Tag: <span>multiple sclerosis</span>

Published February 13, 2011 by

What’s the Name of My Memory Medicine?

It happens when my wife completes a patient information form in a new doctor’s office or a dentist’s office. When she sees the question, “Please list any medications you currently take”, I wait for the pause, the sheepish grin, and the inevitable question, “What’s the name of my memory medicine?”

It quickly became a family funny that she cannot remember the name of her memory medicine.

In spite of that little glitch, though, I consider Aricept® to be her best drug.

Prior to taking Aricept®, she had quit reading. It was simply too frustrating. By the time she read to the bottom of a page, she could not remember what she had read at the top. To me, that’s the most telling example of how poor her short-term memory had become.

Her functional, short-term memory improved significantly after starting Aricept®. Quickly, she remembered better where things were, what she had just said or heard, and who had just done what.

Best of all, she started reading again! Now, she’s one of our local library’s most frequent patrons, checks out books by the bagfull, and reads for hours on end. It amazes me that such a little bit of a chemical each day can be so helpful for her memory – even if she can’t remember the drug’s name!

I share this story because it’s a good example of how important it is for MS caregivers to pay attention to a patient’s symptoms so they can be reported to the patient’s physician. It’s one thing to say, “she has memory problems”. It’s quite another to say, “she quit reading because she can’t remember the top of the page.”

Note: I’m not a physician and can make no recommendations about medications. However, you can learn more about Aricept® at www.Aricept.com. Aricept is a medication for Alzheimer’s disease. You can also read more about Aricept (donepezil) on the National Institutes of Health’s U.S. National Library of Medicine’s web site at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001006. The NIH states, “Donepezil may improve the ability to think and remember or slow the loss of these abilities in people who have AD. However, donepezil will not cure AD or prevent the loss of mental abilities at some time in the future.”

MS Medications MS Treatment

aricept memory medicine multiple sclerosis

Published June 16, 2010 by

Get to Know Your Pharmacist

The title gives it away, but with which medical professional is a Multiple Sclerosis patient likely to have the most contact?

In my experience, it has been her pharmacist. Most medications are refilled monthly. Between quarterly or annual visits to the neurologist, I believe most concerns about Multiple Sclerosis are related to medications. And in my experience, the pharmacist is the more accessible, knowledgeable source of information about medications and their effects.

The most helpful professionals on my wife’s “treatment team” are the pharmacists at our local pharmacy. In fact, I imagine they know more about the current status of my wife’s health than does her neurologist. The pharmacists are so helpful, they’re on speed dial in my cell phone.

Here are some examples of how forming a relationship with a good pharmacist will make your role as a caregiver much, much easier.

1. Pharmacists know about drugs. Take advantage of the medication education a pharmacist will provide when a new medication is prescribed. Medications come with fact sheets (written in fine print). If you ask, a pharmacist will explain them for you in plain English. Examples of a few important questions to ask about each new medication include:

  • What is this medication for?
  • Will the patient’s other medications interact with this new drug?
  • Do other medications she is taking effect when this one should be given?
  • What side effects should we worry about?
  • What if she forgets a dose?
  • With or without food?

2. Pharmacists really understand drug interactions. It is important to ask a pharmacist about the potential consequences your patient’s prescribed medications may have with over-the-counter medications for such things as cold or allergies. Some drugs interact with each other to complicate or compound the side effects. The last thing you want is to create a problem while trying to treat symptoms of a cold. Pharmacists love to talk about drugs. It’s the reason they went to school for a long time! Take advantage of their knowledge.

3. Pharmacists know what works. Doctors specialize in your body. Pharmacists specialize in what medications do and can do to your body and its processes. More than once a good pharmacist has intervened on a patient’s behalf when he or she noticed the physician’s prescription may not be appropriate. A phone call to the doc is usually all it takes to fix the problem.

4. A good pharmacist can make traveling easier. Ever forget to take important medications on a trip? If you call your home pharmacist. he or she may be able to work with a local pharmacy where you are visiting to provide enough medication for your visit.

5. Your pharmacist can also be a great ally for you in your efforts to communicate with your insurance company about medication authorizations. Pharmacists really understand the whole medication approval process and can give you pointers about relating to insurance companies or provide information on your behalf.

6. Finally, my pharmacist serves an excellent gumbo from his front porch each Halloween night and sets tables in his yard for all the trick or treat parents!

MS Caregiving MS Information Sources MS Medications

drug interaction medication education medications multiple sclerosis pharmacist pharmacy

Published June 21, 2009 by

PubMed = Free Multiple Sclerosis Research Articles

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

MS Information Sources

medical information MS Research multiple sclerosis multiple sclerosis research

Published April 11, 2009 by

Random Symptomology

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.

Living with MS

MS symptoms multiple sclerosis random symptoms

Published November 27, 2008 by

Use Authoritative Sources for Medical Information

You may remember a teacher saying “you must use authoritative sources” when writing a research paper for class. What your teacher meant was to use sources written by people with academic or professional credentials.

