Christina's Considerations

Does ALL CAPS still indicate screaming online?

In the early days of the Internet, typing in all caps was deemed to be rude and screaming during online conversations with others.  However, is this really always or still the case?  This question occurred to me after reading an exchange in an online support group and it may be time for a re-visit.

When I want to emphasise something, I often use an exclamation point,  italics, bold or colored text.  I really can't remember a time when I used ALL CAPS - until now.  Other options are also available, such as using heavier fonts.

What I read in the online support group, after an accusation of screaming, is that this person uses all caps in her typing routinely - because it is easier for her to see and make out letters.  She has a visual impairment!  I guess she could increase the font, but that requires some extra clicking for each textbox.  But, we are all different and capital letters may just be the easiest for her to read.

Research findings from 2007 do indicate "upper-case is more legible than the other case styles, especially for visually-impaired readers, because smaller letter sizes can be used than with the other case styles, with no diminution of legibility."  They found that upper-case text is more legible in terms of reading speed, for readers with reduced acuity due to visual impairment, and in normally-sighted readers when text is visually small. The bottom line is upper-case text is simply more legible, albeit less aesthetically appealing, than lower-case.

But, do a Google search and you will find not everyone agrees, including the American Foundation for the Blind. So, this brings us back to the individual person and their specific vision impairment or sight weakness.  Older adults are online in much greater numbers today; and we know vision impairment is common in older adults.  So, what do you think?  Is ALL CAPS easier for  you to read?

 

 

 

 

Comfort in A Healthcare Facility

Since my post on Comfort in the Hospital, I've collected some new ideas and want to share them along with some new insight as a caregiver, as well as, a patient and former hospital administrator.  With Easter and Mothers/Fathers Day celebrations coming, a little something can go a long way to making an assisted living, skilled nursing, rehabilitation or hospital stay a bit more comfortable.

My list comes from samples I've received and tested over the last few months.  Each makes one feel more comfortable in their own unique way.  Links to where you can learn more and find these items are included as hyperlinks.

Arm Warmers - I get colder now and do layer, but sometimes just need periodic warmth on my arms.  In addition, I find that arm warmers provide a bit of compression to help my arms feel a little less fatigued as the day goes on.  I've tested a couple, but the ones I like best are  from Derivative; mostly because the don't slip.  They are a soft cotton blend; and as a more conservative dresser, I like the solid colors.  I can put them on in the morning and easily slip them off as the day warms up.  Or, keep them on if I need my arms need some extra support throughout the day.  Besides, their models make me feel like I'm one of the cool people!

Compression Socks - Like the arm warmers, compression socks are a must have for those with circulation issues.  They are excellent for long trips, but also for those who may be sitting and not moving around for long periods of time in a facility or at home. The compression socks from Comrad have a comfortably tight feel, without being too challenging to pull on or off - especially for those who already struggle with hand strength and coordination.

Airborne Particle Blocker - Healthcare facilities can have questionable air.  NasalGuard provides an invisible barrier against contaminated air, virus-size particles, pollen, dust mites, smoke and more.  Those with significant allergies or suffering with air pollution will really appreciate the electrostatic technology that reduces the inhalation of airborne particles.  All it takes is a drop rubbed under your nose every 4 to 6 hours.

Denture & Partial Spray - The EverSmile FreshDent is a portable cleaner and that kills bacteria for denture and partial wearers - even while they are in the mouth.  As a long time retainer wearer, this is certainly a welcomed product for those on the move, as well.

New & Improved Toothbrush -  Dr Plotka's toothbrush has antimicrobial bristles infused with silver to naturally eliminate 99.9% of bacteria that grows in between uses.  This is great for the average person. But, for those with fatigue, arm/hand weakness and/or coordination challenges, it also means more effective brushing - and who doesn't love a new toothbrush!

Blue Light Blocking Eyewear - Patients and residents of healthcare facilities don't have control over all lighting.  And, sleep is really important and valued.  SafetyBlue offers two styles of glasses for wearing before bed to signal your body to produce melatonin naturally.  Some will need to work up to wearing them for longer periods, since it is an odd feeling at first.  But, after a few nights you will be wearing them for a couple of hours  before bed and sleeping better.  On style even allows you to wear them over your regular glasses.

If you have tried any other products and want to share what you have found, leave a comment for all to benefit.

Firearm Safety and a Dementia Diagnosis

The US Census Bureau estimates that  older people will outnumber children for the first time in US history by 2035.  So, it makes sense that we will see a corresponding increase in the more common “older people” conditions over the next several years.  This includes Alzheimer’s and other dementias that impact cognitive functioning – including the reality they may no longer recognize close family and friends.

In prior blog posts I’ve addressed gun violence restraining orders, as well as, personal safety planning and want to bring these two together today.  Why?  Because I’ve been reading in social support groups about the struggles caregivers are facing as they remove guns, or attempt to remove them, from the homes of parents, grandparents, spouses, and others with dementia.  It occurred to me that we are more focused on the safety of older loved who are still driving.  But, what about those who own guns?  Just as someone may no longer be considered a responsible/safe driver, they might also no longer be considered a responsible/safe gun owner.

The Alzheimer’s Association has produced a fact sheet that provides some tips to help caregivers with the conversation and process, but it isn’t always going to be easy.  Family caregivers also need help from physicians and other professional caregivers; who should at least ask about the presence of guns in the home during the assessment process.

Friends and family members, as well as, healthcare providers need to assess risks and focus conversations on safety during care planning activities.   For example, the Veterans Health Administrations recommends that clinicians and care teams ask about firearms during safety screenings of those with a suspected or definitive diagnosis of dementia.

The American College of Physicians has also established policy positions based on a public health approach to support caregivers.  They recommend medical professionals speak out on prevention of firearm-related injuries and deaths, just as physicians have spoken out on other public health issues.  They encourage physicians to counsel patients on the risk of having firearms in the home, especially when “children, adolescents, people with dementia, people with mental illnesses, people with substance use disorders or others who are at increased risk of harming themselves or others are present.” 

In an NPR article, one psychologist who promotes the idea of talking to patients about the presence and location of guns, also addressed ways to guide the conversation to make it more acceptable.  Dr. Joleen Susman suggests a more successful approach -- talking about “retiring” from driving and using firearms  – instead of taking these privileges away.

Dr. Emmy Betz, an emergency room physician, also recommends having these conversations early in the disease and involving loved ones in the planning and decision process.  She encourages use of  written firearms agreements, such as the sample below.

Beyond being non-judgmental and simply asking patients if there are firearms in the home, UC Davis has created guidance for healthcare professionals who need and want to have a focused interventions with at risk patients.  Resources available also include patient handouts.

In some cases, those with cognitive dysfunction can become angry, aggressive and refuse to voluntarily have guns removed from their possession and/or the home.  In these cases, family member must keep safety – to self and others – at the forefront of conversations and reach out to local law enforcement for assistance.

Thirteen states have established “red flag” laws that allow law enforcement, and sometimes family members, to petition a judge for temporary seizure of firearms from those who exhibit dangerous behavior. Both the  NRA Institute for Legislative Action or the Giffords Law Center to Prevent Gun Violence are resources for the status in each state.

We do all have the right to keep and bear arms.  But, we also have a responsibility to recognize when it is time to relinquish that privilege for the safety of others and ourselves.

Tips for Getting Through a Difficult Time

It isn't uncommon for people to make supportive and encouraging comments to me after hearing bits of my GBS story.  I suppose it is partly because I am an optimist, but I explain that I truly am fortunate.  I didn't become completely paralyzed - in a hospital ICU, on a ventilator, for several months, then in rehab and stuck in a wheelchair.  Instead, I truly appreciate what I have because I also wasn't young - just embarking on my college education, new career or have a new family.  I wasn't one of the new moms that didn't get to hold their newborn baby for months, or the young child who didn't understand what happened that they needed to re-learn how to walk.  Instead, I had already finished college, started a family and launched little adults from the nest and had progressed up my career ladder.  I'm on the sunset side of my life and have the time, security and mental strength to fight my disease and re-build my functioning.

The tips below are from one of the young people... those with what I believe are the greater challenges. Go little turtles!

Guest Post:  Blogger Holly Frances of Holly After GBS

One of the most common questions I get asked, is HOW did you get through what you did? And its a tough question to answer. Spending nearly 3 months in ICU, getting off a ventilator and learning to walk again - all with a newborn baby - is something I never thought I would be able to get through. But I did. I persevered and am stronger than ever. 

And that wasn't the only hardship in my life. I've gone through a LOT of awful things. From broken hearts, to financial trouble, to divorce. Plus all the in between; the day-to-day stresses we experience from being an adult, a parent, a human being.  And when we experience these challenging times, its often difficult to believe we are going to get through them. But you will! 

Here are some tips I use when I'm going through a difficult time:

1. 1. Write down the biggest thing that you are struggling with right now. Then brainstorm a list of ANY TINY possible things you could do that might improve the situation. They may not solve your problem but even small improvements can help. Without brainstorming, you may not even realize the options you have.
   2. Make a list of long term goals  you think would improve your life. What do you want to achieve this year? What would you like to be doing? What gives you purpose? What things can you do every day to get you closer to those goals? Taking steps towards these goals will give you a sense of accomplishment.
   3. Every day, write down something you are grateful for. It can be as simple as having a house to live in, or finding a dollar on the ground the day before. On hard days you may have to dig deep, but it’s a good reminder that there is always something to be grateful for. 
   4. Make a list of the things that you love doing (that you are able to do) that set your soul on fire. They can be things that are done daily, like cooking or drawing, or things that can be done periodically; like going to see a play. Just make sure you are doing the hobbies that you love to do! On the flip side, is there anything you are able to remove/change from your life?  Stop doing things you hate to do! 
   5. Make a list of some of the hardest times in your life. Remind yourself that you made it through those times. You are so much stronger than you think you are. And you can get through this too. Say that to yourself as many times a day that you have to. 
   6. At the end of your day, write down three things that you accomplished. On particularly bad days, small things like doing your hair counts, even having a shower or getting out of bed!  Writing accomplishments down, no matter how small they are, reminds you that you are moving forward!  Keep going! 
   7. Make sure you surround yourself with friends and family that you love. Alone time is often needed, but isolating yourself can make you feel worse. Spend time with your favorite people and ASK for support! 
   8. Get your body moving! Exercise is the most underused medication in the world!.You have the ability to increase your dopamine levels (the feel-good chemicals inside us that make us happy) at any point in the day! If you struggle with finding the motivation or the time to get to the gym, then start small! Its amazing how you can feel after just ten minutes of say yoga or a brisk walk a few days a week.   
   9. Pick a charity to get involved with or donate money to. Research shows that donating either your time or money to charity makes you feel GOOD! And it’s good for society too ;)
   10. Watch online videos of inspiring people overcoming devastating tragedies. Not to see that there are others who have it worse than you (because what you are going through is hard too; don’t diminish that) but to remind yourself that there are so many people that have overcome the impossible — and you can too. 
   11. As often as you can, try to change  your view. Positivity goes a long way. Just once, trust that everything is happening for a reason. Trust that everything is going to work out the way you want it to. Rembever, no one expects you to be cheery all the time, but just try to ditch the negative self-talk as much as you can. And no matter how bad of a day you have, no matter how negative you feel when you go to bed each night - start fresh with a positive attitude every day. If it doesn’t go to plan, it’s OK to try again tomorrow.  It doesn't matter how many times you have to start over. You just keep trying. 

Virtual reality: From the OR to the patient bedside

I haven't written much these last few months, because my typing accuracy and speed have not been the best.  But, I'm still trying and just had a new article published after several months. 

Some of you may remember the old Atari game, Pong.  It was the first virtual reality game I ever experienced.  Virtual reality has evolved and is much more sophisticated in 2019.  And, it isn't just fun and games anymore.

My article reviews the latest in the world of virtual reality and its use in surgery and medical training.  It describes how neurosurgeons can "practice" a procedure they are about to actually perform on a person's brain using three dimensional virtual reality.  But, perhaps, more importantly, I point out the value of these tools to patient education and their understanding for better decision making.   The informed consent process is very important and most patients probably don't truly understand the significance.  This becomes a much more important issue as risks increase; as does the possibility of poor outcomes - serious injury or death.

My important message for consumers, family caregivers and patients themselves is to ask questions, research and appreciate the application of technology to improve understanding and the ability to act and make better decisions.  Technology, if well planned, designed and implemented, can improve the quality and safety of the care we all receive. Be open to trying something new, such as, virtual reality!

Read the article and let me know what you think by leaving a comment.

Patient Caregivers: The Importance of Self-Care

I just returned from a long trip to help my dad care for my mom.  I was able to get my own scheduled treatments shifted over to providers in that state and community.  

Upon arriving at my parents' home; I assessed a serious state and quickly got to work taking steps, as any nurse would, to improve my mom's condition.  My efforts were a ultimately a success and I felt comfortable returning to my own home and family; after having been there through Thanksgiving, Christmas and New Years day.

At first, I was happy to cook, clean, organize, shop, as well as, facilitate and provide care for my mom.  It was my turn and chance to give back.  But, then I started feeling the fatigue coming earlier each day.  I prompted family to help, but old habits were hard to break.  I finally got to the point of having to announce I wasn't cooking or cleaning after meals.  People showed up on New Years day (while I was packing my car to leave the next day) expecting the traditional feast and I brought out leftovers; which weren't so well received.

My family are all aware of my GBS/CIDP and functional limitations, but they were spoiled by mom.  As her health improved, I had her helping to empty the dishwasher and fold laundry to exercise her body and mind.  However, she could not do what she use to do. And, we couldn't sustain doing the work alone.  My children and husband arrived and helped us, but even then it would have been nice to see the whole family involved.

Then, I return home and read an article about George Price, a completely altruistic evolutionary biologist and scientist ... who ultimately died as a result of his selflessness.  The author of the article draws a couple of lessons from the story of such an intelligent man; especially on the importance of self care.

"But the second, broader lesson is that self-care is important. Price’s altruism was all-consuming, to a point of self-destruction and collapse. That wasn’t good for him, obviously. But it wasn’t good for the homeless community he joined and tried to help either. That isn’t a statement on Price’s character, which I do not feel in any real position to judge. But it’s a statement about the value of all-consuming altruism as an ethos."

I have always believed a hospital has to function in a way that allows it to sustain its operations; in order for it to be able to continue serving its community.  Working with so many professional caregivers, I also saw the importance of self-care  for preventing burnout and maintaining staff health.  Now, as a patient what I know was put to the test as I had my own experience with needing to put myself first, so I could continue to focus on my priority (caring for myself and mom) instead of lesser demands (feeding my unhelpful family members).

If you find yourself caring for others, put yourself first so you have the strength and endurance needed to complete important tasks.  Why, because if your health deteriorates to the point that you can no longer care for others, who will take your place... and care for you?  A burnt out caregiver becomes the patient themselves - adding to to the workload.

It is ok to ask for help (family/friends or home care and respite services), prioritize and set boundaries or simply say no when you are being asked or expected to take on too much.  Being strong ultimately benefits all involved.

Bed Rails for Home Care

Those recovering or being cared for at home after an injury, illness or surgery sometimes need a safety feature commonly found in hospitals, nursing homes and rehab facilities.  That most common and effective (if actually used) safety measure has prevented falls in facilities; and it can do the same at home.  

During my research over the last year and a half, I was enlightened and learned that bed rails for the home come in many shapes and sizes... from a traditional long rail to a small handle.  I also found that Stander offers a line that blends in with a home environment, instead of standing out and turning a bedroom into a hospital-looking room.  Don't get me wrong, I like hospitals and their looks are functional.  But, the home doesn't need to look so sterile.

Below are some of my favorite bed rails and one I carry in my little online shop. If you like what you see and have questions, you can contact me to discuss your specific needs.  Each of the bed rails are easy to set up.  The proof is that I have set up a few for demonstrations.  They are also sturdy and well made - important to me.

The first is the one I wish I had before I began my treatments for GBS.  But, I didn't yet know it was available.  It is a mobility bed rail with a pivoting arm to aid those who need help not just staying in or getting out of bed, but also support taking those first couple of steps.

 

 

Next, I really like two small bed canes.  The first is a reversible bed rail or support handle (pictured left) for those who don't need a traditional or full bed rail.  It also comes with a little pouch to hold a few important items; minimizing the need and risks to lean over to reach items on a bedside table.  To the able-bodied, this may not seem so important. But to those with balance, coordination and strength functional limitations, this is a valuable feature. The other option is the event smaller PT bed cane (pictured right) for support and keeping items, such as a cell phone or medical alert/alarm, within reach. Both of these bed canes aid in sitting up and getting in and out of bed.

 

Some will need a full size bed rail for the greatest fall protection while in bed.  The EZ Adjust Bedrail is similar to the size of those in a hospital when fully extended.  But, it can also be
shortened for a more personalized fit.  It also folds down, and out of sight, when not needed.  It is the most popular for the frail elderly or anyone at risk from falling from a bed.

To learn more about each of these bed rails, and other safety features for the bedroom, visit the Bed and Bath category of my little shop focused on the needs of those with functional limitations due to injury/illness and wanting to live and age in place in the comfort of their home. 

Soft Warm Socks and Gloves

Fall brings a change to the color of leaves in trees and a coolness in the air that will only turn to cold; especially on damp days.  For people with nerve damage and neuropathy, these changes also bring about more severe pain.  While CBD or heating can help, warm socks, gloves  and arm warmers can add to feelings of warmth and comfort. 

Support groups are currently abuzz with individuals asking others what they use to keep aching feet, arms and hands warm.  my go to are the super soft aloe-infused gloves and socks from Earth Therapeutics. Try them and let me know how they work for you.  Or, purchase some as a holiday gift for someone who complains about the cold and/or pain.  

If you know of anything that works even better, please leave a comment. 

 

Woodworking as Art Therapy for PTSD

Guest Post: Robert Johnson is a woodworking enthusiast whose passion for power tools is expressed through writing. He is the founder, owner, and main author of Sawinery.net, a blog site dedicated to his personal reviews of different types and specific models of saws. Through the years, his interest in woodworking expanded beyond tools, which started his quest to write about woodworking projects and fascinating stories of woodworkers as well.  He recently started to explore the power of woodworking as therapeutic healing art; especially for PTSD/CPTSD.

Some people might think that woodworking is a challenging hobby because of all of the work and tools that are used to perform the hobby. However, regardless of your experience woodworking can be quite beneficial. Not only is woodworking an art, but it is also known to be a form of art therapy for those who have had traumatizing past experiences and need something to keep their mind in a more positive state.

Believe it or not, woodworking can be quite relaxing despite the amount of technique that is used while carving designs and patterns into your choice of wood. It helps a person to work on improving their psychological imbalances in their life. People are able to work towards thinking more positively. It’s quite close to a typical psychotherapy session that one might take, but it is a more fun and interesting way to approach the hardships that you might be facing in your life.

