Category Archives: MS and Exercise

MS: Motivation from Montel Williams

I have found several interviews in the last few days with Montel Williams, talk-show host, who also has MS.

Montel Williams interview about MS

Montel Williams interview about MS

I found them very motivational and wanted to share this on with you today.  https://www.youtube.com/watch?v=VpmKTMObICE&feature=youtu.be

Can you relate to Montel’s experience with MS?

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Filed under MS and Depression, MS and Exercise, MS Drugs, Uncategorized

MS: You make me wanna “Sweat Like A Girl”!

A few weeks ago, I went to a very nice dinner hosted by Gilenya at “The Marble Head Chowder House”. A Neurologist and MS Specialist spoke for a short time about MS and then for an even shorter time about one of the new disease modifying therapies, Gilenya. It’s a pill that has pretty much the same efficacy as all the others pills, however it’s one pill a day, not two.

For half of a second my interest was peaked, and then they mentioned its heart concerns and the special care that must be given when first taking the drug.

Hmmmm, maybe not :/

If it ain’t broke, don’t fix it. Sure my Tecfidera is twice a day but I’ve had zero side effects and if I did, heart health would not be one of them.

I did however, meet some really nice people. There were sisters who both have MS; talk about partners in crime. Another woman who brought her 2 siblings so that they could have a better understanding of the disease; I can’t take ALL of my siblings anywhere all at once, it’s too embarrassing. There was one other woman who like me, brought her husband. That couple talked a lot about Hippotherapy which I found fascinating. They convinced me that it was beneficial! I wish I could convince my Insurance Carrier of that.

All in all we had a great night! I think we should get together again and have a mini support group. Next time we should meet somewhere more exciting…I dont know, maybe for a class at “Sweat Like A Girl”. It looks like fun. I’ll let you know how it turns out.

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Filed under Mind-Body Connection, MS and Exercise, MS and Oral Medication, MS Drugs, Uncategorized

I don’t know how much time I have left, so I want to run fast”

RUNNER-4master675

http://www.nytimes.com/2014/03/04/sports/for-runner-with-ms-no-pain-while-racing-no-feeling-at-the-finish.html?emc=eta1&_r=0

This young lady inspires me to make everyday count; live life to the fullest and have no regrets. Do it now, life is short.  To not worry about what anyone else thinks when they see me stumble, even fall. She inspires me to go to the gym, and work harder while I’m there.

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What’s your take away?

RUNNER-4master675

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Meet me outside my comfort zone: “At the Falls”

After my Photo shoot with Abby, I am feeling quite cocky, maybe a little too cocky. I announce that I am going to Bushkill Falls, PA, by myself. To be comfortable outside of one’s comfort zone, you’ve got to go there daily. Eventually, what’s uncomfortable becomes comfortable again. That’s what I tell myself.

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I’ve been there many times, hiked the whole thing with my camera and tripod, and taken beautiful shots. So, I know full well the challenge I am about to undertake.  There is no way I can do the hike. I won’t be able to do more than walk in and make it to the first lookout. It’s not far at all from the entrance and I’ll see the first fall from there. I’m sure it is there for old people to enjoy while their family hikes on. Genius! I’ll go THERE! I’ll take my real camera and carry my tripod over my shoulder. This could be a balance catastrophe. If it comes down to me, or my camera, I’m going down!

I make the hour drive high up into the Pocono Mountains. I arrive. Note to my local friends: the flashing light where you turn left is no longer there.

I prepare to get out. Two pound camera around my neck and five pound tripod over my shoulder, and off I go.

I am worried as hell. But I… “look so good”.

High in the Poconos, stream fed waters empty into the Main Fall which is a 100 foot drop, then travels though a 75 foot long gorge and empties into the Delaware River. It’s called “The Niagara of Pennsylvania”.

Gingerly, I make it to the first lookout which is my destination. SUCCESS! But, the shots I get there are lame. It’s just the top of the Main Fall. ANTI-CLIMATIC to say the least. Did I really just lug my camera and tripod here for this?? If I go home now, this will be a TOTAL waste of time.

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I had hiked the entire two mile trail and seen all SEVEN Falls, up close and personal. But…not today. I know my limits.

BAH HUM BUG! I’m going down! Which means going down more than 100 steps (I stop counting at 80) and walking additional trail to get to the bottom of the Main Fall and the top of the Gorge?

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Now THIS is beautiful, and there are six more falls over a two mile hike. Hmmm…maybe not.

The park closes for the season in November and the foliage will be AH-mazing. That does it, I’ll be back. I’ll make it to the second Fall and go home happy.

Push yourself. Go outside of your comfort zone. You’ll discover you can recover some of the old you, or if you’re lucky, you’ll discover something even better…a new you.

Comments: What are you doing outside of your comfort zone?

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Filed under Mental Well-Being, MS and Exercise, MS and Fatigue, MS Symptoms, Riding Out a Relapse

Meet me at the Photo-shoot: Going outside of your comfort zone.

 

To be comfortable outside of one’s comfort zone, you’ve got to go there daily. Eventually, what’s uncomfortable becomes comfortable again. That’s what I tell myself.

AComposite1

Abby met us at the door. She was glowing, not because it was hot, and it was, but because she is a new mom giving birth in about 4 weeks. She’s one of my “Young Barista’s”. A group of young people who have worked in my favorite cafe’ over the past few years. They had taken very good care of me in my hours there, writing. They have also at one point or another, modeled for me, and I’ve told them all, “when you have your first baby, call me. I will do a photo-shoot for you.” So, I wasn’t surprised to answer my phone and hear Abby say, “Estizer, remember when you said…”

I’ve since learned to never tell anyone what I will do in the future. This could not have come at a worse time. I haven’t taken my “real camera” out in about 2 years, and was honestly just not strong enough to do it now. But…how could I tell her, no.

I mentioned this to a dear friend, Karen T., who has helped me before on photo-shoots.  She said, “you can do it with help though, right? I’ll be your “photo-go-fer”, for a day. I was overjoyed, this meant I could tell her, YES!

The day of the shoot came, and it was extremely hot. The heat was taking it’s toll on me but, my first concern was my pregnant Mom. Did she have water? Was she in the shade? Was she relaxed? While I was watching Abby, Karen was watching me. Do you have any water? Can you come into the shade? What else do you need?

I only had to “think”, I need the camera over here and Abby over there; Karen and “Dad”were on it. In this heat, it was tough for me to think everything through. The technical stuff, F-stops and shutter speeds, filters and sunlight. Ultimately, I had to let the thinking go.The technical stuff was overwhelming. I took a deep breath, relaxed, and let my inner photographer go free. I kept an eye on my watch because I was mindful of my pregnant mom. I wanted to finish and be out the door in under two hours. 1 hour and 45 minutes…SUCCESS!

Karen and I went to dinner. I was so exhausted that I cried in the parking, lot out of sheer gratitude and overwhelming fatigue.

I can push myself through the eye of a needle, but, the cost can be quite high. In this case, so was the pay off.

Push yourself. Go outside of your comfort zone. You’ll discover you can recover some of the old you, or if you’re lucky, you’ll discover something even better…a new you.

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What takes you outside of your Comfort Zone? What things have you changed to make that happen?

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Filed under Ilness and The Arts, Mental Well-Being, MS and Exercise, MS and Fatigue, MS and Pregnancy, MS and Visualization, Riding Out a Relapse, Uncategorized

MS and Exercise: “But you look so good.”

Forgive me because I look so good. I would trade you in a heartbeat.

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Physical Therapy is important to me. In every case when I’ve needed it, it has made a positive difference for me. Admittedly, doing the exercises at home is a lot less fun. I’m a social person. I get to know everybody there. I refer to the receptionist as my “co-worker”. We talk about all the things co-workers talk about: the kids, weather, recipes, weekends, gossip, and anything else good.

Now, I’m on my own. I need to DO things now that use my new strengths. Why not go to the playgrounds 🙂 I say hello to all the parents and even explain why I’m there. It removes the “creep” factor. I make friends. So far my friends list is only Finn, who’s 8 and his little brother Akai who is 5. He broke his nose out there before we met; yet, I was supposed to know that already, I’m an adult. 😦

On this particular day, the “Dad” said, “But you look so good. The things you can’t do…most people our age, can’t do.” Forgive me here, for the negative feelings this evoked: “That’s because YOU dad, and most people “our” age (He’s at least 15 years younger than I am) are 100 pounds overweight…just like you. They also don’t WORK as hard as I do, eat like I do, take the meds. that I do, or make the choices that I do, to stay as able as I do. They don’t leave the career they love, and the money that goes with it. They don’t “crash” 12 hours a day from fatigue, and have less sex.  Random I know but, no energy…no sex. Keeping my temperature down is so critical, I may shave my head in the summer while you go out tan. I’m a VEGAN for goodness sake, and you look like a steak! They’ve never been in a wheelchair, felt my pain, never used a cane, and never had to be carried up the stairs by their husband. THEY, Mr. Fat dad, take these things for granted. Forgive me because I look good. I would trade you in a heartbeat. Except the 100 pounds, you can keep that.”

Of course I didn’t say any of that, I paused, and said, “Well, ugh thanks…I guess”.

Truth is, I know Fat Dad has his own cross to bear and no, I wouldn’t trade him…EVER. I’ll keep my MS and all the crap that goes with it. It’s MINE and we’ve learned to co-exist well…well, well enough.

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“Meet me “Under the Bridge”:Going outside your comfort zone!

To be comfortable outside of one’s comfort zone, you’ve got to go there daily. Eventually, what’s uncomfortable becomes comfortable. That’s what I tell myself.

Not doing what I used to do has been driving me up the wall. My goal is to do even more than I did before. I want a job. Not just ANY job, but a job that is outside of my comfort zone. My strategy to achieve this is, to do something outside of my comfort zone everyday! Oh yeah, I’ll do some other things too, get stronger, do my exercises, meditate, get enough sleep, drink more water, blah, blah, blah. You know the drill.

