Fall 2020

In this Issue:
  • Change by Penney Cowan
  • Word to the Wise
  • The Power of Exercise: How Movement Can Help You Manage Chronic Pain
  • Fall Prevention Resources for Older Adults and Caregivers
  • Twin Cities Pain Clinic 2020 Pain Awareness Virtual 5K
  • You're On Mute!
  • COMBATCOVID.HHS.GOV
  • Virtually Better: How Virtual Reality (VR) Can Help Treat Pain and Anxiety
  • Talking with Someone with Chronic Pain: What You Need to Know
  • Denver Recovery Center: Find Your New Beginning
  • COVID-19: Patient Voices and Perspectives In Uganda
  • OA Osteoarthritis Action Alliance - Join a Research Study
  • Support Groups going Zoom Virtual Meetings
  • Memorials
CHANGE
By Penney Cowan

Change is difficult even for the strongest of us.  Many of us our set in our ways, like the routine of the day, feel comfortable just as things are. However, this past year has presented us with a significant number of changes.  COVID-19 created change in the way we do so many everyday things. Many of us now work from home. Kids are learning virtually, being home schooled or hybrid schooled where small groups go certain days to reduce the number in classrooms. Everyday things like getting your hair cut, going to the gym, or just getting together with friends at your local hang-out spot came to a halt. Our doctor visits became virtual. We changed the way we lived our lives drastically. And many of us also became fearful of being with others, afraid we might contract COVID. 

It seems we have all reached our limit when it comes to shopping online or having meals delivered to our homes instead of going out to a restaurant. We miss the way it used to be, when we had freedom to go where we wanted and do what we felt like doing. So how are you coping with all these changes while still dealing with chronic pain? 

It seemed that life could not get worse once pain entered our lives. The pain took away so many of the little pleasures in life, and for some, the big pleasures. We had to adjust the way we did many things. We adapted to new ways of doing things and realized where our limits were. But I realize that many of you are still working on finding ways to cope with your pain and the changes it has crated in your life.

So how are you coping with the changes COVID has created in 2020? Perhaps we need to look at some ways that you can cope/adjust/accept change. 
Calm: One way to cope with pain is to take control of where you focus your attention. The more you think about your pain, the more attention you give to the pain, the more you suffer. You must learn to redirect your attention off your pain and on to something else. I have heard many say they cannot do that. I want you to do something for me. In your mind, count from one to twenty-five and exactly at the same time say your alphabet. Stop reading and try it. It is not possible to think two things simultaneously. You have a one-track mind and can only focus on one thing at a time. You can use this fact to help you learn to refocus.

To help, find a quiet place and think about a sandy beach with the warm sun warming every part of your body. The sand beneath you is soft and as you run your fingers through the sand it feels like warm silk running through your fingers. You can hear the waves breaking against the shore, the palm trees softly waving in the warm sea breeze. Just stay like that for a few minutes and let your body experience the sun warming your body from head to toe. If that is difficult for you, you can go to the American Chronic Pain Association web site and open the five-minute relaxations exercise. It will gently guide you through a wonderful relaxation experience. It can be found at: https://www.theacpa.org/pain-management-tools/videos/communicationeducation/relaxation-video/
Happy: Don’t like the way things are going. Yearning for the days gone by? Find a place in your home or a picture or an object that brings back happy memories. Think about the time when the picture was taken, on a vacation, a special family event, or just a snapshot of everyday life that made you feel good. Sometimes it is the little things that bring the most joy. If it is an object such a book, a small figurine or even a large wall hanging or object remember that time when you acquired it, why you liked it so much, or who gave it to you. Go back to that time and place and think about the joy you felt. That object can become your happy place. When you are feeling down, just go to that place and recreate the event, think about the time of year, the people around you, the smells you remember. It can be that special place just for you. You can even create a more comfortable spot for the object and go there for a short break from life.

