Parkinson's Ass And Legs

Since getting PD, a different me inhabits me that takes getting used to. Sometimes you can only laugh at it and what it does. Take my butt. Not the but that is a conjunction that connects two clauses to form a sentence but the butt that is my ass, the part of the body I sit on and in sitting lies the problem. My butt is fine with sitting but it forgot how to get up. I relax in a chair, read a good book or magazine, and then try to stand and my butt acts like an immoveable weight glued to the chair. If the chair is soft and I sink in so my butt is lower than my knees forget about getting up.

I’ve learned to do side reverse butt swings to gain the momentum to get up. I call it the PDHP, the Parkinson’s Hokey Pokey. Swing the right butt cheek

Parkinson's Fall Prevention

It happened agin. Parkinson’s is bad enough as it is. Falling makes it dangerous. One minute I was standing. The next I was on the floor on my back. Luckily I wasn’t hurt badly, just shaken and a little stiff but a number of PD people I know have recently suffered fall related injuries. What counts as a fall? Does leaning back against a wall to prevent yourself from falling or plopping down onto a chair or bed to stop yourself from hitting the floor? Does a fall require a trip to the ground often resulting in injury? A friend of mine says no bruise, no blood, no break, no ground means no fall. It sounds good but I disagree. A fall is any unintentional change in position where you end up on a lower level or the ground. Fall backs are falls and more important they are warnings that if listened to can help prevent injuries. Face it, you would have fallen if the wall or chair had not been there to catch you. Admitting that you have balance problems and determining to do something about it is the first step in fall prevention.

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. Wonderful when it works but balance is a problem for most people with PD.

Most people with PD have balance problems and about 70% fall. Two thirds have recurring falls, and fall rates are twice that of same age people who do not have PD. Falls are the number one cause of injury and death from injury among people age 65 and older. In 2015 I posted another blog about falling. It is my most widely read post, the one with the most hits. At that time I wrote to my neurologist and asked “My balance is slowly getting worse over time. I exercise daily, do balance specific exercises, and Tai Chi. Is there anything else I can do?” He replied. “It is difficult to treat balance with medication. It works best for stiffness and tremor. The exercises are the best way to deal with balance so please continue with them,” In other words, nothing he can do and good luck to you. Come on doc, that is not good enough. Falling can be prevented. There are things that can be done to prevent or at least reduce falling.

There are many web sites that have fall prevention and balance exercise videos and a number of web sites that explain how to prevent falls and improve balance so I will only mention a few things. Don’t wait until you fall. Admitting you have a problem is the first step in prevention. Start now, even if you are not yet having balance problems. Fighting PD is about doing what you can to delay the progression of the disease. Safeguard your home environment for fall safety. Darkness promotes falling. Install night lights, grab bars, and no skid rugs throughout your house. Do balance and fall prevention exercises. Tai Chi is particularly recommended to improve balance as is a program consisting of balance exercises, light stretching, strength and gait exercises. It is also important to learn how to best protect yourself when you do fall.

Some things to consider. PD meds may make you unstable. Let your doctor know if you think your meds are making you lose your balance. The right medicine regime taken correctly is important. Try to maintain a healthy mindset. Depressed people have a greater incidence of falling. I know it’s hard but try to be positive and don’t unnecessarily think you are going to fall. You will fall if you think you are going to. Prepare your home environment for safety and ease of use. Use assistive devices. I just bought the best looking quad cane I could find. Calcium.

Be careful, be careful, be careful. Learn what not to do as well as what to do and learn how to coexist with PD. Don’t ignore or deny the problems PD is causing you. So much of surviving Parkinson’s is up to you.

Parkinson's And Humor

It is believed that people who laugh are happier, healthier, and live longer livess.

Having an incurable disease that makes you feel miserable and gets progressively worse over time should make it hard to laugh but I’m amazed by the courage, heart, sense of community, and surprisingly by how much laughter there is in the Parkinson’s community. It’s not depressing humor, not gallows humor. It mostly pokes fun at having PD and the PD condition. I think it comes from accepting the reality of what is. Acceptance seems to reduce suffering just as dwelling on the negative seems to increase stress and pain. Making fun of your problems signals acceptance and implies that you are in control of and superior to the disease.

