Games

Living Well with Montel - Healthy Living Articles Brain Health -- 8 tips on how to protect your brain and prevent memory loss.

Notice the last tip says to "Get Gaming."  One of the activities I do enjoy is gaming.  Sometimes, it may not seem like it to those around me because I'm such an introvert (INTP/J; ISTP).  

Admittedly, I sometimes get "peopled out," to quote my also-introverted-but-less-so hubby. Oh, I love people -- getting to know them and their stories.  I enjoy playing games, especially ones with lots of strategy and not so much chance (chance = roll of the dice or card draw determines your fate).  Yet, to recharge my battery, solitude is precious. And, I'm much more comfortable in small groups than in a room full of people.

Also, when I'm experiencing some brain-control issues or "Cog Fog" (those with MS know what I mean), I feel badly for taking so much time to think through things or playing poorly (if it is a cooperative/partner game).  So, sometimes, I decline playing with others just so I don't put them through my snail's pace decision-making or cause them to lose by doing something "not so bright."  [chuckle]  Then, I choose solitary games or brain-strengthening tasks for myself.

Right now, we are on vacation.  We've stopped along the way to spend time with some fellow gamers.  I'm liking each person here and want to get to know each one better.  You get this Darling Dozen in a room, and there are some good times going on!  Plus, they adapt well to my showing up for a couple games, then running to seclusion again.  I think they're keepers!

What I've played so far here: (click on each image to learn more about the game)

 -- Alhambra: So far, this is my favorite of those played here and that were new to me.  There's far more strategy in this tile-placement game than I'd figured there would be.  Thought process while playing --> "Do I pick up more money so I can purchase that building so I can have more of that kind of structure in my city so I can earn points?  Is that building going to get picked up by a competitor before I have a chance to purchase it?  What color of money was he picking up?  That'd give me a clue on what he is eyeing for the future of his city.  Do I bother wasting a turn to reorganize my city to accommodate that building I have saved?  Should I purchase that one just to keep it out of her hands, even though it'll likely not fit in my city?  I wonder if we're almost out of tiles in the bag.  I wonder if we're close to turning over one of the scoring cards."  Decisions, decisions.

 -- Maori: Another I hadn't played before.  Simple but fun!  It plays quickly.  There's some strategy.  Good for young kids as well as adults.  Build islands, trying not to leave blank spaces in your sea.  You want trees, leis, huts, boats.  You want it all.  Can you have it all?  What if someone gets the boat to a tile you wanted before you can get there?  What if there's a volcano blocking the way?

 -- Ubongo 3D: New to me.  If you think visually and like puzzles, you'll probably like this one.  You get a card with a shape.  You roll the die to see what blocks you get to use.  You get a couple minutes on the timer.  Now, build...no gaps, only 2 stories high, and the base cannot go beyond the pattern on the card but it must also fill it.  There's honestly a solution.  It's like Tetris has jumped out of the electronic screen right into your hot, little hands.  It takes a while to get used to it, but I can see how it'd be addictive.

 -- No Thanks!: Card game that was new to me.  Simple, but there's strategy.  You'll need some math skills to know what you are scoring along the way.  You want a low score.  A card gets flipped off the deck.  If you want it, grab it.  If you don't, throw one of your limited chips on it and say, "No thanks!"  Chips count as -1, so you want those.  If there's a card out there with a high number but lots of chips on it because everybody before you hasn't wanted it, perhaps it is worth picking up.  If you can grab cards in number sequence, you only have to count the lowest number in that sequence.  Game's over when cards are gone.  Add the numbers on the cards you grabbed, subtract the chips.  Lowest count wins.  I like most games.  I'm not raving about it, but I liked the strategy of it.  Played it late at night, and my brain was running on fumes; so, another player graciously counted mine for me.  [high five]

 -- Ricochet Robots:  New to me.  People think I didn't like this one because I said it was torturous.  (chuckle)  Frankly, that night, it was a bit maddening, but I think I would really like the game on a normal day.  This game goes right along with how my brain is wired, but when it isn't firing on all pistons...well, it was humorous and a bit chaotic to watch what was going on between my ears.  You have to figure out a path through the maze for one color of robot to get to its destination (based on a chip that comes up).  You can move other robots to help "bounce" the right robot to its end location.  Bid on how many moves you've figured out you can take to make it happen.  Lowest bid tries first.  If it didn't work out in that exact amount of moves you'd bid, then next lowest bid tries.  You get the chip if your bid matches the number of moves it took you to get the robot to where it should go.  Whoever has the most chips at the end wins.  

You'd think there wouldn't be a lot of replay value in this game, but there is because where all the robots ended up at the last turn is where they start the next.  Plus, the instruction chips (which color robot is to head where) come up in random order each time.

Why was this first time playing so nutty for me?  By the time I silently figured out in my head about 9 moves, I'd forget them as I went on into thinking about the remaining moves needed.  Start over.  Forget.  Start over.  Forget.  [RED ALERT: Malfunction in the echo-location and short-term memory modules!  Unable to compute! ABORT!]  I'm obsessed now, though.  I will conquer this game!

