Cognitive Skills and Driving in MS

How do you know if you should or shouldn’t be driving?

Research has found that information processing and visuospatial skills are predictive of driving performance among persons with MS. Cognitive tests, specifically the Symbol Digit Modalities Test (SDMT) and the Spatial Recall Test (SPART 7/24), may be useful as screening methods for identifying the potential impact of cognitive impairment on driving (Schultheis, 2010).

However, Dr. Akinwuntan, a professor at Georgia Health Sciences University, says that the current practice is to administer 15 to 22 different tests that can last up to three hours and cost as much as $450 to patients with MS who need to be evaluated for driving appropriateness.

Read this post in its entirety:

New Study to Test Driving Ability and Cognitive Function in Multiple Sclerosis

Cognitive Reframing and Stress Reduction

When faced with stress, effective coping skills are your way to staying above the fray.  Stress itself is not necessarily bad.  But an individual's perception and respond to a stressful event is very important.

General stress management techniques include: eating a balanced healthy diet; keeping physically, socially and intellectually active; taking prescribed medications as directed; getting adequate amounts of sleep; and resting if fatigued.  Strive for cardiovascular health.

Maintain a sense of humor and positive attitude.  Be aware of lifestyle habits that can negatively impact your physical and mental health.  Take advantage of cognitive and/or physical aids and strategies when needed.  Cognitive reframing can be one of the most effective stress management techniques available.

Read this post in its entirety:

Stress and MS: Cognitive Reframing and Stress Reduction

Carnival of MS Bloggers #111

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Coping, Cognitive Issues, and Social Security

NEUTRALIZED
by Maris Mohr

I think I woke up this morning,

or did I sleep at all? . . .

The mirror reflects empty space –

nothing to reveal my wondering gaze.

Even in a room full of occupied seats

I feel unconnected to everything

Drifting ~~~~ between what I think

I want, need

Ending misunderstood, rejected

Feeling dejected, facing a raging wall of

why it can't be

Giving in, my oblivion strengthless

Arguing on no longer in my core

Knowing there's no point in disrupting

MY equilibrium, OUR harmony

Neutral being the safest gear for my survival. . .

© Maris B. Mohr
22.3.2012

The MonSter is Real!

by CJ of my MonSter stories

Unlike a bad dream, it doesn't come only when I'm sleeping, it doesn't go away when daylight comes, and even when my mind is occupied with hundreds of other thoughts and I'm busy with the "stuff" of living, working, and trying to care for my family, it lurks about and, without warning, it attacks, disrupting my cognitive and physical functioning, oftentimes bringing everything to a sudden screeching halt.

The problems are real, the pain is real, the symptoms are real...even if you can't see them.  Unlike a common cold or minor injury, it doesn't happen and then get all better and go away.  The nerve pain that accompanies an attack is excruciating and unlike any other type of pain.  If you've ever had a bad toothache, just try to imagine that type of pain occurring in any other part of your body.  It can affect any body part or function at any time for any length of time.  The numbness, tingling, and weakness that often occur can mimic signs of a stroke and can be very frightening and debilitating.

I'm thankful that, at least for now, I have the relapsing-remitting type, where the MonSter attacks and one or more areas of cognitive and/or pyhsical functioning is affected for a period of time, then gradually resolves, although often not completely, so that I'm left with some residual pain or loss of function.  Some of the symptoms I've had include vision problems and eye pain, vertigo and imbalance, difficulty walking, confusion, disorientation, difficulty processing information, slowed thinking, difficulty with speech,  memory loss, numbness/tingling/weakness, burning sensations, spasms, reduced fine motor skills such as writing, unexplainable indescribable fatigue that can strike and suddenly render me immobile, pain - including what I describe as extreme "lightning bolt" type pain that takes my breath away and can make me collapse onto the floor.

Please understand, although altering lifestyle and making some changes can help, these cannot cure MS.  Rest is not a cure.  Less stress is not a cure.  More vitamins or supplements is not a cure.  Better weather is not a cure.  Currently there is no cure.  There are several treatments being used that seem to slow down the progression of the disease and/or reduce the severity of the attacks.  In my opinion, most of the treatments that are being used are experimental at best.

