WHY I THINK PARKINSON’S IS A SOUL SUCKING DISEASE
Feature photo: Tulips are emblematic of Parkinson’s. Here the tulips are nicely highlighted by cherry blossoms. Photo: S. Marshall
In contemporary slang, “soul sucking” often means something excruciatingly tedious and depressing. I find it a little strange that soul sucking, an action that should strike at the very core of our intellectual, emotional, and spiritual being (our soul), should be defined so cavalierly. Is soul sucking merely hyperbole to describe anything that does not excite us?
There is a second definition which hits a little closer to the mark, “something that takes from you mentally, emotionally, and/or spiritually and gives nothing in return.” I think that soul sucking is more than a feeling, wrenching as it does something violently from the human psyche. Such a feat must require unfathomable power or even a higher order of life. What features of Parkinson’s could possibly be so destructive of one’s soul as to merit such a designation?
I am a Person living with Parkinson’s (PwP). Today, I will outline reasons why I think that Parkinson’s disease (PD) in its most pernicious form is ‘soul sucking’.
Warning: Some will say I am doing a disservice to the Parkinson’s community in this post – that I am too pessimistic – fomenting fear and causing depression. Far from it. I am merely saying to Persons with Parkinson’s and their families: Wake up! PwP must draw on their physical and emotional strength many times each and every day, at a moment’s notice and often in situations requiring every ounce of their reserves.
The trajectory of Parkinson’s is not pretty but we must not put our heads in the sand. We must know the grim realities if we are to face them effectively.
Caveat: The symptoms of Parkinson’s are not identical for everyone nor does its progression follow a predictable pattern for every case. In other words, not every PwP will experience each of the situations I outline below – but don’t be too quick to assume that they face only a few or that the few challenges they do face are negligible and/or manageable.
Why do I think that Parkinson’s is a soul sucking disease?
How many reasons do you need? My initial intention was to list the 10 top reasons but the list rapidly outstripped that number and I could not find good reason to edit these down to just ten. I could have continued adding more but to maintain my sanity (and likely yours) I invoked closure on the list as follows:
- PD robs you of intimacy. Parkinson’s renders even the simplest act of tenderness such as rolling over in bed and wrapping your arm around your lover almost impossible. Physiotherapy and exercise can help you forestall this problem but it often shows up long, long before you are diagnosed with Parkinson’s. The ability to be loving and tender in a physically effortless way – free from restriction and later free from tremor and uncontrollable muscle movements – are probably among the most disconcerting things I have ever faced. I resist with all my being the seemingly inevitable progression where my wife will identify more with “caregiver” than “lover”.
- PD robs you independence. Parkinson’s is a progressively degenerative neurological disease that will gradually and at its own pace cause you to suffer from periods when you are no longer completely in control of your own muscles. Bradykinesia (slowness) and rigidity mean you have great difficulty walking or doing the most minor tasks of daily living. You will require care sooner than you think.
- PD robs you of dignity and self – worth. Incontinence and/or constipation and/or diarrhea mean that you often are at the mercy of bodily functions that are no longer predictable or easily contained even with modern day sanitary conveniences. You will find your dignity under attack even when with your loved ones.
- PD saps your body of its strength, no matter how strong you may be. You will suffer through periods when even trying to get out from under one thin sheet on the bed is impossible. You will look strong and healthy on the treadmill at 9 a.m. but at 4 p.m. you may not be able to toilet yourself.
- Because Parkinson’s symptoms can arrive at a moment’s notice and leave just as quickly, people who don’t know any better will doubt your veracity; they will think you are faking it.
- PD plays havoc with your emotions. It doesn’t matter whether it is the disease itself or the future you face that causes the volatile emotions, you will find yourself crying at inopportune and inappropriate times. I cry at serious and frivolous things equally. Hilariously, innocuous commercials on TV often trigger tears for me.
