Month: <span>October 2007</span>

When someone asks you if you want the good news or the bad news first, which do you choose? I prefer the bad news first because then the good news sounds even better. Of course, some days you only get the bad news.

Yesterday, after her neurologist conducted an EMG on her leg, she had only bad news. (An EMG is a test with needles and electricity designed to make mad scientists drool with envy.) The doctor wrote prescriptions for a wheelchair, an MRI of my wife’s lower back, and a brace for her right foot. She told her to get hand controls on her vehicle. “It will not get better. It will grow worse.” Bad news.

What do you do with bad news? There possible responses are too numerous to list, but I’ll share the way I categorize them. You have two basic options. You can 1) whine, complain and choose denial or 2) you accept reality, take care of the problem and get on with life. The first option only enhances the misery of bad news and it explains itself. I’ll not comment further on it.

Accepting reality, taking care of the problem it presents and getting on with life works best. And this really involves three separate steps.

Accept Reality 

One cannot live an authentic life without accepting the reality of his or her existence. My wife is good at this. She cried in the doctor’s office because she understands what the doctor’s prognosis means. One cannot accept reality without being confronted by facts that generate powerful emotions. Loss of ability causes grief. Unlike denial, which is a mind-game one plays to avoid reality, accepting reality can leave you with raw emotions abraded by hard facts.

Take Care of Problems

The second step is to take care of the problems reality presents. Do something to make things better!

One of my roles in our relationship is to do the research and narrow options. Last night I found a company in Michigan that manufactures a hand control we’re going to explore. I called the firm today and chatted with the staff, got 4 phone numbers of authorized installers within 100 miles of where we live and then I started calling them. I know what the hardware and installation will cost and how many hours of training three of the four installers provide. (Important note: The prices vary enough among the 4 authorized installers that it was well worth my time getting a list of installers instead of using the nearest.)

In addition, I called the Office of Motor Vehicles and learned my wife will need a new driver’s license and must take a driving test in the vehicle after the hand controls have been installed. After that she will be restricted to driving vehicles with hand controls. I contacted my insurance agent who is checking with the underwriter to find out if our auto insurance premiums will change.

We explored web sites of wheelchair manufacturers and, frankly, I’m overwhelmed at the different models. I think she’ll want a light weight, folding chair. However, I’ve not found what I’m looking for: a wheelchair super store. I want to find a huge wheelchair store where we can go and she can spend hours picking out the chair that just right for her from a couple hundred models.

I contacted our health insurance company and learned they’ll pay a good bit toward the cost of a nice wheelchair after a $300 deductible is met. They don’t pay for hand controls, though.

While I explored the hardware options, my wife scheduled an MRI of her lower back.

When you get bad news, do what you must do to accommodate it. Only then can you take the third step and get on with life.

Get On with Life!

My wife has already started talking about how much easier life will be in terms of transportation and how nice it will be to head to the mall by herself or with our girls. Her philosophy is, “yes, I got bad news, but we’ll deal with and enjoy the good aspects of life.” And though she was sad about reality, instead of mully-grubbing at home last night, she went out with a good friend to see the musical, “Stomp!” (Thanks, Christy!).

Caregiver Tip: I think I remember reading in a work by Victor Frankl that one’s attitude is the only thing that cannot be taken away. Everyone chooses what they do with bad news. How one responds to bad news either traps you in a molasses of misery or empowers you to get on with life. I recommend accepting reality, taking care of the problems life presents and getting on with life.

MS Caregiving

There is evil in the world. Those who take advantage of persons with Multiple Sclerosis and other diseases should receive a special punishment. At the very minimum, the pendulum of justice that swings slowly through the universe should whack them in the back of the head as it passes by.

I had intended to write about the positive effects a good pet can have (I’ll do it later) until I came across a web site that makes me angry. I’m angered because the site promotes an incredible form of quackery. It is so outrageous that it’s not allowed in the U.S.

In a nutshell, I’ve learned one can travel to a clinic in Mexico to receive electrical jolts designed to chase worms out of the brain. In addition to Multiple Sclerosis, the “doctor” uses the technique to treat terminal cancer patients and those with a number of other diseases.

As a rational person, you must ask yourself, “How does this person stay in business?

One would think a lack of clients would end the practice. Or perhaps, a regulatory agency might step in and shut the place down. Apparently, neither have ended this practice. And the quack-technique was developed 17 years ago!

So how does a place like that stay in business for 17 years?

I believe the practice continues for several reasons. Among the reasons are irrational thinking or ignorance, indomitable hope in people who want to be well, and desperation in those for whom a disease is causing continuous misery. In the case of each of these reasons for which a person might try the “treatment”, the person who administers the daily series of electrical shocks is taking advantage of the desire for health and the absence of misery.

If all one needed to cure MS was to rid the brain of worms, a good systemic anthelmintic (or deworming medicine) would likely do the trick.

It’s difficult to wait for a cure. People who commit medical fraud against those with chronic or terminal diseases know this and use it to their advantage.

Caregiver Tip: Be very careful. If you are tempted to arrange an ‘alternative’ treatment for the person for whom you care, always discuss it first with the person’s neurologist and get his or her opinion. If you have a hard time convincing a neurologist that you wish to take your loved one to Mexico to rid the brain of worms, take it that the treatment is wrong for your loved one. It’s just wrong.

Quackery

I took a flu shot earlier this week. Afterwards, my youngest daughter and I were talking about influenza, how it spreads and why vaccinations are important. She was uncharacteristically silent for a few moments after we finished the flu conversation. Then she asked me the question I’ve dreaded, “Daddy, will I get MS when I grow up?

I’ve dreaded the question not because it’s a difficult subject to discuss. We’ve talked about it before. I’m open with my daughters and tell them as much as they’re able to comprehend. I believe having information before one needs it makes life easier. During the years of my wife’s MS, she and I have both made sure they know one doesn’t “catch MS like someone catches a cold.” Talking about MS and heredity is easy.

But I’ve dreaded this day.

I’ve dreaded the day when she would ask the question of her own accord because it means she is worrying about MS for herself. As we mature we lose a little innocence day by day about the world around us. The same thing happens when a child grows up with a family member who has a chronic disease. One loses innocence through exposure.

I wish she were still MS-innocent. But she’s not. Fortunately, she’s not a worrier.

The statistics are available and easy to report. According to The Multiple Sclerosis Gateway (created by Bayer Schering Pharma), “Children where one parent has MS have about a 3% risk of developing MS later in life.” The risk is 20-40% greater than the risk for the general population who have no parents with MS. On the bright side, that means there’s a 97% chance my daughters will never have the disease.

Stats are easy to report. What isn’t easy is the small dread that will always be a part of her life. Even if she doesn’t spend time worrying about it, it’s there hiding in the dark of negative possibilities. It’s something I think of everyday for both my daughters.

How did I respond to her question?

“You don’t catch MS like you do a cold when someone sneezes on you. You know you won’t get it from hugging or kissing Mommy. It’s not like that. I can’t say you’ll never have MS, but I can say it’s something you don’t need to worry about. The chances are so small. There’s a very tiny possibility but it’s certainly not probable. The chances are very great that you never will.”

Do you worry about me getting MS?

“Yes. I do at times. But not nearly as much as I worry about other things all the time.”

“Like what?”

“I worry about things like how you’ll do on your math test next week. I worry if you’re ever going to clean your room. I worry if you will be a good driver when you’re older. I worry about those things a lot more than I worry about you or your sister getting MS.”

“I’ll be a good driver.”

“Yeah, I know, but will you ever clean your room?

I also know that she and I will have this conversation again the next time she becomes concerned about whether she’ll develop Multiple Sclerosis.

Caregiver Tip: Children who have family members with MS will wonder if they will get the disease. Be honest with children in a way that normalizes their concerns without giving them reason to worry. How to be honest while minimizing worry is something each parent must determine based on their knowledge of their child, his or her personality, and the child’s tendency to worry.

