Winter 2021

In This Issue:

  • Mindfulness: What Is the Connection with Pain? by Penney Cowan
  • ACPA Five Minute Relaxation Exercise
  • Walk with a Doc
  • Relaxing in Flow State: How Flow Can Regulate Your Nervous System
  • Mindfulness for Pain and Suffering in the COVID-19
  • Medical Cannabis for the Treatment of Chronic Pain
  • How to Sleep with Back Pain
  • Hospice, Pain Management, and the End-of-Life Process
  • How to Prepare Your Home When Diagnosed with Parkinson's Disease
Mindfulness: What Is the Connection with Pain?
Penney Cowan
Pain can bring life to a screeching halt. Pain prevents us from going about our daily lives or making future plans. This physical pain is the root cause and controlling factor, pain and nothing else. Right?
Well, let’s take a look at how a person begins their journey from person to patient. Clearly, pain has had an impact on our physical being. We may struggle to complete the simplest of tasks. Our energy level is limited to small bursts of time, sometimes not more than a few minutes. We hesitate to plan for tomorrow, let alone for the future. Activities with friends and family diminish and far too often disappear as we find ourselves isolated and alone---and in pain. It is the physical pain that restricts our ability to function, right?
So why does our health care team keep talking about things like stress management, biofeedback, counseling, group therapy, and other ways to explore our emotions? Don’t they believe that our pain is real? 

Do they think we are exaggerating our pain and suffering? 
I must admit, that is how I felt when I heard those words about depression, emotions, counseling. I was not crazy, just in pain! Moreover, who would not be depressed if her life were controlled by pain? However, I have learned a great deal since my journey as a person began 41 years ago, when I left the pain program at the Cleveland Clinic. My pain is real, but it not only controls my physical being but my emotional being. As I began my journey back to a person, I realized they are connected in so many ways. One of the most important skills I learned in pain management was to listen to my body.  

The problem is that we get so wrapped up in what we are doing that we ignore the little signs of increased pain and often do not hear that warning voice until it is screaming at us. It is then that we retreat, giving in to the pain. As we think about what we just did, we tell ourselves that we will never do that activity again. Over time, we realize that we have eliminated many activities in our life. If only we had heard that little voice that says, “I’m not comfortable, take a five-minute break please!”

It is exceedingly difficult when you are in pain to believe that it is not all physical. Yet, we know that the more we think about our pain the more we will suffer. So, how can we not think about our pain when it screams at us and is completely in control of our lives? 
That is where mindfulness enters the picture as a significant component to living with pain. Not only do we learn to listen to our body, but we can also—with practice—tell our body how we want it to feel. We can regain control, something everyone with pain wants; to have control of his or her life again, putting the pain in the back seat.

Mindfulness is one of the top requirements of pain management.  Scientific research shows mindfulness can help manage stress-related physical conditions, reduce anxiety and depression, cultivate positive emotions, and help improve overall physical health and well-being. Give it some thought as you explore the resources below.

Free apps available for iOS and Android

Smiling Mind: Developed by psychologists and educators, Smiling Mind is an excellent free option if you want to develop a practice with the whole family. It has dedicated programs tailored to adults, kids, and families (as well as some professional options for at work and in the classroom). Within each demographic are more specific options, too, whether you're looking for guided meditation exercises for stress, sleep, focus, relationships, sport performance, mindful eating, or more. And if you’re a total newbie, don’t worry. It covers the fundamentals to get you started, too.

 My Life: Your emotions change. That’s why My Life offers a personalized mindfulness solution tailored to how you’re feeling right now. 
UCLA Health: This apps offers basic meditations in both English and Spanish. The app features about a dozen meditations of different types. You can learn to focus on your breath, your body, or sounds; work with difficult emotions; and cultivate loving-kindness in sessions ranging from 3 to 19 minutes long. 

Insight Timer: This app is free on Apple and Google Play and manages to maintain a near perfect 5-star rating with more than 200,000 reviews on Apple's App Store. There are over 30,000 pre-recorded guided meditation sessions loaded onto Insight Timer, as well as the ability to refine sessions based on how long you have to practice. Furthermore, it comes with an in-app progress keeper that enables you to chart your progress and earn badges for the time you've spent meditating. The guided sessions are led by well-known yogis and mental experts as well.

Relax Now: Can be found on Apple and Google Play and is free. Simple and straightforward, Relax Now is just what it sounds like—a quick tool to help your body relax with recordings from certified hypnotherapist, David Ridgeway, D.Hypn., M.N.C.H. Eight different videos provide immediate relief, but you'll also find plenty of recordings with multiple endings designed to either energize ("wake up") or calm you ("sleep"). There are also custom background music options for your meditation sessions.

