What Is MS: Multiple Sclerosis Awareness

Photo Credit: Pixabay

 

Many of you know that I was recently diagnosed with the relapsing-remitting form of multiple sclerosis (MS). My diagnosis came after a life-threatening appearance of a demylenating lesion in my brain stem (specifically the pons region of my brain stem) in 1999. This was followed by more than ten years where I experienced a number of bizarre, seemingly unrelated symptoms.

Although I visited a number of neurologists and other physicians, all but one seemed to find my symptoms unrelated. Several times I was told unequivocally by neurologists that I did NOT have MS. Over those years, my husband and I moved several times, and I couldn’t any establish continuity with any doctor long enough to make sense of my history of dizziness, falling down, headaches, choking, foot cramps, finger tremors, hearing loss, nausea, and a changing gait.

Then in late 2014, I developed additional neurological symptoms and was ordered to undergo a brain biopsy of a new large lesion that had appeared in and around the area of my brain stem. The neurosurgeon was confident it was a glioma, considered to be an early form of cancer. The biopsy required a crainiotomy and resection (p. 8) , which was an additional challenge to my neurological system.

Why MS is Often Misdiagnosed
My situation is not unique. Many disorders share symptoms with MS, making diagnosis difficult. Those disorders include

Lupus: can cause muscle pain, joint swelling, fatigue, butterfly-shaped rash across the cheeks, and headaches
Lyme disease: fatigue, fever, headaches, and muscle and joint aches
Stroke: loss of vision; loss of feeling in the limbs, usually on one side of the body; difficulty walking; and difficulty speaking
Migraine: intense pain; throbbing; sensitivity to light, sounds, or smells; nausea and vomiting; blurred vision; and lightheadedness and fainting
Fibromyalgia: headaches, joint and muscle pain, numbness and tingling of extremities, memory problems, and fatigue
Conversion and psychogenic disorders: conditions in which psychological stress is converted into a physical problem — such as blindness or paralysis — for which no medical cause can be found
Sjogren’s disorder: dry eyes, dry mouth, fatigue, and musculoskeletal pain
Vasculitis: joint pain, blurred vision, and numbness, tingling, and weakness in the limbs
Myasthenia gravis: drooping eyelids, double vision, difficulty with walking, speaking, chewing, and swallowing
Sarcoidosis: including fatigue and decreased vision
Vitamin B-12 deficiency: fatigue, mental confusion, and numbness and tingling in the hands and feet
Acute disseminated encephalomyelitis (ADEM): fever, fatigue, headache, nausea, vomiting, vision loss, and difficulty walking
The National MS Society has created the following short video. It gives a simple explanation of what happens in a person’s body when they live with MS and helps us understand why the disease can be so difficult to diagnose, since MS influences every function of the brain, and therefore, the body.

The video helped me understand that because one of my largest lesions damaged the pons area of my brain, it makes sense that my breathing, swallowing, taste, sleeping, vision, hearing, balance, and walking have changed.

WHAT IS MS?

A Day in the Life of MS

dead-battery-1623377_960_720This morning my thermostat batteries died, so of course, I changed them.

No biggie, right? You’d think, but not for me. Not any more.

Ten steps from the living room couch to the thermostat to diagnose problem.
Eight steps to the drawer to get AA batteries.
Nine steps to the thermostat to try to put in new batteries.
Failed effort, due to blurred vision, weak fingers, and trembling legs.
Eight steps back to the drawer to retrieve a screwdriver for battery prying.
Eight hand-on-wall steps back to thermostat to pry with one end of the screwdriver and pound with the other as legs shake like my dryer on the spin cycle.
Eight wobbling steps back to drawer to return screwdriver, accompanied by muttered prayers.
Eight final wobbles back to couch, followed by plop-and-prayer for sleep.

At 8:30am, I’ve completed my first marathon for the day. There will be many more. A trip downstairs to do laundry, gripping the railing and leaning against the wall. Pulling myself back up the stairs carrying small loads of clothes I can manage.  Simple tasks I completed without thought by others exhaust me since being struck by multiple sclerosis (MS). Putting on pajamas or dressing  can seem insurmountable.

But not just for me–for many people who live with chronic illness.

Low Batteries: Fighting Fatigue

Medical experts report that it takes five times the effort for people with multiple sclerosis (MS) to accomplish the things healthy people can do. Put this into perspective by thinking how tired you’d be if you did five day’s work in one day every day for the rest of your life.

