Rick on December 13th, 2009

MultipleSclerosisSucks.com, subtitled, “How to Suffer from a Chronic and Incurable Disease without Appearing to be a Total Loser”, is a site MS caregivers should revisit from time to time.

You should probably go no more than a year between readings of “The MS Perspective Kit“. It offers a unique way to help one understand what living with Multiple Sclerosis is like. The lessons involve such things as rubber gloves, a woman’s high-heeled shoe, a roll of duct tape, and a large pot of coffee.

Through a healthy dose of humor, the author (who remains anonymous) does an excellent job of sharing the experience of an MS patient in terms that make the experience real for others.

Resource

MultipleSclerosisSucks.com

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Spend time on the Family Caregiver Alliance website at: http://www.caregiver.org

Of particular interest to Multiple Sclerosis caregivers will be the Family Caregiver Alliance Fact Sheet on Multiple Sclerosis. In addition to common information about MS, the fact sheet includes important information about cognitive problems caused by MS and their impact on caregivers.

For example, “About 50% of people with MS will develop some cognitive problems. Symptoms include a slowed ability to think, reason, concentrate or remember. Only 10% of those who develop cognitive problems experience symptoms severe enough to interfere with daily activities.”

The factsheet reports the most common cognitive problems include:

  • Memory recall, particularly remembering recent events.
  • Slowness in learning and processing new information.
  • Difficulty with reasoning, such as analyzing a situation, making a plan and follow through.
  • Poor judgment.
  • Impaired verbal ability, such as slowed speech or difficulty coming up with a needed word during conversation.

While the FCA Factsheet on Multiple Sclerosis will interest MS caregivers, the entire web site of the Family Caregiver Alliance is an incredibly helpful resource for caregivers. Visit http://www.caregiver.com/ and learn more!

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PubMed Central is a free digital archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health (NIH), developed and managed by NIH’s National Center for Biotechnology Information (NCBI) in the National Library of Medicine (NLM). All of the articles have been peer reviewed and published in professional journals.

PubMed Central exists by Congressional mandate. Any researcher funded in whole or in part by the National Institutes of Health must provide the resulting manuscript to the NIH for publication electronically. Concerned that so many journals were providing free abstracts of research but charging fees for access to full journal articles about research which had been paid for with public funds, the NIH adopted an open access policy.

What does this mean in real terms? It means you can read the full text of 42,807 journal articles related to Multiple Sclerosis.

Here’s the link: http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed

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Rick on May 26th, 2009

The inaugural World MS Day is tomorrow, May 27, 2009. So far more than 8,000 people and organizations from 129 countries have registered at the World MS Day website.

In the future, World MS Day will be held on the last Wednesday in May. This is an important effort and I expect among the results will be increased attention on Multiple Sclerosis. Visit the World MS Day website and see what may be going on locally in your area and around the world! You’ll also find free downloads and information about MS.

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Rick on April 20th, 2009

My wife’s local MS Support Group held an MS Awareness event at our local library. The event started with a style show of clothing designed for ease of use. This was followed by a discussion about healthy eating which was led by a local Registered Dietitian. Finally, a young family practice physician (who is also an MS patient) answered questions for the participants. It was an excellent morning and is a fine example of the value of participating in a local support group.

As I recall the conversations I overheard during the event, I noticed common themes. In order of frequency, first was the concern about doctors who do not listen, second was a concern over medications, and third was the common concern about the cost of medical care. With good reason, these three themes seem to be common undercurrents when patients gather.

I’ve said it before: every person I’ve met with MS has been tenacious, determined and tough. They make most of us without MS seem like whiners. While they may be slowed physically, I’ve not met anyone who let their MS symptoms or their experience of Multiple Sclerosis stop them.

It’s sadly ironic to me, then, that the most common complaints I heard were about issues that are out of the patients’ direct control and are related to medical care: doctors who will not listen, medications and side effects, and the cost of care.

Assuming the stories of helpful doctors who made housecalls and treated patients like they were extended family are actually true, the medical professional has taken a left turn somewhere along the way. I know that’s a generalization, but it seems to be the experience of many.

When the practice of medicine as a profession is turning into a business for profit it must become bottom-line focused. The doctor can’t listen because she has too little time, medications are a two-edged sword solving one problem but causing others, and costs are structured so shareholders receive the best returns at patients’ expense. That’s the world we live in.

The Value of an MS Support Group

The issues I overheard the group members share are actually one of the many reasons an MS Support Group is a good thing for patients and caregivers. A good support group is an oasis where one can relax in the presence of others who share their experiences, advice, knowledge and (most importantly) their support.

Caregiver Tip: Become involved in an Multiple Sclerosis Support Group. It may be one of the wisest things you and the person for whom you care do.

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Rick on April 10th, 2009

During the last weeks my wife’s legs have troubled her. She quit driving a few days ago. Walking is difficult.

I watched her in the kitchen from my chair in the living room as she literally had to think to slowly put one foot in front of the other to walk across the kitchen. (I need to write about how tough and tenacious she and other MS patients I know are in their fight to get things done. I’ve never met an MS patient who was a quitter.)

I told her yesterday that I think we need to visit her neurologist again before this leg problem gets too out of hand. It’s been a couple of years since she’s had an exacerbation so, on the average, it’s time for one. We talked and I mentioned I thought her doctor would prescribe the steroid IV for a few days. She said she dreaded it because of the effects that follow it for two or three weeks.

Easter is upon us so I took my daughters dress shopping today. As time goes by, either I’m getting better at it or they’re growing more patient with me. My youngest walked out of the dressing room in something I thought was too low on top and too high on the bottom. Just as I finished telling her to bend over and touch her toes, a friend walked up and said, “Rick, that is so 70’s. That’s a cute dress.” And that sealed the deal for my daughter. And when we returned home, my wife loved the little dress, too.

Anyway, our shopping done, we were getting in the minivan when my wife called.

“Guess what!” she exclaimed.

“I don’t know. What?” I asked, wondering why she sounded so excited.

“For the last two hours my legs have been fine! I’m walking without my cane!”

Just like that.

So what happened? Was it a random symptom? Is this just momentary relief or will her legs be fine now? Does she need to see the neurologist? I don’t know. I can’t answer any of these questions. I do know she seems more steady this evening and while she couldn’t walk around the block if she had to, I can tell she is walking much better.

This random symptomology is one of the really weird things about Multiple Sclerosis. Unlike symptoms of other things, MS symptoms often seem random. I prefer a more orderly, Newtonian symptomology where symptoms are the consequence of action. Hit your thumb with a hammer and you feel pain. Eat too much spicy food and you experience indigestion. MS isn’t like that.

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Rick on February 28th, 2009

You may think your pharmaceutical expenses and drug costs are high. They are.

Part of the reason is that drugs are made by corporations that must return value to shareholders. To do this, they must sell drugs. To sell drugs, pharmaceutical companies have paid doctors to promote their drugs. The money paid to doctors is an expense which increases the cost of drugs. That’s the business.

One step beyond the business, though, is corruption. At least one drug company has pleaded guilty for paying doctors to recommend drugs for diseases for which the drug was not approved. And there are new allegations the drug company may have known the drug was not even effective against the diseases for which it was being promoted.

That’s all background.

Pfizer Inc., the world’s biggest drugmaker and the company that created Neurontin, has said it will begin (next year) disclosing all payments of more than $500 it makes to doctors.

According to the MSNBC article, “Pfizer to disclose payments to doctors next year“, Pfizer is doing this “after introduction last month of legislation to require such disclosures, and revelations of astronomical payments to some doctors that were not revealed to universities and hospitals that employed them.” In other words, this is an example of another corporate entity becoming interested in transparency only after regulatory requirements change.

