Step Forward in MS Research

Terry Wahls knows first-hand what the right diet can do for a person’s health and well-being. It’s been 10 years since she created the Wahls Protocol, a diet that helps her combat the fatigue and physical symptoms of multiple sclerosis (MS). Wahls, a University of Iowa professor of internal medicine, was confined to a wheelchair before she began following the diet she created to treat herself.

Terry Wahls, MD
Terry Wahls

The Wahls Protocol—a diet and supplement regimen based on a Paleolithic diet—led to a dramatic improvement in her mobility.

“In three months the fatigue was gone,” Wahls says. “In six months I was walking without a cane, and after nine months I was biking around the block. A year after I started, I did a 20-mile bike ride.”

Hers wasn’t the first diet designed to minimize the physical symptoms of MS; Roy Swank began studying MS in 1948 and created the saturated fat–minimizing Swank Diet around 1950.

Now, the National Multiple Sclerosis Society (NMSS) has awarded Wahls a $1 million grant to compare the two diets’ effects on multiple sclerosis–related fatigue, a disabling symptom that can significantly interfere with a person’s ability to function at home and work.

The grant is one of the largest financial commitments made by the NMSS to research this year. It is part of a projected investment of $50 million in 2016 to support more than 380 new and ongoing studies around the world aimed at stopping MS in its tracks, restoring patients’ function, and ultimately ending the disease forever.

“The National MS Society is committed to identifying wellness solutions to help people live their best lives,” says Bruce Bebo, the society’s executive vice president for research. “We’re very pleased to support a rigorous clinical trial to test the ability of two popular MS dietary approaches to address the disabling symptom of fatigue.”

Wellness and the strategies necessary to achieve it are high priorities both for people living with MS and for NMSS’s programs and research. For the most part, studies researching dietary approaches to combatting MS have generally been too small or poorly designed to provide definitive conclusions. This new trial will carefully assess the potential impact of diet on the fatigue—and potentially other symptoms—commonly experienced by people living with MS.

Wahls has been studying the effects of diet on MS for more than a decade. She was diagnosed with MS in 2000, and by 2003 the disease had progressed so much that she was confined to a wheelchair and feared she would be bedridden. In 2004, she says, she returned to her basic science roots and spent the next three years researching the effects of food and vitamins on the body.

In the fall of 2007, Wahls put her new protocol into practice, using herself as the first trial participant. Her protocol is a modified Paleolithic diet, which excludes grains, eggs, dairy products, legumes, and nightshade vegetables and places a heavy emphasis on vegetables, fruit, meat, and fish.

Within months, Wahls’ fatigue was gone, and she started walking again. Then she started riding a bicycle.

Wahls worked with other University of Iowa researchers to write up a case study of her own results, which they published in 2009.

“Our work has progressed from the initial case study describing the use of diet, exercise, and electrical stimulation in the setting of secondary progressive MS to a small pilot study using the same protocol that I used for my recovery in others with progressive MS, which was published in 2014. We saw the protocol was associated with remarkable improvement in function in others with progressive MS,” she says. “We were able to show that the program was well tolerated and was associated with clinically and statistically significant reduction in fatigue and improved quality of life.”

For the new study, investigators will be recruiting 100 people with relapsing-remitting MS who experience fatigue to enroll in a 36-week clinical trial. Participants will follow their usual diet for 12 weeks and then be randomly assigned to follow the Swank Diet or the Wahls Protocol for 24 weeks. Their health and activities will be extensively monitored during the study.

Swank created his diet after he observed a higher incidence of MS in geographic areas where people ate meat, milk, eggs, and cheese—foods that are high in saturated fat—and a lower incidence in regions that ate fish. He spent more than 50 years recommending this diet to his patients and monitoring their health.

Both diets have been shown to have a positive impact on patients with MS.

 

Resource:

Rossiter, M. (2016). Another step forward in MS research. Retrieved September 14, 2016, from https://now.uiowa.edu/2016/09/another-step-forward-ms-research

Uncomfortable Pain

I haven’t blogged for awhile. Minus the post from a few days ago.

My MS is keeping me homebound; 91% of the time. Since Monday my left leg has turned into what feels like a block of cement. I’m pretty much in a slight state of depression over this. I walk and feel nothing but pain. I want to cry, but I can’t. I’m dragging around my leg and I know people are looking at me, so why go outdoors? Why face the stares?

I have to. Because I do need to make a living while I still can.

Sigh.

Orlando

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I feel as though I need to address what happened Sunday morning.

This act of terror hit close to home. No, I’m not gay myself. But a close friend and family members are. In fact, one lives close to Orlando.

Let’s look at it this way.

We’re all supposed to be free to love whomever we wish to love in this country. We’re supposed to have that right. No one has to agree with who we love.

Here’s the problem:

A man saw something he didn’t like between two other men. If it upset him, well, in my opinion, it was none of his business what this couple was doing.

That was the solution.

Mind your business.

