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.