Woodworking in the form of art is truly a great way to reduce stress as well as feel accomplished about the work of art that you have completed. So what are the details of how woodworking can be used as art therapy? Keeping reading for more details.

Crafting a piece that you like

You can actually start your art therapy by admiring a piece of art work that you find in an antique shop or online. Instead of purchasing the piece of wooden art, you can make it yourself. Just think of how good you’ll feel after creating a work of art that you admired. You may think it is impossible to do if you don’t have experience with carving, but patience and working slowly is best to achieve your desired results.

Engaging your brain

When taking part in woodworking as therapy, it has been proven that your brain is actually more engaged in a positive and creative way. This is good practice in helping you to not focus so much on the negative and focus more on the positive. You will naturally improve in your social skills as well as better understand your emotions.

Happiness

The main emotion that is most important when it comes to woodworking for art therapy, is happiness. Although there is a chance that you might become a bit frustrated while working on your wood carving art piece, keep in mind, in the end you will feel happy that you made the effort and you can tell others “Hey, look what I made!” It will be a wonderful feeling, and keep in mind the more you take part in this sort of therapy, the better you will get at carving your works of art.

Increased Self-esteem

Once you’ve completed your first woodworking project, you will find that your self-esteem has increased. When you know you have done a great job on a project that you have completed, you will naturally feel good about yourself. You will also begin to notice that you experience less stress and nervousness from anxiety.

Activities like this can also aid those with any chronic illness and the anxiety it brings; allowing them to be more focused and productive in their home and work lives.  If you have examples of other art therapies, please share them in a comment.

 

 

Adult Child Caregiver - The Sandwich Generation

Last week, just in time for Thanksgiving, I officially became an adult child caregiver of the "Sandwich Generation".  I've made a significant impact to turn things around.  So, this video is particularly and specifically of interest to me as I learn to be even more patient than previously.

 

Cheers to the holidays; and those caring for someone with dementia or Alzheimer's!

Exercise & Peripheral Neuropathy

This guest post comes from the Foundation for Peripheral Neuropathy; a public charity foundation committed to fostering collaboration among today’s most gifted and dedicated neuroscientists and physicians. To support their work, visit https://www.foundationforpn.org/donate/

 

We all have heard that exercise is important for 

everyone, including people with peripheral neuropathy. But have you given thought as to what to include in your exercise program to have the most benefit for your body and your health?

 

A complete exercise routine should try to include four kinds of activities.

1. Aerobic Exercise: Aerobic exercise works your muscles and gets your heart rate going. It also improves circulation, can reduce neuropathy pain, and help control blood sugar levels. Water aerobics, stationary bicycling, walking, and low impact exercise classes are all good low impact aerobic activities. You should aim for about 30 minutes a day, 3-5 days a week. 
2. Flexibility Exercise: A gentle 5-10 minutes of stretching can help your body warm up for aerobic activities. It also can keep your joints flexible and reduce the likelihood of injuries. Check out a few flexibility exercises on our website to get those muscles stretched and warmed up. 
3. Strength Training Exercise: Strength training should optimally be done 2-3 times a week to build muscle and stronger bones. You can go to a gym, or work out at home with light dumbbells or elastic bands. Everyday tasks help build strength as well, like carrying groceries, housework and gardening. The more you do, the more muscles you build and the more calories you burn even at rest. And it get easier the more you do it! We have a few strength building exercises on our website to add to your exercise routine at home.
4. Balance Exercise: Balance training is important for everyone as we age. Older muscles are smaller and respond less efficiently, making a person more vulnerable to falls. In addition, young or old, people who have muscle weakness, joint pain or dizziness, benefit from balance training and exercises. Balance training can help you get back to normal, and overcome feelings of stiffness or unsteadiness. Want some ideas on balance training? We've got some for you here on our website.

Building these activities into your everyday routine can help you feel better and improve your overall health.

 

FPN recommends that you refer to a Physical Therapist or doctor regarding an exercise program that's right for you.

 

Really Support Others Who Are Grieving

As a hospital administrator, I was sometimes called upon to support patients, families or even employees who were going through difficult times in their lives.  I learned fairly quickly in my career to express empathy and support the natural grieving process... not fight it and rush to make things "all better."  Today, I find these skills help me support an aging parent who is experiencing loss of functional abilities and needing to work to recover quality of life.

I truly believe everything happens for a reason.  Seeing this video on Facebook yesterday reaffirms this belief.  Perhaps you too will find value in this video.

 

 

The Burning Question: Who Will Foot the Bill for America’s Increasing Burn-Care Costs?

I think about burn patients when I see the ergonomic tube squeezer I added to my shop as soon as it came onto the market.  Yes, it helps those of us with hand weakness and coordination, but it is also excellent for getting just about every drop of any product out of a tube.  This may not be important for toothpaste, but it is for expensive medications.  This is where burn patients come in and their reliance on expensive ointments, salves and other topicals.

I'm pleased to share a guest post that highlights the cost of burn treatment and the impact of burns on patients.

Guest Post:  Celia Belt, a burn survivor, is the founder of the award-winning Moonlight Fund Inc., a non-profit organization that provides financial and emotional assistance to burn survivors and their families.  She is the author of Remarkably Intact: Angels Are No Strangers to Chains (Broer Books, paper, $18.95).  For more information, visit: www.remarkablyintact.com.

Each year in the United States, half a million Americans will be treated for burns so severe as to require hospitalization.  The “survivors”—including more than three-hundred children each day and a drastic increase in U.S. military members since the turn of the millennium—can be expected to undergo arduous, agonizing surgeries and  painful rehabilitation lasting for years. 

The emotional and physical trauma of these fellow citizens is not a pretty picture. Nor is it an inexpensive one.  According to estimates, patients with severe burns with no complications can expect a whopping $1.6 million bill for treatment over the cost of their lifetime.  For patients who do go on to develop complications as the result of severe burns, hospital bills can run more than $10 million.

Where is that money coming from?  Partly from you and me in the cost of increased healthcare premiums.  But often times from people like me, directly.  As the cofounder of the Moonlight Fund (www.moonlightfund.org), a Texas-based non-profit organization for burn survivors and their families, we’re often tasked with raising funds to help with the costs of expensive procedures in addition to the emotional support and caregiver assistance our organization was founded for. Many times I’ve reached into my own pocket—not because I’m a saint, but because I’ve been there.  As a childhood burn survivor myself, scalded over 32% of my body, I’m well aware that infections resulting from burns—which occur in one out of three cases—add between $58,000 and $120,000 to treatment costs.  Skin breakdown—which happens one out of two times—adds up to $107,000 more.  Disfigurement and scarring?  Up to $35,000 on top of that.  Then, of course, there are the psychological issues associated with severe trauma.  57% of burn victims need help for it, help that costs as much as $75,000 per patient.

It’s no wonder I spend a good deal of my time trying to find scholarship beds for survivors soon leaving the burn unit or negotiating with compression garment companies to give us a break on high-cost wound garments for our patients.  The time we spend writing grant proposals, hosting fundraisers, and digging into our own pockets to help people could far better be spent helping them emotionally recover and fit back in to a society horrified at burned skin.

Burn victims—who are often socially isolated due to their wounds—appreciate you not staring at them on the street.  But that doesn’t mean we want to be invisible.  Today, more than ever, we can’t afford to be.

Fall Risk? Get a personal alarm!

So, last year I was a fall risk, due to my Guillain Barre Syndrome, and did fall on a regular basis.  I didn't go outside unless someone in my family was around.  Early one evening I ventured off the patio to do something I don't remember.  I do remember thinking I could fall and no one would know, because my husband and daughter were inside.

Well, I did fall in the pathway and couldn't get up.  I even crawled over to a stack of potting soil to use it to climb, but it wasn't really high enough.  I called out for my family and laid there exhausted for a while.  Finally, my daughter came looking for me and helped me climb up the potting soil and stand.  At the time, I thought I should find some alarm.

Not long ago, I was introduced to SABRE’s line of safety gear for outdoorsmen/women and they sent a sample of their alarm ( and gel pepper spray) for me to test.  I explained my interest with their  Personal Alarm Clip and LED Light not just from a general safety perspective, but especially for those who are a fall risk or have other functional limitations.

The alarm is perfect for any age and is easy-to-use.  A press of the button is attention grabbing; with a 120 dB alarm audible 600 feet (185 m) away. It is easily accessible, simple and effective; when clipped to avoid fumbling for the alarm. To activate the weather-proof alarm, simply press the button to turn the alarm on and off, alerting others to your situation. The multi-modal LED flashlight also ensures that you are visible in all light conditions.

While I have recovered to the point where I'm not falling, Im still at risk due to my sensory ataxia.  I can see this little device giving me a bit more freedom and allowing me to be more independent.  If I need help, my family will know in advance to listen for the alarm.

If you feel stuck inside or fear being in a situation (at work or home) where you need help and no one will hear your calls, consider an alarm like this as part of your personal safety and security plan. My recommendation is to always alert those you will need to help (family, coworkers, neighbors, bystanders, etc) when you might use it ... before you head out on your own.

Get out there and enjoy life, in spite of the challenges you might face!  And, stay safe!

 

 

 

 

Weighted Utensils

Last year, I wrote about my difficulties holding a fork or even a toothbrush.  I needed a larger handle to grip, so I found the Good Grips stainless steel forks, knives and spoons with their  chunky handle.  This item was also added to my little collection of tools for those with functional limitations in the online shop.

Fast forward to today and my disease and symptoms have evolved and changed; as sometimes happens.  It isn't a gripping challenge, as much as tremors that now afflict my hands.  This means that an eighth or more of my half teaspoon of sugar for my morning coffee usually gets sprinkled across the counter.  Fortunately I've found a solution - a weighted spoon. 

During my first occupational therapy session this week and I mentioned my little tremor and sugar spilling challenge.  She handed me a weighted fork to test with some beans and it worked.  I'm ordering one today and will also add these utensils to my little shop - now that I know why one would need them.  

If you do have the functional limitation of being able to grip and grasp a dining utensil, then check out the link below. 

Bathrooms and Functional Limitations

Who knew navigating a bathroom could be so frustrating and potentially unsafe.  Well, I did, at least I thought so until I had my own experiences in 2017 and into 2018.  Below, I outline the challenges and solutions I found, even if it was a little later than I needed.  Keep in mind I was a fall risk due to balance, coordination and strength issues.  I also struggled, significantly, to rise.  

Brushing Teeth - the safety here was my fear of tooth decay, in addition simply to wanting to feel better after brushing.  However, I had a hard time holding and controlling my toothbrush.  I needed a bigger handle and something to help me do a better job of the brushing process.  I found this in Dr. Plotka's travel toothbrush to be my new best friend because its silver flossing bristles helped me keep my teeth clean and the bigger handle helped me actually be able to attempt to brush my own teeth.  As my health improved and my hand strength and coordination improved, I switched over to the regular toothbrush and its chunky handle.

Bathing - Even though I wanted to soak my aching muscles in a bath and feared falling while standing in a shower, I simply could not safely get to a standing position after a bath.  The paralysis of my lower legs and feet combined with my lack of strength made me fear falling in the tub, as well.  Although I tried holding onto everything, nothing helped.  Perhaps a grab bar would have helped, but I simply switched to showering, especially since lifting my feet to get into a bath was also a challenge and I have a walk in shower.

Showering -

The first think I did was purchase an anti-slip bath/shower mat at Ross. 

Just like brushing my teeth, washing my hair was also a challenge.  In addition, I had to hold onto the shower wall, especially when closing my eyes.  I didn't realize there were suction cup safety bars until after my condition began to improved.  Had I know, I would have gotten one.

I also found Palmer's Co-Wash Cleansing Conditioner which allowed me to pump the product into my hand (I couldn't lift bottles) and wash it out of my thick hair without worrying about getting all of the suds out. 

A wet washcloth was too heavy and I was likely to drop it, creating the risk of a fall if I tried to bend down to pick it up. So, I used exfoliating bath gloves to wash, instead.

Opening Tops - Any top... to moisturizer, toothpaste, supplements/medication was impossible for me to open without help from my family.  I finally found a foam jar opener and left it in the bathroom so I could open the tops myself.

Getting Up - Whether it is up and over the side of a bathtub or up from a toilet, I needed something to hold on and pull or push myself up.  The only help I had came from my husband and the toilet paper holder - which surprisingly held up.  But, there are grab bars and poles available to help those with long term needs; or for when you are alone.

The reason why I share all of this personal information is because when I needed solutions to my functional limitations and challenges, I was laser focused on the task at hand and then getting to a safe place to rest from the fatigue of the effort.  The solutions I did use, were things I had already seen or knew about.  It wasn't until I began to improve and I had plenty of time sitting on my sofa with my feet up and my laptop that I really started looking for tools that could help those facing similar situations.  

Why is no one using our patient portal?

A while back I wrote an article on why patient portals aren't being used.  It was written while I was in a fatigued frenzy as a patient trying to find a diagnosis.  Since then, I continue to experience the healthcare system and identify opportunities to improve communications with patients.  My most recent recommendation to home health organizations is to actually get a portal so patients can confirm treatment dates.  To practices who have a portal with forms to be completed prior to a procedure being scheduled, make sure they are the most current version and the save function actually works; to avoid wasted time and rework.

Here is the original article written for Multibriefs...

Patient portals and the functionality they offer have the potential to increase access to service, improve convenience and more effectively engage patients and consumers. They can also increase efficiencies for both patients and their providers.

It is for these reasons that most providers, payers and technology vendors have at least considered offering patients and consumers access to these online tools. Unfortunately, some of those who have adopted patient portals complain that they have made the investment, only to realize low adoption and utilization rates.

So, why might patients not be using your patient portal?

Many patients — especially those with low health or tech literacy rates — may have heard of your portal, but don't understand the benefits to them individually. Or perhaps, there are barriers to them acting to gain access; such as believing they aren't tech savvy enough or simply not having the motivation to change old habits.

Aside from providing access to a platform, the provider/payor/vendor also needs to invest in strategies that facilitate user education, training and adoption. In some cases, this requires turning to family caregivers who need access themselves in support of the patient, or who can help them learn and navigate the most relevant areas to them personally.

In other cases, the provider/payor/vendor needs to reflect upon the targeted population and the usability of the portal, its functions and offerings. A few examples of user complaints include:

It is difficult to register and gain access to the portal

Not enough relevant info — such as a list of imaging studies completed, but no access to the report or results

Staff and/or providers don't respond to messages in a timely manner — if at all

Appeals and grievances can be submitted through the portal, but the decision is mailed through the U.S. Postal Service, resulting in delays

A recent Black Book Research poll found that 96 percent of patients report leaving their doctor's office with limited knowledge of how to use the patient portal. Of the 40 percent who attempted to use the software in 2016, 83 percent said it was too complicated. For benchmarking purposes, this means only 7 percent of patients found the portal simple enough to use.

An excellent way to identify opportunities to improve your patient portal is to assess the portal design, functionality and alignment with your patient needs and interests. Some questions to reflect upon include:

Is there statement that reassures patients of the portal's security measures and privacy safeguards?

If there is a delay in when test results or reports are released to patients, is that clearly communicated?

Can patients complete routine questionnaires online and make periodic updates to their information?

Would an online appointment summary of key findings and/or follow-up add value for patients who don't remember everything the physician tells them during the encounter?

Is it easy for patients to see summaries, reports and results and forward them to other providers on their care team?

Are engaging tools and resources available to guide patients on self-management activities, such as suggested apps, medical device options/recommendations or multimedia educational content?

Can patients message both administrative and clinical staff to avoid frustrating call trees and phone tag?

Can users securely upload documents to attach to their messages or add to their medical record?

Another technique is to gain insight to the patient perspective by obtaining feedback from your population by asking a pool of patients to assist you with user testing. This would include feedback on the ease of gaining access, navigating the site, their assessment of resources and information, and completing transactions, such as requesting an appointment, messaging, bill pay, etc. User testing by patients and their family caregivers can also help you determine whether:

the site easy to navigate at home for all segments of the population

the portal accommodates the patient's, or family caregiver's, learning needs

the resources, information, functionality are relevant to the patient population(s) served and provide value to users

patients want to see other online tasks accommodated by the portal, such as requesting medication refills, bill payment

your patient want to upload data, such as glucose levels, daily weights or information from wearable sensors for trending and alerts to both the provider and patient when some intervention is needed.

Patients have become accustomed to this technology in other areas of their lives, such as retail, banking, travel and general communications. They expect it from their entire healthcare network, starting with their providers and payors of care.

Mental Health Informatics

The current issue of the Annals of Family Medicine includes two articles that deal with mental health and information technology.  There are many assumptions about mental health in the age of digital health, so perhaps the findings of this research will give patients and providers some additional insight  This will help improve decisions to support self-management activities.

Mental Health Apps - This study examined how mobile health apps frame mental health; including who is affected and how to manage symptoms.  Of the 61 apps identified, 34 (56%) addressed panic/anxiety/stress, 16 (26%) focused on mood disorders and 11 (18%) addressed well-being or other issues.  The two dominate findings are that poor or fragile mental health is ubiquitous and users can easily manage their health with apps.  However, the sufficient scientific data for the claimed benefits was not offered.  In addition, the representation of users does not match with the actual diversity found in the population of those with mental illness. 

Access to Clinic Notes - This study assessed patients who had access to primary care clinic notes through secure online portals.  Patients with at least one mental health diagnosis were compared to those without; and both had similar perceptions to online access to notes. Most patients had positive perceptions about OpenNotes and were similarly enthusiastic about the utility of reading their doctors notes online.

The results of both studies highlight  the importance of providers/physicians recognizing the risk and benefits of information technologies that are available to their patients.  In the case of apps, physicians will want to address use of mental health apps by their patients and educate them on normal mental states and the importance of supports when needed.  This is to challenge the possibility of over self- diagnosis and implication of individual responsibility for mental well being.  Conversations should include a limitations of app use and the importance of seeking clinical attention for important or enduring psychological distress.

Physicians may also want to consider that access to clinic notes may help patients engage more actively in their treatment and improve communication and build more trusting relationships.  It might also stimulate more non-judgmentally written notes to further strengthen the patient-physician relationship.  I would also add that clinical notes reflecting the conversation may also help patients improve their compliance with physician recommendations and the treatment plan. Yes, it may be appropriate to block some parts  available online for certain patients due to safety reasons, but in a family practice this should be a small population.

The findings from both of these studies do point to the increasing reality, which is that patients are going online and using tools for information and tools to better manage their mental health.  It is the responsibility, and in the best interest interest, of physicians to have informed conversations with their patients, as appropriate.

Another ZDoggMD... Through the Haze of Medical Marijuana

ZDoggMD, AKA Dr. Damania, is one of the coolest of the cool docs around.  It does make me happy to see him weighing in on the topic of medical marijuana.  Let him guide you through the haze and watch!  I do love the background smoke!

 

 

Advocacy and Activation

A couple of things happened in the last two days that made me think it is time for me to again mention patient advocacy; including self-advocacy.  First, the monthly meeting of Chronic Disease Coalition Ambassadors occurred and the importance of patient advocacy and even self advocacy came up.  The second thing to occur, beginning yesterday, was the potential delay in another treatment due to an "insurance authorization" issue.  I had already been digging down to identify the actual issue when the CDCA call occurred.

Across my career I've ensured that people had a shared mental model and understanding.  When it came to patients, I welcomed and encouraged them to identify advocates, or advocate for themselves.  But, what is advocacy?  It really is about speaking up, questioning, addressing concerns, asking for clarification, and ensuring that one's needs and desires are heard and understood. Healthcare professionals are human and make mistakes and sometimes these cause harm to patients.  Advocacy is a way to keep patients safe and minimize the risk of harm; or at least lessen its impact.

One place that I've turned for educational content that uses engaging video to help consumers and patients better advocate for themselves is the Joint Commission's Speak Up Initiative.  Below is just one of the videos, on the topic of identifying a family/friend advocate.  Videos also address scenarios and issues, such as, doctor visits, at home, preventing medication errors, reducing your risk of falling and more.

 

Back to my advocacy issue... I was told by the speciality pharmacy my treatments scheduled for next week would have to be delayed because insurance authorization for payment was still pending.   The disappointment and frustration I felt "activated" me and my first call was to the insurance company to check on the status of the authorization.  I was told that one had not been submitted by the pharmacy.  After a few more questions and some digging by the customer service rep, I was told that there was an authorization from January that covered my treatments through mid July.

So, I called the speciality pharmacy back to explain this and ask why they needed a new authorization.  They did some digging and found out that yes, next week's treatment is actually already covered.  In the process, I identified some opportunities for my insurance plan to improve their communication process and for the speciality pharmacy to improve their tracking processes.  In addition, I learned a bit more about how the authorization process works for these recurring treatments, so if this happens again, I'll be prepared to ask even better questions.

The result is that my treatment remains as scheduled and it won't disrupt my plans for the next few weeks.  Had I just accepted that initial phone call and the needed delay as fact, I would have been frustrated, stressed and a bit angry that I would have to cancel my plans for a little road trip to get away and rejuvenate.  

So, ask questions until something makes sense.  If the healthcare providers don't have answers, encourage or ask them to look into the matter and get back to you.  Follow up on leads that take you back to the person who has the information you need.  Also, don't be afraid to make a little noise and reach out to a supervisor, manager or even the chief executive officer, if something is especially important.

Senior Safety: Death from Falls

The CDC just released data on unintentional injuries for persons age 65+ in the US between 2007 and 2016.  While unintentional injuries are the seventh leading cause of death, falls account for the largest percentage.

• 1/4 of US residents aged 65+ report falling each year
• fall-related ER visits are estimated at 3 million per year
• In 2016, 29,66 US residents age 65+ died as a result of a fall, compared to 18,334 deaths in 2007

My first thought is that we have more seniors today than we had in 2007,  as a result of Baby Boomers attaining a senior status.  We aren't referred to the silver tsunami for nothing.

However, the CDC evaluated this data a bit more and found that the rate of deaths from falls have increased by 31%, or 3.0% per year, since 2007.

 

Falls are preventable and healthcare providers should be addressing fall risk with their patients during annual visits.  But, older adults shouldn't wait for an annual visit if they have any concerns about the impact of medications, reduced activity, chronic conditions and age related changes in gait and balance.  The National Institute on Aging's Go4Life site provides information, exercise demonstrations and tools to help seniors get started on a journey to improve their endurance, balance, flexibility and strength.

But also consider it may be time to look into mobility aids, bed rails or other assistive devices to stay safe.

 

 

 

 

 

Healthy caregiving to promote abilities; not enable disabilities!

I came across an excellent infographic that will help guide individuals and their family caregivers build abilities and reduce functional limitations.  I can also see how this might benefit those re-entering the workforce and working with their human resources department and supervisor on accommodations.

The concept of "reablement" is new for me and does fit along the continuum between disabilities and abilities. The word even conveys that this is a process, a journey or an evolution.  Anyone valuing aging in place, as opposed to living in a care facility or with family, will be especially interested in this approach of building strengths.

Life after an illness or injury can feel like climbing a mountain.  This infographic breaks down the steps into manageable pieces and supports those embarking on their recovery journey.

 

Functional Medicine and Essential Oils

Over the years, especially recently in light of my own, I post on functional limitations.  My interest stems from disaster planning a few years ago and the awareness that an evacuation plan needs to account for the physical and other functional limitations of a population.  More recently my interest has turned to reducing, eliminating, accommodating or treating the conditions that produce the limitations. 

Functional Medicine is a medical practice or treatment that focuses on optimal functioning of the body and its organs, usually involving systems of holistic or alternative medicine. It seems to me that it is really directed at eliminating or lessening limitations and this reminded me of a website that  included essential oils in a listing of holistic approaches and alternatives medicines.  This then reminded me of a graphic and article that spoke to me a while back about essential oils for the pain of  peripheral neuropathy. 

So, I thought I'd list the five essential oils for peripheral neuropathy here and see if anyone has tried these and noticed improvement. I will be embarking on my own testing and look forward to comparing notes.

     Peppermint Essential Oil: Helps relax muscles, relieves pain, increases circulation, respiration, and provides nervous system support.

     Eucalyptus Essential Oil: Antiseptic, antibacterial, anti-inflammatory, improves respiration, and helps relieve muscular spasms.

     Frankincense Essential Oil: Stimulates the immune systems, relaxes muscles, and has anti-inflammatory qualities.

     Rosemary Essential Oil: Known for improving circulation, relaxes muscles fibers and suppresses muscles spasms.

     Lavender Essential Oil: Pain relieving, anti-inflammatory, antidepressant and helps reduce damaging effects of stress on the body.

 

Now, in addition to potentially helping to reduce the symptoms of peripheral neuropathy, any of these scents will also help improve the smell of any hospital or other care facility.

If you don't know where to turn to obtain these essential oils, I'd love to recommend my little shop for patients just like me.

 

IS CBD the Holy Grail?

During my long healthcare career, I've worked with chemical dependency programs in acute, residential and outpatient settings.  It was during this career that I saw the rise and fall of various addictions and heard The Joint Commission proclaim pain as the fifth vital sign. The pressures to hand out "pain medication" to patients who would provide feedback on whether or not this was done, contributed to where we are with opioids.  But, are their alternatives to opioids and other pharmaceutical medications?  This is a question I keep asking and today's guest post seems to align with my own research on the subject of CBD.    But, I want my readers to hear from experts and am pleased to bring you today's guest post.

 

Guest Post:  Laura Lagano, MS, RDN, Integrative Clinical Nutritionist

Every so often a new supplement or nutraceutical arrives on the scene being hailed as the next best thing. Right now, the buzz about CBD is at a deafening roar. But do people really know what they are buying and, more importantly, why they are buying?

As an integrative clinical nutritionist and co-founder of the Holistic Cannabis Academy,  I’m still astounded at how very little professionals and consumers really understand. So, can we set the record straight on a few key facts?

 

The Name Matters

Nomenclature can get tricky here. CBD, or cannabidiol, can come from a marijuana plant (that which also contains enough THC for a psychotropic effect) or from hemp. Both marijuana and hemp come from the mother plant known as cannabis sativa. By US definition, hemp must contain less than 0.3% THC so that’s why using CBD does not produce a “high” feeling.

CBD, one of many different cannabinoids in cannabis, has multiple health benefits. Strains, (the more technically correct name is cultivars) of marijuana can be cultivated to have particularly high ratios of CBD relative to the THC content. If you’re familiar with the story of Charlotte Figi (profiled on the series “Weed” by Sanja Gupta), her seizures were significantly reduced because of the high levels of CBD in that cultivar. But when buying CBD products today online and at retail stores, it’s the hemp derived CBD that you are using.

 

Why It Works

Think of hemp-derived CBD as a gateway to wellness. Why? Because it is a potent anti-inflammatory and the vast majority of chronic disease involves inflammation. Even the US government is convinced about the potency of CBD as an anti-inflammatory agent; they hold patents for cannabinoids medicine.

In addition to its anti-inflammatory effects, CBD works as an anti-oxidant and neuroprotective. It’s shown therapeutic promise for ADHD, autism, migraine, Crohn’s disease, Parkinson's disease, Alzheimer's disease, cerebral ischemia, diabetes, rheumatoid arthritis, and certain cancers. Progressive healthcare practitioners are often recommending CBD and THC-containing cannabis to their patients as adjuncts to other more conventional therapies.

 

What to Buy

A key consideration about cannabinoid medicine – the use of cannabis and its plant constituents for health and wellness – is something called the “entourage effect.” As the name implies, cannabinoids work better together as a team, rather than alone in isolation. So, when purchasing a hemp-derived CBD product, look for the terms such as “whole plant spectrum” to insure you’re getting all that the plant has to offer.

As with many new modalities or products, consumer demand often drives the growth of a new industry.  This is exactly what’s happened with CBD; there are literally hundreds of infused topicals, tinctures and food products available for purchase. Without guidance from a health professional, consumers take matters into their own hands. But smart consumers should be asking these three questions:

Where is the hemp grown?

What’s the extraction method used?

Has the product been lab tested?

Having these answers at least gets you in the right ballpark when deciding what to buy.

CBD comes in various formats – gel caps, oils, balms, patches, and sprays. These can be taken by mouth, applied on the body, or vaped. The delivery method and dosage that’s best for you is a matter of trial and error. Seeking the advice of a health professional trained in cannabinoid medicine is a great way to get started on your CBD education journey. CBD may not be the holy grail, but when combined with other holistic lifestyle changes, it sure can make a big difference.

Laura Lagano, MS, RDN, CDN is an integrative clinical nutritionist and co-founder of the Holistic Cannabis Academy, an online medical cannabis education platform for health practitioners.   Pictured Laura (left) and Donna Shields, co-founders of HCA.

 

Visit Christina's Online Shop to see the available full spectrum CBD products !

Aloe Vera: A Healthy Option

When I was a child, my mom had aloe vera growing out in the garden.  If we scraped a knee or had an itchy rash she would break a leaf and rub it where it hurt.  Mom's touch and the natural aloe gel both made me feel better.  As a teen, young adult and mom I knew to have a bottle on hand to also cool any burned areas of my skin; usually from the sun's rays.

Aloe vera is still around today and many people probably still associate it with these more common uses.  However, I've learned recently there is more to the story of aloe.  Below is a list of other, perhaps surprising, ways aloe vera can be used.

• Aloe Vera has anti-inflammatory properties that can also help treat blemishes and acne.
• It softens dead skin cells , which helps reduce the fine lines and wrinkles of aging.
• Almost 8 million women suffer from interstitial cystitis (IC), a chronic bladder condition that can be extremely painful and debilitating. It is typically treated with one prescription medication that not only provides little relief to many, but also causes hair loss.  But, one study show that 92% of  patients experience significant relief of one or more symptoms with whole-leaf, freeze-dried oral aloe vera. In addition,  63-68% report substantial improvement in pelvic pain, urethral burning, and urgency and frequency of urination.
• A number of studies are also pointing to the value of aloe vera in helping control blood sugar, relieve diabetic nerve pain, and treat diabetic-related foot ulcers. A recent meta-analysis of eight randomized controlled trials involving 470 patients, for example, found that adults with prediabetes who took aloe vera supplements saw improvement in fasting plasma glucose, while those with Type 2 diabetes saw improvement in HbA1c levels, indicating blood glucose control over the previous two to three months.

One company, Desert Harvest,  has created concentrated aloe vera gel and other products to complement conventional treatment and care strategies for patients suffering from diabetes, interstitial cystitis, psoriasis and other conditions. Products include:

•  Aloe Vera Capsules, a whole-leaf, cold-processed, freeze-dried, highly concentrated, ‘super-strength’ aloe vera that can be used to help control blood sugar
• Releveum® Skin Repair Cream, classified as an over-the-counter drug by the FDA, which contains 4% lidocaine that offers instant pain relief for diabetic neuropathy and 96% aloe vera and other natural ingredients that help reduce inflammation and heal associated skin ulcers when used daily.
• Concentrated Aloe Vera Gele', providing skin relief for those allergic to lidocaine.

 

What other conditions does it treat?  Add a comment any include a link to any research findings.