What you think about about when stuck on the toilet.

I have been away from you for three months.  Here is what has occurred:

1. I still have PPMS.  Damn.

2. I have a heart problem.  Guys my age(61) have an heart rate of usually 80-136 beats per minute.  My heart rate is about 46 bpm. A sleeping cat has a bpm of 120. I'm at 46. That means for 15 seconds of each minute I am the hobbling deceased (doesn't that sound classier than Walking Dead?)

3. I figured that I must be a prime candidate for Hobbling Deceased as:

• I have many different walks. I can do the Frankenstein lurch, the dazzling pirouette when stepping away from an object like a chair, table, wife or most inanimate objects (my wife is not an inanimate object - unless The Young and the Restless is on).  I can also fall over on cue.
• My mouth doesn't always form the words right so it may seem what I say is a mumbling that could join a group of walkers and hang with them for 15 seconds.  There are enough early kills on the two shows, Walking Dead and Fear the Walking Dead, that I could fit in quick enough (for a zombie)to get a Michonne autograph, and then hobble down the road, mumbling.
• I do have some concerns about how they are dressed.   I'm more of a t-shirt and jeans guy, and cleaned both well.  The blood and guts things on the Walkers can be special effects added later, so I might squeeze by, especially near Michonne.  Quick note: I stopped watching Walking Dead years ago - tired of the blood and gore of a ridiculous premise TV show, when I finally told myself that I was watching the show only to watch the special effects explained on the Talking Dead.  Once a nerd...

4. My heart medicine was put in place 20 or more years due to my high blood pressure at that time.  The blood pressure, I figure, was from my job at a DSS office, and of course, family, primarily my mother (who blessed me with her bipolar disorder as well) and the struggles of processing 5 family deaths within two years.  Other people have much worse, I know (re: DSS work).  I retired from my job seven years ago, there're few relatives left standing and no real attachment among us.  My blood pressure is fine, except, of course, the slowing of my heart from taking pills for a condition that faded years ago.  So I have a new cardiologist, and we're trying to do what we can do.

5. All right, here's why the title of this piece is what it is..   I mean, my fellow MSers, the worst thing about this rigamarole,  at least for me, is toilet time.  Unless I have a warning that what is about to happen is going to happen BIG and I better be prepared, I just do a quick visit with usually a rapid notification of disposal of waste and I'm out of there.  However, one Thursday morning in November, I was notified of a required visit to the bathroom, but it appeared to a quick one, and so I just sat (that's one thing I've learned with MS and bathrooms - no matter what you may think, guys, sit - ladies, you are as always prepared).  So I stopped in, and sat...

And I was there for two and a half freakin' hours!  It never stopped! Anytime I tried to get up, it would start again!  I didn't dare move, but no reading material or iPod within reach made for a very disappointing morning.

Cleanup of both myself and the bathroom filled in more time.  An image of the toilet seat had embedded on my butt! Really, it was. And now I could understand the people's fear on the two Dead shows.  It's going to barge into your world and terrify you so much that you never want to see it again.  But it...never...stops...coming, there's always more  and more


So, as we are tolled by all the MS Hucksters, until there's a cure, there's simply

This is what's inside....

and this is what's outside.

And they will never stop coming after you. Maybe I'll start watching Walking Dead again, and root for the zombies.  My kind of peopleHappy Holidays.

Wait, wait!  Here's another bit - There's the investment of your time.  When you get the official notice from your digestive track that you may be seated  for a while, you can always grab a book, your cellphone,  or other amusements and distract yourself.  So you seat yourself comfy, grab the latest Stephen King story, turning to page 7289, and by the time you are on page 7296 realize that nothing has happened at all, for you, anyway.  Steve might have killed off most of Maine in those seven pages, but the action you thought was to happen for you (or to you) doesn't occur, except perhaps a trickle and a toot.  That's our Nagan MS. He's swung his baseball bat with the upgrade barbed wire wrapped around the business end of the wood.  Always that service with a ... Damn, gotta go! Maybe

Easter droppings

This week: 

1. I got my Medicare card. I am old.  Medicare kicks in two years after Social Security Disability begins.  I am old and disabled and bald and you might not want to ride in a car I'm driving, either.

