Living with Multiple Sclerosis

Cognitive Impairment: Coping Strategies

2006-06-09T13:57:00.000-07:00

Discovering that you have some degree of cognitive impairment can be a shock. For many of us, it affects our self-concept and feelings of self-worth. It is, however, just another aspect of the MonSter and, like getting a cane to help with walking, there are ways to compensate for some of the cognitive impairments most common with MS.

The first point is -- try not to lose your sense of humor! Not being able to remember what that thing-a-majig is called is not the end of the world. And laughter is healthy and healing. Never be afraid to laugh at yourself. If you laugh, others will find the cognitive changes less alarming and, therefore, feel more comfortable around you. And that's a good thing.

Make lists. Write down appointments, grocery lists, 'to-do' lists, even things like the names of people in your support group (or class or quilting group or ... ) or whatever else will give the needed 'boost' to your memory.

Use your brain as much as possible so that it stays active and flexible. Do crossword puzzles or other types of word puzzles (if you enjoy them). Get in the habit of carrying a 'memory book' (small notebook) and pen or pencil with you at all times. That way you always have the ability to make a note of something you need or want to remember.

Ask a trusted family or friend to help you by listening to your thoughts about solving a problem and to give you feedback on whether your thinking is reasonable and/or make suggestions on other ways you might think about the problem.

Many neuropsychologists also do training for people with cognitive problems. This is usually covered by insurance or Medicare. Don't be shy about asking for a referral. But before you do ... make sure you are ready and willing to work at it. The psychologist may well give you 'homework' assignments and doing them is a major part of helping yourself.

Above all... don't give up.

Related Topics: Depression and MS, Occupational Therapy

Technorati Tags: Cognitive Impairment, Thinking Problems, Multiple Sclerosis, MS, Occupational Therapy

Cognitive Testing

2006-05-24T13:54:00.000-07:00

Cognitive function is measured with a series of verbal (talking) and pencil-and-paper tests. They are not difficult to do and there are no 'right' answers. The point is to find out how well you can do on them. There is an expectation that NO ONE, with or without MS, will be 'perfect'. The tests are standardized to allow the professional administering the test to allow for issues like age or effects of medications.

The testing should be done by a professional with experience in testing people with MS. Usually that will be a neuropsychologist who has specialized in this field. Testing is done in an office (although you may be given some tests to do at home) and can take a few hours to a full day. Do NOT try to cheat on this! The whole point is to find out how well your brain is really working.

I have a somewhat 'contrarian' point of view on the issue of when cognitive testing should be done. Many authorities suggest that cognitive testing be done at the point when people with MS and/or their families become concerned about cognitive functioning.

I think that is sort of closing the barn door after the horse is out. You want to know, ideally, what the cognitive function was BEFORE problems showed up. That means getting tested as early as possible in the course of the disease.

The purpose of this is to get a baseline against which future changes can be measured. Just as your doctor wants to know, for example, what your blood chemistry is like BEFORE starting you on one of the ABCR drugs, so you (and your doctor) should try to establish what your cognitive functioning is like as early as possible in the disease. This issue can become very important in applying for disability benefits at some point in the future.

If you want to read more about cognitive problems in MS, below are links to three good articles on the issue. The first two are aimed at the general populace while the third is a more research-focused article and somewhat more difficult to read.

Cognitive Problems in Multiple Sclerosis

Cognitive Dysfunction

The Neuropsychiatry of Multiple Sclerosis

MS and Cognitive Function

2006-05-22T13:08:00.000-07:00

Cognitive function refers to how a person thinks, solves problems, how their memory works, their ability to concentrate.

Although the physical effects of MS are widely recognized by the general public, issues related to cognitive function are less so. However, approximately 50% of people with MS will develop some degree of cognitive dysfunction during the course of their disease. There is little or no relationship between the level of physical disability and degree of cognitive impairment.

Cognitive impairment may even be the first symptom to appear. And, cognitive impairment is a significant source of disability. Some sources even report it as the most common reason for people with MS becoming officially 'disabled' to the point that they receive disability benefits.

Not all people with MS develop problems with cognitive functioning and those who do may have a variety of different problems. Word-finding difficulty is one of the most common problems reported. Other common difficulties include issues with memory (very common) as well as problems with planning, organizing, prioritizing, problem-solving, concentrating, or abstract reasoning.

The initial signs of cognitive dysfunction may be as slight as having problems finding the right word in conversation or remembering why you went to the store. Since that sort of thing happens to nearly everyone (with or without MS), not only do the people with MS tend to discount its significance, but so do their families and friends.

