Christina's Considerations

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.

Address Inflammatory Disease with Walnuts in Your Diet

Holiday entertaining is around the corner and every year we say we want to choose healthier options; but do we?  I have a bowl of  black walnuts from California sitting on my counter, a gift from a thoughtful young lady's family farm in Hollister, CA.  I consider them to be healthier options, but how exactly?

So, I asked Dr. Earl Mindell, a pharmacist and nutrition expert, for his thoughts on the how walnuts are healthy, and this is his thoughtful response...

"Here is the problem... the standard American diet provides 30 times more Omega-6 (the bad guys) than Omega-3 (the good guys.)  Walnuts are a rich source of Omega-3, and as found in a recent study published in the Journal of Nutrition, eating about 1/2 cup of walnuts a day can normalize the balance of Omega-3 to Omega-6.

The findings showed that people eating this amount of walnuts for six weeks had more bacteria associated with greater insulin sensitivity and lower inflammation.  Consider, most chronic diseases that are killing us are inflammatory, such as heart disease, high blood pressure, stroke, diabetes, Alzheimer's Disease and even some types of cancer.  Eating 1 1.2 ounces, or 45 grams, can lead to heart health from healthy cholesterol levels and antioxidants, which neutralizes the free radical oxygen molecules.  If these aren't normalized, this can lead to oxidative degenerative diseases.

Walnuts also help 

• people lose weight by increasing the satiety (feeling of being full) after just 3 days
• improve metabolic parameters i people with type 2 diabetes, by lowering fasting insulin levels

 

There are 95 research studies on walnuts, as well as 37 studies on walnuts and the immune system. For more on the research visit pubmed,gov."   

 

 

 

So, now we know.  It is time to find a few new ways of using walnuts in our diets and the people at Primavera Walnut are sharing a few ideas on Twitter and Facebook  

If I won the lottery...

I play the lottery when it gets exciting and consider it a little extra support for the schools.  This round of Mega Millions and Power Ball seems especially exciting, so it has got me thinking about what I should do if I won.  As a planner, it is only right to put it to "paper" and my blog is a great place.  Here goes!

First, I would whisk my family and I away for a family meeting somewhere quiet.  We always have family meetings when we need to gather input and make important decisions.  This would be no different.  My husband and I run a tight ship and we will make sure we are all on the same page. My oldest daughter (little mama) has dreamy world traveler eyes, so she can pick the place and make the arrangements.

In route, I'd reach out to my investment and tax advisors to let them know of my little secret; so they can enjoy the celebration with us and start preparing their own advice and planning.  They will need to help me find a lawyer to navigate some of the anticipated issues.

Then, it would come down to leveraging the money and my "must do" list below.

Around the house

• Schedule "the ladies" (who clean my house) to come once a week.  I'll be way to excited to do my part for a while; and then busy traveling.  Also, prepare for a special Christmas gift for each of them.
• Hire a contractor to coordinate getting some delayed maintenance completed; so my husband can transition from a "honey do" to a "honey pay"
• Pay off all outstanding mortgages/loans; so I can cut down on the amount of payments I have to make.
• Buy my husband a new truck; and he can have the big one instead of downsizing.

Donations/Giving Back

• My children's schools K-college
• My colleges: and those close to my heart
• Salvation Army - for their help across the community after the Painted Cave Fire
• Lotusland
• A few cities and towns close to my heart
• Carry some cash to reward acts of kindness and exceptional customer service wherever is is observed or felt
• Establish some way to support young or other deserving students who put themselves through college or trade schools
• Support national parks
• Nonprofits (who truly make a difference) upon some reflection and thought

For Fun

• Take my family (five of us) out to dinner to all of our favorite places whenever we feel like it; and not worry about whether we are eating out too often.
• Travel and take my young adult children with me when their work allows them to join me.  Also, bring my parents, sister, brother with me when it makes sense.
  • Places around the world that have always intrigued me
  • National Parks
  • Cities, towns, villages I miss; such as Short Pump, Buck Snort, Idaho Falls, Destin, Pass Christian, the AP, and more
  • Whenever and wherever I darn well feel like without having to ask for permission or request PTO!
• Throw a big party in Louisiana for my big Catholic family and closest friends.
• Take my friends out to dinner and let them know how much I appreciate them and the support, love and understanding they have demonstrated.

Serious stuff

• Invest and save for rainy days for my husband and I, children, parents, sister and brother, nieces and nephews.
• Invest in innovative businesses and organizations that aid and support individuals with mobility and other functional limitations; facilitating the living of more active and productive lives.
• Ensure safety, security and comfort of family; without enabling them.
• Continue to show my children that they are fortunate; and show them how others struggle, so they continue to appreciate what they have and work for what they want.
• Hire an IT professional to take my little blog to the next level with an updated look and feel and more engaging/dynamic interactions.  I've struggled to keep up with the evolution of technology while working, being a mom/wife and digital immigrant since 2005.  I could use a little help!

From there, I don't know.  I suspect there would be some additional family meetings around our dining room table, on the patio in front of a fire and in some far away places.  Being gifted with lottery winnings and distributing newly found wealth would be a process.  While I might become a newly minted one-percenter, I'd still be the 17 year old girl from New Orleans who wanted to "care" for people. My wealth would trickle out in support of those around me and with whom I come into contact.  I'd support small business, nonprofits, students and individuals (family or not) who are striving for success and growth.  What goes around, comes around... and around!

 

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!

 

 

 

 

Working While Receiving State and Federal Disability Benefits

Disability insurance is available at both the state and federal levels to assist workers who become disabled, and unable to work.  Learning the qualifications/disqualifications and self-advocating to ensure effective communications are occurring are two challenges many will experience.  Another, often stressful challenge, is trying to work, or testing your abilities, is also a challenge.  This is especially true for professionals and others not in typical full time employment relationships.

The workplace and work processes have evolved since 1956 when the Social Security Act was signed into law by President Dwight Eisenhower.  In addition, how we treat debilitating conditions, view disability and disabled has evolved.  Today, many individuals attempt to focus on their abilities; not their disabilities.  I suspect many, like me, want to work.  However, when we do, we risk losing all benefits.

If one can safely return to work and sustain their employment at their previous level, then it makes sense that they no longer are eligible for benefits.  But, what if they can only safely perform some tasks and not others.  Or, their treatment schedule is so disruptive, that qualifying for a "regular" position is no longer possible.  For example,  consider the person receiving Intravenous immunoglobulin (IVIG) treatments over four days every three weeks who's employment was terminated months prior to even receiving a diagnosis and treatment.  This person can do some work over time, but the way the laws are currently written, if you perform any work for more than approximately eight months, then you may be deemed to no longer qualify for benefits.

The impact of a black or white regulation, with little grey area or individualized conditions, is a demotivator for those receiving disability benefits to even try or experiment with work they might possibly perform.  Or, find even irregular employment. To do so, they risk losing all benefits.

So, why does this matter?  One reason is the cost of depression to society and individuals.  Research has shown that those with chronic conditions/illness and/or who are not actively engaged in some pursuit are at higher risk for depression.  Depression can slow or even stall improvements in a person's medical condition.  We know so much more about engaged patients, depression and overall health, but I suspect this hasn't worked its way into policy when it comes to disability benefits.  But, it should.

There is another reason.  That is the concept of use it or lose it.  If I have a reason to type or walk, I'll do it.  If I have a reason to analyze and exercise my mind in other ways, I'll do that too.  Productive work is one way to help those with functional limitations and disabilities to exercise and improve their abilities. Instead of supporting individuals who need help to be lifted up to leverage their abilities; current policy and the way it is routinely applied, motivate individuals to give up on their professional passions or attempt to only be partially disabled.  For many, this all by itself is depressing.