2. Visiting relatives in Syracuse, I was pulled over by police for missing a red light (which was absolutely correct). I admitted that I had done just that, was sorry, and would do a better job ASAP. Lucky we had only two blocks to go. My sister in law tried to explain everything from the back seat, but the officer just mumbled to me: "I can't understand what the back seat is saying." And I did admit I had a glass of wine around 4 hours previous. And then I played my MS card - I normally don't, but I just wanted it over. He sent us on our way with a warning, for which I was grateful. He might have had an entertaining time having me walk a straight line. 

                           

OK, not this bad....

3.I was driving on the NYS Thruway about 80 mph as we headed home, which meant when I hit the curve for our exit, the car was moving way too fast and we barely made the curve. Closer to home, there was a loose dog running back and forth on the county road and we and others slowed way down so that the dog could find a place to light and be rescued. I then became the good driver I used to be for the rest of the way home. But... 

What a beauty, only 131,435 miles!

4. I have seen the damage MS has already done to my judgement, and it is one of the many reasons why we have sold our home of 27 years and moving to a condo. Everything is closer and we can walk to the essentials. Enough for today. Hope your weekend was less, um, exciting

Holiday Songs for Bipolars and Multiple Sclerosis Battlers

Jingle Bells

(Chorus]
Bi-polar, bipolar
Spell it as you may
A disease
that will not please
when sadness fills your day.

Dragged me to the mall
"See how nice and bright?"
People are so sad
anxiety and fright
Oh take me home right now
To my bed I fly
So silence please
I am diseased
Watched QVC
All night!

[Chorus]

And so I took my pills
and maybe took a bath
and through my flat I walked
through old clothes, kicked a path
I think I'm unemployed
but I don't really care
I am just fine
How 'bout more wine?
Soon be manic, don't despair!

We Four Kinds (We Three Kings)

We four kinds of bad MS are
Spines and brains we love to leave scars
Keep on cryin', MRI trying
There's no cure so far...

[Chorus]

Oh-oh Prednisone, Copaxone too
Veripred please help me through
Sad and tired
caffeine wired
I can pee but just can't poo

We remiss and then may come back
Pro-gressive, well that they'll just  track
Donate money
Don't get funny
Just serve us and then hit the sack.

[Chorus]

Walking still - hey you're doing well
Pain and meds a personal hell
Five years stumbling
Down the steps tumbling
Watching my feet and legs swell

[Chorus]

HAWMC 4/11/15 Pet Pal.

I mentioned my dog some posts back, (OK, actually my sister's dog, but my sister was 17 when we finally brought the dog home and Barb was already her partying self, so Cookie moved on to me) and you can check that out.  But this is the one where we are supposed talk about pet pals, so I will note two others, no longer with us, that made me smile and still do.

Summer afternoon 1972.  It was pouring outside and I was just sitting at our dining room table, the one used for Thanksgiving and Christmas, putting a model car together ("Don't get any glue on the table!").  The transistor radio was playing the Top 40 songs.  My father had just left for the night shift, and my mother would be home in two hours from her job, so it was me, Cookie, and this:

The above bird is a budgie.  My grandmother had one for many years, and when Grandma died, we got the budgie.  We fed it, cleaned it, and let it do its thing in the cage, and occasionally opened the cage door and let it fly around the house.  The budgie, called Chico, found my father's bald head a nice resting place.  Cookie would track Chico around the house, but aside from a bark and a lot of sniffing at the budgie by the dog, no violence ever happened.  One day, though, I came home from school and, after dropping my bookbag, hunted around the house for Cookie.  Especially when I saw the cage was open and no bird around. Twenty minutes later, the bird was found, intact and chattering under the dining room (used at Thanksgiving and Christmas only) table.  Cookie was in the midst of her afternoon nap, and whatever had happened between dog and bird that day will never be known.

So it was this feeling of Nixon era detente that came over me at that moment and I can clearly remember telling myself what a great moment it was, that I should remember it. And I do.  Memories fade from me now.  But that one was, and remains,  as clear as glass.

And so is this one...

