Saturday, July 22, 2017

Living with Lyme Disease

Vermont has one of the highest incidences of Lyme Disease (LD in the country and in my small town, at least four people have been learned of the diagnosis only after being tested in an effort to understand symptoms such as pain and fatigue. They had no recollection of having been bitten by a tick.

With the spread of LD all over the country, thought a post on LD might be useful. This post has been designed for people living with Lyme Disease (PLWLD)-sometimes referred to as chronic, persistent or post treatment. To learn about preventing LD, go to TakeTicks Seriously.

The black-legged tick is responsible for the infection, a bacterium called Borrelia burgdorferi.

Though there is evidence that LD has been around for thousands of years in the US, it was  “discovered” 40 years ago. It is a complex and puzzling health condition for multiple reasons:
•  The Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS)  — the two medical associations associated with LD, have issued competing and controversial care guidelines for Lyme There is a growing group of LD “literate” providers who are outside IDSA and ILAD. While some are doing outstanding work, others are taking advantage of patients who are desperate for relief. 

•  LD is often called the “great imitator” because of the broad range of symptoms, such as digestive problems, joint conditions and cognitive issues. Some people develop lingering symptoms after initial treatment and there are others, that haven’t felt well for a long period of time and are surprised to learn they are infected. It’s important to note that 25% of those with LD don’t recall a tick bite.

• Ticks are known to carry many pathogens and will often pass on more than one co-infection with a single bite. These co-infections can increase the severity of the Lyme symptoms or cause entirely different symptoms. They also do not all respond to antibiotics, complicating diagnosis, treatment, and management of symptoms.

• Testing, while available is not always accurate.

Symptoms of early Lyme disease: Can be flu-like (fever, chills, sweats, muscle aches, fatigue, nausea and joint pain) and may be accompanied by a rash (bull’s eye or other types) or facial drooping. If you develop a rash, take a photo, and see a doctor immediately. Your primary care provider should be able to provide a test. At this stage of infection, the Lyme test can be negative so treatment should not be delayed if there is suspicion of LD (tick bite, rash, fever etc.). Please note that LD isn’t the only condition you can get from a tick bite and locally at least one person has contracted anaplasmosis from a tick bite.

Symptoms of PLWLD: People who have unresolved LD, whether they’ve been treated or not, experience symptoms such as fatigue, restless sleep, pain, aching joints or muscles, pain or swelling in the knees, shoulders, elbows and other large joints, decrease short-term memory or ability to concentrate and/or speech problems.

Use the Lyme Disease Symptom Checker to help you understand your possible risk for LD. 

Testing: The most common diagnostic tests for Lyme disease are indirect ones. They measure the patient’s antibody response to the infection, not the infection itself. The two most-used antibody tests are the enzyme-linked immunosorbent assay (ELISA) and the Western blot. The CDC recommends that doctors first order an ELISA to screen for the disease and then confirm the disease with a Western blot. As noted above, testing within the first four-6 weeks of Lyme infection is unreliable as the person will not have developed the antibody response.

 The earlier you are treated, the better the outcome. Depending on your doctor and presenting symptoms will dictate length of antibiotic treatment. Some people’s symptoms do not resolve after six months and develop what is called Post Treatment LD.

The ideal antibiotics, route of administration and duration of treatment for persistent Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.

There are medical providers that are now specializing in LD and are trying a variety of treatments, some of which are controversial. However, some are trying treatments, which have been approved for other conditions, “off label” just not LD.

One such “off label” use is hyperbaric oxygen treatment (HBOT).  An approved therapy for 14 different conditions, there has been at least one study that has shown its efficacy for PLWLDs. In May, Seven Days ran a story Is Hyperbaric Oxygen a MiracleCure?,  which describes how a VT chiropractor is using HBOT for PLWLD.

In 1998, the FDA approved a Lyme vaccine, LYMErix, which reduced new cases of the disease by nearly 80 percent. Yet, in 2001, manufacturer SmithKline Beecham voluntarily withdrew LYMErix from the market amidst problems with sales and reports by some who were vaccinated that as a result, they developed musculoskeletal ailments including arthritis. A class-action suit was brought against the company, even though data gathered did not support that claim. While there is interest in a vaccine, given the experience of SmithKline Beecham, it’s unlikely to expect one in the near future. However, there is a vaccine for dogs, which is administered yearly.

While the physical symptoms of LD are bad enough, the disease can cause emotional, financial, logistical and work difficulties. Because there are no clear treatment guidelines, let alone a cure, PLWLDs are subject to scams and it’s not uncommon to rack up enormous bills for treatments and tests that lead nowhere. Check out If it Sounds to Good to Be True: Scams, Frauds, and Quacks.  Therefore it’s important to find a medical provider that you can work with, as well as connect with other PLWLDs.

Local Resources: The easiest way to find out what type of resources exist in your state is to Google your state name with “lyme resourses.” Infectious Disease and Internal Medicine are the two medical specialties that treat LD.

Learn about your condition: Knowledge is power. Using the links in the Resource Section below, keep tabs on the latest research. Be careful of the sites you use-those sites that end, edu and .gov are generally going to be more reliable. Be wary of sites trying to sell you a product.

Share your data: Incredible strides are being made in all fields of medicine as people are now sharing their data thanks to the Internet. Some sites, such as Patients Like Me, are running clinical trials to help find out what works and what doesn’t. Sites to consider

Connect with Others: Check with providers and others with LD about where a local support group might be. If there isn’t one, check out:


Bay Area Lyme Association: Currently funding the development of therapies for later stage Lyme with enhanced efficacy and reduced side effects relative to antibiotics.  

Lyme Disease Association: Offers a Doctor Referral site. 

Wednesday, July 19, 2017

Take a Break: Soar Over Pluto

So it’s been reduced to “dwarf planet” status but all the same it’s pretty amazing to see the continuing videos released by NASA in celebration of the two year anniversary of New Horizons Pluto flyby. 

Below are links to check out the amazing views of Pluto and its moon Charon thanks to the nine year journey of “New Horizons," which continues into the outer reaches of space. 

 Not interested in today’s activity, go to the Take a Break Pinterest and pick out something else.

Saturday, July 15, 2017

Journal Watch July 2017


• Applying electric current to nerve for chronic low back pain does not provide clinically important improvement: Treatment of chronic low back pain with radiofrequency denervation, a procedure that can be performed with different techniques including the application of an electric current to the pain-conducting nerve, resulted in either no improvement or no clinically important improvement in chronic low back pain, according to a study. JAMA Network Journals

Reaching Beyond the Prescription Pad to Treat Pain: Teaching coping skills may help reduce the risk that patients with chronic pain will become addicted to opioid painkillers, a new study suggests. Canadian Journal of Pain

Cognitive behavioral therapy improves functioning for people with chronic pain, study shows: Cognitive Behavioral Therapy (CBT) is the most frequently used psychological intervention for people with chronic pain, and new approaches for improving CBT outcomes may be found in the psychological flexibility model and Acceptance and Commitment therapy (ACT), according to research. The Journal of Pain

New, oral treatment option for rheumatoid arthritis: Patients suffering from rheumatoid arthritis are treated for around six months with the standard anti-rheumatic agent methotrexate, to which many patients respond very well. However, if they do not respond and no remission or at least reduction in the activity of the disease can be achieved, they are given a combined treatment of methotrexate and a biologic agent if risk factors are present. An international research group has now shown that there is another, equally effective oral treatment option. The Lancet

• Controlled temperature change inside ear can prevent migraines: The application of gentle cooling and warming currents inside the ear canal can provide relief for migraine sufferers, new research has shown. The Journal of Head and Face Pain



Acupuncture relieves pain in emergency patients: The world's largest randomized controlled trial of acupuncture in emergency departments has found the treatment is a safe and effective alternative to pain-relieving drugs for some patients. The study found acupuncture was as effective as pain medicine in providing long-term relief for patients who came to emergency in considerable pain. But the trial, conducted in the emergency departments of four hospitals, showed pain management remains a critical issue. he Medical Journal of Australia

