A Pain in the Neck

I’m back!  I’ve been back for a week or so shuffling my way around the house with a neck brace on.

It wasn’t a difficult surgery.  The pain from it is about what you would expect after having a surgery of any kind.  There is pain, but not something that some pain pills won’t put a dent into it.

What are the results thus far?

When I first got out of surgery that first day, I thought that….whoopee, my legs don’t feel pain!  They didn’t.  I couldn’t believe it.  Gradually, as the second day wore on, I began to feel pain in my legs.  I shrieked inside my head, I begged inside there but to no avail.  That stupid pain was on it’s way back and there wasn’t anything I could do about it.

Why did I not feel pain at first?  I don’t know.  I haven’t had my follow up visit with my doctor.

For a few days after my surgery, I felt the crawling onset of pain build up in my legs. It was progressively worse towards evening.

Although having surgery in my neck or cervical spine, my greatest concern was the pain in my legs and not in my neck. I was so hoping that I would be like the research I read prior to surgery where people had been helped with the pain in their legs
after having cervical surgery. That did not seem to be the case for me.

I sat in pain in both areas, legs and neck, and thought about my future days with Multiple Sclerosis. Was the pain in my legs neuropathy and would I have to incorporate living with that added pain in my life? MS was difficult enough to contend with as
it was. Why suffer the pain of a new neuropthy? What more lay ahead in living with this disease that I had not already encountered?

My husband came over to visit me on the third day. Everything he said irked me. I’m normally not this way but that day I could not contend with the mundane tidbits of everyday life at home that my husband told me thinking it would cheer me up. Why in
the world would telling me about home make me feel any better when what I wanted most was to go home, crawl into bed and cry?

You can’t blame him. He did not know about the screaming and yelling going on in my head, like a street fight brawl. He innocently sat there, made a comment, then get quiet waiting for some sort of response from me, as though I was delighted with what he told me. After repeated attempts at trying to cheer me up this way, he finally got the hint that this was not working.

Today, I’m a bit more cheerful despite the pain in both my legs and neck. Being home helps. Surrounding myself with the ability to do the things I know and love also helps. I haven’t done anything constructive but the tools are all available to me should I once again have the desire to think outside of myself.

 

My Take On This:
Being in this tunnel of negative thoughts is something I avoid at all cost. Sometimes it can’t be helped. I’m human and when in pain, even the best of us succumb to laying down in some dark corner of our minds and hearts, beating our hands and feet
like a child having a tantrum.

I believe I’m crawling out of there and will once again pursue the answers to my questions. What are they?

1. Is the pain in my legs a neuropathy? If so, what do I do about it?
2. Can this pain in my legs be resolved with the EMG test I spoke about in my earlier blog, where the nerves that are sending
these strong pain signals to my brain, be isolated and blocked?
3. Why did I initially feel an improvement and to be quite honest, there is still a bit of improvement?

In ending, my dear friends, this has been a struggle and continues to cause me some confusion. Spring is coming and I want to feel good for it, at least as well as I can feel despite having Multiple Sclerosis.

Back to the drawing board, literally. I feel like art work today. That’s a good sign

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Then What?

clock tickingThe night spreads its blanket over the house and the dogs have taken their places for a night’s sleep.  My husband has gone upstairs to bed.  All feels settled down and calm.  I love this feeling where I am with my man in the moon secluded while the stars twinkle around us.

I am watching the time on my computer.  Nothing to eat after midnight.  I am worried and more than a little scared.  With each tick of the clock I am drawing closer to the fact that tomorrow I will undergo yet another surgery.  This time it is for removal of 4 discs in my neck.

I am impinged.  Meaning my cervical spine is being compressed by offensive discs.  They intend to cut my neck in the front, draw aside my esophagus and anything else in the way, then uncover my spine.  The discs will be removed and then a tube will be placed where the discs once lived.  All will be well according to the surgeon’s standard, but will it?

It’s been nearly four months of agonizing pain.  Through the dawning of each day and the setting of the sun, I have lived with this pain, unrelenting and worsening as the days passed, I suffered mostly in silence.  However, there have been many days and late nights where I have succumbed to loudly screaming and giving in to the waves of tears that I have held back.

