diagnosis. I thought I could live my life without ever taking meds. When I had a headache I would get the aspirin bottle, warn the headache that I would take a pill if it didn’t go away and it usually did. I now have to accept, see myself, as someone who will have to take multiple pills every day for the rest of my life.

Movement. This is where my story changes. I was a dancer and loved to perform. An actor and loved to be on stage acting a part, playing a role. Young and healthy, skipping down streets, living life at the highest level. PD gave me a new identity. No longer able to move freely and easily, I am now one of the movement challenged. I am handicapped, needing a walker for uneven terrain and long distance walks and am starting to use a wheel chair. I never imagined, couldn’t conceive of needing a wheel chair to get around.  Feet don’t fail me now.  Let me once again be able to sing and dance down the street just one more time like Gene Kelly in Singing In The Rain.

I now dream of a life without tremors, of not falling, and of being able to walk. I hope for medical breakthroughs to prevent the progression of PD and for a cure. No longer Walter Mitty, I am part of a very real group composed of every person who ever suffered with the miserable disease that is Parkinson’s.

Parkinson's Cure Breakthrough

I often see research reports highlighting a new possible breakthrough in the search to cure Parkinson’s. Most have been about as productive as the search for the Fountain Of Youth and Loch Ness monster or the cure for the common cold. Billions of dollars spent on PD research and so far nothing. Nothing. My neurologist told me that there is so much new research going on that he expects significant new treatments for PD to be available in the next 10 years. The problem is that he told me that eight years ago. So far nothing.

Back in 1817 the good Dr. Parkinson in his “Essay On The “Shaking Palsy” stated “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 PD’s progression.

Researchers have tried to generate neurons by using stem cells to replace neurons lost in neuron degenerative diseases like Parkinson’s which is caused by the death of dopamine cells in the brain. Neural transplantation involves replacing diseased and dying brain cells with new cells that can grow and multiply. Neural transplantation is considered an area of promise but has had mixed results so far. Some patients have improved, others have seen no improvement, and some have developed more complications. A research team was studying the PTB protein which can activate and deactivate genes in a cell. In order to better understand PTB they combined it with a type of connective tissue known as fibroblast and then silenced the PTB gene. They were surprised to find that after a few weeks there were few fibroblasts but many neurons. They had accidentally found a way to turn fibroblasts into neurons. They then found that when they silenced the PTB gene in other types of cells, including non neuronal cells, they could generate neurons.The new neurons grew normally and performed the functions of regular neurons. 

The published study is “Accidental Discovery Leads To Parkinson’s Disease Cure In Mice”. Lucky mice. I am not optimistic that a cure will be found in my time.

Parkinson's And Pain

 

 I have Parkinson’s and I’m in pain. My body aches and I hurt. “Chronic pain is often poorly
recognized and under-treated by health care providers despite being reported as the most common non-motor symptom of Parkinson’s.” Studies report that between 65% and 80% of PWP experience significant pain if they have the disease long enough. Many primary care doctors and some neurologists will tell you that Parkinson’s disease does not hurt. Doctors often attribute PD related pain to normal muscle ache, aging, or arthritis. Most people who have the disease achingly disagree. 

You may not experience pain as an early symptom but it will show up as the disease progresses. Women develop painful symptoms more often and with greater intensity than men The type of pain and its location vary from person to person. It usually occurs or is worse on the side of the body most affected by PD. Researchers define four primary types of Parkinson’s pain: Musculoskeletal pain is the aching or burning pain of muscles and skeleton and is the most common type of pain. It can usually be treated with meds. 15% - 40% of PWP have pain from the tightness, twisting and aching of dystonia and dyskinesia possibly as a side effect of taking levodopa to combat PD. 25% have neuropathic pain that radiates from the nerves. Central pain is sudden sharp often burning pain that occurs for unknown reasons in 10% of PWP.

Although often overlooked, pain caused by Parkinson’s mental, emotional, and psychological symptoms can have a greater impact on daily life and hurt more than the four movement based pains. Parkinson’s mental pain is caused by experiencing the continuous negative emotions, mental anguish, and suffering of a progressively debilitating disease. Can depression, anxiety, and stress be painful? You bet they can. Physical pain is the kind of pain that hurts but emotional pain can break you. Physical pain can usually be quickly alleviated by meds. Emotional pain may not respond to drugs and if it does it may take months and leave you feeling completely destroyed. 

A multidisciplinary team approach for pain management may be necessary to treat PD pain. Each person’s journey with Parkinson’s is unique, and so is his or her experience with pain. Thus, everyone’s treatment plan will be unique. Treatment should begin with a thorough assessment of the persons medical history to determine if the pain is really PD related. The frequency and severity of pain should then be determined by administering a PD Pain Scale test. Levodopa and other PD meds are used to treat many types of Parkinson’s pain. Physical therapy is the most common non-drug treatment. DBS often helps reduce pain. Massage, therapeutic ultrasound, heat and/or ice, stretching and strengthening exercises, yoga, and aerobic activities are additional methods used to reduce pain. None of these therapies is a cure-all. Where there is advanced Parkinson’s there is pain.

PD pain tests are available on the web. Worth taking to get an objective evaluation if you have pain. 

Parkinson's And Aging

It will soon be my birthday and I grow old. Parkinson’s physically aged me and Parkinson’s makes me feel mentally even older. I

grow old and I do wear my trousers rolled. Do I dare to walk upon the beach? Are you kidding. I have enough trouble going from my bed to the bathroom at night. The mermaids, aah yes the lovely mermaids, they still sing their alluring song to me but it is much too much effort to respond. We age. We grow old. Look back, picture yourself young, so innocent and eager to live, not realizing what it meant to be 8, and 15, and 21 and even 30 and 40. Look how fresh and young and beautiful I was and look at me now. The years went by so quickly, the nights were slow. I remember times that were before, people and places that are no more. I didn’t fully understand or appreciate anything as it was happening. I took things for granted but now looking back I realize it was everything. 

 I was so young, innocent and unformed. So much was yet to happen. More than I could have imagined. Life happened. Parkinson’s happened and nine years living with PD has aged me beyond my years. I am thankful though for the wonder and depth of my life and most of all for my three children. I have three. The birth of each one taught me the miracle of life and changed me forever. Now my children have children. I love being a grandfather. Seeing my grandchildren and playing with them makes me feel younger but Parkinson’s limits how I can be with them and soon, too soon, I will not be here to enjoy them. 

I am at a delicate balance point, thinking equally about my past and considering the future. I can either stabilize and enjoy the rest of my life or continue down the path of Parkinson’s progression until … I don’t want to think about it. I’ve seen friends with fully progressed PD and it isn’t pretty. Parkinson’s prevents me from standing straight and sometimes from being able to get up and stand at all. Shaking, bent over, and stumbling with PD. Parkinson’s is a price we pay for life. Do people fade away as they age or is it life that fades away? I disconnect from my surroundings and appreciate solitude more and more. The world left me behind and without really meaning to I left it. The future becomes the present then slowly but too quickly fades into the past as it dims in memory and then is gone.

Parkinson's And Mobility

I was in love with movement. Being able to walk, dance, fly, and travel to far away places with exotic sounding names. Using my body was physically and mentally pleasurable and a good physical workout made me feel high. Then PD took over and mobility became a problem. It seems like I now have to do everything slowly and carefully. Last year I went from walking unaided to occasionally using a cane, then needing the help of a four wheel walker, and now I find myself looking at a motorized wheelchair as a possible future. What happened? Parkinson’s happened, thats what happened.

For more than 70 years I took walking unaided for granted. Walking is the transference of weight from one foot to the other with at least one foot always on the ground. Walking and balance go hand in hand or more accurately brain and foot. PD affects your brain and balance and stability. It was a blow to my ego when I finally had to admit that a cane would help me get through the day more safely and easily. I was reaching out to hold on to supporting structures and having a little trouble getting up from chairs. Going up or down stairs was becoming really tricky so I got a cane which helped so much that I thought my stability problems were solved.

I don’t remember what brought me from a cane to a four wheel walker. Sometimes I shuffled, dragging my feet along the ground with short steps, barely lifting my foot. There were a couple of near falls and there may have been a fall. At one point I just knew that the walker would help and it did. I was happy as my range, speed, and mobility increased.

I’ve had PD for about nine years. The first four or five years were easy. My symptoms progressed slowly. I stumbled once in a while but had no real problems. I had the disease but my symptoms did not limit my activity or enjoyment of life. I actively participated in a PD dance class and even managed to play basketball occasionally. During the next four years the disease progressed slowly but progressively until I became concerned about my stability and finally had to admit that I really was a person with Parkinson’s. 

The wheelchair is a plan ahead kind of thing preparing for what I hope I won’i need in the future. I saw the slope I was on. I was doing the PD shuffle: head hanging down, body corkscrewing into a question mark, small shuffling steps barely lifting my foot off the ground, and question mark posture. 

Mobility is the ability to move freely and easily. It extends us into the world and in a sense frees us from our bodies limitations. Loss of mobility can shake a persons confidence and impact mental and emotional health leading to depression. In order to increase mobility confidence you need to move more. By being as physically and mentally active as possible you can help prevent and even sometimes reverse age and Parkinson’s related changes that affect your mobility. Exercise, exercise, exercise. Keep walking. Walking is a great exercise that is low impact, stretches and develops leg muscles, improves balance, builds endurance, helps breathing, and is good for your heart. Don’t use mobility aids until you need them. They will change your body so that you become dependent on them. The better you are physically, the better you will be mentally.

PD can be bad, very bad. The trick is to be happy and enjoy life. The future could be worse much worse. Attitude is everything.