It is my hope that by writing about my own personal experiences, readers will have a better understanding of MS, and some might also better understand me as a person and perhaps have just a little more tolerance and compassion.  I would not wish this MonSter on anyone, but MS is no respecter of persons; it could choose you or one of your loved ones next.

What? How?

by CJ of my MonSter stories

Most folks in the "civilized" world are familiar with the objects in the above photograph. And most people would not find the objects the least bit intimidating or frightening. I've never had a problem with them...until yesterday. You see, yesterday I was feeling a little "off" from the time I awoke and got out of bed. I was a little unsteady on my feet, and I noticed I was having some difficulty keeping my thoughts together and I was having trouble making even the smallest decisions.

After taking much longer than usual to make my bed, put a load of laundry in the washer, eat breakfast, and wash dishes, I knew I needed to get a shower and get dressed. But I was a little leery of trying to stand long enough to finish my shower, so I decided it might be best if I just took a bath instead.

Well, everything was going along okay and it actually felt good to soak for a few minutes after bathing. The problem arose when I decided it was time for me to get out of the tub. I sat and stared in front of me at those shiny silvery objects that are shown in the photograph....it seemed like it was for an hour, although it was perhaps only four or five minutes. As I sat and stared, I became a little frightened as well as frustrated...because I could not remember what I needed to do in order to drain the water from the tub.

No, I haven't suffered a traumatic brain injury...no, I don't have Alzheimer's disease (as far as I know)...no, I didn't have a stroke, etc. I was having an acute attack of my brain "short-circuiting", something that happens to me fairly frequently as a result of having MS (multiple sclerosis). These particular episodes usually don't last very long, but I do have some permanent long-term as well as some short-term memory loss. The attacks can occur at any time, but tend to be more frequent if I am fatigued, emotionally, or mentally stressed, too hot, too cold, or have any type of illness going on. This is just one of the many symptoms I have with this cursed disease.

Why am I telling you this? Because I want to help you understand what is happening to me...why I am constantly keeping lists or a journal, why I sometimes seem to be staring blankly into space, why it sometimes takes me longer than you think it should to answer a question or complete a simple task, why I say "no" or "not now", or "I can't" a lot more often than I used to. On the outside I may look "fine", but on the inside I am often a "tangled mess of misfirings and disconnected electrical impulses".

So, if you can accept me as I am with all the changes that are now happening and doubtless will continue to take place (unless there is a miraculous cure), I welcome you into my life. If not...if it frightens you or it's too much for you to bother with or handle...then you will probably become suddenly silent, quickly disappear, walk out, or just slowly back away as many others have already done. Either way, I thank you for listening to me.

On Tuesday I Met The Bogeyman

by Laura of Shine the Divine

On Tuesday I met the bogeyman

she’s a thirty-something woman
thick dark hair cascades across her shoulders
surprisingly strong on her frame
strong enough to carry the weight of
God knows how many wounded stories.

Glasses shield kind brown eyes
from luckless tales that pour across
her utilitarian metal desk dripping
gushing onto her young loving lap
day after
day after
day
I wonder
what’s her story?

Anger, frustration, sadness, grief, expressed through sarcasm, I admit this is where I am sometimes, sometimes lately. Sometimes it gets a little crowded, a little ugly and uncomfortable in my mind. I’m aware that this tumult is happening, arising from fear, from disappointment. I recognize these emotions for what they are and see what is inside, what is outside, what is changing, oh everything is always changing and that is a comfort. But still, I get lost in myself sometimes. I momentarily forget that it isn’t all about me, well of course not. Life is about US, and so much more. I know this, I do, and still some days, some days lately, I lose my way; tense, snarky, suffocating thoughts spin round and round and choke me, filling my throat with words I should NOT say, come out garbled anyway, until I finally remember; just exhale and listen. I hear my own agitation ricochet, a pinball ringing bells, lighting lights, through a maze of words, words, words, so much noise in this dark cave my mind can become, points I score are pointless, they only create more tension so that I must release the spring-loaded thoughts; just exhale. I inhale fully and then exhale again, a deep sigh of forgiveness. Compassion, love gratitude, rush in with a tide of tears. I’m only human. And only human is enough. It is all I know how to be. It is all that I am, that we are. And yes this is about US, a story told from my perspective on a particular day, but as I said, it isn’t all about me, not really; this is a story about life, it is about all of us, and so much more.
Inhale…