I’ve taken pain pills and waited for the wash of not caring so much about the pain.  The pain pills cut into the pain but does not take it away.

Will this surgery help my legs even though the cervical spine mostly controls the upper body?  Will I be freed from this unrelenting and excruciating pain?  Will I be able to walk with my unstable MS gait but be free of pain?  Will I not care about finding a way to sit or lay in bed where I can find some relief?   Will the pain of a surgery that takes 3-4 hours give way and give me back my freedom of knowing what it feels like to have little pain in my legs?

I have a million thoughts running through my head.  If this doesn’t work then what, I asked my MS neurologist.  He shrugged and told me to work with my pain management doctors.  I looked at him and burst into tears.  I can’t take this anymore.

I will have an EMG exam following the surgery and when I’m feeling up to it to try and isolate what nerve or nerves are being affected.  Perhaps I won’t need this painful test?

Then what?

My Take on This

There is no take on this.  It is what it is.  I can only wait and watch the clock ticking.  I have no delusion or faith that this will work.  Hope for the best?   I can’t.  I’m too tired to even try.

The clock ticks away.  I sit here with the man in the moon waiting for then what?

Get the F’ Out of My House!

It was such sunny and bright day yesterday, as I stood at the doorway of the back door watching m puppies at play.  I decided to get dressed while they were out romping around in the hint of spring weather.

I painfully made my way to the bedroom with my constant companions, pain and my walker.  I stood before the open dresser drawer trying to decide what to wear.  It was easy, most of the time because predominantly, in my drawer were black pants.  Today, however; I felt like wearing something different.  I chose a pair of pants the color of coffee with cream.  I then chose a red  top.

I went here and there, picking up things and setting the rooms aright.  My cleaning service ladies should be arriving soon.  It’s funny how one does this just before the before the cleaning people come.

While doing this, I felt my energy slowly slipping away as though my efforts were like attempting to start a car that wouldn’t start.  You turn the ignition and the feeble sound of the car battery lets you know that if you don’t start it soon, you won’t be able to start t at all.

Finally, I made it to the kitchen and stood there looking around.  I could see some things to be set aright, but they seemed daunting to me, as though moving some dirty dishes from the counter to the dish washer would succeed in only grinding the engine of the car (my body) to a screeching halt.

I gratefully let the cleaning ladies in shortly thereafter and slumped in my chair in front of the computer.  What I really wanted to do was get undressed and crawl back into bed.

I have very cheerful cleaning ladies and the loud talk, music and the repeated, “How are you Miss Maggie?” was sweet but just too much both at the same time.  I couldn’t wait for them to leave.

While I dawdled at the computer, I mean who could do anything constructive with all the noise here, I realized I needed to pee.  I could easily make my way to the bathroom and chase the ladies in there out, which I’ve done before.  I stood up about to do that very thing when I felt it let go.  There I was standing by my chair peeing (luckily, I had protection on) and trying to smile at the cleaning lady that just popped into the room.  “Is there anything I can do for you Miss Maggie?”  I smiled and said,

“No, I’m okay.”  I quickly turned around and sat back in my chair.

What I really wanted to say was, get the fuck out of my house!

My Take On This

It’s typical for all people with Multiple Sclerosis and many other diseases to start off the day chipper and ready to go (some days).  As the day passes, or rather the hours or minutes, you find yourself slowly losing the energy you started off with.  If you’re trying to maintain the momentum, forget it.  It’s like trying to catch a fish in a pond.   It just takes too much energy to hold on to the energy.

As far as my wanting my dear sweet cleaning ladies out of the house?  Aw come on!  When you’re peeing in your pants about the last thing you want is a house full of cheerful people who keep asking you questions.

 

 

I went here and there, picking up things and setting the rooms aright.  My cleaning service ladies should be arriving soon.  It’s funny how one does this just before the before the cleaning people come.

While doing this, I felt my energy slowly slipping away as though my efforts were like attempting to start a car that wouldn’t start.  You turn the ignition and the feeble sound of the car battery lets you know that if you don’t start it soon, you won’t be able to start t at all.

Finally, I made it to the kitchen and stood there looking around.  I could see some things to be set aright, but they seemed daunting to me, as though moving some dirty dishes from the counter to the dish washer would succeed in only grinding the engine of the car (my body) to a screeching halt.

I gratefully let the cleaning ladies in shortly thereafter and slumped in my chair in front of the computer.  What I really wanted to do was get undressed and crawl back into bed.

I have very cheerful cleaning ladies and the loud talk, music and the repeated, “How are you Miss Maggie?” was sweet but just too much both at the same time.  I couldn’t wait for them to leave.

While I dawdled at the computer, I mean who could do anything constructive with all the noise here, I realized I needed to pee.  I could easily make my way to the bathroom and chase the ladies in there out, which I’ve done before.  I stood up about to do that very thing when I felt it let go.  There I was standing by my chair peeing (luckily, I had protection on) and trying to smile at the cleaning lady that just popped into the room.  “Is there anything I can do for you Miss Maggie?”  I smiled and said,

“No, I’m okay.”  I quickly turned around and sat back in my chair.

What I really wanted to say was, get the fuck out of my house!

 

I went here and there, picking up things and setting the rooms aright.  My cleaning service ladies should be arriving soon.  It’s funny how one does this just before the before the cleaning people come.

While doing this, I felt my energy slowly slipping away as though my efforts were like attempting to start a car that wouldn’t start.  You turn the ignition and the feeble sound of the car battery lets you know that if you don’t start it soon, you won’t be able to start t at all.

Finally, I made it to the kitchen and stood there looking around.  I could see some things to be set aright, but they seemed daunting to me, as though moving some dirty dishes from the counter to the dish washer would succeed in only grinding the engine of the car (my body) to a screeching halt.

I gratefully let the cleaning ladies in shortly thereafter and slumped in my chair in front of the computer.  What I really wanted to do was get undressed and crawl back into bed.

I have very cheerful cleaning ladies and the loud talk, music and the repeated, “How are you Miss Maggie?” was sweet but just too much both at the same time.  I couldn’t wait for them to leave.

While I dawdled at the computer, I mean who could do anything constructive with all the noise here, I realized I needed to pee.  I could easily make my way to the bathroom and chase the ladies in there out, which I’ve done before.  I stood up about to do that very thing when I felt it let go.  There I was standing by my chair peeing (luckily, I had protection on) and trying to smile at the cleaning lady that just popped into the room.  “Is there anything I can do for you Miss Maggie?”  I smiled and said,

“No, I’m okay.”  I quickly turned around and sat back in my chair.

What I really wanted to say was, get the fuck out of my house!

Drum Roll Please!

The prognosis from the nerve block done this past week?  Well it’s hard to say.

As you may recall, I saw my Neurologist and he increased my Gabapentin thinking that this was a classic neuropathic pain.

The spine doctors felt it was due to lumbar problems and gave me the nerve block.

I came up with a theory of my own.  I wondered if the ill-fitting chair that I sat on all day was the problem, with no back support and having to sit up forward all day in it.  The chair seat feels hard.  I decided to stay off of it this week, for the most part.

I do feel somewhat better.  It’s not gone, but it’s down to about a 5-6 in pain level instead of a 10 to a zillion pain level.

Could it have been the drug increase?  It may have been because I started to feel a little better prior to the nerve block.  If this was it, thank you Doc, but I’m walking around in a daze from being on so many meds.

If it was from the nerve block, well thank you docs.

If it was from staying away from a bad chair.  Well, thank you to me.

My Take On This:

I think perhaps it was a combination of all three things.  It happened just in time, because I was wanting to look for the hack saw to get rid of the darn legs.

Whatever the reason for the slight improvement, I will take it and accept it with profound gratitude.  I don’t feel relief from pain but I feel improvement.

Hey every little bit counts.

 

Can I Run Away From Myself?


Well folks.  I’m here to tell you that right now I’m beside myself handling all this pain I’ve been experiencing.

It all started almost three months ago.  I began to feel a strange tingling in my legs, stronger on the left side.  It was strange because it just went from my knees to my ankles.  It came and went.

Then the intermittent periods between it’s coming and going shortened and I started experiencing pain.  It was the sensation of a charley horse.  You know how you know that it’s coming?  You start to feel a pain that builds and builds then it gets to the peak and goes over into excruciating pain.