My wife's family had a farm (e-i-e-i-oh) and on this farm they had a dog. Her name was Lily.  She looked like this:

Golden Retriever.  Away from the farmhouse, and on the expansive acres around, Lily could have a field day running, well, around the field.  One Sunday in September, in the morning I was sitting on the outside couch (its a farm thing) such as this:

Breakfast was over and I was taking in the bright sun and blue skies. Lily would leap over the couch, over the wooden fence and into the tall grass. Running and running, tongue flapping like a pink rag out the side of her mouth. Now and then she'd run back and try to grab a coat sleeve or pant leg because she wanted to show me something.  This was anything from bones (animal) to something I had no comprehension what she was barking and huffing about.  We'd end up back at the couch until we did it all again.

They are gone now. The table, the couch, the animals.  But they are right here in my head, and as MS plays its tricks with my brain, some parts refuse to leave me, but console me.  They are my friends still, and I can be there with them anytime.  It's the brain, people. Use it. Bipolar, MS, whatever your challenge, the brain needs to be stimulated.  You live there, too.

The Walking Decrepits...( A Walking Dead Parody)

Sheriff Rick Grimes and his annoying son Carl are sitting in the sanctuary of the CDC (Center of Disease Control) in Atlanta.  The rest of the survivors are showering, eating actual food, and enjoying  comfy beds and clean toilets.  Dr. Edward Jenner is sitting at his com site watching the action on the large video screen before him and the Grimes.  MS people (called Mizzers)  stumbled around on the sidewalk just outside the CDC.

"What's wrong with that one?" Carl asked as he bit down on a Twizzler.  

Dr. Jenner leaned forward in his chair.  The walker on the screen was shuffling along being pushed around by other walkers.  The walker stopped and looked around, as if searching for a door.

"Oh, yeah," Dr. Jenner said. "That's a whyer."

"A what?" asked Rick.

"A whyer," the Doctor said, recognizing a teaching moment. "It's an Mizzer that walks around, but can not remember why it is there, or that maybe he should be someplace else.  The women ones are always looking in car windows for their car keys.  They don't last long because - well, see her there?"

Rick and Carl squinted at the far corner of the screen. A slow moving white van with a disability license plate was heading for the decrepit woman who had been gazing in the window of a blue Prius.  The van was going fifteen MPH and had its left turn signal on.  It slammed into the woman and then rolled over her as the van settled into the handicap parking space in front of the Prius.  The MS zombied man opened the door  to the van, placed his parking sticker in the van window, and walked to what once had been a pharmacy, since emptied, for Depends for Men, pain pills, and sleeping aids.  

The man called out in that weird despairing cry of the Mizzers as he saw he that the only remaining Pampers were for newborns, and yet stuffed the box into the front of his pants, and then fell over.

No one would pick him up.

"Poor bassterd," Rick mumbled.

"Why do you sound like an Australian?" Carl asked, offering the Twizzlers around.

"Sorry, sometimes I forget I'm an American." Rick stared off, seeming more interested in the mouse in the far corner that was just standing there, twitching,  first his right leg, then his left rear leg.  The mouse squeaked, urinated on the floor, and moved to the right of the small pool he just created, and waited.

"Oh, no you don't!" the Doctor yelled at the mouse. "I am NOT cleaning that up.  You had your Mighty Mouse Depends, and you would not wear them. Too bad."

Carl took out his Berreta 92, and blasted the mouse to twitching parts.

"Why'dja do that?" Rick asked, not hiding his admiration for his son's aim.

Carl shrugged.

"It's a walking decrepit, Dad. Mizzers die, right? -

Doctor Jenner raised his hand in the classic "Halt" move.

"You know, Carl," he said. "That is not necessarily true. Studies have shown - OK, you've got the gun.  I'll  shut up."

Carl nodded and turned to his father

"Besides, Dad, Mom's been doing a little twitching, too, if ya know what I mean."

"Carl, she's pregnant. Pregnant people do that."

Carl turned his attention back to the screen.  "We'll see," he mumbled.

"Hey, check this out," Dr. Jenner said.  "Look at this old guy with the beard. Looks like Santa is a little early this year."

The man was dressed in jeans, work shirt, and boots.  His white hair and and beard a bit lengthy for the summer, but he had a nice smile.  Jenner turned up the sound so all three men could hear the show.

"Now I got the cure right here, " the old man said in a professional South Carolina accent. "It's right in my car.  Come on, now."