  

 -- I've played this one before, and it is one of my favorites because there's no chance to this one.  It is a purely strategic game.  It had been a long time since I played it, so I'd forgotten just how much I like it.  You build buildings, produce goods, and ship them off or sell them.  Earn the most victory points, and you've got the game won.  Simple enough, but choose wisely what to do when.  It makes a difference.  Take turns starting the round. You may not get to do the task you wanted to do this round, but maybe there's a 2nd best idea.  Maybe you need to save up that task to do next round anyway. Think about what is in the best interest for others to do on their turn. Do you thwart their efforts, or do you not worry about it and concentrate on your own little enterprise?  Where's the balance?  If you're not paying attention to what's going on for other people, the game might just end before you've done your "big move."  I've played a lot of games, and I'd say this is in my top 20 for board games.

Interview: Clay Walker on His Battle with MS & His ‘Fresh’ New Music on the Way « Radio.com News

Interview: Clay Walker on His Battle with MS & His ‘Fresh’ New Music on the Way « Radio.com News

Plastic Brains

When my father started having mini-strokes (TIA's), I moved back to our hometown.  Later, when he had his major stroke, I went to the rehab hospital with him.  Because I was to be a main caregiver, I accompanied him to all his rehab sessions.  That way, I could learn the exercises and be able to continue them for him when we got back home.

In fact, it is because of watching the effectiveness of the exercises there that I believe in the techniques I see in this video:

While Dad rested in the afternoons, I went to several of the hospital's stroke education classes.  It was there that I learned about what the brain can do because of the exercises.  The brain has the ability to make new neural pathways around the stroke-damaged areas.  Thus, if a stroke patient currently cannot move a body part, speak, swallow, or chew, that doesn't mean that's the way it will always be.  As the speaker explained it, the brain and nervous system have the amazing ability to build "work-arounds" (neuroplasticity).

Indeed, as I looked around at the progress of other patients as well as Dad's, I did see improvement.  One man was wheelchair-bound, then went to a walker, then to a cane, and finally could walk without any aids.  A local man who'd had a stroke and needed a walker then a cane eventually got to where he could walk, run, lift weights, and play racquetball.

In my own life, I've seen how the continued exercise, yoga, and Tai Chi help. I'd grown up doing yoga and bicycling with some dancing of all sorts and many other physical, fun activities.  When I had my first major MS attack and ended up using a cane and wheelchair, I kept doing my yoga stretches as well as kept practicing walking without aids.  Eventually, I got to where I could again hike, unaided, for miles.  I happened upon Tai Chi about then and got to where I could do aerobics and dancing again, too.  

After last year's relapse, I've needed to build up my walking distances again. I think I'm close to being able to do my Yoga Dance videos once more.  I'm going to keep trying. 

I believe that everyone should strive to exercise somehow -- both body and brain.  With MS, I think it is extremely important to keep moving as much as possible -- striving to do a little more each day.  Our brains and nervous systems are remarkable mechanisms that can relearn how to do things and compensate for areas of damage.  I've seen it happen.  I'm going to keep working at it, after every single relapse.  I'm going to keep moving and keep using this noggin of mine.  As much as I can do, that's what's going to happen!

******************

Links on neuroplasticity:
National Stroke Foundation
How The Brain Does It
Neuroplasticity and MS

I just found this MS Society UK forum post that echoes my thoughts.

Disclaimer:  Most every book I've read about exercise says to consult your doctor before attempting something new.  So, probably not a bad idea.

Tips I've learned that work for me:

• If I have fun doing it, I have a better chance of sticking with it.  If I enjoy it, I forget that I'm exercising.
• Here's an article about how video games can help.
• Heat Intolerance:  
• My body hates heat, and it lets me know it quickly when I get hot.  So, I exercise in a cool room or in the cool of the day.
• If my body heats up, it's going to be an unpleasant experience, which I don't want to associate with movement/exercise.  So, when I start feeling symptoms, I slow down, rest, and drink some cool water.  If I don't feel I've gotten in my exercise for the day, I start up again when my symptoms tame down.
• Cooling neck bands/kerchiefs help.  I've heard cooling vests help keep your core cool.  Letting cold water run over your wrists helps a bit, so cool wet towels where there are major blood vessels close to the skin would probably help.
• I used to be scared that exercising until symptoms occurred would cause a relapse.  So far, that hasn't happened.  Once I've gotten rest, my body goes back to where it was when I started that exercise session.
• "Exercising in the morning, when body temperature is lowest, helps to prevent heat-induced fatigue." -- p. 49, "Living with Multiple Sclerosis, A Wellness Approach" [Second Edition] by George H. Kraft, M.D. and Marci Catanzaro, R.N., Ph.D.
• Stretching/Yoga:  
• Go slow; be gentle; breathe.  
• When stretching, don't bounce.  
• If there's stiffness when you stretch, breathe deeply a few times then slowly, gently stretch on the exhale. 
• Concentrate on relaxing the muscles you are stretching rather than tense up.  This is something I have to mentally remind myself of every time.  Relax.
• I might be able to move or stretch more tomorrow or the next day or by the end of the week.  I keep trying to stretch a teeny bit more each time.  Slow wins the race here.  Bouncing or pushing toward pain can cause injury.
• I find that stretching/yoga helps with spasticity.  When I'm feeling stiff before bed, I know I'm probably going to experience painful leg spasms that will keep me awake.  Doing my stretches before bed helps keep those away for me; in turn, I sleep well.  Sleep heals the brain, so there you go!
• One thing I've noticed about yoga is that, after doing it for so long, I've become very familiar with my body -- what muscles move what area and what stretches help where there is stiffness.  And, I have a theory that this must help a lot in the physical rehabilitation process.  I think my brain is already familiar with many movements and is, thus, able to quickly create a fresh pathway to a destination I had once reached on a now-potholed, older path. (grin)  Each person with MS I know who does yoga stretching says it helps.  I don't know for sure why it helps, but it seems to for a lot of people.

Parkinson's Disease and Exercise:
An interesting story on bicycling and Parkinson's.
Tai Chi and Parkinson's.
Dance and Parkinson's.

Hope Flies

Yesterday, I spent a good portion of the day on YouTube, watching videos from Marlo Donato (Love) and Matt Allen G.    Last night, hubby and I spent a little time talking about an unrelated subject – emotional distance.  That combination seemed to create the setting and content for the dream from which I just awoke.

Basically, in my dream, hubby and I were in a big gymnasium with lots of people around.  I got the impression it was a neurological-testing center, and I had an appointment that afternoon.  A young man escorted us about halfway up the bleachers, sat us down, and started to do a weird test on me where I had to drink water in front of him.  The water was in a clear glass with black lines and numbers etched onto the outside.  Strings were attached to the bottom of the glass, and this man held the other end of the strings while he watched me drink.  After the test, he diagnosed me with MS, turned his back toward us, then asked over his shoulder, “Did I say it okay?  Too blunt?”  I assured him he’d announced the news just fine and that I’d known of it for a long enough time that I wasn’t shocked.  All was well.

When we stood to go, it was evening and the gym had pretty much cleared of people.  We made our way down the bleachers and were walking toward the exit when an older man came out of a side-room and encouraged us to, “Come in for a bite; eat before you go.  We have frozen yogurt.”  We followed him into a little cafeteria with white walls, white floor, and white chairs pushed against white, round tables.  I wasn’t hungry, but I sat at one of the tables while hubby chatted with the man by the yogurt machine.

On the table was a random brochure about neurology.  I picked it up.  On the back, there was an advertisement for the U.S. Air Force.  In the accompanying photo, a pilot in uniform stood by a fighter jet and both were silhouetted against a beautiful sunset.  I reclined on the table top, curled up, and began sobbing great tears all over the white, cold surface.  I’m sure that wasn’t very sanitary for the future, unsuspecting diner.  Graciously, the dream ended there.

F-16 Fighting Falcon (U.S. Air Force photo/Staff Sgt. Rasheen A. Douglas)

******

I have the type of personality where I’m not publicly demonstrative with my emotions.  As people generally think of the males in our species doing, I go off somewhere alone to sort out my feelings.  In other words, when I need to don sack cloth, roll around in ashes, and wail to my Creator, I run to some isolated cave to do it.  Always have.  This dream was surreal in many ways, but most especially at the end where I’m big-time bawling in a public place as I’m sprawled across a sticky table!

The important bit is what triggered the meltdown.  I was quite fine with the diagnosis until I saw that brochure advertisement.  

You see, I’ve never thought dreams could truly die; their fulfillment just gets postponed to a later date.  So, I’ve held out hope for decades.

When I was in my early teens, I knew what I wanted to be when I got out of school – a jet fighter pilot.  When an Air Force representative came to career day at school, I spent at least an hour at his booth, interrogating him about how to achieve that goal and wanting him to explain every detail about Air Force life.  

Air Force Academy Chapel, Winter (U.S. Air Force photo/Mike Kaplan)

Afterward, I wrote a letter to the Air Force Academy, asking if they’d accept me.  I got a letter back that advised I come there as soon as I graduated from high school.  So, that was the plan!

Then, in high school, I met an Air Force recruiter.  I told him of my goals.  He saw my eyeglasses and asked if I could drive a car without them.  I smiled and told him I probably could but it wouldn’t be a wise decision, for me nor for bystanders. 

“Well, then,” he said in a gentle but matter-of-fact tone, “The closest you’ll get to the planes is maintenance.  You won’t be able to fly them.  You need to be able to see well enough without the glasses.  Just our regulations.”

Unacceptable conclusion.  Maintenance was near the planes, but not flying them myself.  I wanted to know who made such rules and why, how they could get changed, and where I need to write to start hammering at whichever big-shot needed worn down until she or he could see reason.

Probably to send me on my way, he said, “Who knows.  Maybe someday they will relax the rules a bit, but I wouldn’t count on it.  Meanwhile, you can probably be a private pilot.” 

I let him go.  I’m surprised I didn’t tag him before the release.  A straight-talking recruiter is a find!

First year of community college:  I signed up as a writing major, but I was truly just waiting around for the Air Force to understand the error of their rules and let me into the cockpit.  So, I made use of my time by taking the Flight Instruction 101 class and studying brochures about missionary aviation.

I had until the end of my 32^nd year of life.  After that, their age rules would keep me out.  So, I had decades of scanning Air Force news and accosting recruiters about any possible rule changes about vision issues.  Who knows, I’m probably on some sort of watch list and now you are, too, simply because you’ve read this far.  Yeah, sorry about that.