- PD places a burden upon those for whom you care the most. When first diagnosed you will say that not much will change at work or at home. Wrong. Changes happen slowly at first but you will feel the need for help, for care. Your family, spouse, and friends will gradually start picking up the pieces you can no longer handle. As much as they will deny it, a burden (psychological, social, financial, economic, spiritual, temporal) does pass to them in that inevitable and unpredictable way that Parkinson’s has.
- PD places you at risk for discrimination, intended and/or unintended. In effect you are disabled. Young onset PwP will face challenges in the workplace as well as in their families. Your condition will rule out life insurance and your children may find it impossible to arrange their economic affairs because they share your genes. Last year Canada was the last G7 nation to pass legislation prohibiting “genetic discrimination”. It will take some time for litigation to work its way through the courts to see just how effective that legislation actually is.
- PD shortens life expectancy. Even though the studies are inconclusive as to how much some estimate it to be three to four years difference, and if you have Parkinson’s related dementia, lifespan is considerably shorter than that figure.
- There is an oft repeated saying that “You don’t die from Parkinson’s; you die with Parkinson’s” The implication is that we should not fear death at its hands. As always there is a kernel of truth in such homilies but, equally as always, there is room for debate. If Parkinson’s causes you to have a problem swallowing and you choke on your food or aspirate your medication and develop pneumonia, is Parkinson’s culpable? If you have Parkinson’s related balance issues and fall from a ladder and die (it happens), did you die from the fall or is Parkinson’s culpable? If you have freezing of your gait and freeze in the middle of a high traffic area road, what is the cause of death? If you are a PwP who becomes depressive and commits suicide, is it Parkinson’s related? I think it is fair to ask the question of whether Parkinson’s should be exonerated in every instance. Perhaps, the “old saying” is founded on a statistical artifact rooted in the way cause of death is recorded?
- It is a known fact that as you get older you become more at risk for falls. If you have Parkinson’s that risk increases drastically as most PwP have balance issues of some kind. Approximately 60 % of PwP will experience a fall and 39% will have recurrent falls. The most common injuries are fractures and 76% of PwP who fall require health services. Those numbers are quite high. The culprit may be faulty proprioception (the manner in which your body perceives itself to be in space) or fainting from Parkinson’s related hypotension (low blood pressure). You will grow accustomed to attending meetings where many of your PwP friends sport cuts and bruises from falls. I have not fallen yet (touch wood) but I live in fear of falling every day.
- Excruciating pain can accompany PD even though many people think Parkinson’s to be a painless and mildly irritating tremor. Let me disabuse you of that notion in the strongest possible terms. Cramps, especially in feet, toes, and legs are very common and can strike at any moment without warning. Dystonia is a frequent travelling partner of Parkinson’s and its constant contractions of muscles causes extreme pain and muscle fatigue. I once experienced a muscle/tendon contraction in my left leg from my groin to the tip my big toe for 18 consecutive hours! It felt as if a piano wire was stretching through that length and it was being pulled so tightly that it was singing, buzzing or humming with pain. I have had severe bruising in my hamstrings from very minor leg movements.
PD has no known cause and there is no cure. Dr. James Parkinson wrote his ground breaking essay The Shaking Palsy in 1817, two hundred years ago! Over those years we have found neither cause nor cure. This fact alone makes it difficult to keep hope alive. Personally, I do not expect that a cure will be found in my lifetime.
- After you are diagnosed with Parkinson’s you will ask the question: “why me?” Not surprisingly you will be angry and you will think of everything and anything that may provide an answer. Genetics? Possibly. You will begin to check your family history. Environment? Possibly. Studies indicate that certain genetic codes are triggers for Parkinson’s upon contact with certain elements in the environment e.g., pesticides. You will research the many connnections– exposure to pesticides, insecticides, herbicides and fungicides; the presence of metals and chemicals in the well water and water table; or exposure to gasoline fumes in enclosed spaces such as farm equipment sheds or machine manufacturing and repair industries. You will expend much energy being angry and you will worry about your family if they live in the same environment as you live. Your angst may cause you to have other health concerns as you carry on a fruitless search for the reason(s) you have PD.
