New Orleans Archive

10

The Power Of The Chair

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“Never worry about numbers. Help one person at a time, and always start with the person nearest you.” ~Mother Teresa

I own two power chairs. One is portable and the other is heavy-duty. Due to limited space in my home, the heavy-duty chair has been stored at my parent’s house. I never use it and it just sits in their dining room taking up space. My parents didn’t mind it staying there, but it bothered me. So last week I decided it has been at my parent’s house long enough and it was time to sell it.

So, what did I do? I took some pictures of it and tried to sale it on Facebook. I thought it was a good idea, but apparently…no one else did. Not one call.

Plan B was to give it away. I wish I had done that from the start.

I connected with my local MS Society and they gave me some leads of people who were in need. After a few days, I was able to connect with a fellow MSer who needed a power chair.

I recruited my dad to handle the specifics and the actual transfer of the chair. He’s good with that kind of stuff.

The man resides roughly two hours from my parent’s home, but was happy to make the trip. He was so appreciative.

Who knew how rewarding helping someone would be.

13

Therapeutic Horseback Riding

I am back at the farm for another season of therapeutic horseback riding.

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I ride until August, then we take a couple of months off because of the heat.

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It cost $25 and I go once a week.

I really love it and recommend it to everyone.

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Meeting my new horse. (Video)

31

A Friend Indeed

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“Alone, all alone
Nobody, but nobody
Can make it out here alone”
– Maya Angelou

Lately, I have been feeling down. Unfortunately this is nothing new. Two to three times a year I go into a “funk”. Not sure what it is but I really hate when it happens.

I mentioned this to my MS support group and after hearing about my troubles, a fellow MS group member, invited me to hangout with her for the weekend.

Sue, who has become a good friend and confidant, recommended we attend the New Orleans Oyster Festival. I agreed and we set a time and chose Sunday as the date.

Once the big day came, I was so excited. As soon as I woke up I began getting ready. As I was putting on my clothes, I could hear the patter of rain on my bedroom window. I looked outside and sure enough it was raining. I felt like crying. Then the phone rang. It was Sue. I just knew she was going to cancel. I answered the phone with a melancholy hello. She ecstatically answered back, “You ready?”

I said, “Sue, it’s raining.”

She replied, “If MS can’t stop us, how we gonna let a little rain stop us? Girl, put on a hat and let’s go!”

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So we met on the Riverwalk in the rain. We were able to find some shelter and settled in to eat our charbroiled oysters and shrimp po’boys. The sun even peaked out and gave us a thirty-minute reprise so we could see the bands play music and watch an oyster-eating contest.

On the way home, I just felt so happy. Yes, my issues were still present but for a little while I was able to escape the worry and tension that always accompany my problems.

It’s funny how friends and family can come through just when you think no one cares. Yes, a friend in need, is a friend indeed.

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23

Parade Days

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Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

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34

Half-Full

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Love them or hate them, pharmaceutical drug companies are here to stay. The odds are that if a cure is ever found, it will be discovered by a drug company.

For that reason, I decided to take an offer to attend the first MS Patient Blogger Advisory Board meeting hosted by Novartis Pharmaceuticals Corporation. I was surprised they asked me to attend because I no longer take their MS drug Gilenya, but I was very honored they did. They paid for me to go to Morristown, New Jersey and be a part of the advisory board. Don’t worry, I’m not going to try and sell you on the benefits of using Novartis products. As a matter of fact, to my surprise Novartis really didn’t talk too much about their company’s products. The focal point of the event was the accuracy of their marketing in meeting the evolving needs of MS patients.

Along with a group of eight other MS bloggers, I was asked for input on communication needs within the MS online community and feedback on some of Novartis’ social media channels. It was interesting to find out how drug companies work as far as marketing and the government guidelines they have to follow.

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As far as the trip itself, it turned out pretty good considering that traveling can be a challenge for me. My husband, Tommy, and I went from 55 degree New Orleans to 7 degree Morristown, New Jersey. Yikes! We flew United Airlines, so that meant I had to use an aisle chair to board the airplane. It wasn’t so bad this time. I think that’s because I know what to expect now. Once we got to New Jersey, I was nervous because there was snow everywhere, which was a problem because I was using my scooter and it isn’t waterproof. So I was happy to find out that all the events would be happening inside our hotel and we would not have to venture out into the snow that much. The hotel was also connected to a mall so that made me really happy.