Anyway, I kept wondering if there’d be a war where our nation would get desperate and allow people like me to fly their costly planes.  Perhaps the rules would relax enough I could fly the cargo planes, then I could sweet-talk my way into a jet fighter cockpit.  Maybe I’d somehow win an air-show contest to get to ride in a two-seater, the pilot would black out, and it would be up to me to fly us safely to the ground; then, as a reward for my good behavior, they’d bend their rules and invite me in!  

Thunderbirds (Air Force photo/Ray McCoy)

The year I turned 33 was impactful.  My cherished, earthly father died that year.  And, my dream of being a jet fighter pilot took another step down.  

Notice I didn’t say the dream died.  Oh no.  The Air Force could still relax rules.  Or, all the younger people may somehow disappear.  Then, they’d have to resort to the near-sighted, older folk faithfully waiting in the far pasture.  Yup, and I’d be there for them!

Painting by ART-fromthe-HEART on deviantART.

*****

At the end of this video that likely sparked last night's dream, as I saw Matt walk away from the camera, cane in hand, I whispered a prayer, “He looks like me at that age.  He’s so young to be going through this.”

I watched ahead in his videos to find that he fought his way out of a wheelchair and back to hiking without a cane!  Yay!  Great job!

I was young, too, when I was fighting my way out of a wheelchair and away from cane-use.  Because of last night's cafeteria-meltdown dream, I’ve been looking back at this period in my life and I realize that part of the reason I fought MS was because I didn’t figure the Air Force wanted pilots who couldn’t walk unaided.  If a person couldn’t fly if they needed visual aids, they certainly couldn’t fly if they needed mobility aids.

Where hope lives, dreams don’t die.  Perhaps they get delayed.  Even when reality starts solidifying, for me, a dream doesn’t die.  It simply gets modified.

Granted, it is unlikely that all healthy people under the age of 33 with 20/20 vision will disappear long enough that the Air Force will have to search the back pasture for cockpit-fillers.  Granted, it is unlikely I’ll win a contest to plop myself into the front seat of an F-16B, the backseat driver blacks out, and I must be the hero bringing us down in one piece.  Granted, they probably wouldn’t even let me polish the fuselage now for fear I’d wander off and accidentally fall into a cockpit and just happen to land on all the right buttons to close the canopy, buckle myself in, and fire up the engines.  Hey, I’m dreaming here!  Give me some slack!

Okay, I’ll grant that reality-odds are against all that happening.  But, the Dream Modification Module is functioning well.  Nobody can stop me from picking up my paints and creating that scene of an F-15E silhouetted against a blazing, evening sky.  Now, if my work gets liked by the Air Force enough and they invite me on base to create some paintings for their cafeteria walls and I just so happen to wander onto the tarmac and accidentally fall into an F-22 Raptor cockpit….well, they just should have known not to park it in my way!

Friendly Platypus Video

It's high time this blog had a platypus video, I'd say!

Multiple Sclerosis: I'm so tired! Fatigue and MS

I echo her thoughts and perspectives here.  I make myself get up and go about my day.
Give MS an inch and it will take a couple yards.
My motto:  Move or you'll stop moving.
Yet, as she says, if you're in relapse, have an infection, or feel like you're about to relapse, rest.
Rest as much as you need to in order to get up again.  You'll get to know your body.
Be patient with the process of getting to know when to push and when to ease off.

Trigeminal Neuralgia in MS

Hard to watch, but I'm posting for MS awareness's sake.
I wish she wasn't in pain, but good of her to share so that folks with MS know
that we are not alone.  There are others who know what it is like.

Emma's Song, Sung by Marlo Donato

Multiple Sclerosis: What is it?

Teri Garr Interview

Less Soup, More Brain

I finished reading “Awkward Bitch: My Life with MS” by Marlo Donato Parmelee.    

Through this detailed autobiography, I learned a lot about what happens after being officially diagnosed with MS.  So, when and if it becomes "official" for me and I can have a chance to start on disease-modifying drugs, I will know what to expect.  

Some sections of the book stood out for me.  This explains pretty well what happens to me sometimes.  Her hubby was telling her about an interview while she was experiencing the start of her first MS flare-up:

"I found it difficult to concentrate on what he was saying.  I could see his mouth moving, but couldn't really differentiate between his words and the background noise of the other people around us.  I seemed to be encapsulated in my own little world."

For me, an extremely frustrating part about MS is what I feel it has done to my brain power.  I used to be so sharp and quick.  Frankly, I know it is a matter of pride, for it's the one aspect about myself upon which I could rely. I've never been a girly-girl, so hadn't relied on my looks.  I didn't rely on being the jock because, well, awkwardness has been a constant companion.  I had a few talents (music, visual art, writing), but I was solitary enough that I didn't really share them with people.  So, the only thing that really set me apart was my intelligence.  

But, as MS slows my thought and memory processes, I feel less and less intelligent.  When I get tired and cannot keep my own brain on track in getting anything done, it makes me feel about as useful as an inkless pen.  As I watch normal interactions and conversations around me, I find myself wishing my hubby had met me during my brain's hay-day!  (grin)  Yet, he still married me.  [Audience: Say, "Ahhhh."]  Perhaps my brain isn't as deteriorated as it feels it is from the inside looking outward.

I feel the same way she does, too, when she was telling an associate about being diagnosed with MS:  

"The UK area manager, Simon's boss, came into the store that morning.  He was the man who had originally hired me and was quite fond of me.  He was visibly upset by my news.  His eyes started to well up with tears when I told him. 

