Category: <span>Practical Tips</span>

Skilled doctors are busy people and tend to be very intelligent. Some of the mystique that surrounds doctors places them above most others on the social ladder. Not only that, but doctors tend to be “experts” in the very thing you need help with. It’s difficult for many people to think of doctors or talk with doctors as people.

And there are some doctors who actually encourage this problem. I imagine everyone knows of at least one example of a doctor who acts as if he believes he’s a god. “Here’s the answer. Don’t question me,” is their message. I know a plumber with the same attitude, though, so it’s not just doctors who may relish an “expert” role.

How does one talk with a doctor?

Here are a few important tips I’ve found to be useful in talking with my wife’s doctors.

First, remember this: doctors are just like other people. Behind their clinical white coat, they have the full range of human emotions to deal with – hope, sadness, stress, joy, frustration, etc. They have financial stresses and family stresses. Doctors are tired. They often feel impotent when they can’t effect a cure or relief. They live with hope and fear like all of us. And they participate in the medical struggles of a crowd of people. Being a doctor carries enormous ethical, financial and legal responsibilities. It’s a tough job.

Second, keep in mind (even though you’re paying for your time with the doctor) other patients are in the waiting room. Expect your doctor to be personable and informative, but don’t expect your doctor to talk with you about the weather or to be your “buddy, friend and pal”. Respect your doctor’s time.

Third, ask questions and ask for clarification when you need it. Good doctors want their patients to fully understand their treatment and disease. Don’t be afraid to ask, “can you explain that to me in everyday terms?”

Fourth, remember your doctor is not the only expert in the room. You know about you. You experience the side effect of your medications. You know where it hurts. You are the expert on you. Expect your doctor to know a whole lot more than you about treating MS, but your doctor should expect you to know more than him about how MS is treating you.

Fifth, laws regarding confidentiality of patient information may limit what a doctor can or will tell a caregiver. Without the patient’s permission, do not expect a doctor to talk with you in detail. If you are the patient, however, expect your doctor to share freely the information you request.

Sixth, do your own research. The internet is probably the best invention of our lifetimes. While much of the information available on the ‘net is questionable, never before have patients had access to so much good information about medicine. You can search the web for new research, medication information, reports about doctors and clinics, helpful tips for living with Multiple Sclerosis … there a world-wide web of information available.

Seventh, share research with your doctor when you believe it can be helpful to you. One way to initiate a conversation about treatment issues like this is to print the web page describing research you’ve found and share it with your doctor. Most will be thankful that you’ve shared information and it will give you both a reference point to start a conversation.

Of course, in addition to these, I’m sure you can think of other tips to make it easier to talk with a doctor. But I’ll end with this – if your doctor is too rude, too “clinical”, won’t talk, etc. you may want ot find a better doctor. There are far too many doctors who are caring, skilled, and informative to tolerate the rare MD who promotes the “god complex”.

Finally, a long relationship with a great doctor can make living with MS easier. If you’ve got a good patient-doctor relationship, appreciate it and thank your doctor!

Caregiver Tip: MS patients and caregivers must communicate with their doctors. There’s no better way to facilitate a good relationship and make living with MS easier.

A bad thing happened last night.

So I called the National Poison Control number 1-800-222-1222. (There is also an excellent poison control website!)

A calm, friendly voice answered, “Poison Control. How can I help you?”

I, a little stressed, asked quickly, “My 30-pound Cocker Spaniel just swallowed one of my wife’s 5 mg Aricept pills. What do I do?”

A calm, friendly voice replied, “Sir, I don’t think that will be a problem. Let me check my resources.”

I heard keys clicking quickly on a keyboard. “Sir, that will not be a problem for your dog.”

With great relief, I replied, “Thank you. Thank you very much.”

I relaxed.

My dog, Einstein, slept well last night. And because of his Aricept-enhanced memory, he will never forget me chasing him like a crazy man and prying his jaws apart over that tiny little pill he swallowed.

1-800-222-1222 is the telephone number for every poison center in the United States. You may call this number 24 hours a day, 7 days a week and talk with a poison expert.

Caregiver’s Tip: Keep the Poison Control Number handy: 1-800-222-1222. Store it in your cell phone. You never know when (or why) you’ll need it.

Literature exists because people need stories of others. Stories are why communities have libraries. Books of woe caution us. We’re encouraged by tales of people who advance against overwhelming odds. We’re quieted by stories of people with hope. Stories of others are important because they allow us to put ourselves in another’s place.

Stepping outside the world of literature, we seek stories about others directly. We ask, “how is ol’ so-and-so doing?” We keep track of people in our communities through the stories we share of their lives. (Of course, this verbal tradition can easily slip into gossip when our motives are too self-centered.)