Healthy Minds Program: Free on Apple and Google Play this app was created by a nonprofit affiliated with the Center for Healthy Minds at the University of Wisconsin-Madison, the totally free Healthy Minds Program app has meditations, exercises, and podcast-style lessons designed to build foundational mindfulness skills. Not only that, but you’ll have the opportunity to learn how and why meditation works, which might just be compelling for skeptics and enthusiasts alike.
ACPA Five Minute Relaxation Exercise

Want a way to unwind for five minutes? There is a free relaxation exercise on the ACPA web page:

To help you get the most out of your relaxation time, below are some helpful tips:

How to get the most out of your relaxation exercise:
  • Wear loose clothing.
  • Find a place where no one will disturb you.
  • Allow yourself time to listen to the entire exercise and enough time to appreciate what you learned.
  • Think of an event in your life that creates good feelings, such as Christmas day, time spent with a friend, a vacation, a place where you can be alone.  
  •  Imagine how you felt when you were in another time and place. Think about how it smelled, the sounds that were present, the feeling you had about the event, whether it was cold or warm, who was there, what was taking place in your life at that time, the words that you heard from others.
  • After you select a certain feeling or event, practice recreating at other times when you are not listening to the tape.
  • Be aware of body contact with the chair you are sitting in or where your feet touch the floor. Try to feel what is beneath you.
  • When you feel yourself becoming tense, take a deep breath and hold it until you feel the tension in your chest. Try to hold it a moment longer and then expel the air. Notice how much relief you felt from letting that air out. Do it again and this time allow the tension in your body to flow out with your breath. This will take practice, but it is an excellent way to do a quick relaxation anytime, anywhere.
  • Place an object in your work setting that will remind you of that “special place” you imagine while doing your relaxation exercise. Seeing the object will remind you and help you to take just a moment to do some very brief deep breathing. 
  • Music can be helpful in relaxation. While driving it is helpful to listen to relaxing music. At home take a few moments to sit down and listen to your favorite piece for five minutes. ACPA has four scores of music written by R.G. Farrell for the ACPA. List to them at:
  • Be aware of the tension in your face. Ask yourself if you are gritting your teeth and if your forehead is smooth. Make sure your lips are soft and hardly touching.
  • Notice your hands. Are you holding them tightly together or are they limp and soft? Are your wrists limp, or are you holding them stiffly?
  • Good posture is important. If your body is supporting your weight evenly there will be less stress on certain parts of your body. Sit straight up in your chair, allowing the chair to support you. Let your neck support the weight of your head by holding your head up. Keep your feet flat on the floor.
  • When you are thinking of several different issues at the same time, write down all that you are trying to remember. If it is written down you will not forget about it, and you can relax for a time before working through your list. This is especially helpful at night when you are trying to get to sleep.                    
Walk with a Doc

Walking is one of the best things you can do for your health. Many diseases, conditions, and ailments can be prevented or even healed by participating in regular physical activity. Fortunately, even moderate-intensity aerobic activity such as walking can provide these health benefits. See Walk with a Doc's 100 reasons to walk here:
Relaxing in Flow State: How Flow Can Regulate Your Nervous System
Celine Tien is the founder of Flowly and the Principal Investigator on two phased clinical trials at University of Pittsburgh Medical Center and University of Southern California. 
There is no one size fits all for chronic pain management. As the Principal Investigator on clinical trials for pain management and the head of a team developing pain management tools, I have learned how uniquely different each pain experience is. However, after spending years researching and working with patients, my team and I have discovered some established techniques that could become an effective tool in each person’s toolbox. One of the best techniques we recommend is getting into flow state.
What is flow state? 
Flow state, or flow, is when you are simultaneously relaxed and focused. It is a mental and physical state many describe as “in the zone”— where you are completely engaged with the activity at hand and the activity is rewarding in of itself. Flow feels timeless. Your whole being is absorbed with an activity and you feel a sense of control over the situation and outcome.
  • Quiet your mind
  • Relax you
  • Generate dopamine
  • Focus you