So, if the Social Security Administration is listening, I would love to see how we would change policy to allow some to be partially disabled.  I truly believe it would save healthcare costs, and slow the bleed of funds from the disability program.  I would even be willing to participate and help envision how this could work to benefit State/Federal disability programs, beneficiaries and taxpayers.  As long as I could avoid the weeks of my IVIG treatment and have my fatigue accommodated, I'm ready to help.  I still have a great deal to give and just wish I could find a channel to do so.

 

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.  

Book Review: Unspoken Truths about Marijuana

One risk to healthy children and families, as I've seen in my own circle of friends, has been marijuana use at a young age.  While some don't experience adverse symptoms, others seem to be more prone to troubles and the triggering of health and safety situations.  In addition, hospital ERs do get some number of patients; including new consistently heavy smokers, with cannabinoid hyperemesis - vomiting due to heavy marijuana use.

Dr. Antoine Kanamugire, MD took on the unpleasant, but real issues and effects in his recent book The 21 Unspoken Truths
about Marijuana.  My belief is that it is an excellent resource for anyone considering marijuana use.  Perhaps they won't experience any of the ugly, but at least they will be more informed and hopefully recognize adverse effects before dreams, goals and ambitions are crushed and/or their overall health is impacted. 

Topics covered include :

• Myths
• Your brain - especially among teens and young adults
• Pregnancy and breastfeeding
• Lung Cancer
• Addiction risk factors
• Who becomes addicted and who does not
• Understanding the gateway and when you are sliding into addiction
• Intellectual and cognitive impairment
• Social, family and work relationships
• Peer pressure
• Psychosis
• Suicide
• Car accidents
• ...and, the question of can marijuana kill you is explored!

The data, graphics and information provided in simple language make it easy for readers to understand identify the action needed.  In the end, it is up to each person to make our best choices for health and wellness... and avoid our high life from becoming real life.

 

 

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.

Neuromuscular Medicine and Disease

I found my way to a physician who specializes in neuromuscular disease, but have been focused on my treatment to give thought to exactly what the specialty does. I did, at least, recognize that neuromuscular relates to both the nervous and muscle systems.  This is a little out of character given my long career working in hospital administration, including a few roles a medical staff coordinator.

Several people on my Facebook groups see neurologists for their treatment and one person responded to a comment asking me what a neuromuscular specialist is/does exactly.  Hummm, I didn't have an answer, so I turned to Dr. Google once again and found a  great article on the role of neuromuscular medicine and physiatry in the management of neuromuscular disease.    It is written primarily for healthcare professionals, but has good information and insight for patients and their caregivers. It is worth reading in its entirety if you or someone you care for has a neuromuscular disease.... but here are some highlights.

The foundation of their care interventions are directed at: 

• health maintenance and proper monitoring of disease progression and complications
• provide anticipatory, preventive care and optimum management
• maximize health and functional capacities (mobility, transfer skills, upper limb function, self-care skills)
• perform medical monitoring and surveillance to inhibit and prevent complications (disuse weakness, skeletal deformities, bone health problems, respiratory/airway problems, cardiac insufficiency, dysrhythmias)
• promote access and full integration into the community in order to optimize quality of life

Neuromuscular Disease:

• hereditary and acquired diseases of the peripheral neuromuscular system
• includes those that affect anterior horn cells, peripheral nerves, neuromuscular junctions and muscle
• acquired include autoimmune, infectious metabolic, toxic or paraneoplastic (such as ALS, GBS or diabetic peripheral neuropathy)

Prevalence of Neuromuscular Conditions:  

• Estimated total prevalence of the most common neuromusculars disease in the US is 500,000.
• Add in all forms of acquired neuromuscular disease and the prevalence exceeds 4 million.

What are examples of the disease?

• Amyotropic Lateral Sclerosis (ALS)
• Mayasthenia Gravis
• Lambert Eaton Syndrome
• Botulism
• Guillain Barre Syndrome
• Diabetic Peripheral Neuropathy
• Duchenne Muscular Dystrophy

Impact of Neuromuscular Disease on Functional Activities: