Month: <span>November 2007</span>

Shopping for a wheelchair is not like buying a new car.

I think my wife and I had psyched ourselves up about wheelchair shopping. Personally, I expected we would walk into a store and find rows of wheelchairs all shined up and waiting for a test spin around the room. It wasn’t to be.

My wife’s neurologist gave her prescriptions for a wheelchair and hand controls for her minivan following the last EMG performed a couple of weeks ago. We’ve both searched the Internet since then looking for all we can find about wheelchairs and hand controls. While buying a wheelchair is going to be an easier process than getting hand controls and a new drivers license, today was a disappointment.

The first store we visited had none out for display. A friendly lady went into a back room and returned pushing a flat black, 53 pound, folding behemoth. When asked about a lighter chair, she replied, “this is the lightest we carry.” She referred us to another medical supply store. We hopped in the minivan and found it.

The lady behind the desk in the second store seemed a little grumpy about answering questions until she learned my wife had a prescription for the wheelchair. Dollar signs flashed in her eyes. She immediately asked for our insurance information.

Instead of providing it, my wife explained we were shopping and asked if she could actually see some chairs. The desk-lady then asked a man behind the counter to go get one out of the back. He, too, returned with a black behemoth.

“It’s the smallest chair we have except for transport chairs,” he offered.

He explained that transport chairs must be pushed. They aren’t self-propelled. “But they are lighter,” he explained.

We could not find a wheelchair store designed for individual consumers. The stores cater to the hospital/nursing home market. The 50 pound chairs used in hospitals and nursing homes are solid and long-lasting, but they’re just too big for my wife to manage by herself.

We’re looking for what the industry calls an “ultra lightweight” folding model that will weigh about 20 pounds.  Also, a friend of mine who works as a Director of Nursing shared with me that the biggest factor in how comfortable a wheelchair is for a passenger is determined by the quality of the seat cushion. Another friend recommends solid tires instead of air-filled because the solid tires roll more easily.

Unless we get lucky, I imagine we’ll order the chair from an online dealer and cross our fingers that it will be just right for my wife. Unfortunately, most of the online dealers refuse returns except for those damaged in shipping.

Here’s my dream wheelchair shopping experience, (though I’m sure the market for personal wheelchairs is too small for this to work out for the dealer): it would be great to find a wheelchair store that has 50 or 60 different models on the floor so one can try them out.

I’d like to see how easily wheelchair A folds and unfolds, how rough wheelchair C rides compared to wheelchair B. Does wheelchair D look better in the black finish or in fire engine red? Can I get replacement parts for wheelchair E or must I send it in for repairs? What about accessories? “Can we get that model with detachable handles?” You get the idea.

Wheelchair shopping is not at all like I expected.

Caregiver Tip: Avoid psyching yourself up when you go shopping for a wheelchair. You’ll be disappointed. It’s not like buying a new car.

Practical Tips

If you care for a spouse or other family member with MS you already understand the impact medical expenses can have on your family budget. The financial cost of a chronic disease like Multiple Sclerosis is high and the financial drain is constant.

I was born in the early 60’s. I went to the ER while in college and left with 6 stitches above my eye. I had a physical checkup last year. One-time medical events like these generate one-time medical expenses.

In fact, anytime a healthy person receives medical care, it’s typically a one-time event with expenses that end after the procedure is paid for and the medicine is purchased. Even to have an appendix removed, there’s an end to the expenses after the surgeon, anesthetist, lab, facility and drug fees are paid.

While one time medical events can certainly whack your budget, they do it one time. You might not like it, but when it’s over, it is over.

MS is not like that. Not at all.

Multiple Sclerosis doesn’t give you the pleasure of making a final payment and writing, “paid in full” on the check’s memo line. MS is chronic and there is no cure. From the beginning, even before the diagnosis is made, the expenses begin adding up. MRIs are expensive, spinal taps aren’t cheap, co-pays for regular neurological check ups accumulate, and the cost of MS medications is unreal. In short, it would be easy to spend more than $20,000 a year on routine MS care.

If you’re an MS caregiver, here’s a sobering bit of news: almost half of U.S. bankruptcies are related to medical expenses.

A 2005 study led by Dr. David Himmelstein, an associate professor of medicine at Harvard Medical School, found that half of U.S. bankruptcies are caused by soaring medical bills. And bankruptcy specialists reported the study’s numbers seem valid.

George Cauthen, a lawyer at the Columbia-based law firm of Nelson Mullins Riley & Scarborough LLP, reported that he had reviewed every bankruptcy petition filed in South Carolina between 1982 and 1989. Medical bills accounted, “roughly, for about a third of all individual filings in South Carolina.” (Divorce accounted for another third.) And notice, this was in the 80’s before medical expenses began increasing at multiples of the national inflation rate.

Financial Thoughts for Caregivers

Given the sobering news about MS-related medical expenses and their impact on one’s financial life, what can one do? Here are a few tips:

1. Pay attention to your finances! Ignorance is not bliss when it comes to financial matters.

2. Save for a Rainy Day. You never know when you’ll need to access your emergency fund so you should take every opportunity to add to it.

3. Forget about the Joneses. It’s hard enough to keep up with all the details required to be a good caregiver. Give up on keeping up with the Joneses.

4. Pay down debt. This is almost an un-American concept, but in spite of what political leaders say about our “ownership society” and the recent history of loose lending, if you owe money for something, you don’t really own it.

5. Prioritize your expenditures. Most people make their house/rent payment, utility, savings and insurance payments first. You must have a place to live. Next, take care of food, medical and transportation expenses. Give to others. Finally, take care of everything else.

6. Economize. For example, if you love books, use your public library. In addition to books, most public libraries have a broad collection of movies on DVDs which you can borrow for free … just like books.

7. Ask for cash discounts when you make appointments for medical care. You might be surprised how much the cost of medical can be discounted for cash.

Caregiver Tip: MS is an expensive disease. Pay close attention to your financial situation and act with financial smarts.

Practical Tips

The business office of our local hospital volunteered that they offer a 20% cash discount for MRIs. (I did not ask, but I imagine it is available for other procedures, too.) The cash discount doesn’t surprise me. The 20% certainly does, though.

Simply stated, if one pays for an MRI at the time the work is done it costs 20% less than if one pays it out over time. That’s really nice. A 20% cash discount is a big discount. You won’t get that large a discount from many businesses.

In fact, from a management perspective 20% is a huge discount! (I know these financial matters are an odd topic for a blog written for MS caregivers. Follow me a bit, though, and I’ll come back to an important tip for MS caregivers. A good book for those who would like information about the financial formulas used to calculate a cash back discount is, “Working Capital Management: Strategies and Techniques”.)

Cash discounts are usually offered for one of three reasons; to attract customers away from other businesses (not an issue in our small town where the local hospital holds a monopoly on many services), to save a few dollars (if the cash discount is less than the amount paid to a financing firm), or to help a hurting cash flow problem. In any of these cases, 20% is a huge discount. That amount does not make financial sense when viewed from a classic cash management perspective, but … I don’t know about the hospital’s business. It must make sense to management if they’re doing it.

Like me, you may not have considered asking for a cash discount for medical services. I was surprised, but now realize I shouldn’t have been. Healthcare is a business like any other.

Caregiver Tip: Medicine seems to become more and more like any commodity business as time passes. Therefore, it makes good sense to ask for a cash discount whenever you purchase medical services. The worst that can happen is that you may be told, “I’m sorry, we don’t.”

However, if they do, you can save a good bit of money … especially at my local hospital.

Health Insurance Coverage

Use the FDA’s MedWatch for the Latest Drug Safety Information. If a medication you take requires additional warnings, you can learn about it on this web site of the U.S. Food and Drug Administration.

MedWatch is the FDA’s web site for reporting current medication safety information about drugs and medical products which are regulated by the U.S. Food and Drug Administration. The “What’s New” column on the left side of the home page is where the news is posted as it becomes available. You can subscribe to receive safety alerts by email.

On 10/24/2007 the FDA and Cephalon (manufacturer of Provigil) notified healthcare professionals of an updated WARNINGS section of the prescribing information for the drug. According to the posting,

“Physicians should instruct their patients to immediately discontinue the use of Provigil and contact them if a rash or other hypersensitivity reaction occurs. Healthcare professionals and consumers should also be aware that Provigil is not approved for use in pediatric patients for any indication. In addition, psychiatric adverse experiences (including anxiety, mania, hallucinations, and suicidal ideation) have been reported in patients treated with Provigil. Caution should be exercised when Provigil is given to patients with a history of psychosis, depression, or mania.”

Obviously, this is good information to know. Other than the specific side effects, it means Provigil is like any medication. One must balance the side effects (and potential side effects) against the good the medication does. The information about these additional side effects serve as a reminder than any chemical one uses to modify the way a brain works may hold unexpected dangers.

It’s good to know that should my wife suddenly experience any of these side effects, her Provigil may be the reason. Of course, these additional potential side effects are also listed in the prescribing information for a couple of her other medications, too. Modifying brain chemistry is a tricky thing.

Here’s what surprises me. I did not learn of the FDA’s updated warnings from a healthcare provider. Nor did my wife receive information about the updated warnings from a doctor, pharmacist or the drug manufacturer.

I first learned about the new prescription warnings by reading it on a financial news web site. posted an article on 10/24/07, by Elizabeth Trotta, titled “FDA Warns on Cephalon’s Provigil”.  The Multiple Sclerosis Foundation has a good article about this issue, too: “New Warnings for Provigil“.

Cephalon’s “Newsroom”, the page on their corporate web site for news releases, provides no mention of the updated warning (I’m exploring the Cephalon site on 11/04/07). Cephalon’s web site has a page of corporate information for investors, but nothing there is about the 10/24/07 FDA announcement of the updated prescription warning.

Cephalon also has a product-specific web site for Provigil at The web site offers a lot of good information about the medication and its uses. If you or someone you know takes Provigil, the web site is a great resource for you. The important information for patients about side effects and medication use is available from the upper right hand link, “Patient Information”. The information is dated August 2007 (before the FDA MedWatch notice).

The lesson for patients and caregivers? Use MedWatch AND the web sites of drug manufacturers to stay on top of important drug safety information.

How Drug Safety Information Seems to Flow

MedWatch is the official place to read the latest drug safety information. Generally, this seems to be how drug safety information flows: Drug safety news appears initially on MedWatch. Next, the news media (medical news and financial news) pick up on the MedWatch postings and write articles to inform the public of significant drug safety news. Then drug manufacturers and medical professionals inform patients.

However, in Cephalon’s case with Provigil, the drug manufacturer was ahead of the FDA MedWatch posting. The Provigil FDA Approved Labeling (PDA File) was updated on August 17, 2007 and on September 12, 2007, a “Dear Healthcare Provider” letter (PDF File) was produced which details the updated information and warnings.

Good job, Cephalon.

Caregiver Tip: Know the names of all the drugs taken by the MS patient for whom you care. Check MedWatch regularly to learn about drug safety news related to these medications. I’ve added a link to MedWatch in the right hand column. Also, visit the web sites of the drug makers for current information. As they say, “knowledge is power”.

Caring for Yourself MS Medications

Pets are not for everyone. And if you’re not an “animal person” you should probably avoid getting a pet. Pets require attention because they can do so little for themselves. If you feel stretched already, you may not want the additional work a pet requires.

Now, with that disclaimer provided, I’ll begin to tell why a good pet can be a wonderful thing for a person with MS. First, I’ll tell about my dog, Einstein. With a name like that you can imagine I had high hopes for him. He doesn’t live up to the name. He’s not a show dog. And he’s bright enough, but he really excels in just a few things. Fortunately, what he excels in is the important stuff.

Einstein’s a two year old Cocker Spaniel we bought from a friend. We picked him out of the litter in my friend’s living room when the pups’ eyes were just barely open. It was a great way to choose a dog. My wife and daughters bonded with him before we ever brought him home.