Assess: Assess means to evaluate or reconsider. That seems to be timely given the amount of time we are spending at home.  We have all heard the phrase the “COVID 15” meaning the fifteen extra pounds that many seem to be putting on.   You can assess your diet by tracking what you eat, the amount/portion size, snacks, and alcohol consumption. 

There is helpful information on the sites below:
·      Daily Food and Activity Diary: https://www.nhlbi.nih.gov/health/educational/lose_wt/eat/diary.htm
·      National Academy of Medicine: Food and Nutrition: https://nam.edu/tag/food-and-nutrition/
·      Clinical Nutritionist vs. Dietitian: What’s the Difference? https://www.nutritioned.org/dietitian-vs-nutritionist.html
·    Academy of Nutrition and Dietetics: https://www.eatright.org/
Of course, the other side of the pandemic is that so many don’t have enough money to feed their families or even themselves. If you are having a difficult time keeping food on your table, you can visit USDA National Hunger Hotline at 1.866.348.6476 or 1.877.842.6273. 


Network: Many of us have been shut off from friends, family, co-workers, school mates and acquaintances. The interactions with people is part of what makes us who we are. A large majority of us need to be in touch with others. To share stories, see how they are doing, catch up on what is happening in their lives and just to talk. It is easy to let those contacts that we saw every day slowly slip away as we narrow our contact with the outside world because of COVID. But that does not mean that you cannot still be in touch.  While you may still have close contact with immediate family and a few close friends, there are still others that you may not have talked with in a long time.
 It is easy to set up weekly chats with friends and family and mostly free of cost. There are free apps that allow you to conference in several people on a video call. Seeing them somehow is reassuring, knowing they are okay. For many a video calls it may be the first time you see their home, meet their partner, kids, or pets. 

Below are some free apps for video and phone calls to connect groups of people.

·  Zoom for free: https://zoom.us/freesignup/
·  Skype for desktop: https://www.skype.com/en/get-skype/
·  Messenger from Facebook or Instagram: https://www.messenger.com/features
·  WhatsApp for International video and phone calls: https://www.messenger.com/features

Why wait for a special occasion to reconnect with people you have not talked with in a long time? As they say, there is no time like the present!  
Give: It is always nice to get something new. But it can be just as nice to give something to someone else. There are many ways that you can give something small to someone that may just make their day. It is nice to get something totally unexpected and know that someone was thinking about you. We need that now more than ever. And with the holidays just around the corner, there are many who live alone, or have family who are not local so holidays will be spent alone. Below are some ideas you can “give” to someone you know who needs a friendly “hello, I am thinking about you.”  

·  Baked goods: many of us find that working from home lends itself to baking more than usual. Why not share with a neighbor or friend who lives close?
·  Cards: no need to purchase a card; you can make one. All you need is paper and an imagination. You can embellish with color, fall leaves, yarn, buttons, and other things you may have around the house. You can even look up poems and sayings online. 
·  Letters: It seems like letter writing has gone out of fashion these days with all the apps available. But that used to be the only way to communicate. And people would save letters and reread them over and over. It is a nice surprise to get a handwritten letter in the mail.
·  Phone calls: sometimes a friend’s phone call just to let someone know that you are thinking about them comes at just the right time---especially for those who do not go out because of COVID, or the older adults who have no means of transportation.
·  Favors: there are many people who have lost access to many things such as doing grocery shopping, going to the drug store, or other incidentals. Why not reach out to someone who might welcome an offer to pick up a few tings at the store? If you are already going shopping, it would be a kind gesture.

Giving not only benefits the recipient, but if gives you a sense of worth, makes you feel good, and who knows, someday you may need help from someone.  
Engage in a new activity that you always wanted to try. While it would be great to be young again and try your hand at skiing, sky diving, or mountain climbing, I think that may be stretching it a bit. But here are many things that you can do while at home. 
 