" 'Are they 100 percent positive?  Do you think they might have misdiagnosed you?' he asked.

" 'No, I don't think they misdiagnosed me,' I said. 

" 'Are you OK? Are you sure you're OK?'

" 'I'm perfectly fine.' I kept answering. 

" 'You're very brave,' he said. 

" 'Believe me, I am not brave,' I said.  'Fire-fighters are brave; people who have choices are brave.  I don't have a choice, do I?  I can't pretend I don't have it.  I have to get on with things.' "

She lightened the mood with a joke right then, as she often seems to do.  I like this girl.

Photo by mechtaniya on deviantART.

"Jooly's Joint" is a web site she mentioned enjoying, so I'll link it here for you all.

For a long while, I tried to hide my symptoms from my family because I didn't want anyone to feel sorry for me nor to treat me any differently than they normally would.  However, as the MS grew harder to hide, confession was unavoidable.  That was last year.  Now, I am starting to take my first steps toward her approach:

"Despite some of the reactions, I continued talking about my diagnosis because I was happy that I was educating people.  I was still finding that people didn't know much about MS or had heard of it but did not know exactly what it was.  Others had completely wrong ideas about the disease.  Several thought it was fatal. Others thought that I would not be able to walk for much longer. 

"I saw such fear in people's eyes sometimes.  I also saw sympathy and pity.  That upset me the most.  From the days of my diagnosis, I did not want anyone to feel pity for me.  I felt that I had a lot going for me and that a stupid little disease like MS was not going to make me any less magnificent.  It was not going to make me less talented, less creative, less intelligent, or less anything."

I like how much this author describes the various medical treatments she's gone through.  One of them, I'd never heard of -- hyperbaric oxygen therapy.  As she describes:

"Basically, it is a treatment that simulates deep-sea diving.  You go through all the motions of diving, with mask on and all, but you are not in water.  The oxygen that you breathe through the mask is pure oxygen.  When you breathe pure oxygen in a pressurised environment, the oxygen enriches your cells, at a profound rate."  

It sounds like it helped her and others with MS.  Interesting.  I'll have to look into that a little more.  Of course, the whole time I was reading about her experiences in the "chamber," a song was playing in my head -- "We all live in the yellow submarine, the yellow submarine, the yellow submarine..."

After her first therapy session, though, she said something I've thought often in my life:

"I walked out without signing up for another session.  I liked the actual diving very much, not to mention the after-effects, but I could not shake the guilty feeling.  I felt like people in wheelchairs or walking with sticks would not want to see someone with the same disease walking without assistance.  I thought I would make them feel bad.  I was not sure if I would ever go back."

When I tweet about our walks, I often feel guilty when thinking of those reading who cannot walk like that.  Yet, I know I'm motivated to keep moving when I see others with MS posting about their activity.  Such an odd situation.  I don't want to make anyone feel badly they cannot do something I'm doing, yet I want to motivate others and myself to do as much as they can do.

I suspect others feel similarly, to many of the above quotations.  We may all have a different set of symptoms (why this is called the "Snowflake Disease"), but we have a kinship in our struggles to stay positive, active, and fighting!

Brain Soup

I’ve been waiting to write about a book once I’m done with it, but it hit me this morning [yeah, my brain is slow like that!] that those moments of inspiration to write about what I’m reading don’t appear later.  So, here I am, 90% through “Awkward Bitch: My Life with MS” by Marlo Donato Parmelee, and I’m getting inspired to write something.    

My inner dictator is saying, “No, just finish the book, then you can write about it.”

I make up stupid rules for myself, follow them for a while, then realize later that there’s not much logic behind the rule other than, “What if I don’t like the book in the end, but I’ve already given it a rave review?  Or I don’t like it, have suffered through it, then the end redeems all that suffering?” 

So, here I am being a rebel and breaking my own strange rule.  It’s a good book so far.  There….okay, caveat in place….now I can write out the inspiration that was sparked from it.  [Jennie sticks her own tongue out at the reflection in the mirror and says, “So there.”]

This book is about the author's life with MS.  Hey, she said that in the title.  I’m observant like that.  This quirky, honest, humble autobiography is very thorough, taking you through each step of her journey through the maddening first years of having MS. 

Our author and her hubby started out in America as singers/songwriters, but decided to try living in the UK to make their dreams happen.  That’s where MS came steamrolling over her.

Reading about her experiences with socialized medicine there as compared to what happens here in the US is interesting.  There are a few advantages to it, but I’d take America’s current way of doing things over that.  I’m not here to write about this, though.  You can read the book and come to your own conclusions.

I do want to write about some other thoughts that came along, though.  As I research and read, it strikes me how much more the medical and science communities know about MS now than they did twenty years ago.  Yet, there’s still so much unknown about it.  As patients, we’d like to think there are experts who have all the answers.  If we could only stumble across them [yeah, probably literally, too], we’d suddenly be a break-through case of permanent reversal of the nastiness.  We’d scream it through all the media waves, “Hey, do this!  I’m cured!  Come try it!”