That’s also another problem in this country. People don’t know how to stay out of anyone’s business.

This terrorist took it upon himself to take the lives of 50 people and injure 53 more. All because he didn’t agree with their lifestyle? How did the FBI let him skim under the radar once he was red flagged?

The more the week progresses, the more we try to understand how this happened.

As a Catholic person, I try my best not to judge anyone. It’s not my place.

In America- we’re allowed to voice whatever opinion we have. Thing is: Someone’s opinion usually initiates more hate.

I hate to break it to you Christians who may be reading this: The Bible may state it’s a sin for a man to lay with another man. You do not know if Jesus/God said this. YOU DON’T. Just because a book tells you that it is the “word of God”, doesn’t mean it is. For all you know, a crackpot could’ve written the Bible and made his own beliefs regarded as God/Jesus’ beliefs.

Again. I’m not an atheist. I’m Catholic. And I have a hard time believing that “God’s word” judges other people. When… the Commandments speak of adultery, murder…yet people do this. Every damn day.

These victims in Orlando, God rest their souls, were out enjoying themselves with their friends, significant others, and families. Just because people don’t believe in gay marriage or gay rights; the people they were with, did.

This is a time we as a Nation should be looking at ways to prevent this behavior; not commend it. No one “deserved” what happened to them.

Hate is a major problem in this country.

Let’s stop the hate and come together.

At the end of the day…

Love wins over hate.

 

 

 

Extreme Heat & MS

As we’re soon to be hitting the near 100s this upcoming week on the East Coast; I felt this would be the time to discuss heat and multiple sclerosis.

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“Studies report that about 60 to 80% of people diagnosed with MS show excessive sensitivity to heat. People with this neurological disorder experience a temporary exacerbation of their existing symptoms and also new disturbing symptoms when they are exposed to elevated temperatures. They are sensitive to even a slight increase in their core body temperature (0.25°C to 0.5°C) that may be due to physical exercise or a warmer environment.”. (Wlassoff, 2014).

What happens when exposed to extreme temperatures:

  • Fatigue is a common symptom and it is seen in nearly 70% of people with MS. Premature fatigue occurs in people with MS when they are exposed to even a slight increase in temperature. Weakness, especially affecting the limbs is also a symptom that is perceived during or aggravated by a temperature rise.
  • Central pain is another common symptom that worsens with an increase in temperature. Studies propose that the reason behind this may be the damage caused to the thalamus and the spinothalamic-cortical pathways leading to thermoregulatory dysfunction. Numbness is another symptom that worsens with rising core body temperature.
  • Cognitive functions in MS patients are also sensitive to heat. Memory problems, judgment difficulties, concentration difficulties and problems with other cognitive skills like language comprehension are more pronounced with the increase in body temperature. A recent study pointed out that people with MS demonstrated worsening of cognitive functions in warmer days.

 

Resource:

Wlassoff, V., PhD. (2014, September 13). How Temperature Affects People With Multiple Sclerosis. Retrieved June 10, 2016, from http://brainblogger.com/2014/09/13/how-temperature-affects-people-with-multiple-sclerosis/

 

 

The World of Me…

I haven’t updated this in awhile because the heat has had me down and out. Of course, my migraines are back in full force. It seems like there is no relief for me in the migraine situation. Well, my neuro did suggest Botox injections. It sounds silly to get Botox for a migraine. I’m sorry, it does. I’ll hope that something helps soon. These crippling migraines are a little too much right now.

I’m in the middle of my employment situation. My previous job I left a week ago, well, they were well informed that I had MS. They said they were cool with it. Anyway, they could help me, they would. Of course, I’m going to point out when I think it’s a tad bit warmer than it should be in the building. I can’t control my body temperature. They knew this. As an assistant manager quit the week before, I walk into work and it is blazing. Someone has the thermostat way high. I felt sick. I felt dizzy. I couldn’t handle it. I simply thought I was going to die. When I asked for the heat to be turned down, no one ever touched it. I suffered for almost three hours before the other person I was working with noticed I was sluggish and turned the AC on. Needless to say, I quit two days later. Right now, I’m enjoying some down time. Kinda. The migraines.

Today, we finally laid my uncle to rest. His ashes to rest. I still feel empty about this. 5 months later, I don’t know how to … feel. Empty seems appropriate. 13310633_10153129529159364_4889025942678562647_n13339483_10153129529094364_5536415203061480594_n (1)13335555_10153129528984364_324781674203741895_n13315273_10153129529269364_3328635463381753577_n

After this…I came home to find out a friend I met while volunteering at The Salvation Army passed away from his heart condition today. He was 23. Due to get married in 2 weeks and was going to be put on the heart transplant list in 17 days.

It is another reminder that life is short.

Cherish everything.

Tomorrow isn’t promised.

Sympathy… I Don’t Need It.

Whenever someone finds out I have MS, they act like I’m dying. Like it’s the worst news I’ve ever been given. