By Ken Gunston
I believe most of what I have written in this paper is consistent with published Parkinson’s Disease self-help literature. Using that literature, I tried to write about how I experience Parkinson’s. Two sections in this document are not consistent with the literature. Instead, they are consistent with what I seem to experience in my body and what I think is going on. I tried to make these differences with the literature clear in the text of these sections.
These two sections should not be taken as truths, but instead as something I would like reviewed and discussed. These two sections are marked with asterisks in the Table of Contents page (over). If you, as either a professional or a Parkinson’s patient or caregiver, have the time to entertain such a discussion, please let me know what you think about what I have written in these sections.
Editor’s note: the author can be reached at kenneth.gunston@gmail.com
Who Am I ?
I was diagnosed with Parkinson’s disease (PD) about ten years ago at the age of sixty-nine. I am writing this with the thought that I may be near the time when, due to this disease, I can no longer write or put my thoughts together in understandable sentences. My goal is to write down some of the feelings I have and mechanics I use to enjoy my days, possibly even extending them. I have only my own body to experiment with. If you have PD, I hope what I write will trigger your thoughts and that you will be so kind as to share them with me. I intend to write things out in perhaps too much detail, things you already know. If you can, please humor me on that. Engineers are trained to worry about every bolt, lest the bridge collapse.
My medical record would say I am a 79-year-old male with PD, about 150 pounds (was 170), badly stooped (was 6 ft.) with moderate dyskinesia (random movements), forgetful and sometimes confused. I have no other ailments. I am a husband, a father of four, a grandfather, ex-electronic engineer, ex-home handyman and now, a reporter from within this disease.
If, before birth, I was offered a life of 70 years, ending in a quick death, or alternatively, an extra 10 or 15 years to be spent dying of PD and whatever else I could do with those years, I would choose the latter. I think you would too. That thought is better than feeling sorry for myself that I caught PD. Approaching my 80th birthday, I am living that choice.
I am lucky to have a life partner, my wife Suzanne, who plans around my limits and somehow carries on. This is where the pain is, watching her burden. My sweetheart is my angel. She helps me every day, an hour-by-hour continuous gift from her heart. You can’t get this close to someone with PD without feeling grief, frustration, and anger, at times.
Sometimes I feel low, but mostly I enjoy life and I hope to have some time before Suzanne and I need to go through whatever end of life bumps await us. I have seen the final days of others that have completely lost their reason and I do not want that for myself, nor for others to watch. I hope that my family will let me go without feeling guilty. I am not looking for and do not think in terms of a poison pill or a gun, but perhaps I will no longer want to take care of my body’s nutritional needs. Of course, no one knows what they will do until their time comes. I have made sure there is a DNR on the fridge door, so maybe God will make these, “how will I die”, decisions for me. My job for now is the same as everyone else’s, to enjoy life so those closest to me can see that I am doing that most of the time.
The Parkinson Progression
As everyone knows, PD progresses downhill, but my sense is that it does it in steps. I am familiar with this staircase because I went up it as a child, gaining skills and cognitive capabilities that I am now losing. When I step down from the step I am on, I know I will not visit this step again. So I try to do everything my body and mind will let me do on each step. Steps, as I am describing them here, are not something defined in the PD literature, but rather something I define for myself. I enjoy when I wake in the morning and see that things are pretty much the same as yesterday. I am on the same step.
The concept of PD declining in steps is also important to the way I manage my efforts. I do not step down a step willingly. I fight it. Stepping down is what happens when things that used to work, stop working. It is not unusual to have several things become difficult at once. When that happens, I need to determine how I can maintain myself on the new step. To me going from one step to the next is a process with a beginning, a middle and an end. At the end, I have adjusted to the new step and have maintained whatever functionality that I can, perhaps at the expense of effort required or speed.
Also, a step is not necessarily something going wrong and something going wrong is not necessarily a step. For example, last summer I broke my right hip and it took seven months to fully recover. After the walker, the rollator, the cane, finally I was walking free again! Suzanne and I went on two-mile hikes on uneven ground with confident balance. All that happened on the same step, just an accident and recovery.
Then, only four months later, one year after my fall, my PD advanced a big step. This time, PD introduced me to “freezing” (feels like my feet are glued to the floor) and a big loss of memory capability. At first these things seemed insurmountable. But then I determined what was possible and I found some success. That is what PD feels like to me. There is always a step down the life-staircase but there is, so far, always a next step to catch me, to pause at. I now use a cane and restrict my walking to fairly even ground, and I use a rollator for the first few minutes or so when I awaken. It was a big step down, but it was not a cliff.
My Understanding of PD
In PD as I understand it, the neurons in my brain where memories are stored and thinking takes place, are not dying as happens with Alzheimer’s. (Though there is no rule that says I cannot have both PD and Alzheimer’s disease. I am thinking, hoping, just PD. PD is enough for now.) What is dying in the brains of people with PD are a particular kind of neuron (a cell) that is located in a part of the brain called the substantia nigra. The job of these cells is to make a substance called dopamine, which is a neurotransmitter. Neurotransmitters are chemicals used in the electro-chemical action that takes place in the synapses between neurons. Without enough dopamine, the neurons communicate more slowly which is called bradyphrenia[1] (slow thinking). Bradyphrenia is the cognitive equivalent of slow motor control, which is called bradykinesia (slowness of movement).
Some of the cells in our body can be replaced. That is what happens when our skin heals after an injury. The dopamine producing cells in the substantia nigra are not replaced when they die. We are all born with about 400,000[2] of these dopamine producing cells. We lose about 2,000 each year as part of the normal ageing process, but with PD we lose about 5,000 to 20,000 each year. Movement disorders become evident when we are down to about 160,000 dopamine producing cells. I am apparently below that number. The carbidopa/levodopa I take four times a day replaces some of the dopamine I need. It helps, but not completely.
They call PD a movement disease with perhaps some cognitive loss in its later stages. I suspect that at least for me, it is instead a cognitive disease that was first diagnosed, by its impact on my ability to move. Everything else that is affected; slight changes in decision making ability, memory, even feelings, are not hidden, but are so subtle that the observer, the family, the neurologist, even the person affected does not recognize these as PD. These symptoms may have started years before the disease evidenced itself as a movement disorder.
No one wants to admit cognitive loss and I am no exception. But this admission to myself is crucial because it allows me to be more specific as to what my cognitive losses are. I use the simple idea that many of my motor and cognitive symptoms, can be explained as slow communication between neurons (or inappropriate synapses firing), because there is not enough natural dopamine in my brain. Then using that idea, I think about what can be done to minimize some of these deficits. In the rest of this paper, I will try to describe how I have addressed these challenges.
Some people reading this paper with its list of symptoms, and what I do about them, may find it depressing, but that is not what I feel. To me, finding solutions is uplifting and that is what I want to share with you. For the record, I take 6 ½ (25/100 Sinemet) tablets a day, spread over four intervals. I seem to be stable for beyond these intervals. My neurologist has tried to supplement this regimen with other PD medicines, but my body did not handle them well.
I split the list of symptoms into two parts, Cognitive Issues and Movement Issues. There are a few over-arching thoughts that apply to all things I do to address both Cognitive and Movement issues.
- When I say I do things a certain way, I don’t mean I am consistent, just that I try to be.
- I try to focus on one thing at a time. For example, if my goal is to walk across the room, I stop thinking about what I just did (get out of the chair), review why I want to walk, then focus on the details of my steps.
- I try to never, never give up. And then I try again and then again.
- I think, analyze and experiment. The experts are great and so are others who have PD but only you, only I, have this body. It is a source of valuable information that I cannot get anywhere else.
- My purpose in doing the things I am writing about is to keep myself functional so that I can be with, enjoy and possibly help the people I love. PD robs me of so much, as it does to people who help me, especially Suzanne. There is always a tradeoff between how much I work on my PD issues so I can live and how much I live, how much I take from others and how much I give.
Cognitive Issues and Bradyphrenia
Pre-diagnosis Issues
Some folks believe there is some relationship between PD and certain chemicals. For the record, in the summer of my 20th year, I worked for the mosquito control commission in Suffolk county New York. Sometimes I had a five-gallon tank strapped onto my back with a pump handle and a small hose. With a team of others, we walked through wooded areas spraying something that killed mosquitos, perhaps DDT. During that time, I suffered multiple one to two-inch diameter “boils” on the side and back of my head and neck, one, two or three at a time, new ones replacing the old. Each had to be lanced and drained. however, I am unaware of any lasting problem from this exposure.
I had a prostatectomy in my 57th year, a major operation. The operation took longer than predicted and I spent longer in the recovery room than expected, due to problems related to the anesthesia. I am not aware of any lasting effects from this but Suzanne is concerned that there may have been some cognitive loss, particularly in my sense of direction, something I was once good at. In any case there was definitely a loss in my sense of direction and my ability to retrace (remember) my steps when I was in my late 60s.
Before I had any idea, I had a named disease I found myself forgetting things that I did not realize I was forgetting, like promises and agreements, both at work and at home. It was embarrassing. I had a good reputation professionally but I was not renewing it. Because I enjoyed my work, I had expected that I would continue to work beyond age 65, but when my boss offered me a small bonus to retire at 64 ½, I realized no good would come from not accepting that offer. I was, at this point, not enjoying my work.
Staying in the Here and Now
As one person with PD told me, “I would give up a lot of movement dexterity for less cognitive loss”. That is not a choice we are given. It may not look like it from the outside but there is much that I can do to deal with cognitive loss and it is my responsibility to figure out what I can do and then do it. I owe that to myself, to Suzanne, and to my family. This is where I have to be.
It was about five years ago when Suzanne started telling me she has to make an assessment each time we discuss something as to whether she is talking to “Old Ken” or “New Ken” meaning rational or confused Ken. I need to make the same assessment on myself more often. Specifically, I need to think before I say something. Being slow is OK. Bradyphrenia (slow thinking) is not no thinking. The first comes with PD but the second does not have to. Being “stupid” is scary and Suzanne’s primary window on my sanity comes from listening to me. I need to do it as well as I can. It is OK for me to ask her to slow down, saying, for example, “You are ahead of me. What are you referring to?” to buy myself more time to think. Pauses in our conversation are good. If I ask her something, she has already told me, it helps to let her know I am now aware that I was asking her to repeat what she said.
I try to pay attention to what is going on. Avoid daydreaming. Keep track of plans, doctor appointments and such for both Suzanne and me. Suzanne does not need me to help on that but I need it to be useful in a conversation about plans. We keep a white board which I update regularly, so I can check it when needed. We make Suzanne’s datebook the master document so I just update the whiteboard from her datebook, two to four weeks ahead. Every once in a while, I notice some conflict or consequence (we need to do this before we do that) that helps Suzanne. Almost always, she is the one to notice, but I think she appreciates that I care about these little things so she is not alone, thinking for both of us.