All the Mizzers stopped whatever random thing they were doing, and turned to the white haired man. Those Mizzers that could still talk mouthed something like "cure...cure...money. Give them money." Those who could no longer speak just reached for their wallet.. Those in wheelchairs tried to rise from their chairs and join the fray, but just tumbled to the road. They crawled.

The Santa kept stepping backwards, drawing the Mizzers to him.  Rick placed a call on the speaker system to everyone inside the CDC.

"There's some guy outside who is gonna give himself up to the Mizzers.  We can make a run for it!"

Over the speaker system, all he could hear was....

"Too hot....Too cold....My legs, my legs.....Can't walk...."

Rick dropped the microphone, making too loud a noise.

"They're all infected," Rick said.  He collapsed in the chair.  On the screen was the white haired man with a slight limp.  "Handicapped Parking!" he cried, "Where's mah sticker? You don't look sick!"

"Welp, it ain't that bad," Carl said.  "knowing MS may not be genetic."

"What about that?" Dr. Jenner said. "What is genetic?"

Carl smiled and picked up his gun.

"Bipolar disorder, Dad.  Ask Mom."  Carl just started laughing.  A little too long.

One of the great things about Multiple Sclerosis is...

(I bet you thought there wouldn't be anything here.  If I wrote like that, I could get a job at Hallmark, as long as they gave me a blankie and pillow for "thinking sessions.")

Anyway, when the MS really kicks in down the line, you know that you've got just so much energy to work with each day, and each day is different in people contact, stress, and commitments.  You have to think low and then be pleasantly surprised that you've lasted into the late afternoon without looking like a Walking Dead cast member, like Milton here:

Actually, this was more my look after any meeting with a former Commissioner of Social Services who took your tax money and ran (you're welcome).  Otherwise, for the MS crowd, this might be us around 

oh,  three P.M. any Wednesday to Friday in the workaday world.

For those of us "retired" people, I can normally hold out pretty well if the day is not too loaded.  Otherwise I just mainline lattes.  Last Friday, family was dropping by and there would be a birthday celebration, and dinner out. I kept things cool, just nice and quiet, but getting too quiet and its blankie/pillow/nap time, even before the Hoda and Kathie Lee show starts, so I would do small things to keep active and once company came, be sort of in neutral.  My wife was concerned that was just going to "sit there."  It is always an option.  But I merely listened in to the conversation, glad to see the group, and we moved on to dinner.

Still idling, I read the menu, and nothing much struck me, but I ordered and sat back in the patio chairs at at outside venue in Saratoga Springs.  I do my level best to avoid Health/Horses/History town during the summer months as there are too many many tourists (and a good supply of "Those People" by which I mean wealthy and they know it boors who believe they own this area. Their wealth, real and external, is flaunted with BMWs, loud shirts, and loafers with white socks and they are also are glad to remind you who "pays your salary." End of rant.  Besides, if I was wealthy, I'd still be here with MS and white socks and loafers, but mine are cool).  So when company comes, they usually ask to go up to Saratoga so there we were.  I had a pear cider ale and a yum sandwich.  Nice job of ordering, me, I said.

At the entrance of restaurant a couple stood waiting for a table, and I realized that I knew the gentleman from my days working with Milton up there.  He had worked with me on the last project I begged and begged for and maybe that assignment was tossed at me as a bone, but we did make it work until I had to leave, and I was quite proud of it, and my staff.  The gentleman was a kind and considerate boss and even every now and then we did clash, things worked.

He retired a short time after my group began and it seemed I was the heir apparent to his job,  but it did not turn out that way, and probably for the best as MS was already invading my brain.

But on that nice last Friday afternoon I watched the couple make their way to their table and I just looked over now and as we continued our dinner.  I could feel the energy drain starting as the clock moved on toward five P.M.  The couple finished their meal, and got up. Then he saw me (you know that feeling - Did he see me? Do I want him to? What do I say? How can I-)

"Tom, how are you?"

There he was. Hands shaken, families introduced, want are you doing? I am not sure how far the DSS chatter box on old supervisors goes, so I just said I'd been busy writing, etc.

As they started to leave, I called to him.

"Warren, thank you for the best two years of my working life."

He stood there for a second, astonished, and then smiled and joined his wife.

And that is what MS gave me a chance to do that day, a chance to acknowledge to someone what their efforts had meant to me, and, I hope, the staff we'd put together.  I hope there are more days like that, and I know that time is short.  I got to think, slowly, ponder, what would I say?

And I said it.

And then it was time for cake.

Here's to you, Milton. And really, our Commissioner was more like this:

And another great thing about MS is, I've already got that shuffling Walking Dead step perfected. Look, just a little makeup, and easy-peezey zombie. Just waiting for that phone call.  

Thanks for reading. More soon. Heading to 5000.

How to be Normal, Part 2 - Naked in a small cold room

I am back in water therapy, an hour in a warm pool (90 degrees F) so that I can stretch muscles and move everything around to stay loose for another few days.  The physical therapist is welcoming, and my fellow back hurting, muscle cramping, rebuilding themselves cohorts keep things lively with conversation, perpetual teasing, recipes for good food.  My schedule for a normal week is now two days of therapy, one hour of bipolar support group, and a writing class (which is just as much therapy as anything else mentioned). This gives me three days to be with my wife and others for activities from dining out to movies to ball games, a chance to be, uh, normal.

But it is all so thin, that line we walk, and my goodness how the smallest thing can knock it off stride.  Yes, I'll get to the reason for the title in a moment.  Tuesday I was scheduled to have therapy at 2 PM.  I pulled into the parking space, and saw that one of the other folks in my group pulled in at the same time.  She told me to go ahead, and I opened the door to the health center and walked toward the pool area.  I was stopped by the reception people.

"You can't go back there, sir."

Uh-oh, said the Bad Part of my brain, here is a terrible moment in your life.

"Why?" I asked, telling Mr. Bad Part to shut up.

"The therapist had a family emergency and needed to go home. She'll be back for the 3 PM class. You can wait an hour, can't you?"

You know why she said that?, asked Mr. Bad Part.  Because you don't have anything else to do, like a job or sump'n. 

By this time my therapy cohort had arrived and we discussed options and said we'd be back near three.  As a courtesy, the health center gave us Dunkin Donuts gift cards and held on to our swim gear so we would not have to lug it back. Very kind.

Just all part of the plot to destroy you, said Mr. Bad Part.  Deeper into depression.  Whoosh City.

No one seemed to notice my mumbling as I made for the door, and drove off to Dunkin Donuts, while my cohort headed for Walmart.  I had an iced coffee, read the paper, checked e-mail, and then ran an errand.  Soon it was time to return to the health center.  I pulled in, then waited for my cohort, and we both walked in together.  Everything all right? Yes.

We went to the changing rooms, her to hers, me to mine. Only guy in the pool today, so the room was my own.  I got my trunks on and headed out. Exercise, Exercise, Exercise.  I lasted a half hour and then just took a seat. Wiped out.  Hmmmm.

If I could get in a comment, said Mr. Bad Part.  I'd like to point our that it is now 3:30, normally when you are home.  Energy and all the pills you take have done their job for Tuesday and they clock out at three.  Your brain is winding down, and you know what that means.

I left the pool, grabbed my stuff, and walked to the changing room.  I slid my swim shorts off and heard them plop on the floor. I blinked my eyes, and stood standing before my locker.  Why am I standing here naked? What do I do next?  It was just for a few seconds and then my brain rebooted and I got dressed, and got out of there.  I made it home and plopped on the couch.

I was lucky. There was no other person in the changing room, or would there be, and it was just for a few seconds.  Mr. Bad Part made it clear that this could be what waits for me as it did my father.  Maybe yes, maybe no. We shall see.

It is our choice to battle, to learn, to fight back, and maybe not win, but to make our losing as unpleasant as possible to our foe.  Mr. Bad Part should rue the day he ever crossed paths with us, and also used that lousy cartoon to represent me.  I've got less hair in some places and lots more in others.

Thanks for reading.  More soon.

Year 4 Telling Someone, Y & R style.

The scene opens with two harried young adults rushing into their parents' beautiful apartment, and then seeing their father slowly escorting their mother down the steps of a staircase that sweeps from an unseen above.  All are well dressed, reflecting the wealth of the vast Newman empire.