He’s an excellent house dog with great bladder control. We live out of town on a couple of acres, but he’s never been off the leash outside so he stays clean and doesn’t bring in the smells he would if he ran free like most of the neighborhood dogs.

He’s a lazy dog, sleeps most of the time and isn’t hyperactive like some smaller dogs can be. In point of fact, he’s stretched out asleep on the floor here beside his/my chair. The only furniture he claims as his is my chair. He hops in it as soon as I get out of it. The chair sits beside the French doors and I think he likes the view it affords of the backyard. Lately, he’s had his eyes on my neighbor’s rooster and three hens which make regular appearances in my yard. I can say, “Einstein, chickens!” and he runs to the back doors barking and whining with excitement, tail and butt wagging as he looks out the windows for the crazy birds.

He’s a fun dog to own.

Here’s the main reason I think a good pet can be a wonderful thing for someone with MS: a good pet is pet-able. Few things are as calming to my wife as petting Einstein. I’ve read research about the benefits of pet ownership for improving blood pressure, extending the life span of heart attack patients, and soothing distressed geriatric patients. I see the best evidence of the good a pet offers when watching my wife relax while petting Einstein. Even if I didn’t like him, that alone would be enough to make it worth tolerating him.

Another benefit is that Einstein is entertaining. My wife and I both laugh watching the girls play with him. And laughter is good for the heart.

Caring for a pet requires that one exert effort beyond what they may wish. I know my wife spends more time outside with Einstein than she would without him. He tugs on the leash enough to exercise her arms. And while she doesn’t walk him around the neighborhood, she does walk him around the backyard each day.

There are two things I didn’t want to do a couple of years ago, but having done them, I’m glad I did. I painted our living room yellow and white and I bought my wife a dog. Sometimes I still miss the green walls and wood paneling, but I’ve not yet regretted having Einstein.

Caregiver Tip: A caution is in order. If caring for an MS patient requires all of your time or would be additional stress, you don’t need the extra burden of caring for a pet. However, many cities have pet therapy programs which may offer access to a well-trained pet without requiring that you care for it. A weekly visit to your house by a pet therapy animal may be just as soothing and beneficial.

Practical Tips

How did we find information before the Internet? Wondering about the relationship between Betaseron and peroneal neuropathy, I Googled(tm) [“multiple sclerosis” “peroneal neuropathy” betaseron] and found links to three web sites. One of the online resources is excellent. The Department of Rehabilitation Medicine, University of Washington, School of Medicine makes available a course syllabus for Rehabilitation Medicine titled, “Clinical Practice of Physical Medicine & Rehabilitation” (PDF File).

If you provide care for someone with MS, the chapters you want to read are Chapter 1, “What is Physical Medicine & Rehabilitation?” and Chapter 8, “Rehabilitation in Multiple Sclerosis”. These two chapters should be required reading for MS caregivers.

Chapter 1 clarifies definitions for a group of words we tend to use without discrimination: disease, impairment, disability and handicap. The distinction between disability and handicap is important. Disability is defined as a limitation of performing tasks, activities and roles to the expected level considered normal. Handicap is a lack of societal role fulfillment for an individual due to a disability. Examples of cases are provided which explain clearly how one can be physically disabled without being handicapped.

You may be thinking it odd that I’m intrigued by the difference between “disability” and “handicap”. Not having traveled down this road before, the distinction between the two is enlightening for me.

Chapter 8 is speaks directly to rehabilitation for MS patients. I’ll run through the headings: background, diagnosis, classification, treatment, rehabilitation in multiple sclerosis, impaired mobility and self care, spasticity, pain, cognitive function (“cognitive issues are one of the primary reasons that people with MS are medically retired“), bowel and bladder care, treating fatigue, depression in MS (“in a … survey of 739 patients with multiple sclerosis 41.8% were suffering from depression), and conclusion. Included in the chapter is The Expanded Disability Status Scale (EDSS) and a list of references.

“Clinical Practice of Physical Medicine & Rehabilitation” (PDF File) is now on the list of recommended reading! (I’ll post the official reading list later …)

MS Treatment