What happened to me is that it went over into excruciating pain and it never went away.  It’s horrible.  Add to that the tingling sensation!  It decided to join the pain party and get stronger.  It also decided to stay at the party like an uninvited guest who doesn’t know it’s time to go home.

Have you ever used a tens unit?  Well if you turn the tens unit too high you get awful pain from it because it’s like an electrical sensation that’s too high.

This is what I’ve been living with for two months now.  I’ve been to the hospital twice trying to get help for the pain.  They helped me over night by giving me morphine and they ran all sorts of tests.  They felt it was coming from my back.  There was no definitive reason why they thought that, but that is what they said.  During the one stay at the hospital, their solution was to give me a heating pad to put on my back.  This was the instructions the hospital neurologist gave.

It was a very odd visit with him.  He could barely hear and no matter what I said he insisted that I had back pain.  I kept insisting that I didn’t.  My general practitioner also felt that way.  She felt it was sciatica.

There is no point repeating myself relentlessly because I know my last blog mentioned a lot of this.

Here is where I’m at now. MRIs were taken of my lumbar spine and my cervical spine.  My lumbar spine showed a bunch of stuff, but the radiology report was not definitive that about anything impinging my spinal cord.

My neck, however, showed that in three different areas, my spinal cord was impinged.  It was decided that I see a pain management Doctor for my legs and surgery for my neck.

I went to see the pain management Doctor.  I was given Tramadol for pain which is dispensed one week at a time and that they would like to try an injection in my back, under anesthesia, to block the over active nerves from sending pain signals to my legs.  This will be done on the 15th of January.  I figured, what the heck.  I will try anything to get rid of this pain.

Then I saw the neurosurgeon about my neck.  He told me, they will go in through the front of my neck, push everything to one side, in order to reach the cervical spine.  They will then remove three discs and replace the whole thing with a rod. But wait…there is more!

I finally saw my MS Neurologist.  I bombarded him with everything that had occurred since we last met.  I did wonder if the pain in my legs was from MS or something in my back.  Since the consensus from so many doctors was that my back was the root of the problems, I went along with the crowd.  However, my neurologist asked me to explain the pain from onset to where it was that day.  I did.  He looked at me and he said, “What you’ve explained to me is a classic case of neuropathy.”

                “What do you mean?”  I asked.

                “No kidding.  You explained to me precisely what happens with neuropathic pain.  The fact that it doesn’t seem to be connected to pain in your buttocks or your back and that it seems to be concentrated in just your lower limbs.”

                “Oh no!  What should I do about the nerve block procedure?”  He thought about it for a second and said.

                “Well just in case I’m wrong, I would go ahead with the nerve block.  I doubt that it will help, but if it does, then great!  However, I think we will try and treat this with medication as well.”

I thought about everything he just told me.  On the one hand, I was pissed off at all the doctors who treated me at the hospital with heating pads and morphine.  Why in the world didn’t they think about neuropathy and help me with medications.

I was also pissed off at me.  Why didn’t I call my Neurologist when all this started?  I thought about it, but I didn’t act on it.  Instead I waited hoping it would just pass like so many other things come and go in MS.

He did agree with the Doctors about my neck because he too had received a copy of the radiology report.

My Take on this:

Relief from pain.  I don’t care what it takes.  I’ve lived in 24/7 pain for nearly three months and my heart goes out to people who live in this kind of pain for so much longer.  I can see why some have suicidal thoughts with this kind of pain day in and day out.

I wanted to run away from myself.  I wanted to shed my body and just turn around and kick the old thing.  I wanted to run as far as I could from it. 

I usually look at my life five minutes at a time, but right now I have things looming in front of me that is difficult to ignore.

The shot should be nothing…I hope.  But the cervical spine surgery is not something to slough off as nothing.  I don’t know how much more my body can continue to take at this point.

Let’s forget about all that I just wrote.  There are a lot of positives that can loom ahead in the future as well.  I should not be ignoring that. 

Take one step in front of the other and …  and…

Does anyone know how to run away from myself?

I Can’t Hear You

You go along, working on being strong but conserving your strength (LOL) like the Doctors tell you and then…….Reality hits like a sledge hammer.

Paresthesias  abound.  You try to ignore them.  You go about your business as though nothing is wrong and then you finally succumb to whimpering and crying because this particular one is unusual in its tenacity to hang on to you as though there is no one else in the world to bother.

Ianded up in the hospital on morphine for two days.   The Doctors there scratched their heads trying to figure out what was the cause of it.   They weren’t neurologists.   My Neuro was an hour away unaware of what was happening, and beside that, he had no visiting privileges to that hospital.

They put me on morphine.  That was good because it quieted things down a bit.   Then I could see that look in their eyes of “what do we do next?”

I told them over and over, “call my neurologist”.  They said they would call the neurologist on call.   Meanwhile, they drew blood or tried to.  After about an hour of trying, they decided to put a PICC line in me.  Oh great!  More to deal with!  Off to Interventional Radiology I went.

After that ordeal, it was decided to do an MRI of the spine.  Great!  It’s their money.  I’m just a patient.  I don’t know what is wrong with me!  Wrong!  I do but I don’t.

The Doctors came back with the Radiology report in hand and indicated to me that they were still unsure.  It could be this or that and by the way, did you know, blah blah blah?

The next day they told me the Neurologist was just outside my room.  Great, I thought.  Now we will get these other Doctors to understand the nature of having Multiple Sclerosis.

He came in after consulting with the other Doctors and said to me, “I hear you have back pain!”  I said,

                “What?”

                “You have back pain and we will leave you on morphine for the time being until we get more information.  Also, I have ordered a heating pad for you.  See if that helps.”

                “But Doctor.” I said.  He interrupted me and said,

                “Speak louder, I can’t hear you”. I realized then that this man should have retired years ago.  He didn’t understand me and I couldn’t understand him either with his thick accent.

I looked at my husband and he said “Useless.”  That’s my husband.  Comes straight to the point with one sentence.

My assigned nurse came down with a strange looking box and plugged it.  She handed me the pad part and told me to lean back on it as she held it in place.

I sat there dumbfounded.  I realized that this hospital or at least the neurologist assigned to me knew very little about MS.  They knew about the disease but didn’t know how to treat it.

I knew that either I was having an exacerbation of MS or that something was wrong with my lower spine.  What was wrong with my lower spine could be a lesion from MS or it could be normal wear and tear.

I decided to sleep with the pad because the heat felt good and deal with the issues that were pounding my brain trying to get a voice out.  I quieted the voices down and told them later.  My husband just sat there quietly, but when everyone he said,

“We are never coming here again!”  I nodded.

The following day, after waiting more than 5 hours for my GP to arrive, we decided to leave AMA (against medical advice).  On the way out, we ran into my doctor.  We explained to her why were leaving.  She told me she was going to refer me to a Rehab Facility.

I sit here now talking to you through my words at 5:02 a.m.  I slept a few hours earlier and now I’m wide awake.

MY TAKE ON THIS:

Don’t despair if you are in crisis and taken to a hospital. Deal with it, get what you need such as pain meds and leave.  You can’t really fault the hospital for not knowing how to deal with you.  The only thing they know how to do is run diagnostics on you and treat the symptoms.  For that matter, so would a hospital with knowledge of Multiple Sclerosis do the same thing.  Run diagnostics and treat the symptoms.

What makes a difference in hospitals is the neurologists they have on call.  I could have waited the second day and asked to see a different neurologist, however; I was at a point in my pain frustration that all I wanted to do was go home and deal with it there until I saw my own neurologist.

Turn this bad experience and find something laughable about it.  We did.  My husband and I laughed all the way home after bitching about what happened.  It was a fiasco.  The only good thing about it was having morphine for two days.

Sedate me please!!!

I’m So Fricking Tired!

Fatigue.  What is it?  Medicine Net describes it thus:

  • Fatigue (either physical, mental or both) is a symptom that may be difficult for the patient to describe and words like lethargic, exhausted and tired may be used.

The dictionary website describes it as this:

noun
  1. weariness from bodily or mental exertion. a cause of weariness; slow ordeal; exertion:
the fatigue of driving for many hours.
  1. Physiology.  Temporary diminution of the irritability or functioning of organs, tissues, or cells after excessive exertion or stimulation.

What about fatigue in Multiple Sclerosis?  The above MS website has this to say.