While politicians suggest this is a good move because there is so much public money that passes to drug companies, I believe the real value in this is that it makes transparent the relationship between a doctor and the medications the doctor prescribes.

Here’s what I like about it: suppose a doctor makes a presentation to an MS support group and talks extensively about one of the MS injection therapies and only mentions the others in passing.

Don’t you want to know whether the doctor is focusing on the one medication because he or she finds it really is the best medication and not because he or she is being paid to give a speech? As I wrote in September of 2007 in “MS Medication, Insurance Coverage and 2 Ounces of Gold“, I sure want to know!

Here’s why Pfizer’s decision to report these payments to doctors is important. Pfizer pleaded guilty in a legal settlement related to an accusation it had illegally paid doctors to prescribe Neurontin for uses not approved by the FDA. Pfizer paid penalties of $430 million for paying doctors to prescribe billions of dollars of Neurontin to patients with diseases for which there was no evidence of Neurontin’s effectiveness.

Newsweek has a good article that summarizes the Pfizer/Neurontin legal issues: “Pfizer’s Headache: Lawsuit charges drugmaker was deceptive about Neurontin.”

Pfizer’s behavior offers the clearest example of why transparency in the doctor/pharmaceutical company relationship is important.

Interesting to me is that while Pfizer paid $430 million (about one quarter’s sales of Neurontin), no physician was charged. I think this must be why: Doctors have to be able to trust the information they receive from pharmaceutical companies. Certainly, no physician with integrity would prescribe or promote a drug they did not believe to be effective.

Caregiver Tip: The quickest way to get to the point of this issue with a doctor about a prescription medication is to ask, “Do you receive money from the drug company that makes this medication?” Once that is on the table, you can then talk about whether or not the medication is being prescribed because your doctor really does believe it will be effective.

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Rick on February 11th, 2009

“Doing Your Best When You Can’t Make It Better” has been the tagline of this blog since I started it. I think the tagline may express too much futility. Maybe I was having a bad day or month when I wrote it.

Today, I’m changing the tagline to something much more positive and more reflective of what the MSCaregiver blog has become: “Tips and Info for Multiple Sclerosis Caregivers”. The content will not change because of the new tagline. Nor will anything else about the blog change. I just realized I’m tired of the “can’t make it better” notion.

In fact, that initial phrase, “doing your best when you can’t make it better,” is the antithesis of what caregivers do. We do make it better. I know my wife is healthier and happier as a consequence of me doing my best to make things better. Her life is better.

New idea! The tagline will be, “Doing Your Best Does Make it Better“. I’ll try that for a while and see how it feels.

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Rick on February 10th, 2009

Read the CBS News report, “Treating MS Symptoms With Stem Cells: Promising Northwestern University Trial Uses Patient’s Own Stem Cells To Treat Symptoms Of Multiple Sclerosis

Today, the CBS News Early Show presented an interview with Edwin McClure, a young MS patient, who participated in a Northwestern University trail which involved using a patient’s own stem cells and chemotherapy. McClure’s family says he is “cured”. The researchers describe the trial as a treatment of symptoms. Either way, the results presented look very promising. This is definitely a study to keep our eyes on.

Here’s a link to information about the study on the ClinicalTrials.gov website: http://clinicaltrials.gov/ct2/show/NCT00273364

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Rick on February 10th, 2009

Researchers Disprove 15-year-old Theory about the Nervous System

(PhysOrg.com) — A delay in traffic may cause a headache, but a delay in the nervous system can cause much more. University of Missouri researchers have uncovered clues identifying which proteins are involved in the development of the nervous system and found that the proteins previously thought to play a significant role, in fact, do not. Understanding how the nervous system develops will give researchers a better understanding of neurological diseases, such as multiple sclerosis and Charcot-Marie-Tooth disorders.

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Rick on February 8th, 2009

In the Health section of PhysOrg.com is an article titled, “How to … avoid burnout

Burnout – a state of mental, physical and emotional exhaustion — leaves people feeling hopeless about the future. While the focus of the article is on workaholism, the tips from therapists on staying healthy in stressful environments are perfect for caregivers.