First timer at the Social Security office; my mind chasing its own tail, looking at all the other people in the waiting area, anger flashed “What am I doing HERE?” My husband went up and took a ticket. We sat listening to the numbers being called, a grayed—where is the hand sanitizer, I know it is in my purse somewhere—kind of space. The ticket made me think “bingo hall,” not that I’ve ever been in one, but I’d never been in a Social Security office either. Three rows of chairs lined up, linked together, no tables —was our number "A34" lucky??? And a large silent TV with S.S. info-mercials, alternating English/Spanish subtitles, a continuous "easy-listening" garageband music loop that I was certain was playing subliminal messages ("get out while you still can") or would put me in a coma from utter repetitive boredom ('irritating-listening" for me). All the while denial, that sleeping dragon stirred —“I don't belong here with these three pony tailed, war vets, these two mothers with runny nosed toddlers wrapped around their plump legginged legs —round eyed cuties playing peek-a-boo with the strange looking lady with the freakish uncontrollable random head shake in the fold up wheelchair (could easily be mistaken for an oversized umbrella stroller), the old man who looks so tired and doesn't seem to understand what the annoyed woman in the cut-out window keeps repeating to him (repetition a common theme in the room), the twenty-something kid who couldn’t possibly have showered today or washed his jeans in at least a month if ever. It wasn't that crowded —and then one little girl forgot to be shy and started talking to her Mamma about her cell phone (her mother's, but she was pretending to be grown-up), and I heard my toddler voice. My MS impaired toddler voice thrown ventriloquist style escaping through her tiny rosebud lips. Maybe she was two and a half, three tops; she was easier to understand than me, the lady with the freakish uncontrollable random head shake in the fold up wheelchair (could easily be mistaken for an oversized umbrella stroller) —and tears leaked out of my eyes, slid down my face, rained on my jeans, softening them so seeds of compassion could embed themselves in my soul-soil; tender blossoms of love at the ready, just below the surface.

I am every single one of these individuals. They are me; we are ONE. We are all living life, decaying hollowed hallowed tree trunk people, silvered, surviving through challenges we didn't expect. We are humans who need help. I am a human who needs help. I worked for as long as I could, except when my kids were really small. I can't any more. Not outside our home. I do what I can when my voice allows over the phone, I'm a good listener. I create meditation podcasts that I offer for free, because it is a struggle for all of us living with chronic illness first to be able to get to a class, second to be able to afford it, and if someone has a little extra to donate, that's great, I appreciate it but don't really expect it.

I paid into the system, pray into heaven right here, the Holy Essence residing in my heart. With our first child about to go to college in the fall, and the high cost of medical care, our family, needs income from me too. We are a multi-illness health insurance company’s worst nightmare family, and arch enemies apparently considering all the headachy “NO we still don’t have any other health insurance than yours. NO our 15 year old daughter doesn’t have her own top secret health insurance coverage beyond what we her parents provide through your company. What do you mean you will cover the injectable medication but not the syringe and we need a separate prescription for the syringe that you won’t pay for? How exactly am I supposed to give this medication to my wife that she was supposed to have last weekend but you didn’t send it until now-sans freakin’ syringe???” phone calls. These are just a few highlights from this past week’s health insurance shenanigans. I'm sure this is familiar to many of you too.

I hope that my Social Security Disability Insurance application won't be rejected. And I understand that it might be. That happens to a lot of SSDI applicants. People I know, and they have to drop their dignity again, go down to the dingy office in their city or town again, and sometimes a third time again; months and months and months of waiting to be judged "sick enough" and deserving of the money that they paid into this failing system. It has been three years since my official diagnosis; four years since I was last able to actually go to work. So for all of my family members and friends who have been telling me to go do this thing (“its so easy, they’ll help you, I’ll drive you, you are entitled”) I did it. I pulled together the courage, swallowed my pride and with my husband pushing my chariot rolled through the damn door. Ironically one of the blue electric handicap accessibility door buttons didn't work, so one of the vets opened the last door into the building for us. Was it a sign?? No, this happens all the time.

You see, I wanted to believe that I would get better, be able to drive, work again at a real job. For the past three years I really, really wanted to believe that, but remission for me is like the tree bark in the photo. Mostly I'm still standing, I even look good some days, but there are missing pieces in the myelin that is supposed to protect my nerves and carry messages from brain to muscles and vital organs, and I'm not going to be how I was. I think I lived through THOSE remission years already, and now there is too much damage to repair after new lesions form or old ones get bigger. So, Ok, I get it. It isn't going to happen. That part of my life is over. Done. Gone. This is how it is today. Tomorrow will be different. And so it goes.

On Tuesday I met the bogeyman
she’s a thirty-something woman
thick dark hair cascades across her shoulders
surprisingly strong on her frame
strong enough to carry the weight of
God knows how many wounded stories.

Glasses shield kind brown eyes
from luckless tales that pour across
her utilitarian metal desk dripping
gushing onto her young loving lap
day after
day after
day
I wonder
what’s her story?

I left heart broken with grief swirled into twisted relief. Not bitter, not sweet, metallic; perhaps that’s the taste of it? I don’t know how long we’ll wait, if I’m sick enough to qualify for benefits. What strange words to write in the same sentence, “sick enough" - "qualify" - "benefits.” But the first part of the deed is done.

We went out for Indian food at my favorite buffet to "celebrate" this big step toward fuller acceptance of our shared life. We were hungry and it is on the way home. The waitress gave me her chai recipe (I didn’t know until I complimented her on how much I love it, drinking my second cup, that she is the one who makes it); hers is the best in town. If only I could walk downstairs, I'd make myself another cup. I think we have the ingredients. Chai in Hebrew means Life.

I am ever so grateful for the beautiful souls surrounding me in that waiting room, softening my own soul-soil, planting seeds of love, grateful for the bogeyWOman who helped me release my fear through her kind demeanor (because that is what pride often is, fear hiding behind pretentiousness.) Here's to Chai, just as it is, Holy and torn through with gaping holes, difficult and suffused with kindness, imperfect and whole. This is our story.



This concludes the 111st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 12, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 10, 2012.

Thank you.

Comments for this post.

Steroid Brain Fog and Feeling Downright Dumb

When was the last time your joints felt all loosy-goosy?  If you’ve got rheumatoid arthritis, that’s probably not something which is in your near-term memory bank. 

When was the last time your mind felt all loosy-goosy?  For me that is right about now as I’ve got steroid-mush brain.

Rheumatoid arthritis causes stiffness, swelling, and discomfort.  It can also cause brain fog all on its own.  But this is different.

Due to a recent relapse of my MS, I was given very high doses of steroids by intravenous (IV) infusion, pumping the equivalency of 1000mg of prednisone each day for 4 days.  Yes, a full gram of steroids straight into the vascular system.  Yikes.

If this sounds drastic, it is really.  But it certainly shuts down the inflammatory process in the body.  Not only does it stop my immune system from attacking the lining of my nerves, it also brings down the inflammation caused by my RA.

The result?  I currently do not have a sore joint in my body.  It is very nice.  My joints are flexible and loose.  Whoohoo!  I keep wiggling my toes and swinging my knees just to prove it.

So this sounds wonderful, you say.  There’s got to be a catch.  Well, there is.

Read this post in its entirety:

Steroid Brain Fog: What's Your Experience?

Heat Slows the MS Brain

My closest loved ones know that my brain is worthless mush when I get overheated.  I turn into a seemingly less than intelligent individual.  I can't think straight.  I can't make decisions.  Everything slows down to the consistency of molasses.

Now there is research which proves my MS is to blame for this heat-inspired drudgery.  But, you know, I already blamed MS because my legs become severely weakened in the warm weather as well.  I end up walking through quicksand with 50lb weights attached.  Quite a feat of strength, I must say.