And boom.  Mom, that's Nikki Newman, tells the children that she has MS.  The children were stunned, and husband Victor Newman looked down at the carpet (demonstrating his emotional range) and then planted a quiet kiss on Nikki's forehead.  Everyone swore to be there and there was a hug between Mrs.Newman and the kids.  Victor looked at the carpet. Twice in one scene. Wow. He must be upset.

I'd like to congratulated the Young and the Restless daytime drama for their taking a chance with this story line.  Granted its something to do with an aging character that the younger demographic that all TV programs crave as viewers (18-35 years) may not associate with as well, and Nikki, whose age is over 50, needs a story line.  The Nikki and Victor relationship is one of the great stories in daytime drama (or soap opera) history, or so my wife tells me.

I did note a few things.  First, Nikki looks like she hasn't slept in a week, that exhausted gaze that MSer's of every kind can associate with.  Yet she doesn't mention exhaustion.  The daughter asks Nikki if she has gotten a second opinion.  "Yes, yes, Victoria, I've had all tests," Nikki responds.  She does not mention what kind of tests.  Let's assume she's had at least one MRI and a spinal tap (these are too yucky to talk about on TV unless you're Dr. Oz, I guess,).  The son Nick says that he knows very little about MS, but his father notes that "We are learning something new everyday."  He must be reading up on the latest from the MS Society, along with the request for another donation.  Victor should get with all the other wealthy people on all the daytime dramas.  We'd have this and everything other disease wrapped up next Thanksgiving.

"What caused it?" asks Nick.

"They don't know," says Nikki.  "For some reason it affects women more than men."

"How are you feeling?" asks Victoria.

"I get numbness, tremors in my hand right now..."

Victor chimes in.

"Thousands of people around the world can, with the proper treatment, and the proper medication, can live normal lives."

True enough, unless you have of the versions of MS for which there are presently no treatments, and no medications, like I have and thousands of others do, as well.  But I do accept cash donations, too, Victor.

One of the good reasons to give Nikki this form of relapsing remitting MS is that it can conveniently strike or disappear from the story line as needed.  All the actress has to do is check her script.  Alas, we don't get a script and conditions will determine good and not so good days.

Ms. Thomas, the actress who has played Nikki for many years, saw this as a chance to educate and inform viewers, and kudos to her and the rest of Bell Productions for doing so.  For some of us the hug at the end of the scene means most  when you can't take a pill to make things go away. Support from family and friends is crucial.  Take a look at the scene from Y & R when Nikki and her friend (and ex-husband) Jack talk about her condition on Feb 21 2013

No matter how you share the news of this diagnosis (I actually called my wife from the doctor's office parking lot and told her.  I knew what she would do.  She'd look up MS and find out what she could from websites. When I got home, we both had the basics to begin the ongoing conversation,) some you tell will offer help and support, but most have no idea what you're talking about, and will think it's all in your head. Actually its in your head and spine, unless its not, like me, and then you have to explain that and watch eyes glaze over.  And PSAs from the Osbournes gives very little.

Look, both the Newmans and the Osbournes are very wealthy (Yes, I know Nikki and Victor are just TV characters) and they can give their loved ones everything they might need.  There are studies showing that as income reduces access to care for MS decreases.  Might be a bit of a "well, duh" but there's not much out there anyway.  Pick your neuro and whatever treatment that person subscribes to (and gets support from Big Pharma for).  Ooops, don't have relapsing remitting MS? Oh, well. Keep a good mental attitude.  Here's a lollypop.

The one true supporter you have who will do the best job for you is your reflection in the mirror. And that Invisible Support System that has been in place since the beginning of time that lives in your heart.  Be well.  Fight on.

Здравствуйте, Россия!

More soon.



Please welcome my next drug - Amitriptyline!

First, a bit of a confession that I did not know I needed to give last week. After a discussion with my psychiatrist, the problems with memory that I've been having, as noted in my previous post, are more to be associated with an oncoming bought with depression than MS.  I don't know if its better to know that or not, but the idea of depression makes more sense for this "heavy brain" feeling I've had for the last few weeks.

I still would appreciate being reminded of things now and then.  I'll let you know.