Here’s the target of this post: In addition to reading books about people who struggle with and overcome the effects of Multiple Sclerosis and finding online support in web sites, consider joining an MS support group.

A Multiple Sclerosis support group is typically comprised of people who have multiple sclerosis. Some support groups invite family members (if not to every meeting) at least to celebrations like a Christmas party or afternoon in the park.

MS support groups are typically not psychotherapy groups. Rather, they are groups of people who offer support to each other as they are able. The focus is usually on how to manage life, maintain health, access resources in the community, and share personal experiences which might help others.

Support groups are not for every MS patient. Like me, some people are not disposed to hanging out in groups. However, the benefits offered by a support group greatly outweigh the discomfort of easing into the group at your own pace.

How does one find an MS support in their community?

First, ask your doctor. Many support groups meet in conference rooms in hospitals or clinics. Also, visit the web sites of the national MS-related organizations.

For example, the Multiple Sclerosis Association of America has a web page devoted to support groups at http://www.msassociation.org/programs/support/. MSSA maintains a list of support groups which you can review online. MSAA also offer a toll free phone number for people searching for a Multiple Sclerosis support group: (800) 532-7667

For years, my wife has been active in an MS support group in our little community. In many ways her participation has been a good experience for her. And now I must end this post because I need to hurry and get ready to go to her MS support group’s annual Christmas party!

Caregiver Tip: If the MS patient for whom you care does not participate in an MS support group, discuss the possibility of attending. It’s a great way to find support and hear the stories of other MS patients.

We choose to face the future in one of two ways: prepared or unprepared. If you care for someone with a disease, daily needs and routines often require so much attention that preparation for the future sits on the back burner (bad pun alert).

In terms of planning, I think every caregiver should consider fire safety.

You ask, “What does fire safety have to do with being a caregiver?” Fire safety is especially important in a household where a family member moves slowly, may be easily confused in an emergency, requires a wheel chair, or is bed bound.

It’s important to prepare for the unexpected if you are a care giver. Unlike most people who might quickly run from a burning house, a person with MS may require extra assistance in a house fire or a nursing facility fire.

The National Fire Protection Association (http://www.nfpa.org) is “the authority on fire, electrical, and building safety.” In other words, if you want to learn about fire safety, NFPA.org is the place to start. In addition to more information than you thought there was to know about fires, the NFPA web site offers very helpful, free information about fire safety for caregivers and people with disabilities.

If you use the site’s menu and choose ‘Learning > Public Education > Safety Tips and Fact Sheets’, you will discover free information in categories such as appliances, campus and dorm fires, candles, carbon monoxide, children and fire, cooking, electrical safety, emergency preparedness, escape planning, fire extinguishers, fuels, high-rise buildings, nursing homes, people with disabilities, smoke alarms … you get the idea. It’s an impressive collection of free information for everyone.

If you are a caregiver, however, I suggest you start with these two sections:

People with Disabilities

and

Escape Planning

Caregiver Tip: Be prepared. Life is easier when you are prepared for the unexpected. If you are an MS Caregiver, make sure you have an emergency plan in case a fire (or other emergency) requires evacuation.

I spent last week in Arizona at a leadership conference. It’s difficult to feel good about going out of town for a week because I worry I’ll be needed at home. Fortunately, cell phones, text messaging and email make it easy to communicate with my wife and daughters throughout the day. But there are things I do as a parent that my wife is no longer able to do. Someone else must fill in when I’m away.

For example, these days, I’m the family chauffeur because she’s not driving. While I prepared to leave town, scheduling dependable, trustworthy transportation was a concern. Out of the blue, a friend volunteered to pick my oldest daughter up each morning and take her to school and back home each day I was away.  Another friend volunteered to provide transportation to choir practice and church.

As it turned out, another friend filled in for the first volunteer when she had wrist surgery during the week!

Other friends make a point of telling me to remind my wife that she can call them for anything while I’m out of town. One friend tells me, “Anything, anytime.” And he means it.

What’s the message here? Friends are a blessing!

Unfortunately, caregivers may often find themselves isolated because their social lives are so constrained by the time and tasks required to provide care for a loved one. Friendship requires time and if you don’t have time to spare, it can be difficult to maintain friendships. In spite of this, it must be done.

Staying in touch with friends can be done as simply as making telephone calls or remembering birthdays with a card or letter. While you may not have time to prepare a full-course meal, perhaps you can take a short break and invite a friend over for coffee or hot tea and a stimulating conversation.

And when a friend bails you out, be willing to return the favor whenever you can. A nice “thank you” gift is appropriate, too … especially if the small gift is something your friend will value. For example, books (for readers) make great gifts.

You know your friends and they know your situation. They are aware of the additional stress you carry as a caregiver and they understand that even small gestures of friendship on your part are significant.

Caregiver Tip: Friends are a blessing. Bless your friends!

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.

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.

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.