About Author: Nicole Lemelle

Website
http://www.mynewnormals.com
Description
My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

Posts by Nicole Lemelle

8

Biogen’s PLEGRIDY

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The Food and Drug Administration (FDA) approved Biogen Idec’s multiple sclerosis drug Plegridy as a treatment for adults with relapsing forms of MS or RMS. This encompasses people who experience periodic MS attacks, such as those who have relapsing-remitting MS or secondary-progressive MS with relapses.

The new drug was green-lighted based on the results of a 2-year long global ADVANCE study. The research included 1,516 people with relapsing forms of MS. It showed that PLEGRIDY reduced annualized relapse rates at one year by 35.6% in patients getting injections every two weeks and by 27.5% in those on four-week dosing compared with placebo. It met all primary and secondary endpoints by significantly reducing disease activity including relapses, disability progression and brain lesions compared to placebo, and showed favorable safety and tolerability profiles at one year.

Similar to Biogen’s multiple sclerosis drug Avonex, PLEGRIDY belongs to the interferon class of medicines. But unlike Avonex, PLEGRIDY has an extended half-life, allowing for a less-frequent dosing schedule. It is dosed once every 2 weeks instead of once per week.

PLEGRIDY is administered with an autoinjector or a prefilled syringe subcutaneously instead of intramuscularly. This means PLEGRIDY is injected under the skin with a smaller needle, which can be less painful.

Biogen expects PLEGRIDY to eventually replace its older best seller Avonex, which has compiled global sales of more than $1.5 billion in the first half of this year. They also want to take market share from other rivals even as overall sales from the class declines with the increasing popularity of oral treatments. The company said it would continue to support Avonex for patients who are comfortable with the treatment and not looking to switch.

The most common side effects to PLEGRIDY are injection site reactions, flu-like illness, fever, headache, muscle pain, chills, injection site pain, weakness, and joint pain.

PLEGRIDY is expected to be available by prescription in mid-September 2014.

So far, the news about PLEGRIDY seems very promising. I think it’s encouraging to have additional treatment options available. Too me, PLEGRIDY sounds like a new-and-improved version of Avonex. It’s especially great that the injections are once every two weeks.

The question is, overall what does this mean?

Does the development of new drugs like PLEGRIDY bring us closer to a cure?
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*Source- BIOGEN IDEC’S Press Release- Friday, August 15, 2014 6:32 pm EDT http://www.biogenidec.com/press_release

15

Beat The Heat

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“What dreadful hot weather we have! It keeps me in a continual state of inelegance”. ~ Jane Austen

It is incredibly hot this summer. I hear people complaining about it all the time. Nevertheless, they all still seem to be able to go about doing their daily task. For them, it’s basically an annoyance or at the most, it presents some discomfort. For me, it has way more damaging effects. As soon as the sun’s rays hit me, it sucks every ounce of energy right out of my body.

At first, I thought heat affected everyone with MS in the same negative way. But I see news stories of people with multiple sclerosis running marathons and participating in bike events. I find that incredible! I can barely go outside for 10 minutes without wilting in the sun.

How are they doing that? Am I in the minority?

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I have a cooling vest that is 5 years old. It helps, but not for very long. My friend, Dave Bexfield from ActiveMSers, suggested I get a new one. Cooling vest technology has improved over the years and there are a larger variety of styles available as compared to the recent past. He recommended a couple and I chose the one that best met my needs.

That was great advice because using my new cooling vest has really worked for me. Besides just staying in the house, it’s pretty much the only way I can think of to beat the heat.

So, I need some help. What’s the secret?

How do you deal with the heat?

24

Sunshine And Rainbows

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“But better to get hurt by the truth than comforted with a lie.” ― Khaled Hosseini

Yesterday, after a doctor’s appointment, I got in my car and the radio was playing “Happy” by Pharrell Williams. I really like that song. Hearing it makes me feel so good.

The next song to play was “Rolling In The Deep” by Adele. I’m married but I can still relate to its “lost love” inference.

The melancholy message of “Rolling In The Deep” is totally opposite from the “Happy” song. Nevertheless, I love them both.

