MSCaregiver.com, what works for me

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.

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“I need more Leg Hours in a day!”

You’ve heard the term “man hours” before.  I heard my wife use a new term today.  It’s “leg hours”.

“Leg Hours” are the number of hours in a day that my wife’s legs work well enough for her that she feels stable and productive.  The number of good leg hours in a given day varies.  Some days she has many, some days she has few.

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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.

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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.