The affect of MS on cognitive function is complex. A primary issue is certainly the damage to the myelin and brain cells that is a part of the disease. Since cognitive function is centered in the brain, it makes sense that any sort of damage to the brain tissue could result in cognitive problems. Also, depression, fatigue and stress may all compromise cognitive functioning. Since all of those are common among people with MS, cognitive functioning gets a sort of 'double-whammy'.

I will write more about this issue later, focusing on cognitive testing.

Related Topics: Drug May Slow Down Multiple Sclerosis, Epstein-Barr Virus May Trigger MS

Technorati Tags: multiple sclerosis, cognitive function, MS

Gratitude: Friends and Family

2006-04-06T01:45:00.000-07:00

I'm lucky to have some of the most wonderful, amazing friends anyone could ask for. I have friends in many parts of the States and also in Mexico and Canada. As for my family, although there are a couple of less-than-satisfactory members (like most families), for the most part my family is warm and generous and fun to be with. The only problem is that they all live in Texas!

Don't get me wrong. I was born and raised in Texas and there are many wonderful things about it. There must be. I'm the only one in all of my extended family who left! Now that I'm mostly retired, visiting them is much easier. And I'm even thinking about moving back to Texas. After 25 years in Portland, Oregon, though, it will be a bit of an adjustment!

Related Topics: Toxic Friends, Preparing for Retirment

Technorati Tags: friends, family, relationships, texas, portland, retirement

Gratitude: Perfect, Peaceful Surroundings

2006-04-02T01:42:00.000-08:00

As I re-read my last entry I realized that some of you may be picturing me in one of those giant, 40 ft long monster RVs with all modern conveniences.

No. My RV is a 1991, 25 ft long (and I would like to go smaller still). I spend most of my time outside, sitting under an awning over a concrete patio beside the RV or taking walks on the beach or finding the perfect palm tree to sit beneath. Sometimes I even sleep outside on the patio (it's where I'm sitting to write this!).

There are virtually no flying insects here, which is part of what makes sleeping outside possible. So that's another thing to appreciate. There is something sort of delicious about being outside when everyone else has gone inside and closed their doors. I'm only about 50 yards from the ocean and sometimes (if the moonlight is just right), I walk down to the beach late at night to watch the phosphoresence of the waves. They really do glow and sparkle in the night. Not always, though, which makes it a special treat to see.

I am also thankful for my dog. He is my traveling companion, my confidant, my guard (he's trained to get help if I fall). Cody (well, actually Kody, I guess -- he got the name because everyone thought he looked like a tiny
Kodiac bear as a puppy) is a 15 year old herding dog mix. Heavy on the border collie, lighter on the blue heeler and kelpie.

I didn't want a dog. But somehow, I let myself be talked into it. I had only had MS for a couple of years, was still in the phase of expecting major disability at any moment. Everyone thought I needed a dog; I'm not quite
sure why. But they were right and so I have something else to be grateful for.

Related Topics: Success Over Stress (Video), Work and Multiple Sclerosis

Technorati Tags: MS, pets, gratitude

Gratitude: Life and Choices

2006-03-29T01:34:00.000-08:00

This week I said I would write about what I have to be thankful for...and, hopefully, some of you are sharing your thoughts as well.

Which brings me to, in a round-about way, something that I am very thankful for. I am currently living in Mexico in a small village just north of Puerto Vallarta. It is amazingly beautiful here, not only visually but the sounds! I wake up every morning to the sounds of tropical birds and the waves of the Pacific Ocean. I get up when I feel like it (usually by 6:30 or so as my faithful dog needs a walk on the beach by then). And my day is pretty much whatever I want it to be. And, yes, I am doing this on my Social Security disability payments. And even being able to save a bit for emergencies. So, my "thankful for" is for being in such a beautiful place and for all the friends I have here.

Unfortunately, Internet access here remains primarily through use of an "Internet cafe". Granted that there are several options in the village but all are at least a 3 block walk from my RV (yes, I'm doing this in an RV that I drive myself). And some days that just isn't possible for me. When I do get into town to the Internet, 2 hours is about my maximum endurance for my WebMD message board, this blog, and staying in touch with friends and family. Two hours goes fast!

So...sometimes I don't get around to reading all the blog entries, and I'm sorry for that. A few of you have posted questions on the BLOG...that isn't the place for questions for me. Go over to my message board on MS.

Well, I've travelled a ways from what I started with but I guess I can continue the 'thankful' theme in the next post.

Related Topics: Meditation Balances the Body's Systems, WebMD Integrative Medicine Center

Technorati Tags: multiplesclerosis, thankful, MS

There are worse things than MS

2006-03-26T14:32:00.000-08:00

Last week, a very delightful young man of my acquaintance had a psychotic break. He became increasingly paranoid and confused. He is now in a hospital. And his future is grim.

