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.