Fatigue
People with MS may become more easily worn out after physical activity than usual. In addition to experiencing physical fatigue from doing simple things, people with MS may also experience mental fatigue from depression. There is also a type of fatigue called “lassitude” or “MS fatigue” that many believe to be unique to people with MS, which is generally more severe than normal fatigue. This type of fatigue may happen almost every day and could start early in the morning after a good night’s sleep. Lassitude also often worsens with heat and humidity.

Here is what fatigue means, not a quantified version of what fatigue is.

  • It’s the inability to sleep soundly at night. Yep, you heard me or read me…whatever.
  • You want to sleep but you can’t or maybe you won’t. You start out in bed and you fall asleep, but after an hour or two, you wake up.  Why?
  • Incontinence, must go to the bathroom.
  • Pain, you wake up with it.
  • Brain turmoil, there is too much going on in your head and it won’t let you rest. A sense of having to get something done.
  • You awaken bright-eyed and bushy tailed.
  • For me, I prefer night to day.

When you wake up, whether it’s in the morning or in the middle of the night, you are going to feel tired.  That’s true, but tired and fatigue are two different things.  Tired is due to all of the above, so is fatigue, but fatigue is so much more than that.

You want to go back to bed, but you don’t.  I know.  It’s a conundrum.  It’s habit forming to stay up once you wake up.

Another reason is that you’re too “tired” to go back to bed.  I know, it doesn’t make sense, but those in the know—know.  It takes too much energy to crawl into bed again and go through the whole process of trying to sleep.  This part is fatigue.

It’s easier to just stay up and walk to the computer with coffee in hand than to go through the nightmare of the sleeping process.  However, once you’re at the computer, or watching TV, you fall asleep with your coffee in hand.  You wake up with scalding coffee dripping down you.

You jump awake and you hold your nightgown away from your body to stop the burning, but you don’t go change into something clean.  You wait until everything cools down and you continue doing whatever you were doing until you fall asleep again.

The day becomes a nightmare.

You try to listen to conversations but you feel yourself falling asleep.  You snap awake, but you find yourself sliding down again.  You can’t control it.  If you’re doing something physically active, it’s easier to stay awake, but I’ve found myself falling asleep standing by the sink doing dishes.  You have a form of narcolepsy.

You have no desire or very little desire to do anything.  You force yourself to do things, nonetheless.  At least I do.

I am blessed with artistic abilities in various forms, so that can keep me busy—for a while—then I fall asleep.

You feel compelled to say yes to friends and family to do things with them and yet you have this deep-seated desire to say no.  When it comes time to do this activity, you bail out or you go and try your best to be “there” in the moment.

Fatigue to me is this overwhelming desire to stay in my jammies, which I do anyways most days, and do nothing.  My head is too heavy to lift, so are my arms and legs.  I want to lie prone.  I want to do nothing and think about nothing.  I don’t care about anything.  I am neither here nor there about every conceivable subject.  However, what I just wrote is the last thing I want to do.  I don’t want to lay prone and do nothing.  It’s impossible for me to lay and thing about nothing.  I do care about everything.  I am here and there.

Once again, I’ve written things that may be confusing to people.

I’m not explaining this very well, but I’m here to tell you, yes you, who think that you know what fatigue is, you don’t know anything!!!

You are tired and sometimes feel fatigue.  That’s it.

We are fatigued and sometimes feel tired.  Another ball of wax entirely.

Nothing has happened to me to cause me to write on this subject except that I’m feeling fatigued.  My mind has gone on a hiatus.  It requires rest and quiet.  Not rest in the way of sleeping, but a slowing down of the world at large and being in a place where decisions belong to someone else.  Unfortunately, my world does not slow down.

People think that when you are disabled and a stay-at-home person, that you have all this time on your hands to just do whatever you want or do nothing at all.  To a certain extent, this is true for some.  This is not the description for others.

I will talk about this in my next blog because if I start it here, this blog will be ten pages long.

Hugs to all who read this.  I sincerely appreciate your eyes that touch upon the words written by my shaking hands, the heart that takes to heart the words of confusion and yet cohesive linear paths to what it is I need to say.  Well maybe not so linear.

 

 

 

Write or Wrong

what we are unable to sayHello my dear friends,

I have posted several articles that have been somewhat generalized.  Although I feel that it’s okay, at the same time, I feel that I wasn’t living up to the promise I made myself.  That promise was to keep this site very intimate and blatantly honest.