It helps that I’m pissed off because I’ve lost some things, like my camera. I haven’t actually lost it, but I’ve lost the ability to use it. My balance and strength being issues, my 20 pound camera bag, plus my tripod is just impossible. I’ve been reduced to my CELL PHONE CAMERA! Nonetheless, “getting the shot” has always made me, walk further, squat deeper, climb higher, go off the road, and…under the bridge. Push myself.

This past week my comfort zone adventures were to the Palmer Riverside Pier Park, Easton’s Wed. Farmer’s Market, Bethlehem’s Municipal Walking Park, and Veg Fest in Bethlehem, PA.

I want to wrap this up by saying, please, go outside of your comfort zone, wherever that might take you.  Whether it’s white water rafting or going to the mailbox, do it…a lot. You’ll discover you can recover some of the old you, or if you’re lucky, you’ll discover an even better, new you.

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Links of interest for services/places featured in this weeks slideshow as well as “Pintlala Creek” Under the Bridge:

Bethlehem VEG Fest,

Bethlehem Municipal Park

Easton’s Palmer Riverside Park

Easton Farmer’s Market

Last Chance Animal Rescue,

“Under the Bridge”,” Back to Lowndes County-Pintlala Creek”

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Filed under MS and Exercise, Riding Out a Relapse

MS: “How’s Your Game?”

Guinness-adG-R-E-A-T Guinness Commercial!

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The Farmers Market-2013

Apple Ridge Farm

Apple Ridge Farm

My quaint hometown of Easton, PA has the oldest continuous running open-air Farmer’s Market in the country, and the best. It began in 1732.  Today, I used it as a test. I went last year  and I felt like Katnis, in “The Hunger Games” trying to get out alive. It was treacherous. My balance was horrible and it was worsened by the cobblestone walk, the flowers, the tents, the colors, the tables, the crowds, the food, the smells, the talking, the music! It was sensory overload. I got home in tears, vowing to never leave the house again.

Now…I think I’m ready to go back in.

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Now that the day is over, I am still alive. Not heroic, but alive. Not in tears, just tired.

My goal is to attain a level of ability that allows me to move through the world unencumbered. To move, to walk, to work.  That is my goal.
VENDORS in SLIDESHOW: Apple Ridge Farms, Easton Salsa Company, Artist’s in the Alley

COMMENTS: What is your benchmark for good health? What is your goal? What are you doing to get better? What do you use to indicate that you are doing your best?

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Filed under Ilness and The Arts, MS and Exercise, Riding Out a Relapse

Constipation

smiley-face-maybe-next-time

Let’s face it, we all have problems going (or not) from time to time, and it’s not especially sexy to talk about, but WTH. In normal people constipation is when, occasionally, the stool does not move through the intestine as it should and/ or, there is not enough water in the colon.   MS patients deal with constipation more than most. If you’re slow like me, you don’t even realize it’s the MS.

As I said, stool must keep moving. In people with MS, like me, lesions may prevent the brain from accurately receiving or transmitting signals that control peristalsis. I remember learning about that (peristalsis) when I taught Anatomy and Physiology. In other words, my colon may not be receiving the signal for involuntary movement that would keep the stool moving through the digestive tract.

Lack of physical activity is also a downer. It’s critical in moving digested food through the digestive system. Things like walking, which seem so simple, actually do more than just get you from one place to another. Many of us are unable to move around and walk much, due to weakness or spasticity.

Other causes could be a diet that does not promote good digestive health. Not enough FIBER! But hell…I’m a Vegan! Maybe there’s not enough water to help all that fiber through. I drink so much water I might as well be a fish. Let’s not forget that the side effect of some medications is constipation! That’s it! That’s it! My anti-depressant, Wellbutrin is the cause! (happy dance here) But wait…the side effect of NOT TAKING my Wellbutrin, is…depression! Ugh, I don’t THINK SO!

Pause here! Insert huge red flag. Remember I’m slow. I used to pee like a lion.  My coworker would come into the 3 stall ladies room, LOL and say,”Estizer, is that YOU?” It was identifiable. Now, I pee like a kitty, you don’t even know I’m there. L I’ve seen a Urologist/Gynecologist and she says, “Your bladder is fine and you have no urinary tract infection” (she also looks 12). How is this? I KNOW my body and something is drastically different. Because of my MS, I’ve discovered that there are time’s I can’t put my finger on what’s wrong, and they can’t SEE it. If it ain’t broke…don’t fix it. I know now to “let it go “and just let my body handle it.

I begin to see a connection here. Things down there are sluggish. It could be that my urinary system is not receiving the signals properly for involuntary movement (I pee like a kitty). If my MS is causing THAT problem, it might also be affecting my digestive system causing chronic constipation. BOY, do I like connecting the dots!

We can’t control which nerve signals in our body will be disrupted, or for how long. We can, however, give our body a head start by maintaining healthy habits all of the time.

Eat LOTS of fruits and vegetables (fiber), drink LOTS of water, and exercise daily.

 

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Filed under MS and Exercise, MS and Nutrition, MS Symptoms, Uncategorized