- PwP will be bombarded with missives, advice and solicitations from purveyors of dreams. These modern day snake oil salesmen have an elixir, a regimen, a diet, an exercise, a meditation technique, and any number of other remedies for Parkinson’s. They all swear that their discovery arrests the progress of Parkinson’s, if not to cure it totally and absolutely. These dreams are but chimera, a promise that cannot be delivered. To be fair not everyone will be a charlatan and some of the approaches do help our lives with Parkinson’s to be of improved quality but know this: there is no cure … yet. Caveat emptor applies to any forays you make into the world of those who sell the ‘elixirs’ and cures.
- Many people think that PD can be easily managed with proper medication. They are wrong. While PD can be managed, it is not done easily. There are significant periods of time when you are in an “off” period with your drugs. They simply do not work with 100 percent accuracy and the timing of “on” and “off” periods may be erratic. The gold standard treatment for Parkinson’s is still a drug called levodopa which was developed over 50 years ago. There are other pharmaceuticals and drug delivery systems that can provide some relief and give the semblance of a decent quality of life for PwP but the public rarely sees the private anguish of the PwP driven underground by pain, involuntary muscle movements, and embarrassing non-motor symptoms. You will find yourself in successive and continual rounds of adjustments with your drugs. Be aware that there is no consensus among neurologists as to the most efficacious drug therapy or therapies.
You will become more knowledgeable than most of your family and friends about the wide range of pharmaceuticals used to treat Parkinson’s. You will research and search for the most effective type with optimum dosage and timing. You will become fanatical about the possible interactions your meds may have with other drugs. You will seek advice from other PwP, pharmacists, dieticians, and other health professionals about the absorption rates of medications following and before the ingestion of certain foods e.g., protein. You will spend inordinate amounts of time and energy on trying to perfect your medication schedule such that it coordinates with activities in your everyday life e.g., meal times, or vice versa.
- You will become conversant with surgical options for treatment of PD e.g., Deep Brain Stimulation (DBS) and ultrasound stimulation which can change, alleviate, and eliminate severe symptoms enhancing the PwP’s quality of life. However, you will also learn that it has limitations; not all PwP are candidates for such surgery and, contrary to reports in the popular media, it is not a cure. It does not stop the advancement of Parkinson’s. It will enhance your quality of life markedly but you will still have some symptoms and problems e.g., speech issues. You will know what a Duodopa pump is and why that change in the delivery of medications is so effective for some PwP. You will know how much it costs and how important it is to lobby for public coverage. The same goes for “the patch” – rotigotine delivered through the skin much like the nicotine patch to bypass the blood/brain barrier differently. At the same time you are studying and understanding these complex details becoming a lay expert in effect, others incongruously are watching and questioning your mental capacity because you walk slowly or have a Parkinson’s related speech problem.Sometimes life may appear very bleak. Photo: S. Marshall
- There is a significant probability that you will suffer from Parkinson’s related depression with clinical symptoms i.e., more than just “feeling down or low.” The same pathways and neurons in the substantia nigra area of the brain produce dopamine (regulating movement) and serotonin (regulating mood). When those neurons die, we stop producing enough dopamine and serotonin resulting in depression for many PwP.
- About 40% of PwP suffer from increased anxiety, which may result in depression as described in the previous point. More likely though it will trigger involuntary muscle movements (sometimes painful if they develop into cramps) which are difficult or impossible to control. It is as if signals from the brain are hi-jacked and sent erroneously to muscles in arms, hands, legs, and feet. Feelings of anxiety can arise from the most innocuous situations e.g., meeting friends for lunch, as it did for me this week, where I developed severe dyskinesia – like movements which became painful cramps in my legs – all in the space of about 10 minutes. Anxiety for many people manifests itself as increased tremor.