It’s not that I’ve been dishonest, but it has been written about subjects that are not very intimate.  I do realize that one can’t always be intimate because there are months when nothing new happens.  I don’t want to keep rehashing relentlessly about the same old things.

The goal was to tell you about MY life with Multiple Sclerosis, not about other’s and not about the subject in general.  However, as I said above, when nothing new happens to relay to you, there really isn’t anything to be said.  I am honest about this.

You see, I’m not the type of person who keeps going over and over the events of my life.  Sure, I think about them and sometimes in real life, not the written word, I will talk about it with a friend, but once said is once said.  Repeating it again is pointless.

Repeating it again, in this venue, however; is actually necessary.  Now that I think about it.  People don’t bother reading all the articles, do they?  I know I don’t when I follow someone’s blog.  Most authors aren’t all that interesting after a while, including me.  Don’t you think?

I write when I have something to say.  I don’t write just to write, although in college, one is taught to write something, anything, to practice one’s craft.  Singers have to sing to maintain their voices.  Actors practice their lines over and over.  Perhaps I’m wrong and college professors are right?  I don’t know.

I do have some new events to tell you about but not today.  I’ve gone on and on about feeling guilty over not writing, that I’ve actually written an article about it.

What writing does for me is help clear my brain fog.  It helps me come to decisions and it helps me to either berate myself or stop berating myself over one thing or another.  I am my toughest critic.

Try it sometime.  Write!  You may find that it helps you in many ways.

Are You Playing Games With Me?

Somehow, instinctively, I knew that I should play games.  I don’t know how I knew it, but I did.  Come to find out, after playing games a lot for over a year or so, I happened Candy-Crush-Saga-featuredupon an article that spoke to the cognitive function and the positive impact of game playing.  Unfortunately, I don’t know where the article was on the web that enlightened me because that was many years ago, but let me see what I can find now about it.  Give me a few minutes and I’ll be right back.

Here is an article I found from Multiple Sclerosis Net (https://multiplesclerosis.net/living-with-ms/gaming/).

Unfortunately, she too doesn’t mention where she found her article, but like me, she intuitively found gaming to be helpful.  Here is her article.

 So let me tell you how excited I was to see this news release about video gaming helps those with multiple sclerosis! I did a little happy dance on this, because I’m a total gamer. Not just on the ‘gaming console’ but in the App Store and all that. It seems to help my train of thought going… really challenging me!
So, when I have some free time, which I try to make time for daily, I will play video games on the Xbox or on my tablet. My husband actually noticed that after I started playing more games, that my ‘cog-fog’issues seemed to happen less and less.
Now, if only we could all be professional gamers… ha-ha, but anyways, I’ve also played games on Facebook and on the computer in general, prior to there being easy access to games through apps.
So, back to the study… one of the firsts sentences is what I really wanted to highlight, “Video games targeting cognitive abilities may improve brain function in patients with multiple sclerosis (MS), a new study found. Results, published in the journal Radiology, showed that these games strengthen connections between neurons in the thalamus, a brain region crucial for information processing.”
It seems that they were using specific games to target the ‘cognitive abilities’ in the brain… but I just wanted to share that I’ve personally found that challenging myself here and there just ‘playing’ games has really helped. Especially the brainteasers, the ones that make you think, etc. My thought process has seemed to speed up, with the help of games that ‘keep me on my toes’, where I have to process the information quickly, etc.
Now, when my husband asks me what I’m doing on my tablet, phone, computer… or why I’m playing the Xbox, I say, “Don’t judge me, I’m improving my cognition.” Which, he just laughs and shakes his head at me about it… but you get the idea.
My interest in wanting to play more games has really brought more ‘quality-time’ with my kids because I have two boys that are 7 and almost 10… so this is an activity that we get to participate in together, and they have no idea that it is helping me in some ways.
Also, I’m not saying that ALL games have helped me… just some of them. I mean, it’s hard to say that HALO (my favorite) or Call Of Duty has helped my ‘thought process’, but at least it’s something that I enjoy doing, instead of just sitting around pondering the ‘what-ifs’ in life…
I remember last year, that I attended the Abilities Expo in DC-Metro Area, for MSWorld. Dr. Kantor actually interviewed someone that made a charity, for those with disabilities that like to play video games, but need some sort of assistance, it’s called AbleGamers, the coverage video can be found by clicking here.
Anyways, this was something that I was VERY excited to hear about and I wanted to share with my fellow MS’ers (and fellow gamers) out there.