Below is the announcement coming from the American Academy of Neurology.  I really wish that I could attend the annual meeting which happens to be in Honolulu this year.  Anybody wanna send me?  Pay my way?  Hopefully the heat would not slow down the brain too much.  :)

~~~~~~~~~~

Warm Weather May Hurt Thinking Skills in People with MS

ST. PAUL, Minn. – People with multiple sclerosis (MS) may find it harder to learn, remember or process information on warmer days of the year, according to new research released today that will be presented at the American Academy of Neurology’s 63rd Annual Meeting in Honolulu April 9 to April 16, 2011.

“Studies have linked warmer weather to increased disease activity and lesions in people with MS, but this is the first research to show a possible link between warm weather and cognition, or thinking skills, in people with the disease,” said study author Victoria Leavitt, PhD, with the Kessler Foundation in West Orange, New Jersey.

For the study, 40 people with MS and 40 people without MS were given tests that measured learning, memory and the speed at which they processed information. Those people with MS also underwent brain scans. The daily temperature on the days the tests were taken was also recorded.

The study found that people with MS scored 70 percent better on thinking tests during cooler days compared to warmer days of the year. There was no link between thinking test scores and temperature for those without MS.

“With more research, this information might help guide people with MS in life decisions and their doctors with clinical treatment. Scientists may also consider the effect of warmer weather on cognition when conducting clinical trials,” said Leavitt.

The American Academy of Neurology, an association of more than 22,500 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, brain injury, epilepsy and Parkinson’s disease. For more information about the American Academy of Neurology and its upcoming Annual Meeting, visit http://www.aan.com.

Carnival of MS Bloggers #54

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Living a Normal MS Life and Cognitive Reserve

PE Class, Wildwood Flower, and Buttons
by Kmilyun at Bifurcate in the Road

Augh you might be asking what in the world do adaptive PE, flowers, and buttons have in common. The short answer is me LOL.

Hang on to the edge of your chairs now because this is going to be one of those real exciting blog posts that you surly spent hours awaiting!

First off I could take paragraphs to go into all the things I can no longer do. Or pontificating on all the stuff you can do and I can not or things I can do and you can not. Blah blah blah it is all lip service no? (in this case keyboard hitting).

Seriously, I can not be the only person with MS that finds it highly annoying to read about some great and wonderful accomplishment someone with MS has managed. That really does not cheer me up or make me strive to reach for the the stars. And it has the rebound effect (or is it affect?) of the inevitable comments from family – gee they climbed a mountain with MS so what is the big deal about not wanting to go camping where there is no running water and the closest restroom is 10 campsites down. Obviously you should be able to do that it is not like climbing a mountain you know!

Then again should I really feel bad and guilty or be berated because I can still drive, or make it up the stairs? Is not my personal perspective of suffering good enough. I somehow do not qualify? I have come around to the conclusion/belief that each and every person who overcomes any disability whether judged big or small is busy climbing their own mountains. And these mountains can be akin to pole vaulting over mouse turds to raising a truck over ones head. They all count.

And the above being the lead in to why I really like my adaptive PE class. It is a diverse group that gathers four days a week for an hour in the short bus trailer. I have yet to hear, see, or sense from anyone in the class that someone is better or worse or crazier or sicker than someone else. It is what it is. People who can’t talk use those boxes to communicate, the blind, the wheelchair bound, the mentally disabled, the goofs like me – we all just – well are.

It is the first place I have been with people who are not close friends that when my brain has gone south and it appears I took a stupid pill where I did not feel stupid.

Moving on without a segue into the next topic – I have decided to learn to play wildwood flower on the dulcimer. I have listened to a few renditions of the song. My favorite is June Carters last recording of it. I think I have figured out the notes – well a few might be missing – but I will see. It is not easy to find TAB notation for the old style noter and drone playing. The ones I have found on the net are for chording and finger picking. Big attempt for me as I still have problems with Go Tell Aunt Rhodie LOL But I am gonna give it a try.

Rush hour traffic here in Sacramento is the pits. I really dislike driving in it anymore. But the shop where the Luthier can put the strap buttons on my dulcimers does not even get in till 4:30pm. I am getting smarter here now so give some credit, I know that it would be a bad idea for me to install them even though I have done many over the years on guitars. So I put on my brave face, kissed the dogs goodbye and ventured out onto the evil freeway – at the start of rush hour(s).