·  Skill Share: This is a free online craft studio that offers classes in art, cinematography, graphic design, illustration, photography, web development, entrepreneurship, marketing, business analytics and music. https://www.skillshare.com/browse/film-and-video
·  Institute of Culinary Education: Free on-line cooking classes. The premier recreational cooking school debuts online versions of its classes with all-new menus and professional chef instruction via live video. https://www.ice.edu/newyork/free-online-cooking-classes
·  Lifehack: Whether you’re aiming for efficiency, decoration, fun, or self-sufficiency, there’s a list of 30 awesome DIY projects just waiting for you at https://www.lifehack.org/articles/lifestyle/30-easy-and-awesome-diy-projects.html
·  Rockler: Filled with step by step pictures for woodworking and finishing plans: https://www.rockler.com/free-woodworking-plans
·  TCK publishing: The best free online writing courses for creative writers, fiction, and nonfiction. https://www.tckpublishing.com/free-online-writing-courses/

Change can take place in many ways. We have provider but a few. Life may have changed during 2020 for most of us, but as we approach 2021, ask yourself, what changes can you make now and in the future to help you not only manage your pain, but provide you with a positive attitude and can-do spirit?
Dr. Anthony Fauci says for the general public, he recommends getting enough sleep, maintaining a healthy diet, and avoiding or alleviating stress as the three most potent ways to keep your immune system strong.

The American Chronic Pain Association is pleased to offer a new video on the importance of exercise when living with pain. Exercise is one of the main self-management interventions to help a person with pain improve the ability to function and, in many cases, reduce their level of pain. You will hear from experts about the importance of exercise and how to begin an exercise program in your own home if you cannot get to physical therapy, exercise classes or your gym. https://www.youtube.com/watch?v=-4DMwbmQtkQ&feature=youtu.be
Falls Prevention Resources for Older Adults and Caregivers

For older adults, a fall can trigger a series of events that ultimately result in declining health and a loss of independence. Fortunately, most falls are preventable. Below are some falls prevention tips, programs, and resources from ACL and its partners:

Resources from the National Falls Prevention Resource Center lead by the National Council on Aging and funded by ACL:


Additional Resources:


Reprinted with permission.
Our first ever VIRTUAL 5K in support of Pain Awareness Month was a great success! We want to sincerely thank all our participating employees and their friends and family for taking part. We also want to thank our friends at Boston Scientific and Medtronic for their generous contributions to this cause. Altogether we raised $1,400 for The American Chronic Pain Association!
 
Read the details and check out race day photos in our blog recap. #tcpcvirtual5k #tcpc ##tcpcgivesback #painawareness #chronicpainawareness
 
We want to thank Twin Cities Pain Clinic for their donation and efforts on behave of people with pain and the American Chronic Pain Association. Thank you, Twin Cities! 

You’re on MUTE!
Tom Norris

Yes, “You’re on Mute!” must be the most repeated phrase of 2020! We have surely heard this phrase plenty of times during our Zoom calls.
 
As the restrictions of the pandemic were just starting in January, the Los Angeles branch of the ACPA went from a monthly face-to-face meeting to a weekly virtual Zoom meeting. We went to the weekly meeting to ensure everyone was able to reach out to someone during the restrictions. We have routinely had fifteen or more members participate in our Zoom calls.  

There are several advantages of having Zoom calls here in Los Angeles. 

·  Safety: We know people are safe in their homes, rather than out on the streets, traveling to and from a meeting. Members used to drive for an hour or more just to attend a meeting; 
·  Convenience: It is easier for a person living with chronic pain to attend a peer-led support group from the comfort of their own home and not have to worry about dressing and traveling; and
·  Broadened outreach: Even with the inevitable time zone problems, we have been able to reach people as far away as Thailand. More people are attending the Zoom meetings who would never drive to the face-to-face meetings.

Of course, the biggest disadvantage of Zoom calls is the lack of real companionship. It is hard work to listen intently and communicate concern and compassion through a camera.  

We are making this work! Zoom may not be ideal, but it is what we have. When the pandemic is over, we may go back to a quarterly face-to-face meeting (probably in conjunction with a social event) but our Zoom meetings are here to stay.

And we will always have to get people to unmute! For more information about American Chronic Pain Association Zoom meeting please call our office at 800.533.3231.
COMBATCOVID.HHS.GOV

The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (https://combatcovid.hhs.gov/).
 