• Antibiotic Resistance Linked to Common Household disinfectant triclosan: Scientists have discovered a link between a major mechanism of antibiotic resistance and resistance to the disinfectant triclosan which is commonly found in domestic products. Journal of Antimicrobial Chemotherapy


• Closing medical marijuana dispensaries increases crime, according to new study: Contrary to popular belief, medical marijuana dispensaries (MMDs) reduce crime in their immediate areas, suggests a new report. Journal of Urban Economics


• Yoga more risky for causing musculoskeletal pain than you might think: Yoga causes musculoskeletal pain in 10 percent of people and exacerbates 21 percent of existing injuries, research shows. The findings come from the first prospective study to investigate injuries caused from recreational participation in yoga. The injury rate is up to 10 times higher than has previously been reported. Journal of Bodywork and Movement Therapies


• Guided self-help approach to graded exercise program is safe, may reduce fatigue for patients with chronic fatigue syndrome: A self-help approach to a graded exercise program, supervised by a specialist physiotherapist, is safe and may reduce fatigue for some people with chronic fatigue syndrome (CFS), according to a new trial of 200 people. The Lancet

Warns diabetics against use of secondhand test strips
• Approves new Sickle Cell Drug Endari (L-glutamine oral powder)
• Advisory Committee Approves CAR-T cell immunotherapy (CTL019 or tisagenlecleucel) “living drug” approach for children and youth with a common form of leukemia

Interventions to prevent cognitive decline, dementia: Evidence supporting three interventions-cognitive training, blood pressure management, and increased physical activity- that might slow cognitive decline and the onset of dementia is encouraging but insufficient to justify a public health campaign focused on their adoption. National Academies of Sciences, Engineering, and Medicine

Breast-Feeding Tied to Lower Heart, Stroke Risk for Mom:Women who breast-feed their babies may have a slightly lower risk of suffering a heart attack or stroke decades later, a large new study suggests. The study pointed out that women who breast-feed for a longer time tend to have lower odds of high blood pressure and diabetes. Journal of the American Heart Association

Frequent sexual activity can boost brain power in older adults: More frequent sexual activity has been linked to improved brain function in older adults, according to a new study. Researchers found that people who engaged in more regular sexual activity scored higher on tests that measured their verbal fluency and their ability to visually perceive objects and the spaces between them. The Journals of Gerontology, Series B: Psychological and Social Science h


Regular brisk walks and a daily longer one help lower office workers' blood lipids: Taking 2-minute brisk walks every 30 minutes and a half-hour walk each day reduces blood lipid levels when measured in response to a meal consumed around 24 hours after starting the activity, research shows for the first time. Journal of Clinical Lipidology

For Many, Friends Are Key to Happiness in Old Age: These relationships may even outstrip family when it comes to well-being, study suggests. Personal Relationships 

Sinus disease symptoms improve 10 years after patients quit smoking: Patients with chronic rhinosinusitis (CRS) who quit smoking will see their condition improve over a period of about 10 years, according to the results of a new study. Otolaryngology-Head and Neck Surgery 

• Elderly yoginis have greater cortical thickness: Scientists in Brazil have imaged elderly female yoga practitioners' brains and found they have greater cortical thickness in the left prefrontal cortex, in brain areas associated with cognitive functions like attention and memory. The results suggest that yoga could be a way to protect against cognitive decline in old age. Frontiers in Aging Neuroscience


Fish Eaters Report Less Rheumatoid Arthritis Pain: Eating fish at least twice a week may significantly reduce the pain and swelling associated with rheumatoid arthritis, a new study says. Arthritis Care & Research

Many Americans May Be Taking Too Much Vitamin D: Study finds more people are exceeding the upper daily limit of what is considered safe. The recommended daily amount of vitamin D is only 600 IUs for adults aged 70 and younger. For those over 70, the recommendation is 800 IUs a day.

• Extra-virgin olive oil preserves memory, protects brain against Alzheimer's: The Mediterranean diet is associated with a variety of health benefits, including a lower incidence of dementia. Now, researchers have identified a specific ingredient that protects against cognitive decline: extra-virgin olive oil. In a new study, the researchers show that consumption of extra-virgin olive oil protects memory and learning ability and reduces the formation of amyloid-beta plaques and neurofibrillary tangles in the brain -- classic markers of Alzheimer's disease. Annals of Clinical and Translational Neurology

• Zoning in on specifics of Mediterranean diet for colorectal health: The benefits of a "Mediterranean diet" (MD) are well-known when it comes to colorectal protection, but it's hard to know specifically what elements of the diet are the healthiest. Now a new study, presented today at the ESMO 19th World Congress on Gastrointestinal Cancer suggests loading up on fish and fruit, and cutting back on soft drinks are the three most important things. 

 Imprecise iron supplementation can spur increase in Salmonella: Individuals who do not produce enough iron are anemic, and often experience fatigue. One common remedy is for physicians to prescribe an iron infusion to their anemic patients. This makes sense, but can lead to unexpected consequences like increasing the risk of food poisons such as Salmonella. These types of poisons depend on abundant access to iron. Physicians should be attuned to this dynamic when determining the strength of iron infusions for their anemic patients. Frontiers

• With health care cuts looming, low-cost magnesium a welcome option for treating depression: The cost of depression is great -- 350 million people worldwide suffer from this disorder and costs for traditional SSRI treatments are high. New clinical research results show magnesium is effective at addressing symptoms and is safer and easier on the wallet than prescription therapies. Science Daily

 High fat diet reduces gut bacteria, Crohn's disease symptoms: A high fat diet may lead to specific changes in gut bacteria that could fight harmful inflammation -- a major discovery for patients suffering from Crohn's disease, research indicates. Crohn's disease, a type of inflammatory bowel syndrome, causes debilitating intestinal swelling, cramping, and diarrhea. The disease affects half a million people in the United States, but its cause is yet unclear. Science Daily

Drinking coffee could lead to a longer life, scientist says: Whether it's caffeinated or decaffeinated, coffee is associated with lower mortality, which suggests the association is not tied to caffeine Scientists have found that people who drink coffee appear to live longer. Drinking coffee was associated with lower risk of death due to heart disease, cancer, stroke, diabetes, and kidney disease. People who consumed a cup of coffee a day were 12 percent less likely to die compared to those who didn't drink coffee. This association was even stronger for those who drank two to three cups a day -- 18 percent reduced chance of death. Annals of Internal Medicine 

Better Diet, Longer Life: Study is the first to show that sustained diet changes -- even later in life -- might extend people's lives. NEJM


NSAIDs improve survival for certain colorectal cancer patients, study shows: Among long-term colorectal cancer survivors, use of nonsteroidal anti-inflammatory drugs, or NSAIDs, is associated with about a 25 percent reduction in all-cause mortality. The study further suggests that NSAIDs such as aspirin, ibuprofen and naproxen have a particularly advantageous effect when taken after diagnosis by colorectal, or CRC, patients without tumor mutation in the KRAS gene (KRAS wild-type tumors): The study shows that NSAID use by this group is associated with a survival benefit of 40 percent.  Journal of Clinical Oncology

Study Hints at Link Between Some Statins, Parkinson's Risk: People on cholesterol-lowering statins may have a slightly increased risk of developing Parkinson's disease, a new study suggests. Researchers said the finding doesn't prove statins are to blame. But, they added, the findings undercut the notion that statins might help protect against Parkinson's. Movement Disorders

Transcranial stimulation and/or physical therapy improves walking speed in Parkinson's disease: Noninvasive brain stimulation and physical therapy -- alone or in combination -- improve some measures of walking ability in patients with Parkinson's disease (PD), concludes a clinical trial. American Journal of Physical Medicine & Rehabilitation

• Combining antibiotics proves more effective against common infection: The common and highly resistant Pseudomonas aeruginosa bacterium is a fatal threat to weakened and ill patients. A new study now shows that a combination treatment using two different types of antibiotics can reduce mortality up to five times. Science Daily

• 'Brain training' app found to improve memory in people with mild cognitive impairment: A 'brain training' game could help improve the memory of patients in the very earliest stages of dementia, suggests a new study. The International Journal of Neuropsychopharmacology

• Readily available drug cocktail can help prevent sepsis shock and death Vitamin C, corticosteroids, and thiamine administered together may help prevent progressive organ failure caused by sepsis, according to a new study. Chest 

Popular Heartburn Drugs Linked to Higher Early Death Risk: Popular heartburn drugs called proton pump inhibitors (PPIs)- Prevacid, Prilosec and Nexium- have been linked to a variety of health problems, including serious kidney damage, bone fractures and dementia. Now, a new study from Washington University School of Medicine in St. Louis shows that longtime use of the drugs also is associated with an increased risk of death. BMJ

•  Repurposed asthma drug shows blood sugar improvement among some diabetics: After 12 weeks of taking an anti-asthma drug, a subset of patients with type 2 diabetes showed a clinically significant reduction in blood glucose during a randomized, double blind, placebo-controlled clinical trial, report researchers. Cell Metabolism  

Steroids may do more harm than good in some cases of severe asthma: Corticosteroids, the main treatment for asthma, may worsen the disease in this group of patients, new findings suggest. This will have important clinical implications, say the researchers. JCI Insight 

• Observation Best Option for Most Low-Risk Prostate Cancer: Men with early stage prostate cancer who have surgery to remove their tumor do not live longer than those who receive no treatment at all, a 20 year clinical trial has concluded. At the same time, nearly one in three men who had the surgery wound up with long-term complications, such as urinary incontinence and erectile dysfunction, NEJM

• CPAP Mask Not a Prescription for Heart Troubles: Using a breathing device to treat sleep apnea may help you get a good night's rest, but it might not lower your risk of dying from a stroke or heart condition, a new analysis suggests. JAMA

Depression May Worsen Health for Cancer Caregivers: Depression is known to be linked to worsening physical health, and a new study finds this may be especially true for cancer caregivers. American Cancer Society

• Many Chronic Illnesses Linked to Suicide: People with chronic health problems seem to have a higher risk of suicide, a new study suggests. The investigators identified 17 medical conditions linked to increased odds of suicide including asthma, back pain, brain injury, cancer, congestive heart failure, chronic obstructive pulmonary disease, diabetes, epilepsy, HIV/AIDS, heart disease, high blood pressure, kidney disorder, migraine, Parkinson's disease, psychogenic pain, sleep disorders and stroke. The risk was nine times higher among people with a traumatic brain injury and two times higher among those with sleep disorders and HIV/AIDS. American Journal of Preventive Medicine 

Older Americans Struggling with Drug Costs: A national poll of more than 2,100 adults aged 50 to 80 found that 27 percent said their prescription drug costs were a financial burden. Among the respondents who said their medication costs were a burden, 49 percent had not talked to their doctors about the issue. But doing so was effective, because 67 percent of those who talked to their doctor received a recommendation for a less expensive drug, as did 37 percent of those who talked to their pharmacists. Health Day

Wednesday, July 12, 2017

Take a Break: Hold Still

Being still is part of many spiritual traditions, and can be considered a form of meditation. According to zhan zhuang qigong therapists, simply standing still can energize and realign us more than physical exercise, which they say can drain our energy and put too much pressure on the body. Learn more –The Power of Standing Still

There are lots of ways to try this, from holding a particular position or concentrating on a specific word. Below are some ways to “hold still.”

• Close your eyes while sitting or standing. Take a deep breath in through your nose and silently count one. Slowly let that breath out through your nose and silently say two. Repeat this until you get to ten.

• Try Holding the Ball stance. Try the video or check out the written directions in the Power of Standing Still 

Not interested in today’s activity, go to the Take a Break Pinterest and pick out something else.

Saturday, July 8, 2017

Life With Chronic Conditions: What Touches Our Skin

JAMA Internal Medicine has recently reported how cosmetic and personal care products-which includes shampoos, conditioners as well as “make-up” are largely unregulated. There is no approval process so products can appear on shelves-or at local farmer’s market-without any testing literally overnight. This is particularly troubling for people with chronic conditions who often have skin and hair issues, which can be adversely compounded by a new hair product, body wash or even a change in clothes detergent.

Another article, this time from the Journal of Antimicrobial Chemotherapy,  has found that the common ingredient triclosan has been linked to antibiotic resistance. This ingredient appears in a number of products including soaps, dental care, cosmetics, deodorant, first aid, kitchenware, personal care, clothes (Biofresh socks, undergarments, tops and bottoms), office and school supplies. For a partial list of products containing triclosan, go to Beyond Pesticides.

Whether you are cleaning yourself or the dishes, it’s important that you know what’s in the products you are using. To protect yourself:

Read Labels: Since the liver is such a vital organ, you are going to want to avoid products with the following ingredients that are toxic to the liver:
• Phthalates including di-n-butyl phthalate (DBP) and di(2-ehtylhexyl) phthalate (DEHP)
• Lauryl sulfate (SLS) and sodium laureth sulfate (SLES)
• Diethanolamine (DEA), triethanolamine (TEA), amonoethanolamine (MEA)
• Propylene / butylene glycol (PG)

Other ingredients to avoid include 1,4 dioxane, triclosan, parabens, synthetic colors, fragrance, fomaldehyde, toluene. Also note that products with added vitamins can be particularly problematic.

Check with Condition Specific Organizations: Condition specific organizations and medical groups will often list ingredients you need to avoid as well as what might work best for you. For example, Hepatitis Central provides a list of liver-friendly brands of cosmetics.  A quick way to check about product safety for your given condition, Google “cosmetics to avoid if you have....” and list your condition.

• Use Guides: There are several websites that rank products of all types regarding their safety and use.
- Good Guide (includes personal care, food, household and baby/kid products.
- Environmental Working Group: Rates over 80,000 personal care products plus a whole lot more. 

• Stick with products you know work for you and don’t be swayed by the latest branding and advertising.

• File complaints: If you have a reaction or problem, definitely file a complaint with the FDA but also let your medical provider and condition specific group know so they can alert other people with a similar condition.

Wednesday, July 5, 2017

Take a Break: Celebrate Harry Potter’s 20th Anniversary

Can recall more than one July day where I had a “Harry Potter hangover” from staying up way too late learning what the latest installment of the series would bring. Hard to believe that the series was launched 20 years ago this past week with the publication of “The Sorcerer’s Stone. Just so we’re clear, Harry Potter himself would be 37 on July 31, which makes him a Leo. Hmm... does he seem like a Leo?

So there are the obvious things to do to celebrate the occasion- such as re read, or read for the first time the series or your favorite one of the books and/or watch any or all of the movies. Here are some other ideas:

• Join the Wizarding World Book Club and join in the discussion with people from around the world 

• Read Harry Potter and the Cursed Child: This is the script for the play of the same name. It premiers on Broadway in 2018. The Pottermore website has lots more information about the play. 

• The Ultimate Harry Potter Quiz: Find Out Which House You Truly Belong In : You can also find out which Harry Potter House your state belongs in.

                                        Watch the video about the heroine Hermione Granger 

• Make some “butter beer.” Looks incredibly sweet.

• Take HuffPost’s Harry Potter Quiz, which is quite hard unless you spend all your time reading the books and watching the movies.

Not interested in today’s activity, go to the Take a Break Pinterest and pick out something else.

Saturday, July 1, 2017

Responding when Disaster Strikes Friends and Family

How to Respond When You Learn That Someone is Ill or Injured is one of the most read posts on this blog, and it’s regularly updated. It’s recommended that you read this for general ideas of how you can help. Because there are some important differences with a disaster-e.g. house fire, flood- occurs, the purpose of this post is to focus on addressing the differences.

Keep in mind while the person(s) maybe physically fine everything around them is not. Expect them to exhibit what may appear to be very odd and strange behavior. They are having a very normal reaction to very abnormal circumstance. The first thing you can do for someone in this situation is
make sure they are safe, have factual information and basic needs of food, shelter, clothing etc. are met. Hugs help and reassurances that things will get better and you're there to help see them through makes a big difference.

If the person is suicidal, please take this threat seriously and get them help.
Do not leave them alone.
• Seek immediate professional help
• Take the person to an emergency room to the nearest hospital.
• If the above options are not available, call the Suicide Prevention Lifeline at 1-800-273-TALK (8255), or text HOPELINE at 741741 with the word “start” to get the assistance that you need.

While you may want to be helpful, keep in mind what you can realistically do and don’t over extend yourself.  Dropping off a gift card, coffee and baked goods, a meal or even cleaning supplies, speaks volumes and offers much needed support.  Consider gas cards and restaurants as well as places like Home Depot, Walmart and stores where they will need to shop to replace and repair. How to Respond When You Learn That Someone is Ill or Injured  provides various ways you can provide assistance.

Organizing a response needs to happen as quickly as possible. You have about a week-10 days to get the best response. This is the same amount of time it takes to adjust to the “new normal.” After that, people move on to their own issues and concerns. The “let’s wait and see” isn’t the best approach for obtaining funds and help. If this is a family that is extremely private, you may only want to respond in low-keyed ways.

If you wish to organize a community response, get together with several people who can each take specific tasks, such as setting up appropriate websites (crowd-funding, Facebook, Lotsa Helping Hands) or organizing a fundraiser. Make sure you can work with these individuals and there is agreement to communicate daily to avoid duplication, miscommunication etc. One person needs to be working with the family to ensure that the help being provided is what they need and want.

Below are specific ways to organize community:
Crowd-Funding: If there is financial need, setting up a crowd-funding site e.g. Go Fund Me should happen as soon as possible. Provide pictures of the incident, along with factual information about how much money is needed to help with the recovery and how these funds will be used. There are many options to “Go Fund Me,” but keep in mine they all take a percentage of the funds raised. This sole purpose of the site is to raise money.

Lotsa Helping Hands: To organize help from family, friends and neighbors and to keep them informed, and solicit donations of items, set up a Lotsa Helping Hands (LHH) free website. This is an invitation only site, while crowd-funding is open to the public. LHH is an easy way to send one e-mail, which lets lots of people know what’s needed and when, work party schedules and much more. The website will do the reminding of who has agreed to do what. This is a very useful tool that can make effective responding much easier.

Facebook: A Facebook page can also be a good way to share information and solicit donations. If you want the public to be able to read the site, even if they aren’t Facebook subscribers, you need to set it up as a community site. Make sure there are multiple administrators as it needs to be checked frequently throughout the day as some users leave inappropriate comments and that can derail your efforts.

Social /News Media: Once the on-line resources are operational, use social media to spread the word. However, because the news outlets show up for disasters, capitalize on that by giving them the URL for the crowd-funding site and Facebook page. News articles can be a very helpful way to solicit donations and raise awareness.

Accounts at Stores: Set up accounts at stores they will need to use to replace items, rebuild etc.

Fundraiser: If you decide to organize a fundraiser, make sure the URLs for on-line sites and the location of stores where accounts have been set up in the person’s name, are included in all print materials as well as social media. Also note, this is not the time to do a fundraiser where other groups-e.g. Red Cross, local fire departments-are co recipients. It’s a confusing message and it’s best to do a separate fundraiser for these groups.

Donation Jars: Consider asking local stores to set up a donation jar. A unique design for the jar will significantly increase contributions, e.g. a replica of the house damaged. The store owner doesn’t have time to clean out the jars so make sure someone is assigned this task.

Community Organizations: Depending on where you live, community based organizations can often help in times of major disasters. Places to contact for help and support include: churches and places of worship; community action agencies; food pantries; thrift shops and used furniture stores; grocery stores; civic organizations; schools (high schools and colleges will often have organized student work groups that can help); area businesses.

Remember the “thank you.” Be sure to let people know how much their contributions are helping.