When we travel to a store or doctor or to just someplace nice, I make sure I remember our route or I take out the map and follow it.
I make it a point to always know what day of the week and date of the month this day is, every day. I am annoyed with myself if I catch myself unsure of the date and day.
Getting lost
About three years after I was diagnosed as having PD, I experienced these confusing situations:
- While driving (or Suzanne driving) arguing with Suzanne as to which exit to take from the highway to get to our destination. Then realizing I was confused and that she was correct. That happened several times even though in the past I had a fairly good map in my head. Suzanne used to say I had a good sense of direction. Not anymore.
- Going into a building and leaving by a different door without realizing I had done it. Then, not knowing why everything looked different and not knowing what happened to my car.
- Route 1 between Bath and Brunswick is a limited access four-lane which I was driving when suddenly, I realized I had no idea where I was, even though I was 7 miles from my home on a routine errand and had driven this road once or twice a week for years. To me, this day, Route 1 looked like any other-four lane. I could have been in Ohio for all I knew. There was an off-ramp just ahead, so I took it. That off-ramp presented me with a familiar scene, so I could re-orient myself.
These were not simple mistakes, quickly recognized and corrected. They were confusing and, disconcerting and each took a minute or more to recognize before I could correct myself. Each occurred within a few months of each other and about three years after receiving the PD diagnosis.
But they did not keep happening. I thought this was something I could beat. I made progress by consciously keeping track of my movements. I am not lost if I know how I got here and why. I try to keep fewer things on my mind and focus on the “why” and “how” questions while I am moving. I practice this around the house so I will do it when I am out of the house. This does not come naturally, but I feel like I am having real success. With PD, confusion begets confusion and this kind of confusion, the kind that could once be considered acceptable, is no longer acceptable.
Remembering to Remember
There is a common theme to most aspects of living with PD. What used to be handled automatically, subconsciously before I had PD, no longer works unless I do something about it. I am referring to things like “walking” and “standing from a chair”. The list of these things is long. In general, the solution for each involves moving what used to happen subconsciously to my conscious mind, including each and every detail. Doing that is difficult. It requires identifying each step of the action, learning the order that each of those steps need be done, and then doing them every time the action is needed.
Coping with loss of memory is like that except that, there is an emotional factor. Identifying the steps needed to “stand from a chair” does not sound like a cognitive problem. Everyone knows PD is a movement disease, right? I go to a neurologist who specializes in movement diseases and a physical therapist who shows me the steps I need to “stand from a chair”. No one is threatening my ego. No one is saying anything that could be interpreted as calling me incompetent. But there is no way cognitive loss can be dressed up to look like a movement disorder. Listening is something I learned to do at an early age. Not doing it well in old age is a cognitive limitation, but the good news is that I can do something that helps.
My thought on memory is that cognitive memory loss is exaggerated by not handling, the process of getting the thought into memory. When I don’t remember well, it is often a “failure to listen” or “failure to notice”. Of the two, “failure to notice” is more complicated because it requires making a decision about what is worth noticing. For that reason, I will focus on what I try to do to listen. These steps are perhaps, obvious, but not completing each, will cause me to fail to remember.
The process of “listening” includes “understanding” and “storing”. Storing has two parts, “storing what was said” and “storing the handles”.
Suppose Suzanne tells me “I am going to the market”. Hearing that sentence involves my brain decoding the sounds into words and then recognizing the meaning of the sentence made of those words. My ability to understand is limited by my bradyphrenia. If I do not understand I will ask her to repeat the sentence. Suzanne often tries to help me to understand by using simple sentences, each containing a single fact, as in this example. She will not give me more information until she can see I have digested the first fact. Then she might say “I need to get the birthday cake”.
Suzanne using single fact sentences is a big help in “understanding”, but it is my responsibility to be sure I have completed the step of “understanding” what was said.
The next step in “listening” is “storing” which is a two-part step. Storing something involves both sticking the thing I want to remember in my brain and “providing handles” to the thought so I can extract the information when I need it. Both the thing to be remembered (Suzanne going to the store to get the cake) and the handles must be stored in my memory. Storing takes place when I think about it and thinking about it takes place as I create the handles. Before I had PD, this second part (creating the handles) occurred almost automatically. Now I need to do it manually with my executive function, piece by piece. For example, I need to record that I now know where Suzanne will be for the next half hour, so I will not be looking for her. And I will need to connect the birthday cake to the event it is planned for and who will be a year older. I may also connect the thought that she is having to make a separate trip for this cake because the cake was not ready when she was at the market earlier. I might also notice where we were standing or what she was wearing when she said this; any facts I can connect to make the memory richer. You may think I am just adding to what needs to be remembered but that is not how it works for me. All these things form a single concept, complete with a touch of emotion (pleasure – I like her in what she is wearing and I like how the birthday person will feel). All those things form into a single image that is easier to remember. These things are the handles I will use to extract the information I just put into my memory. This is what I mean by remembering to remember, remembering to do this extra work.
Remembering takes time and often requires a patient talker to take the time to answer my questions and requests for repeating the sentence. However, that is much better than not bothering to understand and then seeing what goes wrong. It does not always require extra work by the speaker. Suzanne may say the sentence and then be putting her coat on while my mind is churning away, digesting the information in the sentence she said. It always requires me to go through each of the steps, methodically.