Practical Tips

A couple of years ago I heard from someone I hadn’t seen in a long time. She had heard about my wife’s MS and had something for me. I don’t remember exactly what it was she was selling, but she assured me it cured MS. And that it was good for a lot of other things. I thanked her for her concern.

There is no cure for Multiple Sclerosis. There’s no magic mixture, no concoction, no gadget, no lotion, no bee sting, no poison, no gas, no deer antler velvet, no chemical, no diet and no organ removal that will cure MS. In fact, MS patients have been killed while participating in false cures.

Be wary of MS “cures”. Every few years, the International Federation of Multiple Sclerosis Societies’ Therapeutic Claims Committee analyzes more than 100 alleged “cures” and publishes the results in “Therapeutic Claims in Multiple Sclerosis”. No cure is known.

What are available are medications which modify the disease process, treat exacerbations and manage MS symptoms. Provided under the care of a neurologist or a physician who specializes in the treatment of MS and used in combination, these medications can enhance the quality of an MS patient’s life.

What do you do if a friend tells you of a new “cure” or you read about a weird-science treatment and are tempted to try it? First, avoid getting excited. You’ll be disappointed. Second, talk to your doctor about what you’ve heard or read. Third, visit Quackwatch and read Be Wary of Multiple Sclerosis ‘Cures’.

Caregiver Tip: Quackery kills. The desire for a cure can lead one to false hopes. Avoid Multiple Sclerosis Quackery and follow the treatment regimen prescribed by a neurologist or physician who specializes in MS.

MS Treatment

The National Multiple Sclerosis Society offers an excellent online brochure titled, “Fatigue: What You Should Know – A Guide for People with Multiple Sclerosis”. The introduction explains MS-related fatigue, the but the best part is the “causes and Treatments” section. It offers treatment options for breathing and movement problems as well as a list of self-help energy boosters.

There’s a section, too, about the Americans with Disabilities Act (ADA) which became U.S. law in 1990. The brochure explains the concept of “reasonable accommodations” which the law requireis of businesses that have at least 15 employees.

Back to the list of treatment options and self-help boosters. What if the person for whom you care is already doing everything on the lists to counteract MS-related fatigue but still he or she is fatigued? That’s MS. One caution jumped out at me: Pay special attention to your MS after an episode of unusual fatigue. If your other MS symptoms seem to be getting worse, let your doctor know.

Caregiver Tip: Learn all you can about MS-related fatigue because it is the most common symptom of MS. 75-95% of MS patients have fatigue and more than half say it’s one of their worst problems and one of the major reasons for unemployment.

MS Caregiving

It’s Sunday. Our youngest daughter’s choir sang this morning. My wife and I sat on the back pew so we could make an early exit after hearing the children’s choir. My wife’s ears were stuffed with cotton because of her migraine. We skipped out early so she could find a cold, dark place to tough out the migraine. My wife is an incredible Mom.

I don’t know how to prove or disprove it, but I wonder if some of her migraines may be an indication of demyelination or myelin being damaged. Unfortunately, even if one knew demyelination were actively occurring there’s little that can be done to stop it. If one could stop it, I suppose we’d have to call that a cure?

And here’s what I wonder about a “cure”. If a cure is developed for MS, it would probably only mean the disease would be stopped. A whole different issue is then presented. Once the disease is halted, how does one replace myelin around demyelineated neurons? And, if one can “re-myelinate” a neuron, will the old neuron start sparking again?

It seems to me that curing a person of Multiple Sclerosis will require multiple cures; halting the disease and also restoring lost function to scarred nerve cells.

MS Treatment

Online Caregiving Resource

While searching for a solution to my wife’s driving difficulties I came across NMEDA.org. It’s the website of The National Mobility Equipment Dealers Association.

From the website: “NMEDA is a non-profit trade association of mobility equipment dealers, driver rehabilitation specialists, and other professionals dedicated to broadening the opportunities for people with disabilities to drive or be transported in vehicles modified with mobility equipment. All members work together to improve transportation options of people with disabilities.”