Parkinson's Can't Sleep 3AM Blues

It’s 3AM and the Parkinson’s I can’t sleep blues are here again. I tried. I really tried. I’ve been up and down, in and out of bed so many times that I could do it in my sleep if I only could sleep. To make it worse I’ve got a toothache. People don’t understand but if my nights are this bad and I get so little sleep how can my days be any better. May as well log on and see who is awake and what is happening in my online Parkinson’s group.

There are a lot of PWP logged on and a fair amount of activity at 3AM. There are three types of comments: positive messages of support for those suffering with PD, what to do when you can’t sleep, and a general discussion of all things Parkinson’s. Positive support messages are popular: prayer, trust in god, meditate, never give up, and that we are Parkinson’s warriors. This really is an important set of messages because the constant battle with PD’s punishing symptoms can cause stress, depression, and anxiety which may result in cognitive impairment. Having a positive attitude and exercising may be the two best things you can do to combat the disease. Life is 25% what happens to you and 75% how you react.

What to do when you can’t sleep is another constant topic of the 3AM club. This takes two forms: how to get back to sleep and activities people do when they can’t sleep. Taking drugs to help sleep is popular: prescription sleeping pills, melatonin, and various marijuana products. Other popular ways to get back to sleep are to move to a couch or recliner then back to bed, eat food, read, play with the computer or watch TV, do a little house work, take four pistachio nut kernels which contain a lot of melatonin, and meditate or use positive imagery to picture yourself in a favorite peaceful place.

Another set of posts comes from the don’t worry be happy PWP who have adapted to not being able to sleep and say things like: Play some ambient music and don’t sweat it. - Don’t worry or stress about not sleeping. You will sleep when you sleep. - I am no longer bound by a day or night schedule and sleep when I am tired whether it is light or dark and am sometimes active in the AM and sometimes in the PM. -  I don’t even try to go to sleep before 3AM - My favorite comment is: I see not sleeping as an opportunity to get up and have a nice cup of hot cocoa with a lot of little marshmallows.

What it coms down to is there are many people with Parkinson’s just like me, sitting in the 3AM dark before the glow of a computer screen, hoping for the light of a brighter better morning.

This post was written at 3AM on nights I couldn’t sleep.

Parkinson's Psychosis

 

Parkinson’s major physical motor symptoms are well known: tremors, bradykinesia (slow movement), rigidity, and postural instability (balance). People are less aware of PD non motor symptoms especially hallucinations and delusions. Parkinson’s Disease Psychosis (PDP) affects 50% of PWP during the course of the disease. Such a lovely disease. It is not enough for PD to turn us into physical wrecks. Symptoms keep developing and PD is not satisfied until half of us are psychotic as well.

Psychosis affects the way the brain processes information causing delusions and hallucinations. Hallucinations are seeing, hearing, or experiencing things that others don’t. Examples are seeing people (living and dead), animals (often rabbits), or objects, hearing voices, music, and sounds not heard by others. Delusions are believing things that are not true. Believing people are trying to steal your money or are talking about you and planning to harm you are typical delusions and can result in paranoia, fear, and violent reactions.

Diagnosing and treating PD Psychosis is tricky. Parkinson’s Disease Psychosis is considered a neuropsychiatric condition because it relates to both neurology (the nervous system) and psychiatry (mental, emotional, and behavioral health). It is a mental health condition (hallucinations and delusions) caused by a nervous system disease (Parkinson’s disease).

Researchers are not certain as to the exact cause of PD psychosis but believe that the side effects of dopamine drug therapy is the main cause and that the natural progression of PD can also be involved. Dopaminergic therapy increases dopamine levels in the brain helping improve motor symptoms in people with Parkinson’s disease. However, increasing dopamine levels can also cause chemical and physical changes in the brain. All current PD medications can potentially cause hallucinations and delusions. 

Psychosis can also be caused by the chemical and physical changes in the brain that occur as a result of the progression of PD regardless of taking dopamine­ enhancing medication. Some of these changes occur naturally as Parkinson’s disease progresses. We cannot predict who will experience hallucinations or delusions but risk factors are age, duration of PD, severity of PD, and how long PD drugs are taken.

Psychosis in PD significantly reduces the quality of life for PWP. Psychotic symptoms are also associated with a higher risk of dementia and is the most important risk factor for transfer to a nursing home. It is associated with reduced survival and increased risk of death. It can also be hell on family, loved ones, and caregivers who have to deal with and witness the mental disintegration of the person with psychosis.

Up to 90% of PWP who are having hallucinations or delusions do not tell their doctor but it is the most important thing that you can do to combat it. Your medical team and caregivers should be aware of all your symptoms so they can best treat them. PD psychosis can be treated with antipsychotic medicine and by reducing or stopping PD medications.

The Parkinson’s Psychosis Rating Scale (PPRS) assesses the severity of specific symptoms of levodopa induced psychosis in PWP. The first five questions identify the type of hallucination (visual, auditory, smell, sense of presence) or delusion. The second five questions quantify the intensity, frequency, and impact of the worst psychotic feature. It takes ten minutes to do and is available on the internet.

Treating Parkinson's

There are three main problems in treating Parkinson’s Disease. Everyone’s symptoms are 

different so everyone’s treatment plan is unique to them, the disease is progressive and only gets worse, and there is no cure.

There is no standard diagnostic test for PD only a collection of symptoms. There are four main motor symptoms - tremor, bradykinesia, rigidity, postural instability - and 10 or 11 secondary motor symptoms - freezing in place, unwanted acceleration, speech problems, micrographia (cramped handwriting that gets progressively smaller)- as well as 10 - 15 non motor symptoms - depression, anxiety, mood changes, fatigue, sleep problems, cognition problems, excessive saliva, etc. According to my neurologist, if you have three or more of the major symptoms you have PD.

Since everyone has a different collection of symptoms and each symptom shows to a different degree, the treatment for each person is different because the symptoms are what are addressed. Then the meds affect each of us differently. A med can help one person, make another hallucinate, and seem to have no affect on a third.

The real problem of course is that PD is progressive and there is no cure. It just gets worse. But in face of that many people with PD live their life as if they have the cure in their hands, they are the cure. They have taken the responsibility of improving their life upon themselves. They are not ignoring established PD medical practice. Seeing the doctor and taking pills is only one part of dealing with PD. I learned more about dealing with PD and managing my symptoms from fellow people with PD than I have from doctors. We are our own best resource. In fact, doctors seem genuinely interested in learning from me.

Most people with PD that I know are their own doctor making decisions as to how to best treat the disease. They consult with their friends in the PD community as well as their doctor. The latest research, how best to deal with and how to treat PD, is an ongoing active discussion topic among PWP.

There is always exciting news about possible cures and new treatments for Parkinson’s but everyday treatment is essentially the same since the 1960’s introduction of levodopa which is converted into dopamine in the brain. Modern research into gene therapy and stem cell treatments is promising but in 1817 in his “Essay On The Shaking Palsy” Dr. Parkinson’s 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.” The good doctor described the disease well but had a little too much faith in the medical communities ability to stop the progression of or cure PD. It’s been 200 years and we are still uninformed as to the precise nature, 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 to enjoy and live your life.

Parkinson's And Chocolate

Parkinson’s has been known and studied for hundreds of years but in many ways not much is known about it especially how to prevent it, stop the progression of it, or cure the disease. Research is often contradictory. The latest uncertainty is about chocolate. Is it good for PD, is it bad for PD, or does not affect PD at all? Interesting fact, people with Parkinson’s seem to like and consume significantly more chocolate than people that don’t have PD even in people where consumption in the amount of other sweets is the same.

What is chocolate and why does it taste so good? The word “chocolate” comes from the Aztec language word xocolātl which is a combination of the words xococ (meaning ‘sour or bitter’), and ātl (‘water or drink’) because for most of it’s existence chocolate was consumed as a drink. Chocolate contains stimulants like phenylethylamine (B-PEA) and caffeine which give you a positive boost and the feel good chemical anandamine. Europeans added sugar and honey as sweeteners. The result is that nearly everyone likes it and the rest is history.

A study by Dresden University of Technology in Germany has suggested that eating dark chocolate on a daily basis could help ease symptoms of Parkinson's disease. It is believed that phenylethlamine, a cocoa compound, can increase the release of dopamine in the brain and help prevent PD symptoms like tremors. 

A word of warning though, the same phenylethlamine may be toxic to dopamine neurons. Some studies cautioned not to eat too much dark chocolate as it is one of the foods richest in B-phenethylamine which may actually cause Parkinson’s. B-PEA could lead to the production of hydroxyl radicals that stress dopamine producing areas of the brain and cause PD.

Other studies report that chocolate neither harms nor is beneficial for PD and that more research is needed. I would volunteer for that clinical trial. It would be a honey of a study and produce one sweet report. So what is a poor PWP to do? If you like chocolate eat it with pleasure.

New Non Invasive DBS

There are now two brain procedures that are FDA approved for use in Parkinson’s: deep brain stimulation (DBS) and non invasive high intensity focused ultrasound (FUS). Deep Brain Stimulation has been successfully used more than 160,000 times to treat people with movement disorders (Parkinson’s, essential tremors. dystonia), neurodegenerative disease (Alzheimer’s), neurological disorders (epilepsy), and increasingly for psychiatric disorders (depression, Tourette’s disease). DBS works by delivering constant electrical stimulation to problem areas of the brain similar in concept to a pacemaker for the heart. It involves implanting electrodes deep within the brain. The amount of stimulation delivered by the electrode is controlled by a pacemaker-like device placed under the skin in the chest. DBS is a physical operation that drills holes in you head and inserts electrodes into target areas deep within the brain as a first step. This part of the procedure is done with the patient conscious so they can answer questions and respond to instructions by the surgeon. The second part of the procedure involves inserting a neurotransmitter, usually just below the collarbone, that sends electrical pulses to the electrodes through wires running from the brain under the skin of the head, neck, and shoulders to the transmitter.

I’ve had Parkinson’s  for eight years and would like the benefits of DBS but am afraid of the operation. Drill holes in my head, stick electrodes in my brain, insert a battery pack transmitter in my chest, and run wires inside my body - you have to be kidding, definitely not for me, too scary. I know it’s helped a lot of people but no thank you. I pass on DBS. That is until now because in 2018 the FDA approved a new non invasive DBS for use with PD tremors and PD related dyskinesia that does not benefit from medicine.

Focused ultrasound is a non-invasive surgical procedure that uses ultrasound waves to destroy brain cells in the basal ganglia that cause movement problems. FUS is FDA approved to treat Parkinson’s tremors and is in clinical trials for dyskinesia (uncontrolled, involuntary movements that can develop with long-term use of levodopa). MRI brain imaging is used to precisely guide and direct high intensity focused ultrasound waves to destroy target cells deep in the brain that cause movement problems without harming non target tissue.

Focused ultrasound is a one step procedure that is non invasive and does not require putting electrodes in the brain, batteries that need replacing or recharging in the chest, or wires that connect them and does not need doctor office visits for programming. It uses MRI imaging to guide ultrasound beams to destroy brain cells that cause tremor without requiring anesthesia. Ultrasound is not reversible because it destroys brain cells. The problem with focused ultrasound is that it can now be performed on only one side off the brain meaning it eases symptoms on only one side of the body. When done on both sides it caused problems with speech, swallowing, and cognition. Unlike DBS, FUS does not require any maintenance. There are no wires, electrodes, or batteries, and it does not need repeated doctor visits for programming. FUS is new. We do not know the long term effects. DBS has been around for twenty years and is well tested and known. It usually benefits PWP for about ten years.

Both DBS and FUS help alleviate symptoms. What we really need is a cure.

Famous People With PD

 

Neurological disorders are now the leading cause of disability. Parkinson’s disease is the fastest growing disability. More than 10 million people worldwide have been diagnosed with Parkinson’s. Some as early as 20 years old others not until 80. Researchers believe the number of people with PD will double by the year 2040.

Michael J. Fox, Actor, Parkinson’s Activist, diagnosed in 1991 when 29 years old

Muhammad Ali, World Champion boxer,  PD Activist, diagnosed in 1984 at age 42 

Bhumibol Adulyade, King of Thailand, when diagnosed not known

Alan Alda, Actor, diagnosed in 2015 at age 79 

Roger Bannister, Champion Olympic Athlete, diagnosed 2011 at age 81

Margaret Bourke-White, Photographer, first celebrity to reveal PD diagnosis in 1952 at age 48 

George H. W. Bush, 41st US President, diagnosed in 2012 at age 88

Michael Richard Clifford, Astronaut, PD Activist, diagnosed in 1994 at age 42 

Salvador Dali, Artist, diagnosed in 1980 at age 76

Neil Diamond, Musician, diagnosed in 2018 at age 77

Francisco Franco, Spanish Dictator, diagnosed in 1965 at age 73

Kurt Gibson, Baseball Player, PD Activist, diagnosed in 2015 at age 61

Billy Graham, Evangelist, diagnosed in 1993 at age 75

Brian Grant, Professional Basketball Player, PD Activist, diagnosed in 2008 at age 36

Chester Himes, Author, when diagnosed not known

Ian Holm,  Actor, diagnosed in 2001 at age 70

Jesse Jackson, Civil Rights Leader, diagnosed in 2015 at age 74

Dave Jennings, Professional Football Player, diagnosed in 1996 at age 44

Ba Jin, Chinese Author and Political Activist, diagnosed in 1983 at age 79

Pauline Kael, Film Critic, diagnosed in 1982 at age 63

Deborah Kerr, Actress, diagnosed in 1992 at age 71

Gene McCarthy, American politician, when diagnosed not known

Mao Zedong, Chinese Revolutionary Leader, diagnosed in 19710 at age 78

Ozzy Osborne, Musician, diagnosed in 2019 at age 70

Pope John Paul II, Pope, diagnosed in 1991 at age 70

Ben Petrick, Baseball Player, diagnosed in 1999 at age 22

Davis Phinney, Cycling Champion, PD Activist, diagnosed in 2000 at age 41

Vincent Price, Actor, diagnosed in 1990 age 79

Sir Michael Redgrave, Actor, diagnosed in 1972 age 64

Janet Reno, US Attorney General, PD Activist, diagnosed in 1995 at age 57

Linda Ronstadt, Musician, diagnosed in 2012 at age 66

Charles Schulz, Created Peanuts, diagnosed in 1975 at age 53

Terry Thomas, Comedian, diagnosed in 1971 at age 60

Glen Tipton, Musician, diagnosed in 2008 at age 61

Pierre Elliot Trudeau, Canadian Prime Minister, diagnosed in 1996??? at age 76

George Wallace, American Politician, diagnosed in 1992 at age 73

Robin Williams, Actor, diagnosed in 2014 at age 63

Parkinson's Self Care

You are a doctor, your own doctor. Parkinson’s demands it.  Realizing that you have the disease

is the easy part. It’s not subtle. After a while you can’t ignore it. Knowing what to do about it is a little harder. Parkinson’s is a full time disease demanding 24 hour a day full time care. Symptoms and how you feel can be different every day often changing hour to hour and sometimes by the minute. It requires the full time care of a full time doctor. You are that doctor. You are your own personal doctor by necessity.