To understand how powerful flow is, we need to first understand your Autonomic Nervous System (ANS). Your ANS is made up of two primary branches: your sympathetic system (fight, flight, or freeze mode) and your parasympathetic system (rest, digest, and recover mode).
Both ANS branches are absolutely necessary. Your sympathetic system helps to alert you to threats and engage your body so you can respond to those threats. It produces quickened heart rate, increased sweating, and so on. On the other hand, your parasympathetic system turns on to allow your body and mind to relax, recover, and even digest food after meals.
The majority of people with chronic pain or chronic conditions have trouble regulating the two branches of the ANS. Often times, the people with pain we work with live at a near constant “fight-or-flight” mode because their body engages their sympathetic system to combat the pain they experience or anticipate experiencing, and then cannot re-engage their parasympathetic system to rest and recover.
You’ll notice that flow creates a perfect balance between “relaxation” and “focus” which means when your body is in flow state, it can generate just enough arousal from the sympathetic system to focus, while simultaneously engaging your parasympathetic system such that you’re feeling relaxed and restored.
Flow is a rewarding experience in and of itself, but it can be one of the best training tools for regulating your ANS.
How Do You Engage Flow? 
There are a few tried and true methods for generating your own flow state, but today we will touch on two primary ways:
Engage in an activity you are passionate about
  • For many people, engaging in an activity they love can move their mind and body into flow. This can include activities like writing, coloring, baking, playing basketball, and more. I have worked with people with chronic pain who report even just engaging in knitting once a day can help generate flow, making them utterly focused yet relaxed while absorbed with the act of knitting itself.
  • If one particular activity doesn’t immediately come to mind for you, then give yourself the time to experiment with various activities that could put you into flow. Even an adult coloring book could be the answer.
  • Setting aside 10 - 30 minutes a day to engage in this activity can strengthen your ability to generate flow within yourself to feel happier and calmer.
Do HRV biofeedback sessions
Engaging in an activity is a very accessible way to learn how to generate Flow State. However, it can be inconsistent depending on the activity. One of the most consistent methods of achieving flow is through a practice called biofeedback. Biofeedback is the ability to see what your body is doing in real time and learning to change it.
What is HRV biofeedback?  
Biofeedback is a type of training and therapy that allows you to see how your body is doing in real time and then learn to affect and change your body.
HRV biofeedback specifically focuses on teaching you to increase your Heart Rate Variability (HRV), which is a measure of the variance in time between your heart beats. HRV can be very complicated but here is what’s important to know: HRV can directly affect your nervous system. An increased HRV can activate your parasympathetic system, your “rest, digest, recovery” mode, which can then generate flow. This is powerful because you can train your body to move into flow state on command. 
In traditional HRV biofeedback, you put on a heart rate sensor and you are able to see your real time heart rate graph in a computer in front of you. A specialist is then able to walk you through various relaxation exercises and show you how your heart rate graph starts to change in front of you. With consistent practice, you learn how to change your graphs on your own and subsequently auto-regulate your nervous system.
Biofeedback is traditionally hard to access because it requires facilities and a specialist to conduct the sessions with you. However, new technology now enables you to do biofeedback while you are wearing a Virtual Reality headset and are immersed in a relaxing and comforting virtual world.
Doing biofeedback in VR can be powerful because it can more intuitively teach you biofeedback while you are feeling completely relaxed and focused on the VR worlds you are in. 
My team and I develop an app that does just this. It’s called Flowly: relaxation training and is on the Apple App Store and also in clinical trials at UPMC and USC. However, there are other options for biofeedback out there, and you can always learn to generate flow through different activities.
Most importantly, give yourself the time to explore various ways to tap into flow state. Understanding how to manage your nervous system is all about meeting your body where it is at.  

There is a fee for this app but if you are interested, they are offering a 15% discount to ACPA members. Use code ACPA15.
Mindfulness for Pain and Suffering in the COVID-19 World
A team of researchers at the University of Queensland, University of Sydney, and University of California San Diego are seeking adults experiencing pain to participate in a 45-minute online meditation study exploring how mindfulness reduces the impacts of the COVID-19 pandemic on pain, suffering, and wellbeing.
Participants will learn to meditate and can enter a monthly draw to win an AUD$50 prepaid visa card.

Medical Cannabis for the Treatment of Chronic Pain
Michelle Sexton, MD, Assistant Adjunct Professor, Department of Anesthesiology; Voluntary Clinical Instructor, Department of Family Medicine and Public Health University of California San Diego.
Mark S. Wallace, MD, Professor of Anesthesiology; Chief, Division of Pain Medicine, Department of Anesthesiology, University of California San Diego
Note: The ACPA does not endorse any treatment or medicine. Such decisions must be made in consultation with your health care provider. In addition, be aware that cannabis remains an illegal substance in many states.
Cannabis has a long history of relatively safe use as a botanical medicine, found in Chinese texts dating back to 2900 BC and used medicinally in India since 1000 BC. In the last few decades, the scientific discovery of an endocannabinoid system, a homeostatic biochemical network found in all mammals, has trigged an intense interest in targeting this system for health and in disease.[2] The use of cannabis to treat chronic pain is not a new idea as many civilizations have recorded history of using cannabis for pain, as well as a variety of other conditions. Despite the psychoactive effects associated with higher doses, both historical and contemporary data suggest that the therapeutic benefit for pain can be achieved at doses below the intoxicating dose.  
Modern research has supported that cannabis may reduce the use of opioids and other drugs that people with pain may lean on, and improve quality of life in patients affected by chronic pain.[4, 5] The National Academies Committee on the Health Effects of Marijuana concluded that there is “conclusive or substantial evidence” that cannabis is effective for the treatment of chronic pain in adults.[6] This pain benefit occurs from the binding of the THC molecule with a cannabinoid receptor that is involved in pain processing, both inside and outside of the brain, through the endocannabinoid system.[7]
While cannabis contains many different cannabinoids and other chemical compounds, the THC molecule seems to outperform the others as a pain-reliever, at least at this stage of research. The main drawback of the THC molecule is the psychoactive component, which can have effects on cognitive function, such as on being able to focus on and use information in the short term (working memory), and organizing tasks, remembering details, managing time (executive function). However, in working with people with pain using cannabis over the last decade, our experience is that therapeutic dosing of cannabis (as compared to recreational dosing), guided by a knowledgeable practitioner, may decrease these side effects. Low dose THC, given in combination with cannabidiol (CBD), and given in a slow dose titration can offer a therapeutic solution that often sidesteps the psychoactive side effects. In fact, we are learning that ‘less is more’ when it comes to dosing THC, meaning that lower doses of THC are more effective for pain than higher doses.[9]  
The current estimate is that 100 million U.S. adults are burdened with chronic pain, and that this pain motivates as many as half of all annual visits to see a doctor.[8] There are non-drug and drug treatments for addressing this pain burden, but many patients need a multimodal approach to pain. This approach can include: trials of injection therapies, pharmaceuticals, pain psychology, mindfulness, exercise or physical therapy, acupuncture and nutritional intervention.  For those who are struggling to taper opioids, cannabis may be a tolerable and safe alternative, when guided by knowledgeable healthcare providers that will monitor you and be watchful for any drug interactions.

The research into optimal dosing has lagged due to the inaccessibility of research grade cannabis products to study. The market is making many claims about various ratios of cannabinoids and the ability of CBD to treat pain, but as yet there is no solid research or evidence in humans to support these claims. The only two cannabinoids that have been approved by the FDA are THC and CBD, but not yet for pain as an indication. Meanwhile, many patients around the world are reporting that they receive benefit from cannabis for their pain, to promote better sleep and for improvement in their mood, ability to function and general quality of life.[10]

1.      Russo, E.B., History of cannabis and its preparations in saga, science, and sobriquet. Chem Biodivers, 2007. 4(8): p. 1614-48.
2.      Pacher, P., S. Batkai and G. Kunos, The endocannabinoid system as an emerging target of pharmacotherapy. Pharmacol Rev, 2006. 58(3): p. 389-462.
3.      MacCallum, C.A. and E.B. Russo, Practical considerations in medical cannabis administration and dosing. Eur J Intern Med, 2018. 49: p. 12-19.
4.      Lucas, P., S. Boyd, M.J. Milloy, et al., Cannabis Significantly Reduces the Use of Prescription Opioids and Improves Quality of Life in Authorized Patients: Results of a Large Prospective Study. Pain Med, 2020.
5.      Corroon, J.M., LK; Sexton,M, Cannabis as a Substitute for Prescription Drugs- a Cross Sectional Study. Journal of Pain Research, 2017. 10: p. 989-998.
6.      National Academies of Sciences, E., and Medicine, The health effects of cannabis and cannabinoids: the current state of evidence and recommendations for research. 2017, National Academies Press: National Academies Press.
7.      Hohmann, A.G. and R.L. Suplita, 2nd, Endocannabinoid mechanisms of pain modulation. AAPS J, 2006. 8(4): p. E693-708.
8.      Schappert, S.M. and C.W. Burt, Ambulatory care visits to physician offices, hospital outpatient departments, and emergency departments: United States, 2001-02. Vital Health Stat 13, 2006(159): p. 1-66.
9.      Wallace, M.S.T.D. MarcotteJ.H. Atkinson, et al., A Secondary Analysis from a Randomized Trial on the Effect of Plasma Tetrahydrocannabinol Levels on Pain Reduction in Painful Diabetic Peripheral Neuropathy. J Pain, 2020.
10.     Sexton, M., Cuttler, C, Finnell JS, Mischley, LK, A Cross-Sectional Survey of Medical Cannabis Users: Patterns of Use and Perceived Efficacy. Cannabis and Cannabinoid Research, 2016. 1(1): p. 131-138.
How to Sleep with Back Pain