The portal is a one-stop resource to help members of the public and doctors find information about different stages of COVID-19 illness, NIH-supported COVID-19 prevention and treatment clinical trials, and locations to donate plasma. The website provides clear and easy-to-understand information for:
Virtually Better: How Virtual Reality (VR) Can Help Treat Pain and Anxiety
Brennan Spiegel, MD, MSHS
You’ve probably heard of virtual reality, also called “VR,” where people wear a big, bulky headset on their face to enter fantastical, three-dimensional worlds. You might think of VR as a gaming technology—a toy for pimply, pent-up teens to play first-person shooter games in their parents’ basement.

But for decades, scientists around the world have been quietly discovering the surprising health benefits of VR for ailments ranging from severe pain, to PTSD, to substance use, to existential anxiety. Over five thousand studies reveal that VR has an uncanny ability to diminish pain, steady nerves, and boost mental health—and best of all, it can be administered at home without relying upon a trained clinician.

Reading about VR is like reading about space travel—you might imagine the effortless glide of floating in zero gravity, but until you are in space, well, you’re not. Until you have tried virtual reality it’s hard to imagine how powerful it is. So the next best way to experience it is to watch others try it. Here is one of my patients using VR while suffering from the severe pain. Before taking this picture, he was doubled over from body aches despite taking powerful painkillers. At this moment, he is flying in a helicopter over fjords in Iceland. He is escaping the confines of his hospital room without ever leaving. It is hard to tell that he’s in pain. You can watch a video of his VR experience here: www.virtualmedicine.health/patients-using-vr.
The first time I used VR I went up the side of a virtual fifty story building in a shaky window-washing rig. I felt the butterflies of anxiety and began swaying in rhythm with the teetering platform beneath my feet. Then, without warning, the rig’s protective railing suddenly detached, plummeting end-over-end and crashing into the street far below. I was told to jump off the building. I couldn’t do it. There was no way I was going to leap off that building, even though I knew it wasn’t real. The virtual world had commandeered my brain.
That experience revealed how VR can hijack the brain and create a sense of psychological presence. When VR scientists speak of presence, they mean the technology has a unique ability to convey a sense of just “being there,” wherever there happens to be. It might be relaxing by the ocean or soaring in a hang glider or swimming with dolphins without leaving their couch. VR can even cause people to think and feel like another person altogether. For example, using a headset can enable people with depression to assume the body of Sigmund Freud and engage in self-counseling through his persona, allow people with eating disorders to experience life by way of a healthy avatar, and teleport people outside their own body so that they may gain new insights about the nature of dying. In all of these cases, if the VR is any good, the user feels transported to a new virtual environment and temporarily accepts it as reality. When used in the right way, at the right time, and with the right patient, these virtual journeys can change mind and body for the better, all from the comfort of home.
In partnership with the American Chronic Pain Association, my team at Cedars-Sinai Medical Center in Los Angeles has been on a journey to study whether and how VR can improve mental health. We created one of the largest medical VR programs in the world and have now treated several thousand patients with immersive therapeutics. In my book, VRx: How Virtual Therapeutics Will Revolutionize Medicine, I reveal how our team is using VR in the emergency department to help patients with panic attacks, treating women in labor who are seeking to avoid an epidural, and managing patients with painful injuries. I discuss the research on how VR can treat irritable bowel syndrome, support stroke rehabilitation, steady tremors, manage schizophrenia, and engage patients with dementia.

Now, with the help of research funding from the National Institutes of Health, our team is shipping VR headsets directly to patients where they can receive mind-body treatments in vibrant, three-dimensional worlds. Instead of prescribing another pill through a traditional in-person session, we might recommend a virtual beach vacation to ease aches and pains or prescribe a course of cognitive behavioral therapy for people suffering from anxiety or depression. In one program, called EaseVR, patients with chronic pain learn to control their mind and body through VR biofeedback therapy in a whimsical forest of glowing trees beside a shimmering lake. As the patient breathes in and out in sync with beating drums, the microphone in the headset detects the respirations and uses the input to drive a metaphorical visual narrative, allowing the user to breathe life into a dying tree or cause the sky to brighten a lustrous shade of blue. Virtual trees expand and contract in rhythm with breathing, like a huge arboreal lung exchanging air in sync with the patients’ body. Evidence shows this type of therapy not only helps in the short term, but can also alleviate pain, anxiety, and depression well after the immediate treatment is over.

VR does all this by radically changing our perspective of the world. We can imagine being somewhere fantastical and healing. We can practice being the person we want to become. We can see ourselves from beyond and regard ourselves in a new light. We can empathize with ourselves and with others. We can confront our inner voice. We can transform our minds drastically and immediately, and when effective, forge healthy cognitions that last long after the headsets are removed.

VR is not just for gamers anymore; it is a new type of mental health treatment that can make things easier when times are hard.

Brennan Spiegel is director of health-services research at Cedars-Sinai Medical Center and the author of VRx: How Virtual Therapeutics Will Revolutionize Medicine
Talking about chronic pain is hard.
We can’t always find the right words to describe it.·      We’re used to people ignoring what we have to say or accusing us of exaggerating or faking. Talking about chronic pain can be exhausting, and we need all our energy for coping with pain. Talking about chronic pain can be embarrassing—we don’t want to look weak.
·      We don’t want to make you sad or uncomfortable.
·      We know that we can’t actually prove to you that we have chronic pain or how bad it is.
So we have a lot to consider when we talk about chronic pain.

If someone asks for specifics, sometimes our best response is a creative metaphor. We know that “my arm is in a beehive” might not mean anything to you, but it has meaning for us.
Sometimes we use numbers that make sense to us and might make sense to you, like “I can sit for three hours before the pain becomes unbearable” or “I can lift five pounds but no more.”
If someone asks us to give our pain a number on a scale of 1 to 10, we usually do it, even though these numbers have less meaning for us.

Sometimes we let our body talk for us. We don’t want to make you uncomfortable, but we can’t always control how we show pain in our facial expression, our posture, or our movement.
Sometimes we give a one-word answer or remain silent. Talking about pain often has more risks than benefits for the person in chronic pain.
But if you want to help us, you can.
Believe us. We wish we could give you proof of our pain, but we can’t. Even when we do have a picture of an injury, and we rarely do, we cannot prove what we are feeling at any point in time, any more than you can prove how jazz music or hot coffee makes you feel.
Don’t force us to talk about pain. When we want or need to talk about our pain, we will. If not, please respect our privacy. Understand that talking about pain makes us vulnerable, and we can suffer more.
Listen. When we do talk about our pain, we are taking a risk. We take this risk for the benefit of being heard. You might not understand everything we’re describing, but the more you listen, the better we’ll get at talking about it.
Understand that our pain is unique. We each experience our pain differently. We use different pain treatments. Our living situations affect our pain differently. You cannot know exactly what we are feeling, but you can believe that we are in pain.
Accept that our pain might never go away. We know this is hard because we have to do it, too. So please don’t ask us when we’re going to get better, and please don’t offer pity. This our life, and we want to love it, even when everything hurts.

Prepared by Pachael Graham Lussos, PhD. This material is based upon work supported by the National Science Foundation under Grant No. 1849653.

Any opinions, findings, and conclusions or recommendations expressed in this material are those of the author and do not necessarily reflect the views of the National Science Foundation.

Reprinted with permission by Dr. Lussos.
As technology advances and our military becomes more intelligent, the face of war has changed in our world. Yet the toll that combat can take on those serving in our military is still a growing problem. Many of our nation’s bravest have come home from foreign lands where they were dealing with unknown dangers and putting their life on the line on a daily basis. Some of the memories they bring home with them are horrific in nature and can cause many issues if left untreated.

Among the most prevalent of these concerns are physical pain from injuries and mental illnesses such as PTSD. Over time, many of these brave men and women who fought for our freedom find themselves fighting for freedom from alcohol and substance abuse.