Working with him for several days really made me stop and reflect on my own illness. From my point of view, it is far less limiting than the schizophrenia that is his most likely diagnosis. It made me look at all the ways I am lucky, so I decided to start writing some of them down. And I encourage you all to spend some time thinking about your own good fortune.

So ... I am still able to think rationally and in an orderly fashion and make reasonable decisions. I have wonderful relationships with my friends and family. I am free of delusions, hallucinations, paranoia. All of these are things that my young friend may never fully experience again.

He may be spared some of my physical problems but perhaps those are less important than they seemed a week ago. I am still able to walk for several blocks and that makes so many things possible. I can plan and cook my own meals (although I am a bit dangerous with a knife, so lots of chopping of things is to be avoided!). I can read and understand most things I need to.

Now it's your turn. What do you have to be thankful for?

Related Links: Brief Psychotic Disorder, Psychotic Disorders, Boost Your Health With a Dose of Gratitude

Technorati Tags: Schizophrenia, Psychosis, Paranoia, Gratitude

Dependence and independence, Part 2

2006-03-22T23:31:00.000-08:00

One issue that I obviously left out of my last post on this topic is the issue of... well, I guess of overuse of others. I know I have had the experience of a friend or family member leaning too hard on me, asking for support I felt unable to give. And clearly, that is to be avoided.

No, I am not contradicting what I said yesterday. If I am the one asking for help, then it is clearly my responsibility to ask carefully. I don't ask my friend with three pre-schoolers to clean my house. But it is probably fine to ask her to pick up a couple of things for me if she is going to the store anyway.

I try to give considerable thought to what I ask from whom. I do not want to burden my friends and family, but I definitely need their help. So a big part of my responsibility is to be thoughtful, in all meanings of the word. It's obviously in my best interest on many levels not to exhaust my support system.

Before I ask for help, I do a mental exercise. I try to match the request very carefully to the recipient. I try to piggy-back my requests to what folks are doing anyway. I ask myself whether there are alternatives to asking for help. For instance, do I really need to have or do whatever it is? Is it important enough to burden my support system?

It's not a perfect system, but it seems to work for me. And, one interesting thing has happened to my friends and family. Not only do they now anticipate things that I might need help with ("Do you need me to pick up anything for you?"), but they have learned that it really is OK to say NO. And they do. Often they will try to help me figure out another way ("I'm not going to the grocery store until next week, will that be soon enough?"). And that process stretches both of us and makes us feel like problem-solvers. And, as a certain TV personality says, "That's a good thing!"

Related Topics: Can Alternative Medicine Help Your MS?, MS In The Workplace

Technorati Tags: multiplesclerosis, livingwithmultiplesclerosis, MS

Dependence and independence

2006-03-22T20:30:00.000-08:00

Finding a healthy balance between independence and dependence is a constant struggle, not just for people with MS but for many people with chronic diseases.

In many western cultures (like the US and Canada), the struggle is complicated by the high value placed on independence by the cultures. Somehow, to be less than fully independent is often viewed as being less than fully competent, fully a person.

After 57 years in the culture and 17 years with MS, I think my own attitude toward these issues has shifted from the mainstream. For me, one of the greatest acts of independence is asking for help when I need it. "What?", you are saying, "That doesn't make sense." I disagree. Humans are infinitely varied. There are things that I can do that others can't. And there are things others can do that I can't. What's wrong with admitting that and helping one another out?

Offering, and accepting, help is one of the most human acts. There is a very special connection that is made every time one person reaches out a hand and that hand is grasped by another. I could even make the argument that to ask for help is to give another the opportunity to experience the connection and is therefore a good deed.

Related Topics: Multiple Sclerosis Health Center, Multiple Sclerosis Support Group

Technorati Tags: multiplesclerosis, livingwithmultiplesclerosis, MS

Advice: For our own good?

2006-03-19T11:34:00.000-08:00

Have you ever heard that phrase from others? Or found yourself using it when speaking to others? I came up with this topic because I found myself thinking this very phrase about a friend. When I 'heard' myself, I had to stop and think.

As a woman with MS, countless friends and family members have felt the need to tell me things or offer advice 'for my own good'. In point of fact, their messages have rarely actually been in my best interests, although I'm sure that was (usually) their intent. But had I listened, I would have missed some of the richest, most fulfilling moments of my life. The comments were usually based on a belief that my limitations (that is, my MS) should be the primary deciding factor in how I structure and live my life.