I did not get lost, I did not crash, and on the way back home in the peal of the rush I turned on my truck radio. Yes, I made it home and listened to some tunes on the way. Not really that distracting because top speed was about 20 for most of the trip. The dogs were really impressed with the strap buttons and I suspect the fact that I made it home before doggy dinner time had a lot to do with that.

Now I can hold and play my dulcimers without them shooting out off my lap like rockets headed for a crash landing!
So today I just was, I made a goal, and I did something normal.

Cognitive Reserve Hypothesis
by Shauna at Bugs, Bikes, Brains

We all know that neurological disease can lead to cognitive impairment along with possible physical impairment. For many of us with MS, we may have noticed lapses in memory, ability to find the right word (tip of the tongue syndrome), unusual moodiness. Some of these things are part of the aging process, sometimes related to stress and/or hormones, and sometimes they are related to the disease.

How do we hold off these impairments? By the time we realize they exist, it may be too late as damage may have already been done. That's the scary part. However, we also know that the human brain is amazingly plastic and that we continue to learn things as we age, so continued brain stimulation by way of physical and mental exercise may help.

There is a hypothesis called the cognitive reserve hypothesis. It suggests that "enrichment protects against neurocognitive decline secondarily to disease" (from Wikipedia). "Lifetime intellectual enrichment (estimated with education or vocabulary knowledge) lessens the negative impact of brain disease on cognition, such that people with greater enrichment are able to withstand more severe neuropathology before suffering cognitive impairment or dementia." This is from the latest study of this hypothesis.

You can think of it this way. Two people contract a cold. One person is a health nut, eats right, exercises every day, gets the appropriate amount of sleep. The other person is a junk food junkie potato couch. The health nut has a good body reserve to fight off the cold within two days. The junkie, though, has no reserve and suffers for a week. The health nut has an "enrichment" of his health, the junkie doesn't.

The cognitive reserve hypothesis doesn't state that enrichment protects you from cognitive impairment; it simply lessens the negative impact. The two people I mentioned above both caught a cold, but one was impacted less than the other.
Cool, eh? I thought so. And it's related to the current study I'm in, the one about cognitive impairment and brain connectivity. You can bet your boots I'll be watching for more studies on this topic.

Let's face it. We have MS. We know it's neurological and degenerative, affecting physical and cognitive abilities. Some of the damage we have little control over. But there are also some aspects over which we do have control. We can get on a disease modifying treatment as soon as possible. We can eat right, reduce stress, get the proper amount of sleep and rest, stimulate our minds and exercise smart.

I have talked about exercising smart before but will sum it up for new readers or to prod those of you who may have forgotten. Stimulate your mind: do puzzles, but do different ones every day. Mix 'em up. The brain is stimulated by new things. You can do a Sudoku one day, a crossword the next, maybe some logic puzzles the day after, but mix it up. By doing the same ones every day, you become good at those kinds of puzzles, but the brain isn't doing anything new, so doesn't get the same stimulation.

Exercising smart is a pretty easy one. If you go for walks or hikes or whatever and don't have an Ipod or MP3 player, try doing multiplication tables as you exercise, compose a letter in your mind, try to recall a favourite recipe from your childhood. If you have a portable media player, listen to an audiobook, or Spanish lessons, or music that you normally wouldn't listen to. You can download free stuff from the library. Take different routes when you walk or hike. Remember, the point is to give your brain something new to work on. In other words, exercise your mind and body at the same time.

Another way to think of it is like this: your brain looks for patterns, whether it's music or words or what you see. These patterns are ingrained in our brain after years, kind of like the beaten down paths from base to base on a ball field. your brain will take the path of least resistance. If you expose yourself to something new and different, your brain first goes "What?" and then starts to search for familiar patterns. Not finding any, it gets down to the business of processing the information, beginning to lay down a new path. That is stimulation. And it's a good thing.

S.


This concludes the 54th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 11, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 9, 2010.

Thank you.

Comments for this post.