by Andrew Warren of Mattress Clarity
If you’ve ever had to deal with back pain, you know just how hard it can be on both daily activities and your sleep schedule. Doctors have long recognized a relationship between back pain and sleep quality: aches and discomfort may make it more difficult for you to fall asleep, or to enjoy deep, restorative rest.
At the same time, impaired sleep quality may worsen the symptoms of back pain. To stop back pain from getting in the way of a good night’s sleep, we’ve put together tips for each type of sleeper as well as broken down the two types of back pain often associated with sleep.
Tips for Sleeping with Back Pain
The good news for those who suffer from back pain is that a good night’s sleep is attainable with a few basic modifications to your sleep hygiene, including potential changes to your preferred sleeping position.
Tips for Each Type of Sleeper
One of the best ways to address back pain, particularly back pain associated with sleep, is to adjust your sleeping position. Here are a few tips and guidelines. 
Back Sleepers
Sleeping on your back is generally considered to be the best bet for alleviating pain. That’s because back sleepers are able to keep their spine neutral, without too much of their body weight pressing on the spine or causing tension.
According to the Cleveland Clinic, sleeping on your back “evenly distributes weight across the widest surface of your body, minimizing pressure points and ensuring proper alignment of your internal organs.”
Back sleeping can be especially therapeutic if you sleep with elevated knees. You can achieve this simply by stacking a pillow or two under your legs; you can experiment with different pillows to find something that feels comfortable. The reason elevating your knees can prove helpful is that it allows your spine to assume its most natural curvature; this is especially true if you also place a small roll or towel underneath your neck.
Side Sleepers 
While sleeping on your back is probably the easiest way to achieve a neutral spine position, sleeping on your side may also work; if this feels more comfortable and natural to you, it’s recommended that you place a pillow under your neck and another one between your knees, which is crucial for facilitating health spinal alignment and thus for alleviating back pain.
Side sleepers are advised to avoid sleeping with their knees bent toward their face, or in what’s known as the fetal position. According to Keck Medicine of USC, the fetal position “promotes an uneven distribution of weight that can cause back pain and sore joints.” If you find yourself naturally shifting into the fetal position, be deliberate in untucking your chin and adjusting your knees; or, simply shift onto your back. 
Stomach Sleepers
Sleeping on your stomach is probably the worst option for those who deal with back pain. This position puts a lot of pressure on the spine and on the muscles that surround it, and also flattens the spine’s natural curve. Additionally, Keck Medicine notes that sleeping on your stomach forces you to turn your neck, which can cause pain in the neck, shoulders, and upper back.
For those who are most accustomed to stomach sleeping, the best way to do it is to place a small pillow under the belly, which helps keep the back slightly arched and the spine naturally curved. This may mitigate lower back pain but won’t necessarily help with the neck pain; really, the ideal solution is to try a different sleeping position.
Lifestyle Tips
A few final guidelines for those who deal with sleep-related back pain include:

Choose the Right Mattress
A good mattress for back pain will allow you to feel fully supported, not like you are sinking into the middle of your bed. Generally speaking, something in the medium-firm range is best for supporting spinal alignment and for keeping tension off key pressure points.
Practice Yoga Before Bed
A little pre-bedtime yoga may also prove helpful. Not only can yoga and intense stretching help release tension in the body, but a consistent yoga practice can also clear the mind of stress and worry.
Use Healthy Posture
Finally, you can prepare yourself for a good night’s sleep simply by exercising the right posture during the day. WebMD provides some helpful tips for maintaining good posture during the work day: “Don’t slump over your keyboard. Sit upright, with your shoulders relaxed and your body supported against the back of your chair… Keep your feet flat on the floor.”
Types of Back Pain

Morning Back Pain Do you ever wake up feeling stiff, achy, and sore? Morning back pain is a common affliction, and while it is sometimes indicative of a serious medical diagnosis, it may also reflect the wrong choice in mattress, pillow, or sleeping position. 
Science confirms that acute back pain is actually most common in the early hours of the day. Most of the time, this early morning back pain is concentrated in the lower part of the back. The fact that this condition is so common at the start of the day points to the significant role that sleep can play in inflaming it.
Indeed, the most common cause of morning back pain is poor sleep posture, which puts pressure on the spine and causes it to flatten or compress. However, in some cases, morning back pain may also be linked with degenerative disc disease, which causes the vertebrae to deteriorate. The chronic pain condition fibromyalgia may also cause morning back pain.
Nocturnal Back Pain
While some people suffer from back pain upon waking, others struggle with it throughout the night. Nocturnal back pain can come on suddenly. “A person can actually go through a day virtually pain-free,” notes WebMD. “But then at night, he or she might find it nearly impossible to get a full night’s sleep.”

