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Brain Cog Fog Gets an Evaluation

A little peek at a little MS Madness!

As the writer I claim to be, I could lie and make up some brilliant excuse as to why today’s blog is not as creative as I usually try to make it.

 I could write that I am in Paris being wined and dined by a handsome stranger.

Or I could write that I am at Keith Richards’ Jamaican villa, lying in a hammock and looking at the crystal blue water while he writes new music nearby.

Maybe, I might scribe, I was abducted by aliens, for real this time, and they haven’t brought me back to Earth yet.

But the truth of the matter is that I am just tired; really tired. I am so tired, that miraculously, MS hasn’t given me anything new to write about this week.

And, if truth be told, I am still trying to sell a book or two and thought maybe today, I might just entice you with a look at an excerpt from MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.

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Since my brain is so tired, I thought the excerpt I would share should appropriately be from a chapter called Cognitive/Schmognitive which details brain cog fog and specifically, my first neuropsychological evaluation.

(Try saying that five times fast.  If you can, you don’t need a neuropsychological evaluation.)

If you like this excerpt and would like to get your own copy, you can buy one where all other amazing literary tomes are sold; except maybe mega brick and mortar stores as they don’t quite love MS Madness yet.  But maybe if you request it……

 

Thank you friends!   And remember, a portion of the proceeds from each sale of MS Madness goes to non-profit agencies searching for a cure for multiple sclerosis or non-profit agencies that help those living with chronic illness.

Have a restful weekend.

 

“…….The doctor introduced me to her assistant and we started the process. After some brief questions she showed me a drawing and asked me to write in paragraph form what I saw. I thought this was likely a simple exercise to show off my most basic grammar and spelling skills. I had just told her the only career path I could conceive of was becoming a writer. I had to prove that it was at least a possibility. I asked how much time I had. She told me to take all the time I wanted. Did that mean the entire four hours? I think she was expecting a basic description of woman doing this, child doing that, etc. But I saw a whole story in the drawing and wrote it, complete with a dramatic subplot and a commentary on the decline of a simple moral compass in current technology dependent middle class America. Eventually the doctor asked me to stop. Her report on the testing noted: “narrative handwriting sample was creative in content.” Perhaps I should have asked for it back to see if I could publish it. I needed the money, after all.

 

From there, things went downhill. Her assistant took me into this tiny room where she proceeded to have me memorize, spell, associate words, disassociate words, dissect words, add, subtract, remember, repeat and any other thing you can possibly do to someone’s brain. Slowly my head began to expand. Just remembering the test is bringing the awful headache back. The final report shows I tested pretty well but it didn’t seem so at the time. At one point, I could not tell the assistant the name of our president. Instead, I said, ‘I can’t believe this, I love him. I voted for him. I can see him in front of me and can see his family. He has a weird name but is a good guy.’ My Republican friends said that this memory loss was because my brain was blocking out disturbing thoughts.

 

The part of the test I did the worst on was identifying something missing from a picture. Maybe it was the artist in me altering common perceptions, but they would show me a picture and ask me what was left out. I couldn’t tell them and would say, ‘nothing, everything is there.’ The assistant would insist something was definitely missing. Then, to make her happy, I would make something up. If it was a picture of a puppy, I would say a little boy. Every puppy needs a little boy to hang out with. And the assistant would begin writing in her notepad. One picture was of a leaf, what could possibly be missing from a picture of a leaf? A leaf was a leaf. But the assistant would state ‘No, something was definitely missing,’ and we would start all over again.

 

One picture was of a mother and son walking on the beach. I grew up on Cape Cod. If something was missing from a beach picture I should have known what it was. I kept guessing—a fishing boat, tourists, whales, a keg of beer, sandcastles, nude sunbathers, seaweed, litter, suntan lotion, a cooler, shells, keep off the dunes signs, Jaws, park rangers. The assistant scribbled away………………….

 

Three weeks later the doctor called and said she had the test results. She told me the MS had caused my brain to slow down a bit. She compared it to her elderly father who didn’t have dementia, but whom she had to speak to slowly so that he would better understand her when she was telling him something. She said my brain was like that, an old man’s. She also told me that I should accept that my multi-tasking skills, skills I once prided myself on, were pretty much shot. I would now have to realize it might take me longer to process things, especially since the test was done in a controlled environment. Exhaustion, stress, and noise would likely increase my symptoms. She recommended that I visit a vocational specialist, whatever that was, and that I only work part time. She wouldn’t tell me what was missing from the beach picture as she said someday I may need to do the test again.

 

The breakdown of the test results seemed to be that cognitively, I wasn’t a total mess—I was just an old man. Good to know.”

*********Super top secret information just for you- more excerpts from MS Madness! are included in the BOOK tab of this website*******************

 

Pink and Orange Creatures

Same MS symptom, new MS monster

When you were a kid, did you have a monster that lived under your bed?

Being a child growing up by the seashore I wasn’t capable of worrying about just any old monster under my bed. My monster had a twist. And he didn’t live under my bed. He swam deep, deep below it.

See, my monster was a huge, scary great white shark. And he lived under my house, not under my bed.

No, my house wasn’t built on a pier.

In my childhood nightmares the shark was so powerful that he would come up from the ocean in the earth’s core and break through my basement and my bedroom floor just to bite my arm off if it happened to hanging over the bed.

It didn’t occur to me that that was quite a journey for a shark to make just to get my tasty arm. Or that if the shark was strong enough to break through cement and wood, my mattress would probably not keep him from getting all of me.

Yes, I know, this was a ridiculous childhood concern. But cut me some slack; it was the 70’s and Jaws had just been released. AND, they filmed Jaws not too far from where we lived so it could happen.

It didn’t help that my sisters just loved to hum the Jaws theme as we drifted off to sleep.

Maybe that is why I am so tired all the time now- my childhood was spent scrunching into a tight, safe little ball all night to protect myself from sharks and thus, I didn’t get much sleep back then. It is certainly the reason why I still never hang anything over the side of my bed. You shouldn’t either- you just never know…

I started thinking about this recently as I realized we have a tendency in life to make things that might frighten us, cute. If something is cute and cuddly, it can’t be dangerous.

Like Sesame Street– what was that about? A huge yellow bird is freaking scary! I know because Big Bird came to my little sister’s birthday party once and he scared the “you know what” out of one of her guests. No need to be graphic. Let’s just say diapers were involved.

And then there was ET. Oh no, no one is afraid of ET. He’s so ugly he’s cute, so he can’t be that bad. Hmmmm, kind of how my sisters described me as a baby.

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But when you really think about, an alien is still a monster anyway you look at it.

My new favorite commercial on TV is for Myrbetriq. If you have not seen it is worth it to pull up YouTube and check it out.

It features this woman being lead around by a little pink monster. He grabs her hand and pulls her off a bus when he sees a bathroom sign. He does the same thing when she is in line for a movie. Turns out, this adorable little creature is supposed to be her bladder.

The audio refers to “your bladder is calling the shots.” But the image makes her bladder out to be just a little needy, like a child needing to go, go, go all the time. Later in the 60 second commercial the little bladder monster makes faces as if he feels guilty for being so difficult.

The woman who owns him takes him to the doctor and he seems to be listening intently as the doctor tells the woman there is medicine that can help him control himself better.

Then the woman and the little pink monster, (I looked it up- the little guy does look like an actual bladder except with two big eye balls. I really hope my bladder doesn’t have eyes,) go to a concert in the park and sit happily relaxed with no worries.

Ridiculous, I thought! I don’t care what kind of medication the woman is taking she is going to have to go at least once during the concert. And there are probably only porta pottys which is a whole other kind of terror.

I paid very close attention to this commercial since my bladder and I have issues. And for several weeks I tried to think of my bladder as just a cute little needy monster. I swear I really did. But it didn’t work.

My bladder issues are not cute. And they are scary. And more than that, they piss me off. And like my childhood shark terrors, my bladder keeps me up at night. Making it cute did not help at all!

It made me wonder why we as a society do this. Why turn something horrible and frightening into something funny to try to pretend it doesn’t bug us? What if someone did that with multiple sclerosis?

And then I remember that I actually did! On the cover of my book about living with MS I turned MS into a monster. A “so ugly he’s kind of cute monster!”
I even held a contest to give him a name- Myron, the myelin munching monster (thank you Kym.) And then I put him at the start of every chapter. What was I thinking?

The thing is, since he’s not going anywhere he might as well be funny to look at. If I have to deal with him, I might as well try to be less terrified. And maybe if I give him an orange color since orange is the color of hope for people with MS, he’ll weaken just a little bit.

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And that right there is when I realized that if I make him, my crappy, miserable MS, into a monster, I give myself just a little bit of control over him. He’s still scary. And he definitely still pisses me off. But at least he’s a little bit less hideous to look at…

And speaking of Myron, the myelin munching monster, the MSstation Book Club website has named his story, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis as the May book of the month! Check it out here-

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And if you haven’t picked up a copy yet, why not buy it through my publisher’s website where 50% of the proceeds go to the Nancy Davis Foundation’s Race to Erase MS Orange campaign. Maybe your purchase will be the one that funds the research that leads the experts in the direction of a cure!