I’m James Bond’s favorite bartender. All my drinks are shaken not stirred.

The punch line of many jokes or discussions is “what do you expect I’ve got Parkinson’s”. It is often said when forgetting to do something or not being able to remember a word that is on the tip of your tongue even though forgetfulness is not thought of as a PD symptom. Parkinson’s is no joke and PD is a heavy weight to carry but humor distances us from our problems and lightens the load.

What do you call a pick pocket with Parkinson’s? Either a jailbird or poor.

The terrible truth of Parkinson’s is that it is not going to get better. It is not going away and probably going to get a lot worse. Humor makes PD easier to live with. It is a defense mechanism that makes PD less painful. Resistance magnifies pain and suffering. Acceptance lessens suffering and allows us to better enjoy life now and realistically prepare for the future. Humor helps distance us from the disease and better manage it. It lightens the load and eases the pain.

What does a carpenter with Parkinson's make? Shaker furniture.

Laughter strengthens your immune system, boosts mood, diminishes pain, and relieves stress. Nothing works faster to make you feel good than a good laugh. Humor lightens burdens, and inspires hope. Laughter makes us feel happy, relieves physical tension, and anger. It lessens pain. Humor is contagious. When shared, it increases intimacy and creates a bond with others. Humor unites the joker and his audience, in this case, the PD community. Humor is a way of saying I’m okay and acknowledging we are in this together. Laugh with other PWP. It promotes hope.

What is a Parkie’s cell phone is automatically set to? You guessed it - vibrate.

Okay, my jokes aren’t so funny. I tried. My PD friends would have laughed in support or at least smiled. That is the point. We support each other even when the PD is bad and nothing is funny. It bonds us and helps us go on.  Humor is communal. It happens when you are with other people so don’t be alone with the disease and let me know if you have better jokes.

Typist wwwanteeed. PPParkies nneeed nottt apppplly.

Parkinson's Miracle Cures

“New Revolutionary Treatment For Parkinson's Disease 90% Success Rate. We Look Forward To Helping You Get Your Life Back. Send Money To …”

Hope alternating with despair can really do a number on you especially when you have a progressively degenerative incurable disease called Parkinson's that prevents you from controlling your own body and makes you feel miserable. Sinemet and the other medically prescribed PD drugs lessen some symptoms but don’t stop the progression or cure the disease and they may cause serious side effects. Consequently many people seek hope in alternative treatments. I understand why there is a healthy concern regarding the benefits and side effects of prescription medicines but I don’t understand the unquestioning acceptance of the benefits and safety of “natural” or health food store remedies. 

Alternative meds and supplements are

Parkinson's And Dance

Dance for PD® is great. The teachers are great, the movement exercises are great, the people with PD

that attend the class are great, I’ve attended classes in two different cities and both were great. I’ve used the word great enough for you to get the point so I’ll just say it is a great program that makes me feel physically and emotionally healthy and may help slow the progression of the disease by helping improve my balance, flexibility, and coordination. My intent with this post is to thank the Dance for PD® program and encourage everyone with PD, no matter how developed the disease, to try a class if there is one near you. You don’t have to be a dancer to dance with PD.

Dance for PD® is a non-profit collaboration between the Mark Morris Dance Group and the Brooklyn Parkinson Group. In 2001, Olie Westheimer, the Founder of the Brooklyn Parkinson Group, asked the Mark Morris Dance Group to provide a rigorous, creative dance class for members of her Parkinson’s group. “She knew from her own dance background that professional dancers train their minds and bodies to execute difficult movement with confidence, power and grace. In doing so, they develop cognitive strategies that she thought could be naturally beneficial and enjoyable for people with Parkinson’s.” People with PD suffer from a loss of balance and inability to control movement. Dancers use their knowledge of dance to control their body. Dancers know how to safely stretch and strengthen muscles and about balance and how to enable movement. “The Dance for PD® program is built on one fundamental premise: professionally trained dancers are movement experts whose knowledge is useful to persons with PD.” Dance classes for people with Parkinson’s are held in many cities and locations.

I’ve attended PD dance classes in two different locations and both were very similar in structure and lead

by very competent and fully dedicated teachers. The class begins with participants seated in chairs performing a sun salutation that exercises the upper body and arms. This is followed by each person introducing them self by saying their name and making a movement gesture that is repeated by the group. In some ways the class progresses like a traditional ballet class beginning at the barre, in this case in chairs, and exercising the feet, arms, and trunk and doing coordination exercises, then standing exercises while holding on to a chair including combinations of steps in place and finally taking the combinations across the floor. The class ends in a circle with the dancers acknowledging each other.

My  class is lucky to have live piano accompaniment which makes moving easier and more enjoyable. Music has the ability to inspire non dancers to create beautiful dance movements. Movement is the center of all things. Dance is that movement which is at the center. Parkinson’s is with me every moment of the day and affects every move I make. When I plug into the music and dance I become centered. I forget that I have Parkinson’s and am able to move freely. The Dance for PD® class adds a sense of joy and well-being to my life. The class eases the Parkinson’s, makes it pleasurable to move again, and provides therapeutic benefits that last long after the class ends. 

The teachers are great, the music is great, but it is the people that make the class special. People with

Parkinson’s have an in common shared concern that medical professionals can do little to help so we turn to each other. The class provides a social setting where people with PD can meet, learn from each other, support each other, exchange information, and laugh together. Sharing the disease makes it easy to connect. A group of us get together after class to create a PD related performance and have produced a vocal piece and a web site that is a repository for creative work by people with PD. Mostly though we discuss all things PD. I have learned more from people that have PD than I have from medical sources. One thing I learned is that exercise may be one of the most effective ways to combat PD. Thank you MMDG and all the great Dance for PD® teachers and participants.

The above short video shows the dance class practicing a Mark Morris Dance Group piece set to music by J. S. Bach.

Marijuana and Parkinson's

I’m an old time toker but not a recent smoker. Several friends with Parkinson’s are though and as I live in a city where it is easy to get legally I know a number of people who are lighting up to see if it helps. They are using marijuana with different strengths and in different forms. So does marijuana help Parkinson’s? The web has many individual testimonials as to the benefits but there is no solid clinical research verified evidence that marijuana prevents, cures, or stops the progression of the disease. Some reputable clinical trials say no, some say maybe but none found that marijuana definitely lessens PD symptoms or has a long term positive affect on the course of the disease. All say further study is needed. There is some evidence that marijuana does help better manage some symptoms though. So the real answer is yes or no and in a round about way maybe. Take your pick. The results, as with most things dealing with PD, are mixed and different for each person.

So lets turn to individual experience. I have a number of friends
who tried it. Only one said its made his symptoms of tremors, balance, posture better although some said they were more relaxed and less rigid. The most coherent response, that is, the response answered when not high is, “Marijuana didn’t prevent my symptoms. It didn't make my tremors or balance better but it made me more relaxed and better able to control my symptoms.” It doesn't stop or lessen the tremors from happening but helped people to be aware of and relax their muscles so the shakes weren’t as bad. Balance may have been worse and some people experienced paranoia and anxiety which prevented them from using. The consensus among friends is that marijuana doesn’t lessen any symptom directly except rigidity but it helps them deal with and better control some symptoms.

Many people, both those with and without PD, report that marijuana helps them sleep. Medical studies show that CBD helps people fall asleep and stay asleep. THC studies have mixed results but some people say that THC helps them sleep and others that it keeps them awake. Insomnia is punishing so I say use whatever gets you through the night. Tetrahydrocannabinoil (THC) and cannabidiol (CBD) are two of the many compounds found in the cannabis plant. The main difference between them is that THC is psychoactive and gets you high and CBD doesn’t. 

CBD is reported to help with Parkinson’s fatigue and increase energy while THC imitates the effects of the natural neurotransmitter anandamide which impacts sleeping and eating habits. Some people prefer CBD for day use and THC for night. Some prefer a mix of CBD and THC and low doses seem to be preferable to high doses. The oils, tinctures and edibles are longer lasting than smoking or vaporizing which are faster acting. Some reports say that THC enhances pharmaceutical levodopa and CBD lessens the effect. Consistent info is vague and results seem to differ with each person. THC and CBD have different properties and seem to work a little in concert and a little in opposition. Find what works best for you. Like with any medicine it is best to get a lab tested reliable product and know what you are putting in your body.