For example, one tip is, “Nurture your spirit. Do something just for yourself, whether it’s listening to music, exercising, getting a massage, reading or writing in a journal.” It’s a quick read that may remind you that putting on your own oxygen mask first is important.

Caregiver Tip: Remember to keep yourself in good health, clear minded, and emotionally healthy. You cannot care for others if you do not care for yourself.

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Rick on January 31st, 2009

One of the first commitments I made to myself after my wife was diagnosed with Multiple Sclerosis is that I wouldn’t allow it to impact my children in negative ways. That was eight years ago. They were five and eight years old at the time. Fortunately, my wife and I have been able to keep that commitment. My girls aren’t responsible for taking care of their Mom.

That’s not to say they have been untouched. I’ve written before about the positive aspects we’ve discovered through the years. I believe I’ve been much more present for my daughters with transportation and shopping. And I think they are both more compassionate than they otherwise would have had the opportunity to become. Unfortunately, what we’ve been able to do isn’t the case in every family.

It’s difficult for children who find themselves in the role of caregiver. One of the more important studies about the impact of being placed in a caregiving is “Young Caregivers in the U.S.

“Young Caregivers in the U.S.” presents the results of two studies into the prevalence of children who are caregivers and the impact their roles as caregivers have on them. The studies were conducted by Mathew Greenwald & Associates, Inc. for the National Alliance for Caregivers and the United Hospital Fund.

The studies had three main objectives: to determine the prevalence of caregiving among children in the U.S., to learn what role children have in giving care, and to learn how the caregiving role impacts the life of a child.

It isn’t a surprise that the more intensive a child caregiver’s role is in caring for a parent, the greater the impact is upon their experience of childhood. Perhaps much of what the report describes is best described as a role reversal in which a child is placed into a parental role to care for a parent or grandparent. Family theorists call a child in this situation a “parentified child”.

“Young Caregivers in the U.S.” paints a grim picture. “About six in ten child caregivers help their care receiver with at least one activity of daily living (ADL) (58%). ADLs include bathing, dressing, getting in and out of beds and chairs, using the bathroom or diapers, and feeding. Specifically, 30% of child caregivers help with one ADL, 16% help with two, and 12% help with three or more.”

Some of report’s conclusions: some of the results are mixed. Children engaged in caregiving are not usually doing it alone and are participating in the same educational and social activities as their noncaregiving peers. There are indications, however, that some children are experiencing distress that is manifested in behavioral and school problems and feelings of isolation and sadness. Boys in particular seem to have more difficulties than girls. Children in minority households with lower incomes are under particular stress and report receiving less help in carrying out their tasks.

Suggested solutions are more general in nature and include ideas about creating services to assist child caregivers. The report ends with an extensive bibliography of related resources.

Caregiver Tip: It isn’t possible in every situation because family life is different for each of us and because life is harder for some than for others. However, to the best of your ability, avoid placing children in caregiving roles.

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Rick on January 20th, 2009

The National Institute of Neurological Disorders and Stroke (NINDS), a division of the National Institutes of Health, offers a well-written online paper titled, “Multiple Sclerosis: Hope Through Research”.

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Rick on January 18th, 2009

It’s Sunday and here’s something I never thought I’d write about in this blog: crop circles, clergy without faith, and an alien invasion.

I watched Signs again last night with my teenage daughter. She had not seen it before. It’s a movie that leaves me wanting to know more about one of the characters. I wish he were my neighbor so we could sit out back, drink coffee and share our understandings. Throughout the movie, Rev. Graham Hess (played by Mel Gibson) struggles with faith and his expectations of God and life.

Rev. Hess is a priest who lost faith following the death of his wife. You learn through his flashbacks that before the movie begins, his wife was struck by a vehicle while taking a walk at night. She was pinned against a tree by the vehicle and lived just long enough to talk with her husband who arrived at the scene, very ministerial, in his black suit and white collar.