I disagree. MS is a fact in my life. So is my grey hair and my sense of humor and my smile and my age and... Well, you get the idea. Yes, I have to consider the fact that I have MS when I make decisions about a huge variety of things. But it is only one 'fact' about me and the world I live in. I would be selling myself short if I put it at the top of the list or allowed my friends to limit me 'for my own good'.

Related Links: Vacationing With Multiple Sclerosis, Why More Women Get Multiple Sclerosis

Technorati Tags: MS, multiplesclerosis, livingwithMS

Silent Migraines

2006-03-16T11:33:00.000-08:00

This is a broad name for migraines that do not cause pain. They seem to be reported by some people with MS and the visual symptoms sometimes make people think that they are having an episode of optic neuritis.

There is some debate in the medical literature about whether these are even appropriately called migraines. Regardless of the eventual resolution of that debate, having a visual or silent migraine can be very disturbing...especially for folks with MS who may fear that they are having ON. Fortunately, the symptoms usually last for an hour or two or even less. And, unlike ON, there is no pain associated with silent or optical migraines.

If you want to read more about this, click here.

Related Topics: Can Alternative Medicine Ease Your Pain?, Coping with Migraines

Technorati Tags: migrainesandms, silentmigraines, opticalmigraines

Your symptoms: MS or not?

2006-03-14T11:30:00.000-08:00

There are a lot of folks out there with symptoms that COULD be Multiple Sclerosis...or not. This is some general advice for those of you in that situation.

First of all, start keeping a log of your symptoms, including how severe and anything that makes your symptoms better or worse. That will help you both in figuring out ways to live with them and, by summarizing your log, you will have a clearer picture to share with the doc next time you see him. Limit your summary to a single page so that there is time to review it during the appointment.

With MS, some people present with symptoms before they have changes detectable by MRI. Since most neurologists wait for the appearance of lesions before diagnosing MS, that puts folks in a sort of never-Neverland.

If you are in that situation, you have several choices at this point. First is to wait and return to the doc in six months or a year to see whether the MRI has changed when it is repeated. Another is to seek out an MS specialist.

Folks who specialize in diagnosing and treating MS are usually pretty good diagnosticians overall, and it is definitely worth seeing a specialist if MS is a possible diagnosis. Another option is to talk with your doctor about whether there may be meds that will help with your symptoms REGARDLESS of the final diagnosis. There are several meds out there that might be helpful -- ask.

Related Topics: Multiple Sclerosis Health Center, MS Assessment (sponsored)

Technorati Tags: multiplesclerosissymptoms, diagnosingmultiplesclerosis, MS

Healthcare in Mexico: Different Approaches

2006-02-12T09:36:00.000-08:00

The whole attitude toward health care is different in Mexico. I suspect that most Americans and Canadians view Mexican health care as somehow sub-standard. I've been here long enough to come to view it as different but not particularly less-than what I'm used to in the US.

So what are the differences?

Well, cost is a big one. A doctor's visit here costs $5 - $10 usually, less than the usual "co-pay" in the US. Many more medications are available 'over-the-counter', meaning without a prescription, here than in the north. And those two factors alone make health care more accessible here than in the US.

Availaibility of doctors and hospitals is another big difference but in the opposite direction. Last year we had a physician in the village but this year we don't. That means either taking the bus or driving or taking a cab to the nearest doc -- who happens to be about 30 minutes away. Fortunately, the bus service is excellent and the roads are pretty good, so practically speaking, the distance doesn't turn out to be much of a barrier. The nearest hospital is about 20 minutes away but no bus goes there so, for me, it is essentially inaccessible. But there are several hospitals with labs, MRIs, etc available in Puerto Vallarta. That's about an hour bus ride for me.

Another difference is the issue of the type of treatment. The Mexican doctors I've met seem much less inclined than docs in the states to prescribe drugs as their first approach. They seem more likely than most of their northern counterparts to look carefully at lifestyle issues and start there.

Obviously these differences are not universal; they are just what I've experienced. Specialists are less available here, so I am still returning to the US to see my neurologist. I could also go to Guadalajara for an MS specialist, but I'm sort of used to my doc in the states. I've been seeing the same one since my diagnosis 17 years ago. I'll probably keep seeing her for the time being.

Related Topics: MS in the Workplace,How Does Geography Affect MS?

Technorati Tags: multiplesclerosis, healthcare, mexico

MS Means Managing Resources Wisely

2006-01-30T09:39:00.000-08:00

We had a surfing contest here in Mexico last week. There were a couple of bad "crashes" among the surfers, although none as bad as the one last year that resulted in a broken neck.