Following the heroic example of the most dedicated researchers and scientists like Marie Curie, Jonas Salk, and Dr. Jekyll and Mr. Hyde I decided to self test so I smoked a joint or two to see if it helped. My tremors didn’t go away but my appetite increased so I ate some marijuana candy, a couple of dope brownies, a whole pizza, a chocolate milk shake, and another one of those tasty marijuana brownies for dessert. Still shaking but feeling no pain and very full I decided to take a nap and so inhaled a lovely aromatic  indica THC vapor and promptly fell asleep. I awoke several hours later and feeling a little hungry noticed an uneaten brownie …

Does Parkinson's Cause Dementia and Alzheimer's

Cognitive impairment, Dementia, and Alzheimer’s.  In 1817, when James Parkinson first described the “shaking palsy” he said that, “the senses and intellect were uninjured.” While he was correct in many of his assertions, Dr. Parkinson missed the mark with this one. Statistics show that throughout the course of the disease 90% of people with PD will experience some form of very mild to acute cognitive change beyond what is normal for their age. Up to 50% will suffer from mild cognitive impairment and 40% will suffer from dementia but not all people with PD will experience them. Mild cognitive impairment does not affect one's ability to carry out activities of daily living whereas dementia refers to a person that has multiple cognitive problems that significantly impact activities of daily life and has trouble retrieving memories. Alzheimer's is the inability to encode new memories. PD researchers now believe that mild cognitive changes may be present even before diagnosis. Dementia usually develops many years after the initial onset of PD and is more common with advanced disease. Many people with PD fear cognitive impairment, dementia, and Alzheimer's more than the physical symptoms of the disease because they are seen as the end of meaningful life, loss of independence, and loss of self.

What is cognition? Cognition is a general term that refers to the mental abilities we use to process information and apply knowledge. These mental processes allow us to perform daily functions such as paying attention, solving problems, communicating, remembering, and how to perform certain tasks. When people talk about cognition, they often focus on memory but memory is only one aspect of cognition. Rather, the study of cognition recognizes "cognitive domains" which reflect different types of cognitive processes. Parkinson’s typically affects three main cognitive areas: Executive functioning which includes concentration and attention, multitasking, reasoning, problem solving, and complex planning; Language which includes difficulty finding the right word or feeling tongue-tied; Memory which involves trouble retrieving memories that have already been encoded. And then there is bradyphrenia, meaning slow brain, a cognitive impairment common to Parkinson’s. Slowing of the brains processing speed is especially noticeable when switching from one task to another. So be patient with people with PD, we may need a little extra time.

The causes of cognitive impairment in PD are not fully understood but are believed to be related to the same causes of PD motor symptoms namely the death of nerve cells which result in changes in brain chemistry. Psychological problems like depression and anxiety and some medications can also affect cognition.

Can cognitive impairment be prevented? Regular physical exercise, whether aerobic, resistance or balance activity is believed to reduce the risk of dementia, including Alzheimer’s, by as much as 50%. A review of academic studies by researchers at the University of Edinburgh states that more than three quarters of cognitive decline is accounted for by lifestyle and other environmental factors including level of education. The review also states that physical exercise is the most effective way to ward off cognitive decline in healthy older people and reduce the risk of dementia and Alzheimer’s. Exercise may turn out to be the best medicine available for PD.

How does exercise protect against dementia? The brain’s hippocampus and prefrontal cortex play critical roles in memory formation and complex thinking and are responsive to physical exercise. Their deterioration is a predictor for Alzheimer’s disease. Higher fitness levels correlate with an increase in size of the hippocampus and the prefrontal cortex. This means that exercise can help our brains continue to grow and head off cognitive decline.

The golden rules for reducing the risk of cognitive decline, dementia and Alzheimer’s:

1 Exercise regularly.

2 Maintain an active mind. 

3 Eat healthy and maintain a healthy weight.

4 Don't drink too much alcohol.

5 Don’t smoke.

6 Maintain a healthy blood pressure.

7 Be socially active. (I find that I am the sharpest and least aware of my PD when I am socially engaged with other people.)