Let me see what else I can find.  Be right back.

Wow!  From the same site, Multiple Sclerosis Net, I found someone else talking about this same issue, but this time she gives the article specifics.

Cognitive decline – the slowing of our brain’s functioning – is often viewed as the most worrisome of all the possible effects of multiple sclerosis, but treatment options are rarely identified.
According to the National Multiple Sclerosis Society, “Cognitive changes are common in people with MS — approximately half of all people with MS will develop problems with cognition. … In MS, certain functions are more likely to be affected than others:Memory (acquiring, retaining and retrieving new information).
The Multiple Sclerosis Association of America featured cognition in a recent issue of The Motivator, and offers a thorough explanation of the current reasons thought to cause change in Cognitive Issues with Multiple Sclerosis: Research, Strategies and Support. Beyond the physical change due to the demyelination process or brain atrophy, they also suggest polypharmacy (use of multiple drugs that might slow cognition), gut bacteria and/or smoking may contribute to cognitive decline. MSAA cites that the number of people with MS affected by cognitive decline may be up to 70% and there are times I feel like I am in that group.
So I was especially excited to see a press release from the NYU Langone Medical center about their research into ways people with MS can improve their function using online brain training games. Dr. Leigh Charvot presented the results of An Adaptive Computer-Based Cognitive Training Program Improves Cognitive Functioning in Adults with Multiple Sclerosis (MS): Results of a Double-Blind Randomized Active-Placebo-Controlled 12-Week Trial at the recent American Academy of Neurology (AAN) convention in Vancouver.
Dr. Charvet’s team used PositScience’s online program Brain HQ for the study group and the other group used a placebo program. For this study they included 135 people who were already showing cognitive problems associated with their MS. Each participant was encouraged to train on their computer program at least one hour per day, five days per week and there was a technician available to help and also provide direction.They found that people affected by MS who used Brain HQ for one hour per day for the entire 12 week study had a positive increase in cognitive functioning by 29% compared to the placebo group’s 15% improvement. I bet you will agree that is a significant number and is very encouraging. The researchers suggest the improvement rate may be even higher than found in their study, because their placebo group did their activities on average 19 more hours than the test group.
Equally encouraging with these results is that the participants all did their brain activities at home, on their computers. Access to therapy care continues to be a problem for many people, and that can include lack of transportation to appointments outside the home and the high costs of treatment visits. Being able to do this training in the convenience of  home and  on our own schedule takes away part of the access problems.
“Many patients with MS don’t have the time or resources to get to the clinic several times a week for cognitive remediation, and this research shows remotely-supervised cognitive training can be successfully provided to individuals with MS from home,” says senior study author Lauren B. Krupp, MD, professor of neurology and director of the Multiple Sclerosis Comprehensive Care Center. “Future studies will look at which patients with MS might respond most to cognitive remediation, and whether these improvements can be enhanced or sustained over longer periods of time.”
A remaining hurdle for this at home training is the cost – Brain HQ, the program that was used in this study, has a free program that includes access to the introductory activities but they  also offer a subscription program for as little as $8 per month ($96/year). You may not be ready to buy a subscription and the free version allowed me to try their program, which proved to be quite challenging. Although not necessarily studied for MS, there are a number of other online brain training sites – one of the best I’ve found is NeuroNation, run by a group of prestigious neuroscience institutes from around the world. NeuroNation has a comprehensive free program and they also offer a premium program that has a fee to use at about the same price as BrainHQ. If you use any online brain training I would love to know which ones and your opinion as to their effectiveness.
Even though we’re adults, this research shows we need to play more games – especially the ones that will assist our brains in the fight against MS.

The link to this article is https://multiplesclerosis.net/living-with-ms/fun-and-games/

There are many other sites that confirm the benefits of playing games for aging adults, young children with various problems and people with cognitive impairments such as those with us with Multiple Sclerosis.

So I ask you, are you game playing with me?