If you or a loved one are a veteran who has returned home only to find yourself fighting this new battle against substance abuse, you are not alone. There is help available to you right now.

To help you find the topic you are seeking, you can click on any of the headings below:

7.     Getting Help

There are an estimated 23.4 million veterans in the United States today and an additional 2.2 million active military service members, as well as 3.1 million immediate family members. According to the 2013 National Survey on Drug Use and Health, there were approximately 1.5 million veterans who had a substance use disorder in 2014.

Signs it’s Time to Get Help

According to the U.S. Government Accountability Office, 2.1 million veterans received mental health treatment from the U.S. Department of Veterans Affairs in the five year period from 2006 through 2010. A study by the Substance Abuse and Mental Health Services Administration revealed that only 50% of returning veterans who need veteran mental health treatment will receive these services.

 There are certain signs to look for if you fear that you or a loved one need help with alcohol or substance use. Some of these include:

Physical Signs
·       Changes in appearance
·       Sudden weight loss
·       Bloodshot or glazed eyes
·       Physical withdrawal when not using
·       Changes in sleep patterns
Behavioral Signs
·       Loss of interest in friends and family
·       Less enjoyment of activities
·       Social isolation
·       Unable to quit substances despite trying
·       Continued substance use despite financial or legal trouble

Getting Help
If you have decided that it is time to get help, the good news is that there are many options available to veterans. Below is a list of resources for you and your loved ones to turn to when the time is right:

Suicide Hotlines
·  Veterans Crisis Line The Veterans Crisis Line connects Veterans in crisis and their families and friends with qualified, caring Department of Veterans Affairs responders through a confidential toll-free hotline, online chat, or text.1-800-273-8255
·  Vets 4 Warriors Provides 24/7 confidential help to veterans. Available to all active duty, National Guard and Reserve members, veterans, retirees and their families and caregivers.1-855-838-8255
·  Disaster Distress Helpline Help coping with stress, anxiety, or depression after a disaster. 1-800-985-5990
·  Military Hospitals Walter Reed Army Medical Center 8901 Rockville Pike, Bethesda, MD 20889 1-301-295-4000
· Balboa Naval Medical Center 34800 Bob Wilson Drive, San Diego, CA 92134 1-619-532-6400
· Brooke Army Medical Center 3551 Roger Brooke Dr, Fort Sam Houston, TX 78234 1-210-916-4141
 Wounded Warrior Programs

·      United States Marine Corps Wounded Warrior Regiment Provides and enables assistance to wounded, ill and injured Marines and their family members in order to assist them as they return to duty or transition to civilian life.
·      Army Wounded Warrior Assists and advocates for severely wounded, ill, or injured Soldiers, Veterans, and their Families, wherever they are located, regardless of military status.
·      Navy Wounded Warrior – Safe Harbor Coordinates the non-medical care of seriously wounded, ill, and injured Sailors, Coast Guardsmen, and their families.
·      Wounded Warriors – Air Force Aims to keep highly skilled men and women on active duty. If this is not feasible, the Air Force will ensure Airmen receive enhanced assistance through the AFW2 program.
 
Treatment Programs and Other Helpful Resources
·      Veterans Alcohol and Drug Dependence Rehabilitation Program Veteran substance abuse treatment and rehab program operated by the Department of Veterans Affairs. The program offers a variety of therapies and support services to eligible veterans who have a substance abuse disorder. Treatment services are provided at numerous VA medical centers and clinics around the country.
·      National Resource Directory Connecting Wounded Warriors, Service Members, Veterans, their families, and caregivers with supporting resources.
·      Military.com Resources for Military and Veteran Benefits for active duty, retirees, spouses and family members, reserve and guard members, and information about VA loans.
·      Make The Connection Helps members of the armed forces when they leave the military and transition back to civilian life. Assists with challenging experiences, transitions, troubling symptoms, and mental health conditions. The Make the Connection public awareness campaign is key to the U.S. Department of Veterans Affairs’ (VA) efforts to support Veterans and encourage them to access the support and care they deserve and earned.
·      National Organization on Disability A private, non-profit organization that promotes the full participation of America’s 56 million people with disabilities in all aspects of life. Today, NOD focuses on increasing employment opportunities for the 79 percent of working-age Americans with disabilities who are not employed.
· National Council on Disabilities NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
·      Americans with Disabilities Act Information and Technical Assistance with the (ADA), including how and where to file a report.      
Departments of Veteran Affairs Veteran Affairs operates the nation’s largest integrated health care system, with more than 1,700 hospitals, clinics, community living centers, domiciliaries, readjustment counseling centers, and other facilities.
·      Cohen Veterans Network At the Cohen Veterans Network, we seek to improve the quality of life for veterans, including those from the National Guard and Reserves, and their families. CVN works to strengthen mental health outcomes and complement existing support, with a particular focus on post-traumatic stress. Our vision is to ensure that every veteran and family member is able to obtain access to high-quality, effective care that enables them to lead fulfilling and productive lives.
·      Social Security Administration The SSA delivers their services through a nationwide network of over 1,400 offices that include regional offices, field offices, card centers, teleservice centers, processing centers, hearing offices, the Appeals Council, and our State and territorial partners, the Disability Determination Services. .
COVID-19: Patient Voices and Perspectives in Uganda
Uganda is no stranger to dealing with infectious and emerging diseases, with recent experiences of Ebola and HIV. This has contributed to Uganda’s ability to slow down the rate of infection from COVID-19 so far, says Regina Mariam Namata Kamoga.
Fear and panic gripped Uganda as images of patients in the world’s best hospitals in the developed world were seen struggling for life. The big question was, what would it be like in a resource-limited setting with a weak healthcare system with financial, infrastructural, logistical, and human resource challenges, which greatly affect access to, and quality of essential healthcare services? Furthermore, a setting coupled with patient-level challenges, including a lack of trust in the healthcare system, poverty, low health literacy, poor access to healthcare, and the burden of communicable and non-communicable diseases.
The fear of worst-case scenarios led to a rush to stockpile medicines, taking advantage of the weak regulatory system for medicines and lack of knowledge about medication safety issues and antimicrobial resistance. The warnings from the Pharmaceutical Society of Uganda (PSU) and National Drug Authority (NDA) fell on deaf ears. The measures taken by the Ugandan government intended to combat the spread of COVID-19 totally disrupted the supply chain and healthcare service delivery system as all efforts were focused on COVID-19. Patients with HIV/Aids, tuberculosis, malaria, cancer, hypertension, hepatitis B, epilepsy, sickle cell, as well as mental health, maternal, or childhood conditions, faced an increased risk of complications and death due to an inability to access healthcare because of transport restrictions, curfew, poor ambulatory systems, and fear of contracting the virus from healthcare settings.

It is important to note that many people in Uganda earn daily wages, so an inability to work due to lockdown was another pandemic in itself. Many families not only found it difficult to afford healthcare costs and buy medicines, but also had nothing to eat. To the poor, the hunger threat was even more real than COVID-19. The government effort to distribute food was like a drop in the ocean. Scenes with people demonstrating to demand food were common. And cases of domestic based violence and crime escalated resulting in injury and loss of lives. Women and children were disproportionately affected.
Patients with chronic conditions, who rely on medication for their survival and improved quality of life, access, and adherence to medication has been a major problem as they were not able to get their refills, while others could not afford to buy medication due to a lack of income.

Patients who had been newly diagnosed with cancer were not able to initiate treatment while others missed their three-month refills for hormonal treatment.

People with epilepsy have also found that access to regular and affordable medication is a nightmare, affecting their adherence and leading to frequent seizures and inability to live normally.
Sickle cell patients describe the effects of the pandemic as enormous, citing increased cases due to anemia, stress, and anxiety. 
Patient centered healthcare and patient safety 
Even amidst a pandemic where patient safety is put to the test and during a bid to find a vaccine as soon as possible, it’s critical that patients are meaningfully engaged and high ethical standards governing clinical trials, particularly for vulnerable patients, in resource limited settings, are applied. Patients need to seek healthcare with confidence, without fear of being harmed.

I believe patient empowerment, or lack of, has greatly contributed to how fast or slow the disease has spread in some of the different areas of the world. 

Empowerment of patients to self-manage chronic conditions, especially during such unusual times where they cannot access medical centres as often as possible, has been necessary while emphasising health literacy and telemedicine.

Strengthening of community structures to effectively respond to COVID-19, the role of community leaders, including political, religious, cultural and community extension health workers in mobilising and engaging community members, is invaluable. The potential of community involvement in the COVID-19 response has not been fully exploited.

Deliberate effort by key stakeholders to address the psychological needs of the population in order to mitigate the impact of mental health issues resulting from challenges of this epidemic is required and should be integrated in all aspects of the response.

Mariam Regina Namata Kamoga, executive director, Community Health And Information Network (CHAIN), Uganda, and founding member, World Patients Alliance (WPA).
Did you know that your weight can impact joint pain? If you have knee or hip pain, you may be able to help researchers understand what people with arthritis want to know from their doctors about weight management and nutrition strategies to reduce joint pain.
One of the Osteoarthritis Action Alliance's goals is to develop resources for individuals with osteoarthritis (OA) that provide them with the knowledge, skills and confidence to effectively manage their symptoms. We are beginning to develop patient materials that relate to nutrition and OA management; we are seeking input from people with OA to help shape the content of these materials and the format that would be most effective for adults with OA.

Click here to learn more about this research study and to take the 5-minute survey.

ACPA Support Groups are going to Zoom Virtual Meetings. Here is where they are located. You can email the National Office for contact information.

Falls Church VA
Hampton VA Veterans only
Union/Essex Cty NJ
Newton NJ
Ocean Park ME
Minneapolis MN
Ft Wayne IN
Chicago IL
Cincinnati OH Veterans only
Cincinnati OH
Pittsburg PA
Ft Myers FL
Austin TX
Denver CO
Boulder CO
Fremont CA
Danville CA
North Hollywood CA
La Mesa CA
Beaverton/Tigard OR
South Salem NY
Rocky River OH
Englewood CO

We are also offering a conference call group:

Vallejo, CA
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These groups will continue to also do face to face meetings when the shelter in place opens up. Please email the National Office at ACPA@theacpa.org


Gifts given to the ACPA
In Loving memory:

Christine J. Booker
Given by: Julie Weaver
Andy, Tim, Connor
Patricia Williams
Judith Green
The Cook Family: Floyd, Jean, Jill, Jack & Jay
Jill & Bret Thompson
Reynold & Elizabeth Rausch
Bob & Nancy Clevenger
 
Katherine Cava
Given by: Marlene S
Laura Huggins & Shaw Contract N.E. Team
Andrew, Miles & Elizabeth  John & Mary DeAngelis
Kyle Voorheis
Dominique Duong & Peter Wong
John Gawoski Fund
Katz Solomon Giving Fund
 
Jacqueline Beckham
Given by: Mary Kelly
 
Charlene Fortun Wagner
Given by: Jeanne Abadie & Bruno Jubelin
 

Fall 2020 Combined Federal Campaign (CFC)

Consider directing your donation to the American Chronic Pain Association this year.

CFC Code number is:
10549 
ACPA Corporate Members
 You shop. 
Amazon gives.

Shopping on line helps the American Chronic Pain Association 
 
If you use Amazon for your on-line shopping, you can now support the ACPA. It is simple just go to AmazonSmile and select American Chronic Pain Association as your charity from the drop down menu.  
  • Amazon donates 0.5% of the same price of your eligible AmazonSmile purchases to the charitable organization of your choice.
  • AmazonSmile is the same Amazon you know. Same products, same prices, same service.
  • Support American Chronic Pain Association by starting your shopping at smile.amazon.com