This is not as hard as it sounds. A person does not need to have PD to have experienced only partially hearing a key word of a sentence someone has spoken. The sound stays in your mind for a second while you try to match a word that would fit. When you get it, the sentence makes sense and the thought expressed by the sentence matches the expression on the speaker’s face. That is the step of “understanding”. It is only the process of “creating the handles” consciously, that is new to my listening job.
Avoiding Danger
With PD and bad memory, there is a risk of just doing something stupid resulting in catastrophe. I keep a list of these things. I do not depend on my judgement for the things listed below. I am especially careful to watch for them when I have just taken a step down my PD staircase, when I am most susceptible to making a mistake.
- I never drive because I worry about dozing off while driving and I worry about not handling complex traffic situations well.
- Some winter days are deathly cold in Maine. I always make sure that at least one door to the house is unlocked when I step outside in winter. I encourage Suzanne to do the same. Not just unlatched. Unlocked, so that even if injured, even if the wind closed the door, we could get inside.
- During the winter months, not just on freezing days, I make it a habit to watch the dog while she is outside until I get her in. I do not do anything else while watching the dog, even on nice winter days, even if Suzanne is home, to keep my habit unbroken. Our dog is deaf and not likely to bark. In warmer months I can use electronic devices to remind me to bring the dog in, but that method is not sure proof for winter months.
- I do not put anything flammable on the glass top kitchen stove. I once put a potholder on the stove while the burner was on and did not notice it start to burn. Thankfully, Suzanne did. I have not let that happen since.
Vision Issues, Hallucinations, and the Riddoch Twitch*
In my opinion, the eye-brain connection is surpassed in complexity only by the functions and internal connections between the parts of the brain itself. The eye-brain connection is a place where this disease can have real fun at my expense. It is also where my dysfunction and reality present themselves in full dress. Not all vision symptoms are subtle and some are just old age, helped along by PD. However, they are all mine to have and to hold so I will describe them here.
My eyes no longer present one image most of the time. I see two images, my eyes apparently not tracking together. I keep one eye closed while I am typing or reading.
I have blank places in my vision that seem to come and go. For example, I may have two pills in the palm of my hand but I only see one, the other comes and goes and comes back again. Staring at it, the image seems to settle down and I see both pills consistently.
I can no longer look down a piece of lumber from one end to see if it runs true or is slightly bent or twisted.
I am becoming color blind. I see blue and green as almost the same color and sometimes two things appear to be two distinctly different colors when they are not.
It takes me longer looking at something to discern what it is, at least in its details. That happens with many folks as they get older, with or without PD. I noticed with my parent’s generation and now with mine, a common type of automobile accident. At an intersection with a yield or stop sign, the driver stops, waiting to cross or to make a left turn. Most of the traffic is from the right. Finally, there is a break in that traffic. One quick check to the left, no cars, accelerate and bam, T-boned. The driver swears that they looked before proceeding and did not see the car. I suspect that they did not look long enough, not so much because they were careless or were hoping there would not be a car there, but because they had not yet accustomed themselves to old age and “slow vision”. They saw the scene but not the car in it. When young, it only takes a second to catch a detailed vision, but it takes longer when older and longer still for a person with PD. In low light, with PD, it may take several seconds.
One time, while looking at the wood floor, I saw a vertical wood door where there was none. This happened to me while using my rollator, walking to the bathroom, half asleep, in the middle of the night, in low light. I knew my brain had not made the correct interpretation of the image. When this happens, if I focus, in a short time I will see the scene correctly, a bit like a painting that appears to be one thing, but if you look at it longer you see something else.
I think that there is another vision issue that may be misdiagnosed as hallucinations, an early symptom of Parkinson’s psychosis. Notice this description[3] which was taken from a more complete description of hallucinations under the title “Symptoms of Parkinson’s Psychosis”.
“Typically, psychotic symptoms are subtle when they first start. In the evenings you may begin to see shadows fleeting by or hovering at the edge of your vision or a feeling that someone is standing behind you. Gradually objects at the corner of your vision start to look like something else, and the illusion goes away when you look straight towards it. Afterwards, the images at the edge of your vision may start to become vivid, distinct and stereotypical every time. For the most part in the beginning, you can distinguish these images from reality. These subtle symptoms can persist for months, or even a few years, but it is often unclear when these early symptoms get worse. Usually, an infection or anesthesia from a surgical procedure can worsen it.”
That quoted paragraph includes non-vision phenomenon, but it is the description of vision issues that concerns me.
At least from my experience with PD, a common attribute of the disease is that neurons or the synapses between them, fire inappropriately, spontaneously from time to time, perhaps as part of my dyskinesia, or from my long use of carbidopa/levodopa. For example, if I hold my fingers over this keyboard while I am thinking, there is a chance that a finger will type a key I don’t want typed. This occurs when a muscle in my hand twitches, I assume due to a spontaneous neuron synapse firing. Or I may feel a pin prick (or several) on my foot or hand but on examination there are no pins. Again, I chalk this up to an inappropriate synapse firing.