The best thing about the event was that I got a chance to give my input to a company that is searching to find a cure for MS. The only way to change what we think is wrong with pharmaceutical companies is to engage with them and if they initiate the conversation that means they may actually listen to the suggestions. I believe pharmaceutical companies engaging with patients is a positive step. Yes, it’s about profits but by exchanging dialogue with them, maybe we can make it more than that. So when it comes to pharmaceutical drug companies I will look at the glass as half full and not just consider them as the big bad wolf.

I also got a chance to put faces to the names of bloggers I have been reading for years. It was an honor to be amongst peers that not only understand but are also going through the same things as myself.

Check out my fellow attendees and their blogs:

·Dave Bexfield – Dave’s Active MSers Blog
·Jamia Crockett – My MS Heels…My MS Heals
·Jeri Burtchell – Partners In Research
·Joan Wheeler – A Short In The Cord
·Jodi Bean – Jodi Bean’s Blog
·Jon Chandonnet – Jon Chandonnet
·Lisa Emrich - Brass and Ivory and Carnival of MS Bloggers
·Matt Allen – Matt’s Multiple Sclerosis

Nicole with Lisa Emrich (Brass and Ivory, Carnival of MS Bloggers)

Nicole with Lisa Emrich (Brass and Ivory, Carnival of MS Bloggers)

Nicole and Dave Bexfield (Dave's Active MSers Blog)

Nicole and Dave Bexfield (Dave’s Active MSers Blog)

34

A Night Out

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The other night my husband and I went on a good old fashion date. We left my MS with a sitter and headed to a concert at a local nightclub. Of course, I was in my ever-present handy wheelchair decked out with mountain bike wheels. I was also in a good mood and ready to take on the winter air.

We arrive at the club. We are early and due to my wheels, they put us first in line. When the doors opened the guards ushered us straight in. Subsequently, we had first row standing room only positions. I was thrilled. I was proud of myself for even going. I left the confines of my laptop and condo. My biggest worry was keeping my bladder in check.

The night began with a local female disc jockey. For some reason I felt a shared feminine connection. She was dong what she loved to do, despite the odds that stack against her. I like to think, I am too.

An hour later, the funk star, George Clinton & Parliament Funkadelic, arrived and nonchalantly passed directly in front of us! For those of you who are unfamiliar with his iconic status, the closest person I can compare him to is the late great Rick James.

Within minutes the house was packed. Still, George Clinton himself managed to greet me in person. It was the highlight of the night. Really, I think his security detail was concerned about a possible stampede.

George Clinton, “The Atomic Dog”, stopped to talk to me.

I’m not claustrophobic, but even the most stoic of us would have been a bit taken aback. Not even the oh so strong smell of marijuana could keep me calm. Since I was sitting, I felt that people were engulfing me. I think my husband saw my level of anxiety rising. He gently grabbed my hand; something he seldom does, in this case it only confirmed we were in a sticky situation.

A little over half way through the show we decided to leave. We received special permission to exit through the artist only door. There was no way we could make it back through the crowd to the normal exit.

After all, an hour and a half was good for me. I was drained. I met George. I was ready to go; besides, I had to go to the restroom!

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46

All Is Well

Well being and happiness

I can remember years ago when the focus of my life wasn’t multiple sclerosis. There was a time when I wrote emails that didn’t pertain to MS and the subject didn’t dominate my every conversation. But unfortunately those days are over.

It bothers me that my “new” life is all about MS. Sometimes I forget that there’s more to me than multiple sclerosis.

I use to think it regrettable that you guys didn’t know me before MS. I was so active. But now that I think about it, I’m still very active. It’s just a different type of active. I participate in riding horses on a local farm. I’m even presently seeking out more MSers to join me through the National MS Society. I do modified physical workouts, I study the Spanish language, I blog and write and I read incessantly. Lastly I watch as much TV as I can fit into my schedule. I’m not sure if that’s good or bad.

So, what do you do in your free time?

If the Culture Doesnt Work Dont Buy It

I wanted you to know that life is not all bad. We may have to plan a little more than others, but life is not all bad. The horrible stuff just makes for better reading.

Thanks to you guys, I now know that the woman I am beneath the MS continues to shine through and most importantly that there’s more to us than multiple sclerosis!