Admittedly, there’s quite a bit of that already.  Maybe we try it.  Then, when a relapse comes, we wonder if the next idea will work or we’re fooling ourselves.  Personally, I don’t like the term, “incurable.”  To me, “we’re still looking for a cure,” is more desirable and actually more accurate.  Yet, I want to be level-headed in what I try on my body, not rushing to the latest "fad cure.”

When I’m reading, my medical-science obsessed brain is constantly going down tangential, unconventional paths.  When there’s a yet-to-be-cured disease I know about, my thoughts go into treasure-hunt mode.  Thinking unconventionally is part of the adventure.  So, keep this in mind as you are reading this.  I’m not saying, “Hey, here’s a cure over here.”  I’m merely thinking aloud on a cyber page while dragging you along.

This book sparked the idea, but the author was writing about something else when my brain went frolicking on its treasure hunt.  She’d just gotten intravenous steroids to alleviate symptoms from a relapse, and she was feeling so much better.  Her hubby told her she should be resting, but she said she couldn’t because she was feeling “jumpy!” 

This statement has nothing to do with bipolar disorder, and I’m not saying the author has bipolar disorder.  However, the sparked thought is this:  I know several people with bipolar disorder.  One also has MS.  She is in her early 60s.  She has a very slow-moving, fairly mild version of MS.

I’ve wondered a lot about why my version of MS has been around so long yet seems so slow-moving and mild compared to the experiences of others.  Perhaps I have something else, but my regular doctors and I have no idea what that something else could possibly be.  MS is the only thing that makes sense. 

The light-bulb-over-my-head effect happened when I thought about how my mom seems to get “jumpy” when she’s in her manic stage.  She has bipolar disorder, or “manic depression,” as it was called when the doctor diagnosed her from afar.  She’d refused to go in to see him, but my descriptions and my Dad’s to him made him realize that was the problem.

"Plato" by Raphael

When I was first researching bipolar a couple decades ago, it was thought that it was a chemical imbalance in the brain.  MS is the body’s immune system attacking its own central nervous system, often including the brain.  The bipolar woman I know who also has MS is still going strong.  I don’t have bipolar, but my mom does.  Genetics do strange things.  You see where my treasure-hunting brain is going with this. 

I thought:  Is there a trick the chemical imbalance is doing in the brain of a bipolar patient that also combats MS more effectively than the chemical make-up in the brains of those without bipolar?  How many people out there with milder, slower MS also have bipolar?  Is their body trying to self-treat the MS by throwing chemicals into the brain that aren’t normally there?  Since they have milder MS, does that mean this chemical cocktail on the brain is working?

Then, I got to wondering if the old definition for bipolar is still accurate, and I found an article about “chemical imbalance,” written by Ronald Pies, M.D.  This is from the article: “But neuroscience research has moved beyond any simple notion of a ‘chemical imbalance’ as the cause of psychiatric illnesses. The most sophisticated, modern theories posit that psychiatric illness is caused by a complex, often cyclical interaction of genetics, biology, psychology, environment, and social factors.  Neuroscience has also moved beyond the notion that psychiatric medications work simply by ‘revving up’ or toning down a couple of brain chemicals. For example, we have evidence that several antidepressants foster the growth of connections between brain cells, and we believe this is related to the beneficial effects of these medications. Lithium—a naturally occurring element, not really a ‘drug’ -- may help in bipolar disorder by protecting damaged brain cells and promoting their ability to communicate with each other.” [For readability, I’ve removed footnote references.  Go to the article to learn his sources.]

Well, your brain likely leaped where mine did when I read that.  Would lithium or whatever is in antidepressants as the active ingredient help brain cells communicate enough that it can treat MS and other diseases targeting brain cells?  Are any of these elements/chemicals in MS disease-modifying drugs already?  That part I can look up.  The rest remain as hovering questions. 

So, anyway, it’s a good book so far.  I’ll likely write more on it later.  I’m not done pondering previous books, so will likely write more about them, too.  Lucky you for wandering into the Pub and deciding to stay for the meanderings of the MS mind.

MS & Exercise

We walked three miles today.  I was pretty tired by the end of the trek -- feet dragging; fighting with my brain to stay focused so I wouldn't trip.  But, I survived and rested a while.

After dinner, I did the dishes, cleaned the bathroom, took out recycling, dusted, straightened up a few piles (it is a highly-effective filing system; honest!), and lugged a vacuum back and forth across the carpets of five rooms.  Oh, and I climbed/descended the stairs probably six times.  If I think some more, I can count some other things, I'm sure.

And, yes, that was all in one day!  Oh, I realize that's a small portion of a jam-packed day for some.  But, that was a full day for me, and it was most definitely exercise.  I'm not talking about just our daily 2-4 mile walk.  I'm referring to all that stuff afterward.

Sometimes, I think we get to looking at others -- that guy over there who just ran a marathon or that woman who swam a mega-distance or that Olympian who just trained in the gym for 8 hours -- and we shake our heads.  "I really need to exercise," we say to ourselves.  Then, we look at them again and maybe get a little discouraged and say, "Man, I just can't do that."

Maybe not, but those with MS and other challenging diseases have our own marathons to run.  Today was mine.  Maybe next time, my marathon will be walking a mile then fixing dinner.  Maybe it will be going up and down the stairs a couple times on errands.  Maybe it will be squishing sculpting clay between my fingers and applying it to my sculpture.  Perhaps it will be chasing after a nephew or challenging a niece to Wii bowling.

When I think through my day, instead of getting discouraged because running or aerobics isn't on the agenda, I go ahead and count those moments of simply being active.  If I moved my body and had fun doing it, that still counts.  If I worked muscles and joints in getting something done, that still counts.  I just move whatever I can move.  I may not always move it well, but it's going to move!  And, I realize that climbing a flight of stairs just once in a day is a marathon to some.  I've been there.  Just do what you can, and it is awesome when you do that!  Keep on trying!

It is fun to get creative, too.  There are all kinds of chances to be active.  While I'm at the stove and stirring, I do a couple of yoga or standing dance moves, especially if I have music going (which is often).  While watching a favorite show, I repeatedly point my toes then flex them back toward my knee (helps with foot drop issues, by the way).  When I wake up in the morning, I do 5-10 sit-ups.  Hey, I'm sitting up then wondering about laying back down again anyway; so, I put that indecision to good use!  (grin)

What was your marathon today?  Run it well, my friend!

All activity counts!

Some inspiration:  www.youtube.com/embed/N8xnLkyKgsE

MS & Love

I’ve been thinking a lot lately about a subject Montel Williams wrote about in “Climbing Higher” – relationships.  

One section on pages 147-148, strikes a nerve (bad cliché to use in a blog of this nature? (grin)):

“People with MS need to make a huge effort to bring people into our world.  We tell people what’s wrong only when we feel like telling them, and then we stop.  It becomes this dance of double-talk rather than just trying to tell the truth.  I think more marriages would be preserved if people were 100 percent open about the disease from the beginning, rather than taking months to get to the same point, after the damage has already been done.  Otherwise, the spouse feels left out, like you’re closing up and you’re pushing them away.  It’s part of the reason a lot of people with MS end up divorced.  If you are in a relationship where you are used to sharing your emotions and all of a sudden you get this disease and you shut down, you are taking something away from your spouse.  And your spouse is going to notice, and naturally feel rejected.

“I did this with Grace.  I’ve done something of the same thing with other women, sharing just so much and no more.  I’ve told them I have MS and what it is, but that doesn’t truly explain it.  How can you tell someone you’re just getting to know that she may one day find you jumping away from her when the pain comes on?  You can’t.  So you stay quiet, hoping it won’t happen.  And when it does, it scares them.  That’s why so many people who have MS end up alone.  We are so afraid to tell the truth to those people around us because of the fear of rejection.  All you need is one person to reject you and that can set the course for the rest of your life.”

This was written several years ago, and Mr. Williams is happy in a great relationship right now.  Yay!  I'm glad he's still fighting MS and sharing life with someone he loves!

Reading this section of his book did start up my brain gears, though.  The other day, I chose to launder the bedding and make the bed by myself.  Wrestling on the mattress cover and sheets seems to really heat up my body, for some reason.  But, I decided to tackle the task alone rather than call for hubby’s help as I usually do.  Vertigo tends to hit first when my core temp raises, and that’s what happened this time.  After some rest, normalcy returned...whatever that decides to be for us, eh? 

When hubby found out I’d done it alone, he asked why I hadn’t requested help.  I didn’t have an answer.  What is my answer?  Stubborn independence struck again?  Dad used to say, “Independence is great, but sometimes you are too independent.  You should let others do things for you once in a while.” 

Independence is part of it.  But, I suspect another part is that I’m still not ready to admit that help is needed.  It sounds the same, doesn’t it?  “I can do it myself” is a statement born out of stubborn independence (and probably pride is in there, too).  “I should be able to do this myself like I have umpteen-zillion times in my life before now” has a different tone and intent to it, and that’s the kind of bed-making attitude I took that day.  “Crikey, my body should be able to handle this task!” [Yes, I’m a Red Dwarf fan!]

I look at my cousin.  She has ALS.  She is on a ventilator.  She communicates with her eyes -- in person, via texting, and in email.  [I'm thankful for Tobii equipment which allows that.]  Everything else is done for her.  She can only move her eyes and one toe.  It is so hard to see this beautiful, adventurous, loving person go through this.  Yes, I feel fortunate in comparison.  I count my blessings.  When I tackle a task that is starting to wear on me, I find that I’m saying to myself, “She can’t do this anymore. You can! Suck it up!”

I cannot help thinking of the man who caused me to be such an advocate for those with MS, to start researching, to fight to raise awareness, to work to gain funds for those striving to find a cure.  When I was tentatively told I might have early MS back in the 1990s, I joined an online support group.  A man there had an aggressive version where he was losing abilities quite rapidly.  He said he was going to end his own life soon, before he lost the ability to do so without assistance.  Most tried to convince him to be hopeful, but he said his “goodbyes” and disappeared from the group a few days later.  

It caused everyone in the group to assess the likelihood of their having to face the same sort of situation someday.  We didn’t know about there being different kinds of MS, so we all thought we’d be in his situation at some future date.  Some would get there more slowly than others, sure; but we all thought we’d end up in a state like my cousin endures.

Therefore, with the symptoms going away like they did for me, it was easy to think the bad episodes were just a fluke – something other than MS.  Even after the flare-up 10 years ago, it was easy to think that perhaps it was permanent nerve damage via beriberi.  That meant it wouldn’t get worse.  The nerves were damaged, but I could live with what I was already experiencing.  Nothing more would be added to the list of symptoms.  Then, the flare-up of 2012 struck with an addition to the list – vertigo.

