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!

In fact, it would be impossible not to because the caregivers include information about their particular needs. Perhaps it’s empathy, or a sense that we’re in this thing together, that always gives me a little sadness when I read requests for help. I so wish there were a way to eliminate Multiple Sclerosis.

While looking over this week’s emails, I realize that there are a couple of general pointers I can offer to caregivers who are looking for support in their local communities. I’ll summarize them here. They may not work for every MS caregiver, but the principles will hold true for most.

1. Find a religious community you feel comfortable associating with. It’s nearly a universal truth: those who seek relationship with God will have an interest in serving their fellow man. If you have lived in your community for a period of time and have participated in a local faith congregation, you know what I mean. Sunday School classes, Bible study groups, all sorts of small groups seek to minister to others in need. If you become comfortable enough with a local minister to be vulnerable and share your need for support, I think the chances are good that you may find exactly what you need.

2. Don’t limit your search to caregiver support groups related to Multiple Sclerosis. The social services department of many hospitals will offer support groups for caregivers in general, unrelated to a specific disease. Again, in their ministry to the community, many churches will offer caregiver support groups.

Can a non-specific caregiver support group be helpful for you? Will other group members be able to relate to your unique needs as a caregiver for a Multiple Sclerosis patient? Probably, yes. Much of the stress related to being a caregiver is unrelated to the particular disease. Much of it is caused by the emotional issues that arise, the interpersonal struggles that come between you and the person for whom you care, the general issues related to scheduling, managing medical matters, financial difficulties, juggling the parental roles of two when only one parent is able to be active. You get the idea.

3. Use the Internet. The quickest way to find a caregiver support group in your community is to use a search engine and search for: “your town’s name” “multiple sclerosis” “caregiver support group”.

For example, I would search for: Ruston “multiple sclerosis” “caregiver support”.

4. National and international Multiple Sclerosis-related organizations have chapters across the country and around the world. These are good resources for caregivers and patients. Take advantage of the connections they have in your community by visiting the web sites of organizations like National MS Society, Multiple Sclerosis Association of America, and the Multiple Sclerosis Resource Center.

5. Finally, don’t give up in your search for support. I cannot stress strongly enough the fact that if you do not take care of yourself, you will not be able to care for your loved one. Find the support you need, even if the search for help is a frustrating process. Among religious communities, non-specific caregiver support groups, the Internet and MS-related organizations, support for caregivers is available in many communities.

“I enjoy the peace of our life together,” she said, “and I enjoy knowing I don’t have to worry about you leaving me.”

At first I thought she was talking in reference to the novel she was reading.

I raised my eyebrow. “I didn’t know you had ever worried about me leaving,” I offered.

“I did. Not a lot, but I did. It was right after I was diagnosed with MS.”

“Oh.”

I remembered her telling me about a lady in her MS support group whose husband left her after they learned she had MS. At the time I thought she was simply sharing information. And I remembered (about that time) she also mentioned she had read in a book about spouses who leave their partners after learning of an MS diagnosis.

I’d like to think my commitment to her has always been so blatant and obvious that she never would have wondered about me leaving her. But then again, after she heard of a husband leaving his wife, after reading a chapter in a book about it and after living with me and my disbelief about the neurologist’s diagnosis, I can see how the fear of me leaving may have felt very real.

We’ll soon return to our honeymoon cabin to celebrate our 20th wedding anniversary. I’ve never considered leaving. She’s been the center of my world and has always held my heart. She’s God’s best gift to me and is His most constant and present expression of grace for me. Theologians may quibble about that, but I have no doubt that God loves me: He gave me her.

While I wish she had never experienced the fear of being abandoned, I think I understand the emotional dynamics. And I’m certainly glad she navigated her way through her fear and enjoys our relationship without concerns.

How did I miss her fear? I think it was because in those early months following her diagnosis, I spent a lot of time trying to do what guys tend to do most when they feel like they’re losing control … I tried to fix things. I focused so much on the practical things required for us to handle MS well that I overlooked her fear. I spent so much time being a cheerleader that I missed her concerns.

(Besides, if I’m learning to give shots in her stomach, buying books about MS, and bumping up my life insurance so she’ll be taken care of if I die first, how on earth could she think I’d consider leaving?)

While I made good plans for the future, I missed some of the important emotional content she was experiencing. I assumed she, like me, looked into the future and saw us always together. But it wasn’t so clear for her then. I’m glad it is now.

I know husbands can disappear when their wives are diagnosed with significant illness. (And some wives leave when their husband is the patient.) Just this past week, I heard from a friend about a woman who’s husband left her after she learned she has cancer. It happens often enough that it may even be normal for someone who is diagnosed with Multiple Sclerosis or an other chronic illness to wonder if her or his spouse is going to remember the “in sickness” part of the marriage vows as well as they remember, “and in health.”

Caregiver’s Tip:

Even partners in solid marriages can be fearful of abandonment. If you think you need to reassure your partner that you’re in it for the long haul, do it.

Don’t miss this story … “One couple’s journey of love“.

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!

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.

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.

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.

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.

Yesterday, after her neurologist conducted an EMG on her leg, she had only bad news. (An EMG is a test with needles and electricity designed to make mad scientists drool with envy.) The doctor wrote prescriptions for a wheelchair, an MRI of my wife’s lower back, and a brace for her right foot. She told her to get hand controls on her vehicle. “It will not get better. It will grow worse.” Bad news.

What do you do with bad news? There possible responses are too numerous to list, but I’ll share the way I categorize them. You have two basic options. You can 1) whine, complain and choose denial or 2) you accept reality, take care of the problem and get on with life. The first option only enhances the misery of bad news and it explains itself. I’ll not comment further on it.

Accepting reality, taking care of the problem it presents and getting on with life works best. And this really involves three separate steps.

Accept Reality 

One cannot live an authentic life without accepting the reality of his or her existence. My wife is good at this. She cried in the doctor’s office because she understands what the doctor’s prognosis means. One cannot accept reality without being confronted by facts that generate powerful emotions. Loss of ability causes grief. Unlike denial, which is a mind-game one plays to avoid reality, accepting reality can leave you with raw emotions abraded by hard facts.

Take Care of Problems

The second step is to take care of the problems reality presents. Do something to make things better!

One of my roles in our relationship is to do the research and narrow options. Last night I found a company in Michigan that manufactures a hand control we’re going to explore. I called the firm today and chatted with the staff, got 4 phone numbers of authorized installers within 100 miles of where we live and then I started calling them. I know what the hardware and installation will cost and how many hours of training three of the four installers provide. (Important note: The prices vary enough among the 4 authorized installers that it was well worth my time getting a list of installers instead of using the nearest.)

In addition, I called the Office of Motor Vehicles and learned my wife will need a new driver’s license and must take a driving test in the vehicle after the hand controls have been installed. After that she will be restricted to driving vehicles with hand controls. I contacted my insurance agent who is checking with the underwriter to find out if our auto insurance premiums will change.

We explored web sites of wheelchair manufacturers and, frankly, I’m overwhelmed at the different models. I think she’ll want a light weight, folding chair. However, I’ve not found what I’m looking for: a wheelchair super store. I want to find a huge wheelchair store where we can go and she can spend hours picking out the chair that just right for her from a couple hundred models.

I contacted our health insurance company and learned they’ll pay a good bit toward the cost of a nice wheelchair after a $300 deductible is met. They don’t pay for hand controls, though.

While I explored the hardware options, my wife scheduled an MRI of her lower back.

When you get bad news, do what you must do to accommodate it. Only then can you take the third step and get on with life.

Get On with Life!

My wife has already started talking about how much easier life will be in terms of transportation and how nice it will be to head to the mall by herself or with our girls. Her philosophy is, “yes, I got bad news, but we’ll deal with and enjoy the good aspects of life.” And though she was sad about reality, instead of mully-grubbing at home last night, she went out with a good friend to see the musical, “Stomp!” (Thanks, Christy!).

Caregiver Tip: I think I remember reading in a work by Victor Frankl that one’s attitude is the only thing that cannot be taken away. Everyone chooses what they do with bad news. How one responds to bad news either traps you in a molasses of misery or empowers you to get on with life. I recommend accepting reality, taking care of the problems life presents and getting on with life.

There’s a section, too, about the Americans with Disabilities Act (ADA) which became U.S. law in 1990. The brochure explains the concept of “reasonable accommodations” which the law requireis of businesses that have at least 15 employees.

Back to the list of treatment options and self-help boosters. What if the person for whom you care is already doing everything on the lists to counteract MS-related fatigue but still he or she is fatigued? That’s MS. One caution jumped out at me: Pay special attention to your MS after an episode of unusual fatigue. If your other MS symptoms seem to be getting worse, let your doctor know.

Caregiver Tip: Learn all you can about MS-related fatigue because it is the most common symptom of MS. 75-95% of MS patients have fatigue and more than half say it’s one of their worst problems and one of the major reasons for unemployment.

I agreed, “Yes, she does look good!”

I embarrassed him a little so he clarified it a bit, “I mean she looks like she’s getting along well.”

Of course few see her when she’s not getting along well.

For many MS patients, each day is a new experience with Multiple Sclerosis. Last week I read one lady’s comment, “I don’t know when I wake up whether I’ll walk or ride (my wheelchair).”

One thing the literature seems to be fairly certain about is that MS is a progressive neurological disease. As an MS caregiver, the word “progressive” is the one that usually troubles me most. My wife has had MS long enough for me to see the trend. I don’t like it. The concept of “progressive” holds too much power over our future and it doesn’t share what it knows. Some days I fret about the future.

I read accounts of MS patients who have had the disease much longer than my wife. I fret when I do. And when I fret, I try to make it worthwhile. Like anticipatory grief, I want some good to come from the fretting. When I read about the possibilities “progressive” might hold for my wife’s disease process, I consider how we’ll handle them if they arise.

What if she wakes up blind one morning? We’ll deal with it. (From what I’ve read, I gather MS-induced blindness usually occurs in only one eye and is transitory.) What if she loses the ability to control her arm? We’ll deal with it. What if muscle spasticity makes it impossible for her to bend a leg? What if she loses the ability to … you get the idea. What ever happens, I believe I may have already fretted about its possibility and so (I hope) I won’t be caught off-guard.

If you can turn your fretting into something productive that helps you prepare for the future, the fretting can serve a useful purpose. If you fret to no avail, though, stop it.

Phillip Yancey, in his book, “Prayer”, writes about a phrase John of the Cross used to describe a feeling that interfered with his prayers. He called it Spiritus vertiginis. Yancey writes it’s “like vertigo that leaves the head spinning and the stomach churning.”

I think the best modern term for the ancient “spirit of dizziness” is anxiety. If you’re an MS caregiver who considers the future, you probably know anxiety. I feel it when I fret about the future without making plans. Anxiety usually arrives late at night when I’m tired and my defenses are down. I feel it, too, when something about my wife’s MS changes. A new symptom, the strengthening of a current symptom, a hassle over coverage for medications … these can all stir a little anxiety … until I make plans.

In short, if I fret about the future without using the fretting to prepare for the potential problem that troubles me, the fretting becomes unproductive anxiety. It can slip up on me and wear me down. It makes my spirit dizzy.

The best way I’ve found to counteract the anxiety is to think clearly about how I’ll handle the potential problem I’m feeling anxious about. Moving from feeling anxious to actually planning a proactive response, gives my concern about the future a useful purpose.

Caregiver Tip: It’s a rare MS caregiver who can avoid fretting about the future. MS is so unpredictable. When you feel anxious about the future, make a definite plan to handle the concern that troubles you and turn your fretting into something useful.

The phrase, “good grief,” grabbed my attention. What did it mean?

I knew grief was what one experienced when someone died. At the time I didn’t imagine that could be good. One lives long enough and learns that grief really is a good thing.

Books have been written about the grief process and I’ll not repeat the “stages of grief” material here. However, there is a type of grief that can play a large role in the life of a caregiver. That grief is Anticipatory Grief.

Anticipatory Grief is the grief one experiences before an expected event happens. Anticipatory grief helps prepare us for future loss. It’s a sense of sadness and other emotions that come before an event we know will hurt us in some way.

For one caring for an MS patient, anticipatory grief is what you feel when you consider the future and what it probably holds in terms of your loved one’s disease progression. I like numbers so I pay attention to the statistics in articles I read which describe the typical disease progression of Multiple Sclerosis. I don’t like what I read and I don’t like what the statistics seem to indicate for the future.

Don’t get me wrong. Because most of the time I am very aware of what a gracious universe it is in which I live. By nature, I’m an optimist about personal things. When I read about the promising research being done in the field of Multiple Sclerosis, I’m filled with hope. I look forward to what the future holds for the treatment of Multiple Sclerosis.

But occasionally, after reading an article about MS and the typical disease progression from relapsing/remitting to secondary progressive, a sense of grief about the future slips up on me and I find a few tears gathering behind my eyes … not enough to fall … but enough to know they’re there.

That’s anticipatory grief. And, believe it or not, it’s a good thing.

Caregiver Tip: It is important that a caregiver acknowledge the sadness one feels when considering the future. Anticipatory grief is a healthy response to a future loss.

After too much time without definitive answers, we found a neurologist at a university medical school. He ordered new tests, repeated some that had been done already, and then scheduled a spinal tap so her spinal fluid could be examined for oligoclonal bands. (I know “oligoclonal bands” is begging for a definition and I’ll try to provide one in a later post.) The neurologist found them and diagnosed my wife’s Multiple Sclerosis.

One of the biggest arguments my wife and I have had was during the hour’s drive home from the neurologist’s office after he told us she has Multiple Sclerosis. I was angry about the diagnosis. But I was even angrier because she seemed so relieved to know she had MS. How dare she accept the news so peacefully and gracefully!

“How can you feel good about this!” I yelled.

“Because I don’t have a brain tumor,” she replied quietly.

“I’ve been so afraid this was brain cancer,” she continued, “and that I was going to die before my girls grow up. I can live with MS. I’ll see my daughters grow up, graduate from college, get married, I’ll live to be a grandmother. I’ll be here to see it all and enjoy them.”

How do you argue with that?

Caregiver Tip: Multiple Sclerosis can stir deep emotions in a care giver and an MS patient. Good relationships are strengthened when both people are free to share their emotions, particularly when they feel very different emotions.

The New Testament is full of examples of the Apostle Paul’s physical ailments. I remember hearing of his “thorn in the flesh” when I was a child.

There wasn’t much for a first grader to do in south Texas in the 60′s. I liked to break the prickles off my mom’s roses and would occasionally stick the tip of one in my fingers. I imagined Paul’s “thorn in the flesh” must have been huge and deep if no one could remove it!

So What Was Wrong With the Apostle Paul?

Jim Kemp’s “must read article”, What Was Wrong With the Apostle Paul?, presents an excellent analysis of the Apostle Paul’s physical ailments and compares them to the diagnostic criteria for multiple sclerosis. He offers a convincing argument the Apostle Paul’s symptoms may very well have resulted from the relapsing/remitting form of multiple sclerosis.

If this diagnosis is correct, the life of the Apostle Paul is a great example of one who accomplished much in spite of the “on again/off again” symptoms resulting from his MS. If you care for someone with MS you know the frustrations of the exacerbations and relapses followed by the relief of the remissions. And always in the back of your mind is concern about when (or if) the relapsing/remitting form will become secondary progressive.

A good presentation of the different forms of multiple sclerosis titled, “Types of Multiple Sclerosis“, is available on the MultipleSclerosis.com web site. The article shows line graphs of the way MS progresses in its different forms. According to the article, on average, MS relapses occur every 2 years and the change from relapsing/remitting to secondary progressive occurs after 5 to 15 years. In the secondary progressive form neurological symptoms tend to worsen progressively instead of coming and going.

I digressed. One role of an MS caregiver is to offer encouragement. This can be difficult when an MS patient is experiencing a relapse or suffering progressive decline. After reading Jim Kemp’s article, “What Was Wrong With the Apostle Paul?“, and knowing how much Paul accomplished, I’ll read Paul’s letters with a renewed perspective on what one with MS can actually accomplish in life.

Caregiver Tip: Find ways to offer encouragement that are meaningful to the one for whom you care.