At the very least, you’ll get a chuckle or two!

Please excuse me now; my bladder and I are headed to the bathroom. We have some obnoxious issues to take care of…

 

Bees and Bears and Sharks, Oh My!

Multiple Sclerosis goes wild

 

I say wild not in the wild parties of my youth kind of way. But in the real wild, like nature and forests and stuff. Neither wild is very conducive to my multiple sclerosis life now. I find myself with a lack of energy for chugging from a keg at an all nighter, or camping in the woods. Unless there is a fancy, luxury resort in the middle of the woods with turn down service and quiet hours after nine pm.

But spring on Cape Cod has arrived and with it, the creatures of the wild are determined to visit and I am trying to deal. First the bees; kids, go see your parents if you want the true story of the Birds AND Bees.

 

As I have complained about in the past, the pollen in my neighborhood is out of control. It arrived around the same day that I came home and found two bumble bees throwing a party in my house. I wouldn’t have mind if they were related to the cute little bee from the Cheerios commercials. But no, these were the noisy type that can sting and drive you crazy in a matter of minutes.

I have yet to ascertain what they were doing in my house, how they got in or what they wanted. I also have no idea what they have to do with the disgusting pollen, but both showing up at the same time can’t be a coincidence.

 

I tried to research where pollen comes from but it was like studying plant porn- the words sperm and ovule were in the description and kind of freaked me out. I swear this is true- take a look.

When I was first diagnosed, it was recommended that I eat bee pollen as it would be healthy for me. Seriously? There is only so much one can handle.

The bees belonged in the wild, not in my living room. So with clever and deft movements, I tricked them into leaving through the slider and survived unscathed, albeit sneezing and yellow green from all the pollen that came in the door while the bees were being kicked out.

If I had my way, that would be the end of my dalliance with creatures from the wild, wild as in, outside. But since it is spring and I am committed to exercise, beach walks are in order. But, it seems, the beach is no longer safe.

 

Jaws has arrived and he is hungry! Last year, he and his sharp toothed posse didn’t show up until July. But like many tourists, they have discovered the benefits of the Cape in the early season. Once he was spotted, swimming was banned for two hours.

Why is that? What makes it safe to go in the water after two hours? Do the rangers and lifeguards feel that in two hours or so the sharks might be napping? I try to nap after two hours but who’s to say that great whites do?

 

It is very dangerous to hang out when the sharks are here. I personally know of over 15 people locally who have killed by sharks. And those are just the people in the movies! Imagine how many others have been attacked and killed and didn’t it make it to the final cut.

Ok, “cut” is a bad word choice.

 

Other people in the know say that the bay beaches are safe. The great whites are only in the ocean water. But I am forced to ask, how do they know? Don’t they realize that sharks can swim? It’s not like the great whites are chatting in the deep and saying, “oh, those bay beaches are lousy. No point going over there. Let’s just hang in this water. Hey Mac, stay out of that current- that is a direct wave into the bay.”

So, getting my exercise by swimming is out. Technically, I could still walk the beach but everyone knows that if a shark is really hungry, he can jump out of the water and grab you. I’m not dumb. I saw the Land Shark segments on Saturday Night Live. It’s just too terrifying.

 

Then, just when I thought it was safe to go back in the water, I mean, go out of my house, bears started hanging around. Last year, one lone bear mysteriously found his way onto the spit of land that is Cape Cod and nobody could figure out how he did it.

The Cape is separated from the mainland by a canal and two bridges. It was thought that the bear wouldn’t willingly try to swim the deep canal so he must have walked himself across a bridge, likely in the middle of the night to avoid the nasty Cape traffic. Once here, he made his way through each town, visiting historic and beautiful sites like all tourists do.

 

Eventually, for safety’s sake, he was drugged and driven to the deep, deep woods of Western, MA. He didn’t like it, and twice tried to come back. Apparently the Cape IS the place to be in June. But he was turned around.

As far as we know, he has not come back this year. I think I heard he went to Block Island instead.

Yet, I have still been surrounded by bears. These bears love the cool weather of winter. They hang out on ice. They also like to travel. They are entertaining and only dangerous to leafs, rangers, fish and birds.

These bears demand attention; attention I can provide while safely lounging on my sofa, eating veggies and drinking water.

 

Yes, bears are begging me to enter the wild kingdom. Which I look forward to doing immensely by watching the Boston Bruins in their Stanley Cup series! And, if I am still feeling wild when the game is over, I can always put on Animal Planet.

Go B’s!