You can almost always assume someone with MS or other chronic illnesses are trying to beat back exhaustion. I’m in my pajamas by 6:00pm. I attend evening events very seldom. When I go to church on Sunday, I have a “down” day on Monday. I’m proud when I walk on the treadmill for five minutes. On “down” days I drive to my mailbox to conserve energy for more important things (hey, it’s a long driveway).

fatigue

The Pain of It All: Symptoms

MS symptoms vary widely. I people with MS can lose color in their vision. Their sight can also diminish in other ways. My vision has blurred, making it difficult for me to read and work on my computer, even with a 24″ monitor. Migraines can last for days and weeks. Debilitating neuropathy pain in legs, feet, and hands often escalates at night, along with  ongoing muscle spasms and cramping in legs, feet, and back.

About that Twitch: Neurological Problems

Many patients with MS find the path to diagnosis long and frustrating because symptoms can mimic so many other things: lupus, sarcoidosis, Lyme disease, stroke, and other illnesses. For this reason, other illnesses must be ruled out when making an MS diagnosis.

MS is a neurological disorder that causes the protective myelin covering over the nerves in the brain to deteriorate. The nerves become exposed, which causes lesions (tissue abnormalities), not tumors (cell clusters that grow). Brain lesions multiply over time, causing increasing disruption of brain and, therefore, body function.

My lesions attacked my brain stem. I’ve had two major attacks–the first in 1999 and a relapse in 2014. MS patients seldom return to the same threshold of health after a relapse. My relapses have affected my walking, balance, hearing, vision, swallowing, memory, resilience, and cognitive function.

For instance, I now work use a 24″ computer monitor. I must take breaks every hour to “rest” my brain.  I walk on the treadmill in 5 minute increments, which is my usual max time. I no longer work at my computer beyond lunchtime because of fatigue. I experience frequent and prolonged migraines. My legs and feet cramp continually. I take medication for neuropathy pain in my legs and feet. And like most MS patients, I’m always cold.

Takeaway: Eyes Wide Open

Suffering can bless us with a perspective on others’ pain. It can either bring us into community or isolate us; drive us to bitterness or build our awareness of the sorrow that surrounds us. Chronic illness can gift us with unique sensitivity to those who quietly suffer–not necessarily with illness.

Jesus saw the needs of those who stood at the edge of the crowd, who were unable to push to the front, who could only catch the edge of His robe, or who climbed into trees to see Him. They were all looking for someone who cared enough about them enough to reach out and help, maybe even love them.

Jesus touched unclean bodies. He used the power of His words, His hands, His presence, the hope in His eyes, His wisdom. You may be sick–but you can use your pain to touch someone else. A day in the life of your pain may have given you the gift of words, experiences, the touch of a hand on an arm, of prayers, quiet presence, hope, or encouragement needed by someone else. Are you willing to live with eyes wide open to give to others, even in your illness or pain?

Caring for a Sick Spouse

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For the past forty plus years of our marriage, my husband and I have taken turns being sick and having surgeries. Not long after I married, I came to the realization that my husband would be undergoing knee, ankle, and foot surgeries for the remainder of his life. Dan’s walking abilities would gradually become more and more impaired. This created a hope for us to fulfill certain dreams sooner than later.

This thought intensified when I became critically ill with an undiagnosed neurological disorder in my early forties. Dan became lovingly protective of my health in the ensuing years, especially after my symptoms progressed and I underwent brain surgery. I also became increasingly concerned about Dan’s walking. We often competed over household tasks–who would do which chores so the other wouldn’t have to, both of us secretly doing laundry or shopping before the other had the chance.

I’m not sure who’s done the most caregiving in our marriage, but I can tell you Dan’s done a great job caring for me. I know that when one spouse is caring for the other, it’s easy for caregiving to overtake other priorities in the marriage. Spousal caregiving is tough, and I think that success if found in the small things.