Nocturnal back pain is typically concentrated at the lower part of the back and may be caused by any number of factors. Some common triggers include illnesses that impact the movement of the spine, including degenerative disc disease. Conditions such as scoliosis, which changes the curvature of the spine, may also have an impact. For about 5 percent of those with lower back pain, the underlying issue may be a chronic or systemic health condition.
Compared with early morning back pain, nocturnal back pain is less likely to be caused by a poor sleep experience. With that said, if you find that you toss and turn in bed while encountering ever-increasing pain and discomfort, that may be a sign that you’re sleeping on a bad mattress.

Don’t Let Back Pain Interfere with Your Sleep
Back pain and poor sleep often go hand in hand, yet simple lifestyle changes can bring this vicious cycle to a conclusion. In particular, make sure you have a medium-firm mattress that offers you ample support; and, that you’re sleeping on your back or your side, with a posture that promotes spinal health and alignment.
Hospice, Pain Management, and the End-of-Life Process
By Nadine Olea Castro BSN, RN

Many ACPA members are responsible for the care of older relatives or spouses. While we may be familiar with sound pain management practices for most times of life, knowing how to manage pain for loved ones at the end of life can still be a challenge. We hope this article helps.
Hospice and pain management are commonly misinterpreted as ways of giving up. Those who work in this area of healthcare widely agree that when someone decides to receive hospice care, it’s far from giving up. It’s a choice to take control over the rest of your life, a brave decision to accept what cannot be controlled, and allow a natural process to surface without having to suffer through it. This process is the dying process. Yes, the "D" word. A conversation on death and dying is much more taboo than a sex conversation is these days. Yet it's as natural as birth. The last stages of life can be a very peaceful experience but the natural changes that occur in the body can carry uncomfortable symptoms, pain being one of the most common that patients report. This article attempts to give a better understanding of the end-of-life process, the important role pain management has in it, and how we can still give a loved one strength without the suffering.
Caring for the elderly during their end phases of life can mirror the care and nurturing during the beginning phases. Families of those who have died with hospice care often find intrigue in witnessing how life comes full circle in this way. In the beginning stages of life, a baby cries with uncertainty not knowing their surroundings or what to do. The only way they communicate their discomfort is to moan, fidget with restlessness, and cry in frustration when they’re not understood. Similarly, elderly patients with chronic disease during the dying process may have difficulty communicating their needs. As the body shuts down due to advanced disease, organ functions also slow. They can spend hours repeatedly and unsafely getting out of bed with restlessness, anxiety, and confusion. The elderly patient who is unaware of the situation and crying in pain is not always treated with the same unconditional compassion as a young child. If a baby is in distress, we do everything in our power to ensure their comfort and let them know they are safe. But someone with chronic disease in this same mental and emotional state is often faced with shame.
The last breaths of life can be as easy as a sigh of relief, but the entire dying process is not like the movies. Changes in circulation cause all the organs to malfunction. The heart and lungs work hard through these changes. Fluid builds up and can travel to the lungs. As fluid accumulates, patients have reported a sense of suffocation. Fever is common due to the change in body temperature as circulation slows. Pain is one of the most common symptoms patients report, which can be a debilitating experience as it is not only physical. Total Pain consists of: physical, social, psychological/emotional, and spiritual pain (Leleszi & Lewandowski, 2005). Treating every aspect of pain is essential in making sure one can find hope in the quality of the rest of their life.

With medically managed and appropriately dosed comfort medications, the above-mentioned symptoms can be alleviated. Morphine is the most common medication a doctor prescribes for pain management during the end-of-life phases, but it’s also used to treat dyspnea, (difficulty in breathing). And it is shown to be very effective. Many hospice organizations also utilize a number of services that can help ease a disease process and provide nonpharmacological benefits such as music and pet therapy, volunteer companionship, and spiritual and social visitations in addition to the emotional support provided by the family, loved ones and nurse.
If you or someone you know is going through a serious illness, it is important to know how to make the person feel empowered in a declining situation. Here are some reminders I have found to be effective in my work experience:

  1. When someone tells you they are in pain, believe them. Chronic pain and pain during end of life can reoccur. Imagine knowing you're going to have pain in a few hours.
  2. Accept them for who they are today rather than push them to do what they may not be able to physically do anymore. If they truly do not have the physical capacity to do activities they used to, forcing these activities can cause feelings of worthlessness.
  3. Release resistance against comfort medications and the idea that strength comes with suffering. People believe that learning from suffering is a life worth living because there can be valuable wisdom generated from sufferable circumstances. But when someone is actively suffering, the burden can be more debilitating than anything else. Patients have verbalized that ongoing pain makes them feel weak, anxious, exhausted, and mentally and emotionally drained. Reassuring someone that it is ok to receive comfort medications creates a nonjudgmental and safe space for them to know that they do not have to suffer through their disease.
Understanding the significance of pain and comfort management during the end of life is important in making sure someone who has been suffering with serious illness can still maintain their dignity. Once a disease advances and treatment is no longer effective, a person has a choice to take control of their own journey. While the physiological changes that occur in the body during this time cannot be controlled, the comfort level can be. Giving people their autonomy to choose to manage their own pain and comfort is not giving up, it’s giving them hope. They may not be able to walk like they did 70 years ago but they are not weak. They fought their fight with disease and do not need to suffer to be recognized for their strength.
Be advised the information in this article is based on my work experience and opinion. Please consult your physician for comfort management options.

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Wiegand, D. L., & Grant, M. S. (2014). Bioethical Issues Related to Limiting Life-Sustaining Therapies in the Intensive Care Unit. Journal of Hospice & Palliative Nursing, 16(2), 60–64. 
How to Prepare Your Home When Diagnosed with Parkinson’s Disease
Lena Borrelli is a Tampa-based freelance writer who has worked with leading industry titans, such as Morgan Stanley, Wells Fargo, and Simon Corporation. Her work has most recently been published on sites like TIME, ADT, Fiscal Tiger, Bankrate and Home Advisor, as well as many other websites and blogs around the world.

We are sharing this article because many people with pain struggle with some of the same issues and felt this would be helpful information. 

Approximately 60,000 Americans are diagnosed each year with Parkinson’s Disease, and by 2030, the Parkinson’s Foundation predicts that it will affect more than 1.2 million people, becoming a greater part of daily life. 

“The motor and non-motor symptoms of Parkinson’s can have dramatic effects on the ability for a person to interact with their home environments,” explains Dr. Michael Okun, the National Medical Director at the Parkinson’s Foundation.

 Parkinson’s is common among the eldest.  If you or your loved one has Parkinson’s disease, home modifications are crucial to improve the quality of life.  

Home adaptability
When you have Parkinson’s Disease, you can experience a myriad of symptoms that interfere with your daily routine. The first step is learning to identify your symptoms so you can recognize them as they occur and address them accordingly. Symptoms may include:
  • Tremors or shaking of your hands, arms, legs, jaw or head
  • Stiffness of arms, legs and trunk
  • Slow movement
  • Trouble with balance and coordination

Daily living tasks such as going to the bathroom, getting in and out of bed, and walking around the house are often more difficult.
However, if you know what to look for, you will be able to understand your symptoms and address them accordingly. While each person is different and experiences unique challenges, there are many modifications around the house that could make home a little more agreeable. 
Many homes will need modification. Some of the most common updates that need to be done are very obvious. You should remove all glass fixtures, sharp items, and wall hangings that could cause major injury. Rounded edges for handles and corners are good. 

Your occupational therapist (O.T.) or rehabilitation specialist can help guide you through these modifications to find the best ones for you. 

Your home insurance provider may also be a huge help. You must update your home insurance provider about any modifications you make. You can increase your personal property and liability coverage. It may increase your premium by a few dollars, but you can have peace of mind with the protection you get.

Living Room and Bedroom Adjustments

Rearrange your furniture: The first place to start is with the placement of your furniture. Since Parkinson’s is a challenge to your mobility, it is important to clear wide pathways and make movement a little easier. 

The Parkinson’s Foundation knows that people with Parkinson’s do much better when they can open up spaces in the home. When talking to those living with Parkinson’s and their care partners, we recommend removing furniture and widening walking areas. It is not uncommon to get stuck or to fall in small closets or in tight kitchens. 
Replace necessary furniture: The ideal furniture will feature straight backs, armrests, and firm seats that will make it easier for you to get up and move. Avoid chairs that are low or flimsy. Furniture should be sturdy; avoiding swivel chairs is recommended. 

Remove tripping hazards: Long wires and cords can easily become tripping hazards when you’re not looking, so arrange for easy access to outlets and secure loose cords. This also could mean changing your flooring. Changing flooring from slippery tile and hardwood floors to non-skid surfaces can help avoid falls. 

Let there be light:  All rooms should be brightly lit so that things are clearly seen. A dark room increases the chances of missteps.
Lights that you can turn on and off by sound or touch are ideal choices, so you do not have to fumble with a switch. Lighting in all rooms of the house should be bright enough to easily distinguish between different objects, as vision problems are often a symptom of the disease.      
It’s best to have motion lights in high traffic areas. If your loved one wakes up in the middle of the night and starts to travel around, it will alert others or, at the very least, provide them light to see around. Automatic nightlights throughout the house are great and cheap as well.