But we did change a drug or two. In another post I talked about the dreams/nightmares that have disrupted my sleep cycle for the past few months.  Also my sleep cycles are routinely interrupted four to five times a night and I wake up either for a few moments and then just doze off after a slight body shift, or I'm awake for hours.  So instead of concentrating on cranking me up to keep on a level of manic so that I can keep writing and other activities, we're taking a step back.

"The depression is breaking through the levels we've established," my psychiatrist said. "We need to set that right."

And we'll begin that by getting some deeper levels of sleep. So please welcome my next drug. Amitriptyline!

So Ami, I'm glad you're here.  Tell me, what will you do for me?

Hi, Tom. Glad I've been prescribed.  I'm a trycilic antidepressant. I've been around for a long time, over 50 years.

You seem pretty small for an old drug.

I'm just a small dose.  I can grow as large as you need.  I help people with all kinds of challenges from depression to vulvodynia.  I just like saying vulvodynia.  Sounds like a Star Trek planet.

Thanks for the reference.  I knew I liked you. So we gotta get to it.  How about side effects?

The main two side effects that occur from taking me are drowsiness and a dry mouth. Other common side effects of using me are mostly due to my anticholinergic activity, including: weight gain, changes in appetite, muscle stiffness, nausea, constipation, nervousness, dizziness, blurred vision, urinary retention, and changes in sexual function.

Well, glad I've got MS, then, as it has stopped any interest in eating, in that I don't really have an appetite for food, muscles are always stiff and most of the other things I deal with most days. Guess I'm good to go.

I see.  I've got plenty of other side effects. Want to hear them?

Uh, not yet. Thanks. So we're going to start getting together tonight.  What can I expect?

I don't know. Everyone's different.  Let's see.  You woke up four times last night with major dreams involving your family at least twice. Correct?

Yes.

Then that's our starting point. Let's get together and see what we can do to get you a better nights sleep, a chance to relax your muscles and give you an MS break.  Ready?

Make it so.

Ah, Trek reference. Got it.

Good night, everyone.

Open wide!

Please turn in your MS card on your way out

Last post I noted that my wife Jackie and I met with my neurologist on 12/31/12. While we did get the good news that the lesions have not moved, which, we hope, means that we're holding off the disease with exercise, brainwork and attitude.  Since I can't take a pill to kill off MS, I'll go with that.  Yay, us.

Now this of course, would mean that I have MS.  You see, doctors are always comparing you to charts and graphs as to what category you are in. Bipolar has a number of levels and it depends on your actions, thoughts, and deeds to figure out where you are and what treatment can be recommended.  This is so that medical professionals can report their findings to insurance companies so that the companies can pay their fees, etc. to the doctor and his organization.  It's been this way for a long time and whatever Obamacare turns out to be, won't be changing for a while.  This also allows for a consistency in diagnosis as the patient moves along, everyone has the same frame of reference.

And as a person with Primary Progressive MS, I - oh, wait (snap) I forgot. I don't have MS now.  I did when I walked in to the neuro's office on Monday.  When I came out, I had Demyelination Disorder (Double D).  See, I don't have any lesions in my spinal fluid or in other areas where those things go to create havoc, just in the brain.  And since to have MS, you need to have more lesions in more places, I just don't make the cut.  So I've moved from ICD 340 to 341, out of MS but still neuro diseases.  ICD stands for: International Statistical Classification of Diseases and Related Health Problems.  They are the ones who wrote the book.

"So what does he actually have?," my wife asked.

The neuro shrugged. "I don't know, but it does not fit the categories of the McDonald list for MS, which makes him a 341."

Here is the McDonald (a research pioneer in neuro diseases) list, recognized by neurologists as the defacto reference tool...