Every PWP has a different set of symptoms and each symptom shows to a different degree. Therefore the treatment each person needs is unique because the symptoms are what are addressed. Then the meds affect each of us differently. A med can help one person, make another hallucinate, and seem to have no affect on a third. You are the person who best knows and understands what helps and what doesn’t. Therefore many PWP have taken the responsibility of dealing with the disease and improving their life upon themselves. They are not ignoring established PD medical practice. Seeing the doctor once or twice a year for an hour and taking pills is only one part of dealing with PD. The real work is trying to minimize the daily impact and misery of the disease by taking responsibility for the day to day active management of PD.

Self care does not mean taking care of your physical, emotional, psychological, and spiritual health by yourself. It is one aspect of a collaborative management approach to PD in which patients, caregivers, and healthcare practitioners all work together toward shared specific goals. It is a full time job, not to be taken lightly. It requires taking the active management of the disease and symptoms upon yourself and making continuous adjustments in order to minimize the affect of PD. You manage the disease instead of it managing you. 

Become expert at self care. Track your symptoms, when they occur, what makes them better and what makes them worse. Notice when you feel good. Write it down. Look for patterns. Check in with yourself throughout the day and make adjustments as needed and see if they help. Discuss what you learn with your neurologist and other PWP. Make your home into a safe place where you can feel good when things are bad. Learn to communicate your needs to those around you. Don’t keep them bottled up inside. Surround yourself with good people that you can go to and count on when things are bad. The PD community understands what you are going through and can help. I have learned more about dealing with PD and managing my symptoms from fellow people with PD than I have from doctors. We are our own best resource.

The real problem of course is that PD is progressive and there is no cure. It just gets worse. In face of that it is up to you to live your life as though you have the cure in your hands, you are the cure. Take responsibility for improving your life upon yourself. You are your own best resource. My doctor seems genuinely interested in learning what I do to survive. 

Finally, plan for the future in order to enjoy and make the most of life at any age and stage of PD. This may sound a little touchy feely but what you have to do is understand and accept and love yourself as you are now, not hang on to what you were before PD. Your world changed. Parkinson’s will take you places you haven’t been before and challenge you in ways you weren’t challenged before. Better get ready. The train is coming.

 

Parkinson's Misery

Misery is a major Parkinson’s symptom not usually mentioned in PD medical literature. PD misery is not an early symptom often taking a few years too show. When present it can be worse than the main physical symptoms of tremors, slow movement (bradykinesia), muscle rigidity, impaired posture, and poor balance. They are physical symptoms that make the activities of daily living difficult but Parkinson’s misery makes your life … well really miserable. There is no better word for it. What  exactly is it? 

People who do not have the disease ask me to describe PD misery but no matter how hard I try they don’t get it. They understand the words but the only way to fully comprehend it is to have the disease and endure the suffering and distress knowing there is no cure and that it is only going to get worse. Let’s be clear there is nothing noble or redeeming about “the turbid ebb and flow of Parkinson’s misery.” It has neither hope nor “joy, nor love, nor light, nor certitude, nor peace, nor help for pain.” You have to experience it to know it and each PWP experiences it a little differently.

PD misery is both physical and mental. Physically the misery feels like being imprisoned in your own body, trapped in your symptoms without possibility of relief or escape. It is an uneasy feeling that something is wrong with you and there is nothing you can do to correct it. The emotional reaction adds to and intensifies the physical symptoms. Misery comes and goes with varying intensity. Basic misery is when your body feels out of sorts and every part of you feels bad. Full blown misery is when anxiety kicks in as well and the misery level moves up several notches and the discomfort, unease, distress, and suffering increase to a torment. It is not always present but when both the physical and mental are in full bloom it is the worst of the worst and completely defeats all my good intentions and resolutions to fight Parkinson’s and not give in to the disease. It is stronger than I am.

Misery has a mind of its own and like all PD symptoms affects each of us differently. I can’t predict when or why it comes and don’t understand why it lessens and leaves. I was having a decent week. My symptoms were manageable and no misery. I had a good nights sleep followed by an enjoyable day when for no discernible reason the full blown misery settled in, laid me low and took over. It tormented me for hours and then mercifully left only to return again and make the rest of the day hell.