Install handrails, grab rails and ramps as needed: 
Anytime the stairs can be avoided, it’s helpful in the long run, but a sturdy rail on both sides that one’s hand can wrap totally around can really go a long way with safety and limiting the risk for falls.
It is recommended using handrails along walls, hallways, and stairwells where there is nothing to hold on to. They can be extremely helpful in improving balance and preventing falls.

Some experts advocate the use of ramps instead of stairs. It’s ideal to replace all stairs with ramps for easier access. Also, install grab rails on the sides of the wall.

Reconsider your bed: A firm mattress should be used instead of a waterbed or a flimsy mattress.  Bed bedrail can offer easier movement. Beds should be attached with a pole to assist easy movement in and out of the bed. 

Add extra security: Proper alarms and security systems are recommended when reassessing your home.  Ensure overall safety at home by installing smoke and carbon monoxide detectors. Make sure that you have one per floor and that they are working properly. Contact your home security provider to inspect your security systems if they’ve been installed for a while now.”

Bathroom adjustments: This is one of the most important places for enhanced safety, but it does not have to be complicated. Our recommendations are often a chair for the shower and handles or grab bars by the toilet for safety.

In the bathroom, an elevated toilet seat and a secure grab bar on the wall can make it easier to get on and off the toilet. A roll-in shower can be useful for people in wheelchairs, and a non-slip bathroom mat is helpful for all.
Grab rails should be installed on walls along bathtubs and toilets. This can help the individual to easily move and get up without losing balance.

A majority of accidents happen in the bathroom, specifically during bathing activities. Getting in and out of a shower tub is very dangerous. If you are willing to do construction, it is best to create a shower that has a level floor without a lip at all. This usually requires tile or a tile-like finish for the floors, but it makes coming and going from the shower much safer.

Kitchen adjustments: In the kitchen, small modifications can help. Using handles on cabinets instead of knobs can make opening cabinets easier and moving commonly used objects to a more accessible location can help dramatically.

You also want to consider height. In kitchens, have counters that are low so that it’s accessible via wheelchair. 

There are several kitchen items that can especially be of help. Weighted or adapted utensils are a lifesaver.  There are also weighted cups and mugs that make it harder to spill and easier to drink from when dealing with tremors. Another trick is using non-slip drawer liners as a placemat, so the plate stays put, even though their hands may be moving.
Other items that can help include an electric jar opener for tough lids and an extended lever for lift-tab cans. Pans with a wide base are less likely to knock over, and a spike board can help keep the cutting board still while you are peeling and chopping. 

Just be sure to find a place for storage. Decluttering a house makes it much safer. The fewer items on the shelf, countertops, walls, or even the floor make coming and going safer for all.
Financing Home Modifications
Sometimes, it is not so much what to install but how to pay the bill when it’s all done. Most people with Parkinson’s disease end up paying for home modifications out of pocket.  But there are ways to save on modifications. Some alternative include: 
  • Long-term care insurance coverage
  • Funding through VA programs 
  • Medicaid and Medicare home modification coverage 

Regardless of your financial situation, start small, although building a ramp or installing a stairlift may be needed down the road. By focusing on more efficient and cost-effective aids, you can save in the meantime. This is much less costly and can keep the patient moving, which is the key to success with managing Parkinson’s.  
Helpful Tips
In addition to the more intensive home modifications, there are simple things that you can do to create a calm home and turn it into an enjoyable space to live in. This can include painting your home in soothing colors and decorating spaces with feel-good items like family photos.

Seek a Helping Hand 
To help you stay active at home, there are many online communities dedicated to health, wellness, fitness, and support. An occupational therapist (OT) can also help. O.T.’s can help people with Parkinson’s disease work on performing tasks that become more difficult. A short list of things an OT might work on is turning over in bed, getting in and out of bed, creating good posture for drinking and eating, and preventing falls.

Ordering an O.T. home visit can be very helpful. They can walk through your home and make specific recommendations for changes in the layout—or alternatively additions to rooms such as the bathroom—which can make living easier.
It is obvious that these home modifications are applicable to not only people with Parkinson’s but to a safe home environment in general for older adults and people with pain.

The American Occupation Therapist Association (AOTA) can help you find the right occupational therapist for your needs so you can benefit from personalized support while you adjust.
Take Advantage of Technology 
The addition of new technologies from Google Home and Amazon Alexa allows for greater flexibilities and freedoms for people with Parkinson’s who could have challenges holding or reaching household devices. You can use your voice to make a call, play a favorite album, surf the web, or even call for emergency help.

Adapting and Looking Ahead 
Every day, the quality of life is improved for countless people with Parkinson’s Disease all across the globe, thanks to continued technology developments, combined with the added exposure and research from the Parkinson’s Foundation and others like it. No matter how you choose to adapt your home, one thing is for sure – there is plenty of support to help you find your way.
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