Clinical Presentation	Additional Data Needed
* 2 or more attacks (relapses) * 2 or more objective clinical lesions	None; clinical evidence will suffice (additional evidence desirable but must be consistent with MS)
* 2 or more attacks * 1 objective clinical lesion	Dissemination in space, demonstrated by: * MRI * or a positive CSF and 2 or more MRI lesions consistent with MS * or further clinical attack involving different site. New criteria: Dissemination in Space (DIS) can be demonstrated by the presence of 1 or more T2 lesions in at least 2 of 4 of the following areas of the CNS: Periventricular, Juxtacortical, Infratentorial, or Spinal Cord.
* 1 attack * 2 or more objective clinical lesions	Dissemination in time (DIT), demonstrated by: * MRI * or second clinical attack New criteria: No longer a need to have separate MRIs run; Dissemination in time, demonstrated by: Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time; or A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or Await a second clinical attack. [This allows for quicker diagnosis without sacrificing specificity, while improving sensitivity.]
* 1 attack * 1 objective clinical lesion (clinically isolated syndrome)	New criteria: Dissemination in space and time, demonstrated by: For DIS: 1 or more T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord); or Await a second clinical attack implicating a different CNS site; and For DIT: Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time; or A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or Await a second clinical attack.
Insidious neurological progression suggestive of MS (primary progressive MS)	New criteria: One year of disease progression (retrospectively or prospectively determined) and two or three of the following: 1. Evidence for DIS in the brain based on 1 or more T2 lesions in the MS-characteristic (periventricular, juxtacortical, or infratentorial) regions 2. Evidence for DIS in the spinal cord based on 2 or more T2 lesions in the cord 3. Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index)

You can basically say there are five round roles.  Alas, I am a square peg.  Probably many of you are also.  It's been said that MS is a single disease with only 500,000 variations for the 500,000 people affected by it (or its been said now). I admit there is a lot of gobbledygook medical speak attached here, and you might want to hit the Google button to learn up.  But in the long run, it doesn't matter.

"It doesn't matter what the name of the disease is for the sake of insurance companies and international organizations." I told my neuro. "What matters is what it means to me. When I wake up, assuming I got some sleep, how do I feel? Can I walk well? How dizzy am I? What can I do today? I'll still call it PPMS until I hear something different, a diagnosis from you.  Since I'm taking no pills, and the only chance for a full life is up to me, what difference does it make? That disease name explained my father's suffering and mine so far.  The only Double D I know is Dunkin Donuts."

(Yeah, I know. Enter your own joke here.)

Buddha taught that all sentient beings know suffering and are experiencing it every day of their lives.  What matters is how you deal with it for yourself and recognizing that others suffer as well, even the most well off among us.  The compassion you have for both yourself and other's suffering, whether that suffering be from neurological disease, hunger, a bullet (both visible and invisible), other illness, lack of love, or whatever, determines the quality of life you can have when you open your eyes (internally and externally) each day.

I asked my neuro if I should turn in my MS card, and not go to support meetings. He just smiled and said "No, you're too important."  I'm not, but like I said in the previous post, this is the new mission and this is what I do.  Hope to see you at the next meeting.

Thanks for reading. More to come.

Chart courtesy of Wikipedia.
 
 

What's with Russia? Здравствуйте России! שלום ישראל!

Hello. For my American readers, hope your Thanksgiving day was enjoyable, with limited bloodletting and half way decent food.  If you watched or were forced to watched any football games on TV, be grateful as well that while many people do not have the bounty we have in this land, they also did not have to watch the New York Jets.

Like I did, and have for over 40 years.  And I thought MS pain was bad. Whew!

Anyway I was looking over the list of nations that peruse this blog and noticed that Russia, per blogger.com, has more readers of these words than any other nation, with the US second and Israel third.

So for my Russian readers....

Здравствуйте России!

Спасибо за ваш интерес. Мне интересно, если читатели есть заинтересованные в лечении рассеянного склероза или биполярное расстройство информации. Есть либо нарушения распространены в России? и где ты в этой большой, красивой нацией? Я хотел бы услышать от вас, но если вы предпочитаете только что прочитали, это хорошо, тоже. Мир вам.

And of course....

שלום ישראל!

תודה על ההתעניינות שלך. אני תוהה אם יש קוראים מעוניינים בטרשת נפוצה או מידע הפרעה דו קוטבי. הם או הפרעות נפוצות בישראל?ואיפה אתה שבאומה מדהימה? אני רוצה לשמוע ממך, ​​אבל אם אתה מעדיף פשוט לקרוא, זה טוב ויפה, יותר מדי. שלום לך.

As we head in to the Holiday Season in the USA, I hope everyone finds a time of peace within themselves and offer it to others.  But I've got doctors appointments and therapy next week, so back to the grind of battling disease that knows no season.

We're heading toward 2000 page views.  I hope you do find this interesting.  More soon.