Signs is about the crisis of an alien invasion which follows the appearance of crop circles around the world. I’ll not pursue that line here, but the story is done well because the focus is on Father Hess, his two children, a young son and younger daughter and Hess’s younger brother who lives with him.

Against the background of the invasion, M. Night Shyamalan develops a story in which the crisis can work well as a metaphor for understanding how a family struggles with the invasiveness of a disease like Multiple Sclerosis. The invasion impacts every family member, they don’t know what to expect, emotions run high and family dynamics swirl as new information arrives (or doesn’t).

Any invasive crisis forces choice of action … do I fight, focus on what’s important, learn to care in new ways or get lost in longing for what was?

This is Hess’s crisis of faith: he once believed in signs. He knows his wife should not have been killed. God is good. Bad things are not supposed to happen. His wife died. He wants to feel that “whatever’s going to happen, there will be someone there to help”. He’s alone on the dark side of the moon without his wife and without his faith.

He explains the crisis in this way to his brother:

“People break down into two groups. When they experience something lucky, group number one sees it as more than luck, more than coincidence. They see it as a sign, evidence, that there is someone up there, watching out for them. Group number two sees it as just pure luck. Just a happy turn of chance. I’m sure the people in group number two are looking at those fourteen lights in a very suspicious way. For them, the situation is a fifty-fifty. Could be bad, could be good. But deep down, they feel that whatever happens, they’re on their own. And that fills them with fear. Yeah, there are those people. But there’s a whole lot of people in group number one. When they see those fourteen lights, they’re looking at a miracle. And deep down, they feel that whatever’s going to happen, there will be someone there to help them. And that fills them with hope. See what you have to ask yourself is what kind of person are you? Are you the kind that sees signs, that sees miracles? Or do you believe that people just get lucky? Or, look at the question this way: Is it possible that there are no coincidences?”

He longs for there to be no coincidences, but he can’t shake the thought that maybe he is on his own.

In a scene when his son, Morgan, is dying, Hess yells at God, “Don’t do this to me again. Not again. I hate you. I hate you!”

Hess is an emotionally honest man. But he can’t know yet that the asthma attack is a good thing. It turns out to be “more than coincidence”. (I’ll not spoil the ending for you.)

The crisis is resolved for Hess. He sees the event as a sign, evidence, that there is someone up there.

For some, having a family member with Multiple Sclerosis may bring no challenge to their faith. For those who struggle, though, Signs is a good movie. It provides an apt metaphor for thought and offers a story of faith renewed.

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Rick on January 17th, 2009

As a caregiver, you know your family finances are probably different than those of some of your friends. You have medical expenses most of your friends do not have. Chances are good that your friends’ families are dual income families. Yours is probably not. Caregiving often brings its own unique set of financial burdens.

Helpful information is available if you wish to learn how you might better manage your financial burdens, especially as they are compounded by the current economy.

TAKE CARE! – Self Care for the Family Caregiver is the National Family Caregivers Association‘s quarterly newsletter written to provide members of NFCA with information, insight, support and knowledge. It’s a great little newsletter with well-written articles.

In the current issue (Winter 2009), there is extensive information for caregivers about managing family finances in the current economy. And it’s good information. Articles include “The Costs of Caregiving”, “Money-Saving Tips for Family Caregivers”, “Protect Yourself Against Financial Fraud”, and “Tax Tips for Family Caregivers”.

As a member of NFCA, I receive a paper copy of National Family Caregivers Association’s TAKE CARE! newsletter. Mine arrived in yesterday’s mail. I’ve just checked the NFCA web site and this quarter’s newsletter is already available online in the caregiving resource section of the NFCA’s web site.

Caregiver Tip:

If you’ve not yet discovered the National Family Caregivers Association, take a moment to visit their website at www.thefamilycaregiver.com. I think you’ll find it to be a solid source of helpful information.

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