No, not the movie.  (smile)

I look back at all this history with hubby included in the timeline.   I get to thinking: “What have I gotten him into?  What’s ahead for us?”  Mix that line of thinking with my not telling him every issue like he’d like and not asking for his help.  Well, I’ve been withdrawing like Mr. Williams describes.  I’ve been doing it physically, mentally, and emotionally.  I’m reluctant to take my best beloved on this same ride with me.  What if this gets worse?  What if it gets much worse?  I could handle this when it was just me, but now I'm dragging him along, too.  What if this turns into a nightmare like it did for that man in our online support group or like it did for Annette?  What if I end up like my cousin?

That’s a lot of “what if’s” to muck through.  And, this is why I need to sometimes distance myself from the research, from thinking about MS, from reading about and watching the sadder MS stories.  Sometimes, I just need to run to my Heavenly Father, crawl into His lap via prayer, and let Him bring in His Light and hope so that His daughter can come back and be a positive force in the world again.  Then, I can look over at hubby, smile, and say, “You’re helping next time, Buster!...and, thank you.”  

There’s hope.  My focus remains there – for his sake, for mine, and for you all!  I honestly believe humanity is on the brink of figuring out how to cure MS, ALS, Parkinson’s, and many other diseases.  We’re getting there quickly.  Hang in there!

From "Vertigo."  Yes, the movie.  :)

Climbing Higher

Please forgive me if this post is a little rough in parts.  My brain is in a bit of a fog tonight, which is ironic when thinking about the planned subject. (chuckle)

I just finished reading: "Climbing Higher" by Montel Williams with Lawrence Grobel.

This is an enlightening, heart-wrenching, and hope-filled autobiography of Mr. Williams’ fight against MS.  It is also packed with information and insightful thoughts about symptom management and maintaining a healthy lifestyle in spite of the MS.  At the end, he gathered together a few doctors, asked them several very good questions, then recorded their varying answers.

I thought I’d learned a lot in my MS research thus far, but this reading taught me some things new to me as well as sparked several thoughts.  Thus, I’ll probably be writing about parts of this book in an ongoing basis throughout future posts.

The author’s perspective on medicinal marijuana isn’t the main topic, but I want to write about it first because of a news article I just read on the same subject.  In this book (copyright 2004, 2005), I learned the various uses of the plant, some history of legislation, and lots of ideas I hadn’t previously known. 

I’ve never tried marijuana or any other drug that is deemed illegal.  Yet, I empathize with those who have tried all sorts of pain medications and found that marijuana is the only thing that is effective for them.  I don’t see the problem with states legalizing it.  I don’t see a problem with scientists really investigating marijuana, debunking the myths, publicizing the truths to the public, then assisting in developing the best delivery system (pill, shot, oil on foods, etc) for the patients to gain the greatest benefit.  From reading what the author has to say on the subject, I think it merely needs to go through the same process other plants have gone through on their way to pharmacy shelves.  We need to at least be open-minded about it and do some unbiased research on our own before we think to decide for other adults what they can and cannot do with their own bodies.

As it says on page 108, 

“Most of the misinformation on marijuana, and most of the reasons people get so upset about it, are based on a mentality that existed prior to television, computers, cell phones, space shuttles and about 90 percent of everything we take for granted today.  It’s time to update that information.”

On page 111, there is reference to the white willow tree and how we can potentially do the same with marijuana:

“…we found out that it had medicinal value, that chewing the bark relieved pain.  Of course we’re not into bark-chewing these days, so what did we do?  We took that tree apart and figured out a way to synthesize the active ingredient and create a tablet – aspirin – that was more palatable than chewing on bark.  We’ve used marijuana at least as long as we have the willow tree or any of the other thousands of plants found in the forest that have medicinal value.  Why don’t we figure out a way to process it and make it like an aspirin?  If investigated and studied honestly there will be irrefutable evidence that it is a positive, powerful drug.

“One of the biggest fallacies is that marijuana will lead to harder drugs.  That’s one of the reasons why our endless war against drugs has failed: because the public is being lied to.  Marijuana is not going to make you run out and become a heroin addict.  It’s not going to destroy your brain cells.  It doesn’t impair memory or cognition.  It doesn’t interfere with our sex hormones.  It doesn’t impair our immune systems.  It is not highly addictive.  It isn’t more damaging to the lungs than tobacco.  It does have medicinal value.”

If the author isn’t to be believed on these statements, then one has a right to refuse to ingest the plant themselves.  I’m not sure we have the right to tell other adults they cannot.  As a society, we control what access children have to over-the-counter and prescription drugs.  We can do the same with marijuana.  Keeping it away from the adults who can benefit from it, though, seems strange to me.  If a trusted doctor wants to prescribe a marijuana-based medicine, it seems like having to get a prescription before you can take it is control enough.

Some links to read and ponder:

Article on marijuana advocacy at The Montel Williams MS Foundation.

10/07/13 Neuroscience News Article: TAU researchers find chemicals in marijuana could help treat MS.

“8 Myths about Marijuana” – Greg Campbell

“The Marijuana Myth: What If Everything You Think You Know About This Plant Is Wrong?” – Laurel Dewey