The things that make our brain healthy are also good for the heart and overall health as well as the brain. It is, forgive me, a no brainer so just do them if you are  concerned about your health.

Can you tell if you are cognitively impaired? Sometimes. You can be painfully aware or not have clue and there’s the rub. You may not have enough awareness left to be able to know. Your partner, care giver, or friends may be more aware than you are so doctors often include information from a spouse or care giver in making a determination. The real question is do you have a cognitive problem that affects your daily life. You can be evaluated by a doctor and there are several tests available online. The Montreal Cognitive Assessment (MoCA) was created to identify people with mild cognitive impairment from normal elderly adults. It looks at the following cognitive domains: attention and concentration, executive functions, memory, language, visuoconstructional skills, conceptual thinking, calculations, and orientation. It takes five minutes and can be found online.

Parkinson's Birthday

And so it’s my birthday. Happy birthday to me. Another year older and I’ve lived another year with Parkinson’s. At first I thought I could handle it but sometimes it has its way with me and developed a little faster than I would have liked. At those times I don’t have Parkinson’s, it has me. So I shake a little more and I’m having some problems with balance. It could be worse. Happy three quarters of a century plus one to me. 

PD is seen as a physical disease, defined as a movement disorder, but it really is a fight for the control of the mind and emotions. A healthy mind is the greatest asset in fighting the disease. It helps me accept the reality of what is, neither making more of the disease nor less. I will 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 emotional well being.

I don’t know if I should credit PD or thank aging or both or neither but

Parkinson's Vocabulary Lesson

Isn’t it wonderful how my vocabulary has increased since getting PD. I’ve learned new words and new meanings to words. Here are a few.

PARKINSON’S (PD) as in: Do you have Parkinson’s, the neurodegenerative brain disorder marked by tremors, muscular rigidity, movement problems, and postural instability associated with a deficiency of the neurotransmitter dopamine? Yes, I have PD.

SINEMET as in: Do you take Sinemet a combination of carbidopa and levodopa for the treatment of Parkinson's disease? The symptoms it treats are tremor, stiffness, and movement difficulty. Possible side effects are hallucinations, dizziness, fainting, depression, twitching, twisting,  uncontrolled repetitive movements, and many more.

Dopamine: Dopamine is a neurotransmitter that helps regulate movement and emotional responses. The deterioration of neurons in the brain that produce dopamine is believed to cause Parkinson's Disease.

Tremors: Tremors are the shake in the shake, rattle, and roll of Parkinson’s. They

can occur in any part of the body but are mostly present in the hands and can make eating, dressing, and life really difficult.

Rigidity: 90 to 99% of PWP experience rigidity. Rigidity keeps muscles in an involuntary state of continual tension and can be caused by neurological damage or as a side effect of medications. Should I take my meds or not? Damned if you do, damned if you don’t

Bradykinesia: Bradykinesia is slowness of movement and can be caused by PD or as a side effect of medicine prescribed to treat PD. You lose either way.

Bradyphrenia: Literally slow mind. Who knows if it is due to PD or due to aging but fear of cognitive impairment is a major concern of many PWP.

Dystonia as in: Try not to stare at people who have dystonia. It’s a neurological movement disorder caused by incorrect signals from the brain resulting in sustained muscle contractions which cause twisting of body parts, repetitive movements and abnormal postures.

Retropulsion: Involuntary backward movement that often cannot be controlled or stopped and may result in falling.

Anxiety and Depression: Mood disorders like anxiety and depression are real clinical symptoms of Parkinson's just like tremor and rigidity.

Despair: The fact that PD is progressive and cannot be slowed, stopped or reversed causes me to sometimes lose hope and give in to despair. 

Hope: Class is over for the day. I hope a cure is found soon and I don’t have to experience additional PD related words like akinesia, dysarthria, micrographia, freezing, postural instability, and so many more.

Parkinson's Dating Sex Love

Dating, sex, and love are names we assign to different types of relationships. Parkinson’s can have a strong impact on relationships. Everyone reacts differently. Some couples become closer and more caring, others remain the same and go on as if PD is just another thing in life, and some distance themselves and grow apart. The quality of the relationship is more important than the type. With that understanding in mind everything is exactly the same as it was before I had Parkinson’s. Nothing has changed and everything is completely different.

DATING

Tell them on the first date. Come right out with it. Let me tell you about myself. I like to read and dance, I’m often late, always hungry, and have Parkinson’s. I have the disease, I am not the disease. Don’t sit on your hands to hide your tremors. You will have to pick up the fork and eat sometime. If your date can’t handle that you like to read and dance then move on.

Soft sensual sex

Nipples harden on her breasts

Phoenix enters nest. 

SEX

How PD affects sex can be all over the map. The disease can lower libido. The psychological and physical toll of the disease and the side effects of the meds can cause impotence and depression. Studies show that 70 to 80 percent of people with PD experience some form of sexual dysfunction. Conversely the meds can make you hyper sexual and sexually obsessed. I don’t think I’ve changed emotionally. The mechanics suffer a little, but the passion and pleasure remain the same, and I think I’ve become a little more caring. As I said above, everything is the same and everything is different. Something to know is that the brain increases oxytocin and dopamine production during sex.

LOVE

Love is the best medicine. It’s a chemical reaction in the brain that releases the feel good hormones oxytocin and dopamine. Yes dopamine, music to a PWP ear because Parkinson’s is thought to be caused by a loss of dopamine producing neurons. Dopamine and oxytocin work together like  … well like a couple in love. Oxytocin promotes bonding and is referred to as the love hormone, the hug hormone, the cuddle chemical. It is produced during intimacy and makes the receptors in the brain more receptive to dopamine which stimulates desire and triggers intense pleasure. They function together as a one two punch. Oxytocin helps enable dopamine to be released during sex and to run wild during orgasm. I can almost see it. Parkinson’s pick up bars. Hi there, I have PD and would love to make sweet dopamine with you. Or how about, you stimulate my oxytocin. Let’s go somewhere and make great dopamine together.
 Ok, my mood is good, my dopamine must be flowing so let’s have a little fun. Oxytocin and dopamine go together like … 

love and marriage, a horse and carriage, birds and bees, bees and honey, a hug and a kiss, kiss and tell, men and women, boys and girls, male and female, night and day, the sun and moon, yin and yang, two peas in a pod:

like Adam and Eve, Tristan and Isolde, Romeo and Juliet, Bogey and Becall, Fred and Ginger, Lucy and Ricky, Laurel and Hardy, Flat and Scruggs, Ralph and Norton, Abbott and Costello, Mork and Mindy, Mickey and Minnie, Ozzie and Harriet, Cheech and Chong, Barbie and Ken, Bonnie and Clyde, Thelma and Louise, Tarzan and Jane, Batman and Robin, the Lone Ranger and Tonto, Ben and Jerry, Bert and Ernie, Jack and Jill:

like peaches and cream, bread and butter, peanut butter and jelly, meat and potatoes, potatoes and gravy, biscuits and gravy, bacon and eggs, mac and cheese, meatballs and spaghetti, pork and beans, fish and chips, chips and dip, soup and salad, lox and bagels, sugar and spice, salt and pepper: like fun and games and on and on. 

And you … always you my love.

Sarah's Parkinson's Story.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A good haircut            Care giver               Cat                       Chocolate chip cookies        Chorus

Clean sheets              Cleanliness             Clothes that fit     Clothesline            Comfortable shoes

Dance class                Dignity                    Driving a car        Electric blanket      Electric toothbrush

Family                         Fiber                       Friendship           Happiness              Heirlooms

Helpful salespeople    Home-grown tomatoes  Hot shower   House guests         Husband

iPhone                        Ices                        Jack Johnson       Jewelry                   Meds

Mobility                       Money                    My neurologist      Politeness              Practical jokes

Puzzles                      Rod Stewart           Sharp scissors      Snapple iced tea    Sunsets

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

Will you get back to me on that.

Curing Parkinson's

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

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

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

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

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

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

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

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

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

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

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

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