- Estimates are that 50% of PwP have hallucinations; they see things that aren’t there. These hallucinations may be from the Parkinson’s itself or from medications. The suggestion that I may develop hallucinations is so powerful that sometimes I look at things that are there and wonder if they are not. It often takes several seconds to make a determination. Of course, once you admit to hallucinations, it is but a short leap for others to consider you cognitively impaired.
- I experience vision issues. I see double … well … not exactly double but weird kind of double where there is a vague outline of overlap but not exactly side by side. Neurologists an optometrists are not particularly interested, or knowledgeable, about vision issues so it remains unresolved. It is complicated by the fact that I wear progressive lens glasses already and perhaps the prescription needs adjusting. In any case, vision problems are a real but neglected part of PD.
Approximately 90% of all PwP experience some reduced intelligibility of speech over the course of the disease. Your voice may become soft and difficult to hear and your speaking rate may slow down. These changes have some obvious consequences e.g., it is harder to get a word in edge-wise in normal conversation as people are not that considerate about letting others speak. However, of greater concern is the perception that PwP with speech issues are either cognitively impaired or socially aloof. In fact, PwP do become less motivated to participate because they find that others either cut them off mid – sentence or discount the value of what they say. It is disheartening and hurtful to realize that your voice is not only reduced in volume, it is at the same time reduced in weight.
- Approximately 50% of PwP develop difficulties swallowing. It should go without saying that this symptom is dangerous as you may choke, develop pneumonia or become malnourished or dehydrated. You will need the professional assistance of dysphagia specialists to treat this condition.
- You will begin to understand that the concept of “progressively degenerative neurological disease” is just a fancy way of saying, “It ain’t going to get better; it is only going to get worse”. The literature says that PwP can expect to live another 20 to 24 years (assuming no dementia) after diagnosis during which time the disease will progress and your condition will deteriorate. You will spend the last few years of your life in a care facility and hopefully you, your family and the state have provided enough economic security to assure you comfort and dignity.
- Within five years of your diagnosis you personally will experience many of the above symptoms and situations. You will meet many PwP facing other situations you are not. You will come to the realization that many of your symptoms have been with you for a long time (maybe ten years of more) before your official diagnosis. At this point it dawns on you that your disease has advanced much further than you thought at the time of your official diagnosis.
- Your obituary will say “ … after a long and courageous struggle with Parkinson’s …” or words to that effect. Most acquaintances will read these eight words with sympathy but Persons with Parkinson’s and their families will silently and reverently acknowledge you as a champion – someone who defied a soul sucking disease to reach your living age.
I have covered a lot of territory in listing the many features of Parkinson’s that I believe render it to the category of ‘soul sucking’.
You may think that I am overly pessimistic and not appreciative of the research, development and delivery of the many therapies that provide a better quality of life for PwP. My rejoinder is that such therapies exist precisely because Parkinson’s is soul sucking. A recent report published in the Journal of the American Medical Association (JAMA, see https://www.urmc.rochester.edu/news/story/5184/parkinsons-disease-a-looming-pandemic.aspx) postulates that the incidence of Parkinson’s will reach pandemic proportions within the next 20 years. It states quite bluntly that the road to a cure is for the Parkinson’s community, especially PwP and families, to become aggressively vocal and DEMAND better treatments and a cure, following the precedent established by HIV/AIDS sufferers.
My hope is that my observations add weight to the discourse on the severity of Parkinson’s; it is more than just tremor. It is soul sucking!
If you think that I am wrong or that I have misrepresented any aspect of Parkinson’s symptoms, of Persons with Parkinson’s and their families, or of the professionals who work diligently to improve our quality of life, please speak up. Send me a comment at the bottom of this blog. Write a rejoinder in your own blog. The discussion will shed much needed light on the dark corners of Parkinson’s.
One Final Note
It is my intention to write a companion blog piece that is tentatively entitled: WAYS TO LIVE WITH PARKINSON’S, A SOUL SUCKING DISEASE. Watch for it.
© Stan Marshall (The PD Gardener 2017)