If an inappropriate synapse firing were to occur in the neurons in my ocular nerve, that may be another kind of vision problem. The human eye has three primal functions that I am aware of, to recognize night from day (so we sleep), to image light (so we can see) and to detect motion (so we can avoid danger). The Riddoch phenomenon[4] describes a person who can see motion but is otherwise blind, named after George Riddoch, a neurologist who in 1917 wrote a paper describing brain injuries he had seen in soldiers. This phenomenon is rare but has received notice by researchers in recent years. One such person was able to catch a ball thrown at her but could not see the ball once caught, could see a hand coming to her but could not distinguish thumbs up from thumbs down. Although I can’t document it, I believe that I have read that about 10% of the neurons leave the ocular nerve and enter the brain separately from the other 90% of them. These may be the ones that detect motion in the vision field.
PD people do not experience the Riddoch phenomenon because like most everyone else, they have both image and motion sight. In fact, like everyone else, we do not recognize that these are two different capabilities of our eyes. Our brains integrate these two inputs to form a single perception. You may notice that it is much easier to spot a pill or coin just dropped, if you see it while it is still rolling instead of after it stops.
I suspect others with PD like me, sometimes have spurious neurons firing in those neurons that detect observable motion. For lack of a name, I will call it a “Riddoch twitch”.
All my life, as with anyone, if I thought I saw something move off to one side, I would look directly at it to see what it was, the cat jumping onto a chair for instance. I was almost always rewarded with a recognition of what happened to make me look. However, with PD, if I think something moved off to the side and I look, I may see nothing there. Given the brain’s propensity to make images where there are none (my door example), after having this happen a few times, and if the light is low, there is a visualization, no shape (maybe it is round) and no color (maybe it is gray), but something. I can imagine it being described as a fleeting shadow as in the quoted paragraph above. When this occurs, but nothing is there, I am calling this a Riddoch twitch.
After experiencing this several times, I now get the same visualization every time, the “round gray thing”, even if I sensed a real thing, but didn’t see it. For example, one time in the car at night on a narrow dirt road, Suzanne driving, she said “do you see that?” She was seeing some deer in the woods ahead, just off the road on the edge of what the head lights illuminated. I said “yes” because I too saw something, but I did not see the deer. I didn’t get my eyes to the deer fast enough. They had run away. This was not a Riddoch twitch because it was a response to a real thing that moved, the deer. However, my brain, being accustomed to providing an image when there is motion detected but no image, I perceived the “round gray thing”.
The description in the quoted paragraph of early Parkinson’s psychosis is so much like what I experience with a Riddoch twitch. The “psychotic symptoms are subtle”, “in the beginning, you can distinguish these images from reality”, “the illusion goes away when you look straight towards it” (it was never there). It tends to be to the side (where it can’t be disputed by optical vision) and is “stereotypical every time”. I call this a Riddoch twitch and ignore it. It does not happen often and when it does it is usually in low light conditions. I think this is a physical phenomenon, not a psychological one.
I don’t know why we have motion vision. Its main function may be to alert us to things happening off to the side where our optical vision is greatly reduced and our motion vision may be stronger. That may be one reason why Riddoch twitches tend to be off to the side. Another may be that if they occur directly ahead where optical vision is strong, the brain may ignore them.
I am not disputing Parkinson’s psychosis, just the interpretation of this symptom. I am concerned that I have not found references to the possible role this physical phenomenon can play in diagnosis of PD hallucinations.
Also, given the description in the published literature, it is reasonable to conclude that I am just experiencing early symptoms of psychosis. I don’t think that, but check on me later.
I am interested to know if you, having PD, have experienced what I am describing, and if you do, is it easy to ignore? I am concerned that for some, this thing I am calling a Riddoch twitch, may feel spooky. The definition of “hallucination” is “an imaginary sensation perceived without anything in the environment to provoke it, like seeing an imaginary dog in the corner of the room when there is nothing there”. I believe that what I am describing is not a hallucination because it is not imaginary. It is real and if I am even partially right, it is happening to people who are vulnerable, questioning their own sanity and possibly being told that they are hallucinating. Even if I am right, I don’t know how common this phenomenon is. It may be rare. My concern is that, given a wrong diagnosis, how many times does a person see nothing there before they put the dog in it?
Vivid dreams, known as REM Sleep Disorder
REM Sleep Disorder is a common symptom for people with PD. These vivid, even ferocious dreams where I am physically fighting some imagined creature, person or even a machine, are scary. Once it was a spinning top, bigger than me. What makes these dreams scary is that I am acting them out. In my mind I may think I am hitting a bad guy but in reality, I am hitting or kicking at the air. REM Sleep Disorder is what forces couples who have shared a bed all their married life, to move to separate rooms.
Unlike most PD symptoms, I do not think REM Sleep Disorder dreams are caused directly by lack of dopamine and they are not unique to PD. “Dreams express an individual’s core concerns, drawing on memories that are similar in emotional tone but different in subject matter. This contextualization is clear in post-traumatic nightmares.” says Tore Nielsen, Director of the Dream and Nightmare laboratory at the University of Montreal[5]. As I realize that PD is the real thing, not something I will recover from, I want to fight it back. I usually wake from the dream when I am about to be overwhelmed by my enemy. Suzanne says I am usually screaming.
Movement Issues and Bradykinesia
Pre-diagnosis Movement Issues
I was losing my sense of smell many years before I was diagnosed with PD. I still enjoy the taste of good food and an occasional smell comes through. There are many things that cause loss of smell. PD appears to be one of them.
Our two sons are almost 11 years apart in age, born in 1970 and 1980. Starting when the youngest was 4 or 5 years old until we were all grown men, getting together at family events, we used to form a triangle to throw a ball between us. The triangle was almost a straight line with the youngest in the middle the first year there were three of us. It grew to a big triangle for a few years, limited by how far we could throw the ball and then to a straight line again, now with me in the middle. I came to have as much trouble throwing the ball straight as throwing it far. That was 10 years before I was diagnosed with PD. Sometimes I just watched, enjoying seeing their strength.
I walked with my head bent down looking at the floor (the PD slouch) for at least five years before I was diagnosed with PD.
Another early indicator of PD was the “PD mask”, the loss of facial expression. That did not occur as early as the other early symptoms. Suzanne said she thought I often looked like I was angry. This may have just been three years before the PD diagnosis.
About three months before I was diagnosed with PD, one arm stopped swinging when I walked. This is what got me to the doctor who in turn referred me to a neurologist and the PD diagnosis.
Tremor
After being diagnosed with PD, the tremor and arm swing problem were my only symptoms of PD. The tremor was mostly in my right arm, though I did have whole body tremor (violent shivering) when I was cold.
Once, when young, while trying to fix a machine, I had my head in a tight place between hard steel surfaces with 3” to spare front to back. Something startled me such that I bent forward quickly and banged my forehead causing me to pull my head back fast, which resulted in banging the back of my head, alternately forehead then back, continuously, painfully, until I got my head out of there. My neck muscles were powering the fun without consulting my brain. The Parkinson’s tremor is much like that but without the pain. I cannot stop it by willing the participating muscles to stop. In normal operation two muscles working in opposition allow precision movement, like an artist holding a small brush about to touch the canvas or a surgeon making a precision cut. Add a little of what engineers call “lag” to such a control loop and it will likely oscillate. That lag is the slow synapse, the missing dopamine. That is what I think is the Parkinson’s tremor.
So how can I minimize the tremor if I cannot remove the lag (cannot add dopamine to the specific synapse)? I have no way to get in there and take control but I might be able to reduce the available energy to the muscles. That must be what happens when I am dozing off. The tremor stops then.
I stumbled across an opportunity to experiment with a specific tremor. My right arm tremored often, but not always. I came up with a reliable way to start the right arm tremor and a somewhat reliable way to stop the right arm tremor. Stopping the tremor was done by relaxing the muscles involved. Starting the tremor was done by scrubbing our glass stove top with the other arm.
The tremor started quickly but it could take a long time to stop. When it did stop, I immediately started scrubbing again. I worked on this for a long time, months. I was encouraged by the fact that it was getting harder to start the tremor. At last, I could scrub the glass top stove with my left arm without causing my right arm to tremor.
I cannot tell you that what I did was responsible for removing the tremor from my list of symptoms. It may have disappeared anyway. But I can tell you my tremor does not occur often and eight years have passed. Now I routinely scrub the stove top with either arm, and experience no tremor.
I have not eliminated all tremor. For example, I still often tremor when I am trying to talk but cannot seem to get my message out, but I think I did something that was worth the effort.
Problems with Large Muscle Movements
I suspect that everyone with PD has spilled drinks and broken dishes. I do two things: purposeful movements, poorly controlled (put the glass down but miss the edge of the table) and random movements (knock the glass over while reaching for the butter). The former seems to come when I have not pushed hard enough to overcome the apparent rigidity in my arms. The second may be caused by dyskinesia. Both seem to occur when my PD has advanced another step down and I have not accustomed myself to this new step. I “fix” the first with practice and the second by slowing my movements.
Problems with Small Muscle Movements
By small muscles, I am thinking about fine motor skills like writing (micrographia), putting small things together including buttons, things with screw threads, keyboarding, eating, opening cereal boxes, etc.
I believe that if I want an occasional victory over this disease, I need to hone two personality traits; patience and stubbornness (though Suzanne might tell you that the latter of these two doesn’t need any honing). Some days I cannot put something together, for example, screw a lightbulb into a socket. It jams, cross threaded. I change the angle of the bulb and it jams again. The one thing I do not do is ask Suzanne to help. I am usually successful eventually. Some things are more important, like the screw threads on the container for the water filter in our domestic water supply. Until I get that together after changing the filter, we have no water. I do ask Suzanne for help but only after I have spent some time on it.
My handwriting is not legible but I can slowly print neatly. I like lined paper. I use the lines to keep my writing horizontal. I also use the lines to keep the size of each letter the same. Lower case is usually ½ the height of the space between the lines. Upper case is ¾ the space between the lines. I hesitate after every letter to assess size and alignment. Very tedious! Terribly slow! I can print with unlined paper by imagining the lines but I am even slower. That skill is needed for addressing envelopes.
I was once a touch typist, meaning I did not need to look at the keyboard to use it and I used all my fingers. I now use just one finger and I often have trouble finding a letter. I keep the spell checker busy finding my typos (many on every line, usually extra or missing letters) and my misspellings. I use the touch screen only with a stylus to implement the touch. I cover the touch pad with a piece of cardboard, hinged with a piece of tape, so I can access it quickly. Worse, is accidently hitting the control keys. That can put me some place else in my document while I think I am in the middle of typing a word, or even inadvertently closing my document. But keyboarding is better than hand printing.
Gait Issues
When I first had trouble walking, I tried to correct my stride by thinking about each muscle group and what it should be doing or not doing. That was both frustrating and not productive. Then another PD patient told me how to simplify my gait (just 3 parts, stretch out forward leg, land it on the heel, push off with the back leg). To do that for each step took concentration, so I still could not walk and talk at the same time, but it improved my gait. My physical therapist told me he could still recognize my gait as Parkinson’s because I did not twist my torso when I walked. Too complicated, I thought and dropped the idea of adding another motion to my gait. Then one day, I tried it, the three parts to the step, the arm swing and the torso-twist, all together. What happened was unexpected, a complete surprise! Everything seemed to work as it did before I had PD. The torso twist seemed to tie everything together. I am sure I could not fool anyone into thinking I had a normal gait but for the first time in a while, I could carry on a conversation while walking. It was a victory the way you feel victorious as a child, that first home run, or just riding a bicycle around the block without falling. This surprise was a big deal because it hinted that there was much more to learn about how my brain worked that might help me cope with this disease.
Somewhere in our brain there is a place where we store muscle memories. Muscle memories tell us how to use muscles to do a thing with our body that we have previously learned to do. The list of stored muscle memories would be long but would include, how to walk, how to run, how to ride a bicycle, how to catch a baseball, how to bring an overfilled cup to the mouth without spilling, and how to put it down. In short, just about everything we ever practiced and learned to do. These muscle memory recordings are there so we do not have to think them out each time we do something. The muscle memory recordings are not static recordings but rather are modified as needed. I catch the ball differently depending on where the ball is coming relative to where I am standing. These muscle memory recordings remain in my nervous system even if they have not been used for a long time, as anyone who tries to ride a bicycle after not riding for years, finds out to their delight. I believe that with PD, these various muscle memories are still there. There may be a way to awaken some of them by practicing the original movements. And when I practice, if I do not get the feeling that I am getting help from an old muscle memory, at least this idea got me to practice something. No harm in doing that.
Failure of Gait Initiation, FoG (Freezing)*
I recently started having the experience they call Freezing or FoG. What a nasty experience it is! It took me a few weeks to begin to learn how to maintain function; that is, how to ambulate with confidence after experiencing FoG.
Generally, in the self-help literature, FoG is understood as an extension of other gait disorders, including short steps, shuffling and unsteadiness. The literature describes FoG as “failure of gait initiation” (feet stick to floor or will not move). According to what I read, gait disorders can be helped by addressing balance, strength and energy level. FoG can also be helped by addressing the environmental factors that cause it, such as clutter or poorly lit rooms or shiny floors[6].
There are a host of suggestions for coping with FoG, some of which are similar to what I do. For example, Dr. Lieberman[7] describes them as useful “tricks” which are used at the Muhammad Ali Parkinson Clinic. They include humming or playing a tune, snapping your fingers or your cane while chanting “Go, Go, Go”, stepping over real or imagined lines on the floor or spots made by a laser light that you hold.
I think about FoG differently. I think that when my gait fails in this way (FoG), particularly when it is failing for environmental reasons (like a doorway), I stop walking right away and use another way of ambulating until I get by the obstruction. My only goal in this situation is to maintain function, being able to move my body away from danger, or risk of falling, when I need to do that. In my opinion, removing those fears are paramount, before even working on non-fearful festination issues.
Consider this example of freezing. I was standing and decided to walk across the room. Normally it takes a little more than a second to form the thought and take the first step. But this time I did not start moving. Instead, both my heels lifted so that I was standing on just my fore-feet. Both knees started an unproductive rapid back and forth without moving my feet. I could not walk normally. I could not walk at all for several seconds. I almost fell. Gradually I realized that in my PD progression, this strange thing was happening and it was happening often. It was my notification that I was taking another step down the PD staircase.
The way a person walks is called their gait. Our gait changes as we grow, as our weight increases into adulthood and our muscles get stronger. A person’s gait is the most efficient way s/he has to move around. As we reach our later years, injuries and diseases like PD take their toll. Again, our gait changes as needed to accommodate the changes in our body. Like everyone else with PD, I never had to think about my gait until I got PD. When this happened, when my feet felt glued to the floor, I was facing something I could not ignore. Clearly, execution of my gait muscle memory, which had once automated my walk, is failing to function well. Not being able to move can be fearful, and the fear feeds back to the attempt, degenerately.
What follows is my hypotheses of what I think may be going on in FoG and what I can do about it. Using this thinking, I was able to do something important. I regained the confidence, that if I needed to get out of the way of danger, like a car moving toward me in a parking lot. I could do it.
My contention is, that in FoG, my lower-level brain (the part of my brain which is trying to implement a gait, probably my cerebellum and/or basil ganglia), is being overloaded with more information than it can handle (low dopamine, bradyphrenia ). And, that this problem can be solved.
When my gait fails (FoG), particularly when it is failing for environmental reasons (like going through a doorway), I stop walking and pause for a second. The next movement I make, will not be to start walking again. Instead, it will be to move one foot out ahead and pause again.
I believe the pause does two important things.
- It relieves my “low level brain” from the responsibility of walking while leaving it with the responsibility of maintaining my balance.
- It allows my executive to take control of placing one foot out ahead.
Researchers have found the place in the brain where conscious thoughts take place, where the executive is located, in the cerebral cortex. After the pause, when I move one leg forward, I am using a different part of my brain. I am using my executive.
The idea of using two different parts of my brain in a cooperative effort to accomplish something that is normally done automatically by one part, is what I am suggesting. This is something we know how to do. Long before PD had taken hold of my body, I would have occasion to do something similar to what I am describing. For example, while walking on a trail through wooded terrain, I might come across a large rock in the trail with a tree alongside the rock. The trail beyond the rock is higher still. I might stop to assess the situation. Then, using the tree trunk for balance, I grab it and step up onto the rock and the higher ground beyond it before continuing my walk.