I see my blog as comparable to that radio station’s sequential music programming. Consequently, sometimes it’s happy and sometimes it’s sad.

Recently, I received a few comments and emails asking me why my posts are so negative. For those people that asked, I’ve decided to answer them here.

I didn’t realize so many of my posts were perceived as negative. I went back and looked and from my count most aren’t negative. They just reflect my life. I write about my journey living with MS. In doing so, I chronicle my experiences and feelings. And just like that radio station’s playlist, sometimes I’m up and sometimes I’m down.

Unfortunately, my life is not a Hallmark card. It’s not always sunshine and rainbows. If I pretended it was, this blog would be full of lies. I promised myself that my writings will only tell the truth and sometimes that truth is ugly. So if I can’t always see the bright side of living with a chronic debilitating disease, please forgive me.

I am just like everyone else, I have my good days and I have my bad days. And I’m happy to say that my good days out number my bad.

16

Attack Of The Clonus

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“When we meet real tragedy in life, we can react in two ways – either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength.” – Dalai Lama

With my MS, I not only battle the sickness of the disease but also it’s side effects. My latest side effect is sore legs.

Why is that, you might ask? Well, its because I have clonus.

Clonus is a series of involuntary, rhythmic muscular contractions and relaxations. Unlike small, spontaneous twitches, clonus causes large motions that are usually initiated by a reflex. It is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases, accompanied by spasticity.

So when you look up clonus in the dictionary you see a picture of me.

It’s weird because, despite not walking, the clonus causes my legs to continuously move. When my foot is placed in a certain position, my leg jumps around like a jackhammer. I hate the vibrations. They jerk me all over the place until I find the right position that will not set it off.

When it’s happening, it’s like there is something in my body that’s alive and moving around. My legs uncontrollably bounce up and down and by the end of the day they are usually sore and tender.

Having it isn’t the end of the world; it just bothers the heck out of me.

Do you suffer from clonus or have at least heard of it?

If so, how do you deal with it?

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.

16

Living Cliché

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“We have to dare to be ourselves, however frightening or strange that
self may prove to be.”
– Mary Sarton

I wish I had a boring life.
I would be a mom with two kids and a stay at home wife.

I’d watch TV half the day.
Then shop the other time away.

I’d have lunch with friends.
Then, the next day, meet them again.

Go dancing on weekends and stay up late.
Every night, dinner with my husband is a usual date.

No medicine to ingest. No shots to inject.
I can go all day, no need for rest.

No doctors to see. No nurses around.
I’m always happy, you never see me frown.

I wouldn’t have to explain why I’m in a wheelchair, because there would be none there.

I would go to the movies and watch it from beginning to end.
I would run at the park with all my old and new friends.

I would sleep all day by choice.
And when I spoke, everyone would respect my voice.

No more smiling out of fear.
I’m the best at everything, the envy of all my peers.

My husband would be my husband, not my caretaker or nurse.
I would love that the most, because that part hurts the worst.

Am I wrong for wanting to be like everyone else?
I’m sad that I feel this way, but I really wish my life were a cliché.

19

Pure Magic

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“Hope is a good thing, maybe the best thing, and no good thing ever dies.” – Stephen King – The Shawshank Redemption

I am trying to live beyond MS. It has produced so many obstacles in my life that I can’t see anything but the negativity that arises from its poisonous grasp. The disease comes with countless constraints that induce me into becoming a prisoner to its daily whims.

It stunts desires, kills cravings and destroys aspirations. Sometimes it feels as if it’s choking the life right out of me. Even thinking of it now leaves me breathless.

MS hurts. If you let it, the pain of the disease can pull you down further than hell. Lower than you can ever imagine. The whole magnificent emptiness that is MS, wants to control your life and destroy any semblance of happiness.

In my fight to remain in control my main refuge has been hope. Hope is the only thing that keeps me sane. Hope brings me clarity. It sometimes takes me away from MS. It allows me to focus on a particular instant of MS free happiness. And those moments, when I forget I have MS, are nothing short of magic.

Pure magic.