The website is a great resource for you if you’re considering a modified vehicle. The site’s Dealer Directory offers links to websites of companies which modify vehicles

Online Caregiving Resource

My wife’s right leg is not cooperating with her brain the way it should.¬† A podiatrist’s exam and x-rays ruled out any damage or disorder of the foot. Her foot and ankle are fine. But she’s not able to press the accelerator and brake with enough force to drive safely. Fortunately, she doesn’t like to drive and is good about letting me know when she shouldn’t be driving.

She wakes with numb tingling and little “command” of her leg’s behavior. I command my dog, Einstein, “Get down out of my chair.” He follows my command and hops to the floor. In the morning she commands her leg, “Move to the floor.” It responds, “yeah, right.” This recalcitrant behavior comes and goes but the current trend is not good.

I searched the ‘net for a solution.

I was surprised by all the hardware one can bolt onto a car or truck to make it useful to one who cannot use their right foot on the accelerator and brake. To summarize my discoveries, I found left foot accelerators which allow one to drive without requiring the use of the right foot.

The left foot accelerator mounts on the floor near the original brake and accelerator. One end of a heavy rod attaches to the bottom of the left hand accelerator and stretches beneath the brake pedal. At the right end of the rod is a paddle that presses against the original accelerator when the left hand accelerator is pressed.

That’s the basic design and (in terms of engineering) it looks like it would work well. Those I’ve reviewed look sturdy and have many bolt holes to use when fastening to the floorboard.

But I see a problem. So much of driving is based upon habitual behavior. Unless we’re learning to drive, we rarely wonder, “Which one of the pedals is the brake?” While not truly an instinct, pressing the brake and accelerator seem instinctive. We don’t think about them. And when we need to brake quickly, we automatically mash the brake peddle.

If the accelerator is on the opposite side of the brake after we install a left hand accelerator, how long does it take for the left leg and foot to brake and accelerate with the “instinctive” behavior? The device seems to me like it could be dangerous. It’s easy to imagine someone smashing the left hand accelerator to the floor instead of the brake in an emergency requiring instinctive driving behavior. Instead of stopping, they would actually speed up!

After all, the brake is usually on the left.¬† We’ll think about this some more.

Practical Tips

If you pay too much attention to the news you will soon develop a whop-sided view of reality. It won’t be your fault, but it will happen nonetheless.

Here’s why: Most of the news on TV and in newspapers is about unpleasantness, trouble, strife and evil. One can quickly become overwhelmed by the disasters, crimes, wars, corporate greed, doomed world economy and the other bad stuff the directors of main stream media think should receive our attention.

While knowing about these things is important, hearing about them over and over can wear one down. According to Henry David Thoreau (Why is he always called by his full name? Can’t you hear his Momma, “Henry … David … Thoreau, you get yourself in here!”) …

Anyway, according to Henry, “To a philosopher all news, as it is called, is gossip.” In other words, once you’ve heard one example of a bad thing, you’ve heard them all.

Maybe it’s a symptom of a negative society that we don’t notice there’s just as much good stuff going on in the world! Unfortunately, it doesn’t receive national or world attention. In fact, the world is full of good people who do good things.

Thank the kind people who do good things!

One I want to thank is Harold Holmes of Lincoln Beach Software. We’ve never met in person, but have swapped emails for years. In mid-2005 he mentioned in a newsgroup we frequent that he was raising money to help find a cure for MS by riding in the 2005 MS150 bike ride.

I thanked him in a private email and mentioned that what he was doing is special in my world because my wife has MS. He rode with her name on his jersey. This year, Harold has just completed another MS150. Again, Harold, thanks!

If you’d like to, read Harold’s BLOG of his inaugural MS150 ride.

Find someone like Harold and say, “Thanks!”

Caregiver Tip: Notice all the good people doing good things and thank a few of them. It will help you feel more hopeful and will give you a nicer view of reality.

Practical Tips