It made me stop and think about how unpredictable life is. I tend at times to do a bit of futile 'if only' thinking about having MS. But anyone can have a life-changing event at any time.

Be it an accident or a disease, humans are very vulnerable to the unexpected. One of the things that I always encourage people to do is to invest in disability insurance. Face it -- disability is more likely than an early death. So disability insurance is more important than life insurance for most people. Like me, you could 'wake up' one morning with a disease like MS or be in a traffic accident and as a result be unable to continue your profession.

And, no, I neither sell nor own stock in insurance! But most people don't realize how long it can take social security disability to kick in or how few other resources most of us have to cope with a prolonged period of unemployment. Especially not when that lack of income is accompanied by steep medical bills.

I have often given this same message to the nursing students I taught. And many of them were in their early 20s. I don't know if any of them took my advice but it's something I want you all to think about. You can save yourself and your family a lot of potential grief by being prepared.

Enough. I really do NOT sell insurance!

Medications, MS and Travel

2006-01-25T09:34:00.000-08:00

For those of you who don't know, I spend the winters on the coast of Mexico and that's where I am now. Thanks to the wonders of computers, I can keep up on issues and developments regarding MS even though I am many, many miles from a medical library -- and the nearest one is Spanish-only!

Sayulita used to be a small seaside village. In the past 10 years or so it has unfortunately been "discovered" -- with the result that it is now much more of a bustling small town rather than a pueblo. Many of the locals have sold their homes to Americans and Canadians. It's not easy to learn Spanish here because you don't actually need it. English is understood and/or spoken widely.

Health care is very different here than in the US and that's one of the challenges of traveling here with a chronic disease. And with MS particularly, the challenge is being able to get and store refrigerated medications here. My prescription drug supplier won't ship things to Mexico. So I have to stockpile a several-month supply of my meds and then make sure I can store it appropriately as I travel south. I travel in a small RV, so that is less of a problem than it might be.

And, as an FYI for other MSers out there, if you are taking Avonex, you can request the 'old' form (not premixed) of it if you are at all concerned about having adequate storage. It is not ruined by a short time at room temp, unlike the premixed version.

More later ...

Related Topics: Travel Related Illness, Packing for a Healthy Vacation

Technorati Tags: multiplesclerosis, MS, travel, avonex

New Year's Resolutions and MS

2006-01-03T12:52:00.000-08:00

For all of us with MS, an important part of our work is taking care of ourselves ... if we don't, there is nothing left to give to others and little pleasure in our lives for ourselves. So, our very first New Year's resolution should be better self-care.
Now, most people with MS have figured out the basics like "Don't overdo", but that's so general it doesn't really help a lot. What we have to do is look at our lives, figure out how we are using our energy and what's really important, and then we have to make some tough decisions. Every time we use energy, we are risking the very real possibility that we won't have enough energy left to do the things that really matter.

How do we limit the energy-waste that is so costly to us?

THINK. It is all too easy to agree quickly to take on one more thing. One more task, chore, even party. So, before you say YES, think about how that new whatever fits into your overall life. Really think. Practice saying, "I'll let you know ..." to unexpected invitations and requests, giving you a chance to figure out what you really want and need to do. Don't be afraid to say "No".

PRIORITIZE. Houses don't have to be spotless. Do you dust daily? How about doing it once a week. How often do you really need to vacuum? Yes, a vacuum cleaner is an "energy-saving device", but pushing around (even the self-propelled ones) takes energy. Again, think of cost and benefit. If you are used to cleaning thoroughly several times a week but are then too exhausted to do anything but go to bed, perhaps you can "buy" yourself more meaningful time by limiting your cleaning to shorter times, less often.

GET REAL. Don't stand when you can sit, don't walk further than you have to. This one is hard because most of us are used to activity. And I'm not saying don't exercise, because exercise is important in maintaining optimal health. But, honestly, walking all over the grocery store isn't particularly effective exercise and it uses energy that could better be used in planned exercise. Don't be shy about using one of those scooter-chairs with a cart attached to do your grocery shopping. Yes, it's hard to do the first few times, but it's well worth making the effort to get over your discomfort with "looking disabled".

SURF. Use catalogues or shop online. OK, for most of us, that won't work for groceries (although in some cities, you can order groceries online and have them delivered to your house -- for a fee, of course!). But for that birthday-wedding-anniversary present, there is no need to exhaust yourself mall-crawling. And there is not much that isn't available online at this point.

Later this week, I want to write more about the very important skill of asking for help. It's not easy for many of us, but it can be such a life-saver.
Take care, all ...

Related Topics: Rate Your Energy, Modifying Your Home When You Have MS