For example, if you were to write a paper on growing roses, your neighbor with a green thumb and beautiful New Dawns might be a great source of information. However, unless she has a degree in botany or is a Master Gardener, your teacher will not consider her an “authoritative source”.

When researching medical information online you may be overwhelmed with the amount of information available for you to choose among. There are web forums, blogs (like this one, MSCaregiver.com), web portals, industry-related web sites, and online encyclopedias.

Be careful. Pay attention to what authority stands behind the information. A good example is this blog, MSCaregiver.com. I am not an authority on Multiple Sclerosis. I am not a physician or research scientist. I will not write beyond my authority. I am a man married to a woman with Multiple Sclerosis, “doing my best when I can’t make it better”. I write about what works for me and I share it here. Some of it is practical information like “Tips for Traveling and Multiple Sclerosis” and “How Does One Talk with a Doctor?“. Some of it is inspirational, “How Do You Pray?“. Because I am not an authority on Multiple Sclerosis, I will not say, “take drug X and it will relieve your symptom Y”.

Why this discussion about authoritative sources?

It is vitally important that caregivers and patients not base their medical decisions on bad information. Bad information is information that is wrong or incomplete. An example of incomplete information is discussed in a recent article on MSNBC.com titled, “Wikipedia often omits important drug data“. The subtitle is “Study: Entries may not include side effects or risks from mixing medications”. I encourage you to read the article. It’s important.

The article mentions a better source for medication information is Medscape Drug Reference, a free, peer-reviewed web site. The article also mentions using medlineplus.gov for “good quality information that you can feel confident in.”

If you want to learn about joining a support group or what my wife means by “leg hours“, this blog is for you. If you want professional help with an issue more critical to health, that might be risky or is medical in nature, talk with a physician. Use authoritative sources.

MS Information Sources Online Caregiving Resource

leg hours medical information ms multiple sclerosis

Published July 23, 2008 by

Best Multiple Sclerosis Treatment May Depend on Disease Subtype

A recent article on PhysOrg.com reports on animal studies by scientists at the University of Michigan which suggest people who experience the same clinical signs of MS may have different forms of the disease requireing different kinds of treatments.

MS Treatment

animal studies multiple sclerosis

Published June 8, 2008 by

Multiple Sclerosis, Wheelchairs and Lifespan

My wife made a comment last week that I’ve thought about a lot since she said it. It was said in passing in the middle of a conversation that I cannot remember (apparently, my wife’s not the only person in our family with poor memory). In this case, though, I think I fail to remember the rest of the conversation because her comment stunned me.

“I don’t think I’ll live a long life.”

I knew if I talked to her about it then, I would become too assertive about how wrong I thought the statement was and that she had no right to think that way. (Actually, she has the right to think any way she wishes … and usually does … even if I don’t like it!)

I knew, though, I wouldn’t be able to listen to what she was really saying. So, a week later, yesterday morning, I asked her about her comment.

“I imagine you said it because you have MS, but having MS doesn’t mean you’ll have a shorter life. Are you thinking you’ll have a shorter life because of something you’ve read? Or is it just a hunch?”

She’s a realist and a pragmatist. “I need the cane to walk around on and it’s getting worse. I’m headed for a wheelchair in my future and I don’t think people confined to wheelchairs live as long,” she explained simply.

I know her gait is worsening. And I won’t be surprised when she requires a wheelchair. But I’m not ready to believe it will shorten her life. I said, “Unless you’ve read some significant study, I wouldn’t assume being confined to a wheelchair automatically shortens one’s life.”

She countered, “people in wheelchairs get less exercise, hearts grow weak, muscles grow weak. I don’t think they live as long.”

Ever the optimist, I responded, “Yes, perhaps that could be true, but I know people confined to wheelchairs who are in great shape. They even make racing wheelchairs for athletes!”

Her eyes said, “but I’m not an athlete.” She looked at me like I wasn’t understanding her. The fact is, I didn’t want to understand. I didn’t want to think that being confined to a wheelchair will shorten her life.

It’s obvious neither of us knew the real impact a wheelchair has on lifespan. So it was time for a little online research.

I’ll share what I’ve found about life span and wheelchair confinement. Interestingly, I’ve not been able to find a single study of the impact of wheelchair confinement on lifespan for MS patients.

So I’m approaching it from a different angle. I’ll start with the basic question, “Is MS fatal?”

MS is not a fatal disease, according to the National MS Society. “Researchers found that over the past 25 years, life expectancy for people with MS has increased.”