In FoG it may take more than one “executive” step, each time dragging my back foot up and then pausing. I have noticed that after I have been practicing this for some time, I can reduce the size of the pause. I think the key is to make sure the pause and the “put my leg there”, be accomplished by my executive.
Just a note on maintaining balance when using my suggestion of avoiding problems with FoG. After stopping, when moving one foot out ahead, it is important to first rotate the foot that is not being moved so that it provides left and right support.
I am struck by how beautiful, how graceful, this transfer of control between parts of my brain happened when I was young and walking that trail. I guess it took losing it for me to notice.
Drooling
Not drooling is important socially, to save computer keyboards and for my own comfort. I do not think I have much to offer that you no doubt have already tried, but this is what I do.
Posture really helps. I try to keep my chin up, not looking down. “Try” is all I am saying.
I suckle my mouth often (almost continuously when I am with people or typing).
I have learned to sleep on my back and when I want to sleep on my side, I first wet my lips and then hold them together until they dry, using my dry saliva as glue. This works sometimes but mostly I give up and lie on my back.
Postural Stability
Refers to ability to balance as on one foot (static) and while moving (dynamic). For several years now I have not been able to stand on one foot. I used to practice that. As a morning exercise I put my pants and socks on while standing but touching (usually leaning against) the bed. Then I turn 180 and do the other leg. At the end of the day, I take these off while sitting.
As to dynamic abilities, I need to be careful not to make large movements quickly lest I fall. I can put on my shirt, sweater or jacket while standing but I am careful to have my feet both facing forward, wide apart and that no one is near that could bump me.
Walking is easier than standing, as long as I don’t walk too fast. That is because while walking there is always a foot in the air that can be placed were needed to keep me upright, the way a bicycle rider keeps the bike upright by steering the wheels to remain underneath. Counterintuitively, I find standing still on a horizontal surface will eventually result in a fall, though feet apart and shifting my weight from one to the other, like a golfer, sometimes helps. For me, standing still on an inclined plane is dangerous.
Getting up from a Chair, Any Chair
For kitchen (hard) or folding chairs, I use the LSVT “stand from a chair” exercise which is, butt forward on the seat (or at least not too far back), feet back as far as possible, upper body forward, arms out in front, all to get my center of gravity (CoG) directly above my feet, and then straighten my legs to stand. For overstuffed chairs I have to do something more because my butt is so far back and low. So, I precede the hard chair technique with a strong push with my shoulders against the back of the overstuffed chair while pulling on the front of the chair arms with both hands to get my butt to the edge of the seat so I can use the hard chair technique. When this does not work to get my butt forward enough, I try again with a stronger effort. I want my CoG as far forward as possible before I push off.
For a toilet I use the same technique as for a chair. However, the shape of the toilet provides another option to get my CoG over my feet. The base of the toilet is narrower than the legs of a chair which means I can get my feet back on each side of the toilet, under my CoG.
To repeat because it is important, in general, for all kinds of chairs, while getting up I am doing two things, (1) getting my CoG over my feet and (2) then straitening my legs to stand up. It is important to do them in that order or I will fall back into the chair.
Standing from a sofa is difficult because at best you have only one arm rest, possibly none. In that case I use the shoulder push technique to get my butt to the edge of the seat. Getting my arms strait out front and my upper body horizontal, balanced over my feet, sometimes works better for me than pushing off.
Soft voice
My voice is soft enough so that often people do not know I am trying to say something, particularly in group settings. “LSVT Loud” practice results in a sore throat and a softer yet voice. A speech therapist tried to tell me how to use my mouth cavity to resonate and amplify the sound and to get me to move the sound forward in my mouth when speaking, but I have to admit I did not understand all that she was trying to teach me. That effort was interrupted by the pandemic.
Boxing
No one hits a person or gets hit in PD boxing, but the idea is to develop speed and agility, something PD patients have trouble with. They train for boxing by wearing boxing gloves and hitting speed bags, big bags or trainer mitts held and moved by the trainer. This is a popular activity particularly for people (men and women) whose PD is less advanced and still have good balance. I never participated because I have REM sleep disorder. The last thing I want is to learn how to throw a better punch.
Last Thought
Those of us who have PD don’t normally talk about the issues I have described here in this kind of detail. For some of us, like me, the disease has taken away our ability to process spoken words quickly. Which is why I wrote this paper. My hope is that, it will serve as a conversation starter. I hope you find some parts of what I wrote to be helpful and possibly supportive of what you think. Again, I want to trigger discussion.
If some of the paper is understandable, you are seeing Suzanne’s hand. I could not have written this paper without her. For those parts that are not readable, that is when I didn’t listen to her.
References
[1] Every Victory Counts, article by Mark Mapstone, PhD, page 145
[2] 100 Questions and Answers About Parkinson’s Disease by Abraham Lieberman M.D. page 32
[3] Every Victory Counts, article by Cherian Karunapuzha, MD, page 104
[4] Scientific American, October 2018. Article by Bahar Gholipour, page 14
[5] Scientific American, Article by Tore Nielsen, page 30
[6] Every Victory Counts, article by Helen Bronte-Stewart, MD, MSE, Page 98
[7] 100 Questions and Answers About Parkinson’s Disease by Abraham Lieberman M.D. page 97