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  1. Find ways to enjoy each other. Focus on the things your loved one has always been interested in and loved. Read or listen to books about those things. Watch a TV show, movie, or series about them. Research a prominent person in that field. Or you might consider taking a fun online class. Complete a project (genealogy, writing, birdwatching, creating an e-book, or organizing family pictures, etc.
  2. Listen to music and recorded books. This doesn’t take time from your daily route and can also be enjoyable for your loved one. Check your local library for books on CD. Be sure to ask your loved one about their interests so you can come up with mutually chosen titles.
  3. Do things you like separately. Find a favorite spot in a local park, library, museum, or space nearby where you can slip away for refreshment. Spend time with friends at least once a week. Ask some from your family, church, support group, or community to give you the opportunity for respite.
  4. Create “islands” of respite each day. Step out of the house and look at the sky. Keep books in the bathroom and take short reading breaks. Ask friends to stop by and visit for an hour or two so you can walk around the black or take a drive, visit the park or library, a movie, or time to drive some place quiet and enjoy the solitude. Spend ten minutes in your garden (or your neighbor’s).  What refreshes you? Find ways to inject mini-burst of these things into your day.
  5. Find someone to confide in. This may be someone who has cared for their ill spouse or a compassionate, affirming friend. Caring for a spouse can stir feelings of anger and frustration, and husbands and wives can feel like they’re betraying their loved ones by sharing confidences and circumstances that can naturally result from the stress of caregiving.
  6. Call a friend or family member every day. You need connection to the world beyond the walls of your home. Take time to stay connected to close friends and family members. Ask about their lives, interests, and prayer needs. Whenever possible, use Skype or FaceTime. You need to see faces, and people need to lay their eyes on you.
  7. teamwork-294584_960_720Ask for help. You need help–regular breaks, physical, and emotional support. If your spouse has adult siblings, ask for their physical help or financial assistance to hire aides, respite workers, or to secure a respite facility on a scheduled basis. If they refuse, look for someone to assist in mediation–a pastor, counselor, or senior care specialist, or possibly even a lawyer. If you have adult children, ask them to help. Include your church or parish when you ask for assistance. Many churches are able to offer considerable help. And always consult county social workers and the Area Agency on Aging to see what services you qualify for. We were grateful to discover free respite care for our loved ones that allowed us getaway breaks a few times a year.

As much as possible (and it isn’t easy), try to compartmentalize spousal care from your personal time together. Try to preserve time for the two of you to simply enjoy one another. One of my most treasured memories is of watching the light in my mother’s eyes as my dad read his diaries to my mom during the years she lived with Alzheimer’s. Even in the debilitating shadow of Alzheimer’s, couples can share meaningful moments together.

PHOTO CREDIT: 9jaFlave

Documents Every Caregiver Needs

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Photo Credit: Unsplash, Helloquence

Most people become caregivers by virtue of a loved one’s health crisis or unexpected diagnosis—a phone call from caring friends that Dad’s behavior has changed, a tragic fall or accident, or a diagnosis of a life-impairing disease. Suddenly the world tilts, and you’re a caregiver. What will you need in order to carry out your loved one’s wishes and provide for their needs for the long-term? Your goals are to 1) keep them as comfortable as possible, and 2) to protect their assets for their enjoyment and care for as long as possible. Here are a few of the basic documents you will need to accomplish those goals.

 

POWER OF ATTORNEY

A power of attorney is a document by which people designate an agent to act on their behalf in financial or legal matters. This document makes it legally possible for you to conduct legal, financial, and business matters for your loved one. A durable power of attorney extends your designated authority in the event that your loved one becomes mentally incapable of conducting his or her own affairs.

 

MEDICAL POWER OF ATTORNEY

A medical power of attorney allows you to make health care decisions on behalf of your loved one. Everyone over the age of 17 should complete a medical power of attorney in order to state their desires, should a catastrophic event strike.

 

HIPPA AUTHORIZATION

The Health Information Portability and Accountability Act (HIPAA) keeps your health information and records private. Unless your loved one signs HIPPA authorization giving you access to speak to all of their treating medical provider (each medical provider has their own form), providers are legally prohibited to speak to you about your loved one’s medical condition, even if you are a relative. In some states, HIPPA authorization is not recognized unless the patient is unable to express their own wishes. Give copies of the HIPAA authorization form to health-care providers, and make sure you have additional copies on hand in case you must provide them.

 

SOCIAL SECURITY REPRESENTATIVE PAYEE

This is perhaps one of the best-kept and most vital secrets to be learned by caregivers of those who receive Social Security benefits and are unable to manage their finances. The Social Security Administration does not recognize Power of Attorney. Its own form and process for caregivers called Social Security Representative Payee. In order to speak to, negotiate with, or communicate about your loved one’s SS benefits (which often happens when they become incapacitated), you need to apply to become their SS Representative Payee. My family discovered this information in a crisis, which was unfortunate for us and caused a delay of SS payments for several months. For more information, go to https://www.ssa.gov/pubs/EN-05-10076.pdf

Have you found yourself unprepared as a caregiver when these documents were needed? We’d love to hear from you.

Tips for Easing the Life of Someone with Alzheimer’s

One Step at a TimeMost people recognize that Alzheimer’s disease causes memory loss. However, it may be more difficult to understand that Alzheimer’s also deeply influences one’s emotions, mental processing, and physical capabilities. As our loved one progresses through the disease, we and other family members and caregivers must begin to focus on helping our loved one live in the moment, because they lose the capability to reason and live beyond the immediate.

Alzheimer’s experts offer a number of recommendations for how to ease the life of someone living with Alzheimer’s or other forms of dementia. These tips are intended to lower agitation, enhance focus and communication, and give your loved one a greater sense of peace and safety. Alzheimer’s can be a terrifying disease; patients live without an awareness of where they are, why they are in a strange place, and who the people around them are.

  1. Keep people with Alzheimer’s active and engaged. Cognitive and sensory stimulation is important for them. Check to see if your community offers adult day care for those with dementia programming. Involve them in simple family chores. Create a small indoor garden for them to tend, or enroll them in a community exercise program for those with dementia.
  2. Focus on process and not results. If your parent does something incorrectly, don’t correct them. If your father begins eating with his fingers, let him. People with dementia need to feel that they are accepted and loved without judgment, and part of a group. If Mom folded the laundry wrong, thank her and do it over later when she can’t see you.
  3. Let your loved one feel useful. Depression often occurs in the early stages of Alzheimer’s. Your loved one is aware of their illness and feels as if they are no longer useful. Allow them to contribute—cooking, simple home repair jobs, helping with shopping or laundry, emptying the dishwasher, etc.
  4. Never argue. Always agree and meet them where they are. Join them in the moment, in their reality, when you respond to their difficult questions. For instance, “I haven’t seen Uncle George (who has been deceased for 7 years), but why don’t we get a snack and sit here for a while and watch for him?” Rather than being a lie, this kind of answer is like responding to a three year-old with an age-appropriate reply. Adults with Alzheimer’s lose adult reasoning and slip away into a hazy world stripped of the ability to see reality. Telling them the “truth” is often cruel and serves no purpose.
  5. Give simple instructions. Offer no more than three options, and be sure than any of the options would be okay. If you have a preferred option, list it last because the last option is the most likely to be chosen.
  6. Never ask, “Do you remember?” Always tell your loved one who you are and what your name is. If you reminisce with them, allow them to contribute information, but don’t ask them questions they may not have answers to. Asking questions only provides an opportunity for frustration. If you want to know what they’d like to have for lunch for instance, offer two or three options at a time.
  7. Avoid things that could be upsetting. For many dementia patients, this means loud crowds, like basketball games, parties, or receptions. For my mother it also meant being in large crowds. Many dementia patients also deal with Sundowning Syndrome, which means that agitation worsens in the late afternoon. My mom’s behavior quickly degraded after 4:00 in the afternoon, and she often showed signs of aggression. The world is a confusing, frightening place for people with dementia, and anger and aggression are natural responses. Imagine not knowing where you are, why you’re there, what you should do, who you’re with, or what’s going to happen to you. Then add physical discomfort.
  8. Learn what soothes. This might be music (hymns, vintage music, boogie, etc.), looking at pictures (children’s faces are often favorites), rocking or snuggling a life-like doll, old TV shows like I Love Lucy, gardening, etc.

It’s also helpful to learn about any events from your loved one’s past: Were they abused? Attacked by a pet or animal? Confined or incarcerated? Suffer prolonged illness? Lose a parent or sibling in childhood? Experience a near drowning? These events could become triggers for fear as their illness progresses.

Our goal as caregivers is to soothe the suffering of Alzheimer’s and dementia. This means doing all we can reasonably do to safeguard our loved ones’ physical, mental, and emotional well-being and to love them as we would want to be loved ourselves.

What tips can you share with us from your caregiving experience?

Immanuel: The God of Hopes and Fears

2013-01-15_16-55-32_280               Photo Credit: Shelly Beach

For many of us, 2016 was a challenging year. 

Maybe “challenging” is the PC word you’d use if someone at church asked you about the year you had. In the privacy of your self-talk you might choose another word.

Heartbreaking.

Shattering.

Crappy, or other similar adjectives.

You may have lost a loved one. Been blindsided by abandonment. Been kicked to the curb in the face of injustice or self-interest, in spite of your faithful service. Or faced a dreaded diagnosis-yours or a loved one’s.

We look forward to a new year with hope that life will be better. Why?

Our hopes and fears are almost always intertwined. 

My first brain episode almost took my life. Doctors feared they might not be able to turn around the course of my rapid decline. My survival was in question, and it took over sixteen years for doctors to determine a diagnosis. During the first five years following that episode, I feared every symptom that struck my body would return me to a hospital bed and a dreaded diagnosis. I hoped and prayed I would remain healthy and thanked God for the measure of health and strength that returned to me. Many of my hopes and fears were tied to my health for years.

This year as I caught the phrase, “hope and fears of all the years of all the years are met in Thee tonight,” I’ve listened to the words of “O Little Town of Bethlehem” with new insight.

The hopes and fears of all humanity throughout history were met in Jesus’ birth. He lived among us, defeated death, and rose again. 

From the moment of His conception, He shared in our human experiences–our pain and suffering, sickness, heartbreak, disappointment, abandonment, hopes, and fears. He took the punishment we deserved to the grave so we could live with hope, free from fear of sin’s punishment and death. We all sin and fall short of God’s glory; we all demand our own way like the selfish rebels we are–yet He loves us so deeply we could never comprehend it.

Because of Jesus, I can look into my future without fear–no matter my diagnosis, income, feelings, or any human circumstances, because He is the source of all hope that has ever or ever will exist and the answer to every fear that has echoed through history.

IMMANUEL–God with us!

 

Tips for Long Distance Caregiving

A geriatrician holds the hand of an elderly woman with arthritis.

Family caregiving from a distance is a challenge for millions of Americans, and the numbers are growing with our aging population. Living far from a sick loved can make providing care difficult. These difficulties extend to a caregiver’s family, personal life, work, and long-term career.

According to caregiving.org.,

  • approximately 25% of long distance caregivers are the only or primary caregiver for their loved one.
  • almost half report that spend one full day a week managing care.
  • nearly 80% of these caregivers were working full or part-time.
  • long-distance caregivers spend an average of $392 per month on travel and total out-of- pocket expenses.
  • those who live between 1 and 3 hours away from the care recipient spent an average of $386 per month on travel and direct expenses for items needed by the care recipient; those who live more than 3 hours away spent an average of $674 per month.

Despite the challenges, only two options exist when your loved one lives far from you: 1) hire a professional to oversee their care, or 2) oversee their care yourself, with the help of a support system. Option #1 will involve a cost of $100 to $200 per hour that is not covered my Medicare. Aging life care professionals (aginglifecare.org) are often referred by physicians. They provide medical and psychological assessment, set up, and oversee care.

If finances make it necessary for you to oversee care yourself, consider the following suggestions:

Determine how much help your loved one needs. Family won’t always see eye-to-eye on this issue, and it may be helpful to get an assessment from a medical professional, such as your loved one’s doctor, or an agency that works with the elderly population in your community.

Assemble a team. Begin with people who come in contact with your loved one regularly: they’re a neighbor, see your loved one at church, go out to meals or run errands with them regularly, etc. Ask them to be attentive to any changes in behavior, appearance, activity level, mood, and tell them you’ll be calling on a regular basis to check on Mom, Dad, or Auntie. Be sure to explain your goal to take the best possible care of your loved one from a distance and your frustration with not being able to be there personally to assist.

Ask them if they might also be willing to assist occasionally with household tasks, errands, or driving. Then add to that list with names of others they recommend who may be able to help–children and grandchildren of your loved one’s friends, people from their church, community groups, etc.

Make a list of people who offer services that might be needed. Gather phone numbers for neighborhood kids who can mow lawns, shovel snow, clean gutters, for handymen, plumbers, electricians, etc.

Compile resources.  Most communities offer a range of free or subsidized services that can help seniors with basic needs such as home delivered meals, transportation, senior companion services and more. Contact the Area Agency on Aging near your loved one for more information. Find out what grocery stores in the area deliver. Call churches and inquire about senior ministries.

Hire help. Professional caregivers can be an enormous resource, providing as much social and emotional benefit to our loved one as they do housekeeping, food preparation, and personal care. Homecare aides charge between $12-$25. Be sure to do background checks and/or work through reputable agencies.

Use technology. Arrange for direct deposit of checks, automatic payment of utilities and routine bills, and online banking (consider having yourself placed on the account. Teach your loved one how to Skype or FaceTime, or have someone assist them.

Consider additional technologies such as motion sensors (like Silver Mother – sen. se/silvermother) and video cameras (nest.com/camera) that can help you make sure your loved one is moving around the house normally; computerized pillboxes (medminder. com) that will notify you if they forget to take their medication; simplified computer tablets (grandpad.net) that provide important face-to-face video calls; and a variety of websites that can help you coordinate care (lotsahelpinghands. com) and medical information (reunioncare.com) with other family members.

For more tips, call the National Institute on Aging at 800-222-2225 and order their free booklet “Long-Distance Caregiving: Twenty Questions and Answers.”