A more complete answer seems to be available on the Medscape Today website in “Aging With Multiple Sclerosis“, an article published in the Journal of Neuroscience Nursing (J Neurosci Nurs 36(5):245-251,259, 2004. © 2004 American Association of Neuroscience Nurses)

The authors write, “The disease (Multiple Sclerosis) causes demyelination of the central nervous system and results in symptoms such as extreme fatigue, mobility impairment, optic neuritis, weakness or paralysis, abnormal/painful sensations, and loss of balance. Although these symptoms can result in considerable disability for the person with MS (Finlayson, Impey, Nicolle, & Edwards, 1998), overall life expectancy is not dramatically altered for these individuals (Weinshenker, 1995). Of those with MS, 85%-90% can expect to live as long as their age peers (Minden, Marder, Harrold, & Dor, 1993). Currently in the United States, life expectancy estimates range from 74 years for men to 79 years for women (Centers for Disease Control, 2001).”

The authors did not separate the MS patient population into two groups, Those in Wheelchairs vs. Those Without Wheelchairs. The statistics include all MS patients.

So I’ve found an answer to my wife’s statement that she’ll not live a long life. I think she will live long.

Here’s why: 85%-90% of MS patients can expect to live as long as their age peers. (I don’t think I’m doing any funny math here, but the following works for me). Statistically, the bulk of MS patients will be found toward the average (inside the bell of the bell-shaped curve for those of you who like statistics and graphs). The 10%-15% of MS patients who do not live as long as their age peers are in the population that are outliers, they are a standard deviation or two away from the norm.

Based on her symptoms to date I believe she is having an “average” experience of MS. So, to extrapolate that into the future, I think she’ll find herself well within the 85% to 90% who live as long as their age peers … with or without a wheelchair.

Living with MS Reasons for Hope

life expectancy lifespan multiple sclerosis wheelchair

Published April 5, 2008 by

Can a Caregiver Be Too Helpful?

I took my youngest daughter to her softball practice yesterday evening.  She played hard.  She bats well, throws hard and loves to run.  She wore herself out.

As we were walking up the hill from the field she stopped, turned, and pointed to her bat bag she had left behind the backstop.  She asked, “Daddy, will you go get my bag?”

I stopped and replied, “No, Sweetie.  You’re the one playing ball, you get your bag.  I’ll wait for you.”

Then, when we got to the truck, she took off her very muddy shoes and dropped them on the parking lot.

“I’m too tired to pick them up and put them in the back of the truck,” she complained when she saw the question on my face.

“Toughen up, Girl,” I replied, “you can do it.”

“Anyone who is tough enough to get them muddy, is tough enough to pick up shoes and put them in the back of the truck.”

She returned to her shoes, picked them up and tossed the over the tail gate into the back of the truck.

I want my daughters to be independent, tough and responsible for their world.  When they start something, I expect them to finish it.  Even when it takes longer because they’re tired.

I’ve thought about last night’s exit from the ball field today.  I treat my healthy daughters very differently than I treat my wife who has Multiple Sclerosis.

If my wife were playing softball, I’d carry her bat bag for her and I’d pick up her shoes for her.  She wouldn’t even need to ask!

But, why?  She’s a tough lady.  And I want my wife to be just as strong and independent as my daughters.

I like to think it’s partly because I’m a southern gentleman reared to hold doors and umbrellas; taught to walk by the curb on sidewalks, eager to carry packages for ladies, with a strong desire to treat all females with respect.  Mostly, though, I treat my wife differently because I want to make her life easier.

MS isn’t easy to live with.  If a person lives with MS, they’re obviously “tough”.  Multiple Sclerosis is a heavy burden.  So, if I can ease my wife’s fatigue by carrying something for her, I’ll do it gladly.  If cleaning the kitchen gives her more “leg hours” to enjoy for herself, I clean the kitchen and wash the dishes.

The list of things I’ll do for my wife without being asked is very long compared to what I’ll do for my daughters.  They have the strength to do it for themselves.  “Don’t be a quitter.  Be a go-getter!” I tell them.  To my wife I ask, “can I help you with that?”

Sometimes I wonder, though.  How do I know I’m drawing the line in the right place.  What if I’m being “too” helpful?  What if by making life a little easier for her, I’m actually preventing her from being as tough as she really is?  What if being helpful so often really isn’t helpful?

Would she walk further?  Could she carry more groceries?  I think she would and could.  Would it be good for her?  I don’t know.  I do know she would be much more fatigued and stressed.  Would that be good?  No.

And I know if one of my daughters had MS such that she were so easily fatigued, I wouldn’t make her carry her bat bag if she had worn herself out playing ball.  I’d carry it for her.

As a caregiver, if you wonder when or whether your caregiving might be “too” caregiving, there’s a simple way to find out.  Ask the person for whom you care if you’re doing too much.

And remember, what you’re needed for today may not be what you’re needed for tomorrow.  The symptoms caused by Multiple Sclerosis vary over time.  You may need to do the grocery shopping for several months in a row and then be surprised when you’re told, “I’ll do the shopping today.”

When that happens, let your loved one do it.  Grab a cup of coffee and a good book.  Enjoy the moment!

 Caregiver Tip:  Talk with the person for whom you care about what help is needed and remember that the need will change over time.

MS Caregiving

caregiver multiple sclerosis

Published March 21, 2008 by

Leg Hours

“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.

Practical Tips

legs multiple sclerosis