What helps? Not much once misery sets in but I think you can help prevent it to a degree by being socially, intellectually, mentally, and physically engaged. My PD seems to lessen when I am with people and I sometimes forget that I have the disease. The same is true when my mind is occupied so feed your brain. Accept that you are miserable so it doesn’t turn into anxiety. Meditate and breath. Take slow deep breaths to relax. Light exercise sometimes helps if I am able to do it. Exercise is my friend. It makes me feel healthy. PD affects me less when I feel physically okay and exercise is the one thing you can do to slow the progression of the disease. Showers, breathing slowly and deeply, walking, old peaceful black and white movies. The understanding and support of family and friends and sleep, wonderful refreshing sleep, if I can.

Parkinson's Basics

More than 10 million people worldwide have Parkinson’s disease. 60,000 people in the US and 10,000 in the UK are newly diagnosed each year. Four percent are diagnosed before age 50 (early onset). Men are 50% more likely to get PD than women. Numbers will increase due to an increasingly aging population.

WHAT IS PARKINSON’S?

Parkinson's disease (PD) is a progressive neurodegenerative brain disorder resulting in loss of motor function that is caused by the destruction of dopamine producing neurons in the substantia nigra area of the brain.

WHAT ARE THE SYMPTOMS?

The four main physical wsymptoms are tremor, bradykinesia (slow movement), rigidity, and postural instability. Tremor is the most noticeable symptom and loss of balance leading to falls one of  the most dangerous. There are also many non motor symptoms such as depression, anxiety, mood changes, fatigue, sleep problems, and cognitive difficulties. We are snowflakes. No two PWP have the exact same symptoms to the same degree.

HOW IS PARKINSON’S DIAGNOSED?

There is no definitive test for PD. If you have two or more major symptoms your doctor will make a diagnosis based on your medical history, a review of your signs and symptoms, and a neurological and physical examination. He may prescribe levodopa and a positive response to the drug will help confirm the diagnosis. A DatsScan cannot confirm that you have PD because it does not distinguish between PD and other forms of parkinsonism. One study estimated that doctors fail to diagnose or misdiagnose Parkinson’s up to 35% of the time.

WHAT CAUSES PARKINSON’S AND WHO GETS IT?

The cause of PD is unknown but researchers believe that both genetic and environmental factors are involved. Environmental 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 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.

Specific genes have been linked to the disease. There are causal genes and associated genes. Causal genes occur in 1 - 2% of 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 neither type gene may get PD due to environmental causes. 4 - 9% 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 exposure triggers 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.

CAN PARKINSON’S BE PREVENTED? 

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.

HOW IS PARKINSON’S TREATED?

Once you’ve been diagnosed, you should work with your doctor to develop a comprehensive treatment plan to manage your symptoms and improve your quality of life. There are a lot of different treatment options out there. Unfortunately, there’s no medication or treatment right now that can reverse the effects of the disease or cure it completely.

The most common medicine used to treat the symptoms of Parkinson’s disease is levodopa, which was developed in the 1960s and works by synthesizing into dopamine in the brain. When levodopa is taken on its own, it may cause nausea so it’s usually taken with carbidopa (benserazide in the EU), which prevents side effects and increases its efficacy. The levodopa/carbidopa combination is available in many forms and strengths. There are many other prescription medications available to lessen PD symptoms. If your symptoms do not respond to these medications, surgical options may be a possibility. These surgical options involve implants that either stimulate the brain’s movement center or provide a steady flow of levodopa/carbidopa. Deep-brain stimulation is available to help patients who experience intense tremors and dyskinesia as a side effect of their medication.

WHAT YOU CAN DO.

It is up to you to fight back. So much of how you fair with the disease is up to you. Be an active participant with your doctor to develop the best comprehensive treatment plan to improve your quality of life and suffer as little as possible. Learn all you can about the disease so you can make intelligent decisions. Exercise as much as possible. Exercise is believed to slow the progression of the disease and also helps you feel better. Try to be active and engaged with life. Get involved with the PD community. Your local PD community is a wealth of information and support. Be good to yourself.

Parkinson's And Balance

Parkinson’s symptoms are uniquely problematic. They are, in general, punishing and usually only get worse. Get one slightly under control and another pops up. I am experiencing several PD symptom indignities now but one I am very concerned about is my balance which is getting worse. The morning starts out okay but I become less stable as the day progresses until at night when I am so tired that I find myself bouncing off surfaces and careening around the room like a pinball until I realize that it's safest to get in bed and try to sleep. 

What is balance? How do we balance? Balance is the ability to maintain the body’s center of mass over its base of support. It is dependent on good posture and body alignment, good vision, and a brain that works well. Balance requires the brain to integrate and respond to many sources of information received continuously and simultaneously from the rest of the body while moving and when standing still. Information to our brain from our muscles and joints tells our brain such things as where we are in space, the type of surface we are on, and our direction and speed of movement. The brain then integrates everything utilizing executive functioning (planning, sequencing, organizing, problem solving, initiating activity) and responds by keeping us from falling. Wonderful when it works but balance is a problem for most people with PD because PD decreases communication between the brain and muscles and joints that tell the brain how we are moving. The older you get and the longer you have PD the worse your balance becomes.

My neurologist said that balance cannot be treated medically. You are on your own. His prescription was exercise and calcium. Tai Chi is one of the most recommended forms of exercise for maintaining and improving balance because it involves a constant shifting off weight from one foot to the other and from one part of the body to another. Tai Chi also teaches you to land heel first and then roll your foot down which prevents stubbing your toe and tripping. All exercise is good though. Walking is wonderful. Large movements like power walking and taking big steps can improve balance and retrain your brain to have a larger internal movement experience as your new normal resulting in larger external movements that carry over to all daily activities.

The calcium is to strengthen your bones not if but when you fall. If you have PD and balance problems you will fall. The only question is when and how badly. 60% of PWP have balance problems which may lead to falls. Loss of balance resulting in falls is the number one cause of injury and death from injury among people age 65 and older. 

In addition to motor dysfunction symptoms there are a number of non-motor symptoms that may impact balance including psychological factors (depression), sleep problems, additional medical problems, and trouble caused by some prescription medicines (sedatives, antidepressants, antihistamines, blood pressure medications). Belief is key. You will fall if you think you are going to. Confidence can improve balance ability. The more you think you are going to fall the more likely you will. Fear of falling is a risk factor for postural stability. Grab bars everywhere. I now consider the invention of grab bars equal to the discovery of the wheel. Be careful. It’s a rocky world out there.
The Berg Balance Scale is available on the web. It is self administered in 10 minutes. Worth doing to get a base line and then repeating on a monthly basis to see the change.

Parkinson's Never Sleeps

Parkinson’s is like rust, it never sleeps. Slowly and inexorably progressing in all its ways, Eroding my health and affecting the quality of my life more and more every day. Progressive, degenerative, incurable, neurological brain disorder. Moments of feeling okay interspersed with varying degrees of discomfort while getting a little worse each day.

At first it wasn’t too bad. I thought I could handle it. My right hand shook a little but I didn’t mind. It took Restless Leg Syndrome to get me to the doctor. I couldn’t lie in bed at night. My legs were jumping up trying to run around the room with me chasing after them and escorting them back to bed only to immediately bounce back up again. What is going on here, what’s happening to me? The doctor told me I had PD, prescribed some meds, and said come and see me if it gets worse. Of course it got worse, not too bad at first, but slowly and progressively developing until it completely changed my life.

One year later I thought this isn’t too bad. I can handle this if it stays this way. RLS under control with meds, right hand shakes a little more, meds make my head feel a little funny, but my movement and balance are good and I can take care of myself. It stayed that way for two years and then:

Three years later I became James Bond’s favorite bartender. All my drinks were shaken not stirred. Tremors in both hands and sometimes my legs and body as well. My body ached and had painful leg cramps many mornings. I began to have trouble with balance and stability and moved in one of three modes: normal movement most of the time, the PD shuffle when tired, and sometimes late at night and especially when dark I careened around the room like a pinball. Little old ladies wanted to help me while shopping. Kind people offered me their seat on the bus and I was not embarrassed to take it. The effort to accomplish the every day and necessary - shaving, bathing, eating, brushing my teeth, putting my shoes on - became more difficult. PD is a physical disease that takes an emotional toll. The effort involved to do daily tasks slowly wears you down over time. It’s a double whammy. PD affects the bodies ability to function and also robs you of the energy necessary to perform tasks. Do the dishes - are you kidding , I’m just happy I had the energy to make dinner. But as my body shrinks in on itself and my abilities diminish my spirit grows stronger. Sense of humor intact.

Seven years after diagnosis with PD and I now use a walker when going outside and sometimes late at night to get around the house. It is not absolutely necessary but it makes it easier especially now that my balance is not as good and my right leg freezes so I can’t move it. Sleepless nights make for fatigued days. It takes two or three times longer and increased concentration to accomplish simple tasks that I once did without thinking. I am concerned about the possible future side effects of the meds as I take more to combat more frequent and powerful off periods. My mind is still good but I worry about how much longer I can perform the necessary activities of daily living without requiring help. Growing old is part of life and we all suffer the slings and arrows of aging but I miss who I was and am saddened by what I am becoming.

What will the future bring? I don’t know. I accept that PD is progressive and will get worse but believe I have some influence in determining the progression of the disease. What am I doing to deal with it? I learn all I can about PD so I can make intelligent decisions to best deal with it. Partner with my doctor to make the best comprehensive medical plan for my unique symptoms. Take my meds as prescribed and let my doctor know how they are working. Exercise, exercise, exercise as much as possible as it is the only thing we know of that can slow the progression of the disease. The more I exercise the better I feel. Be socially involved and engaged with life and the PD community. Appreciate as much as possible the good things I have. A healthy mind and positive attitude is the greatest asset in fighting the disease.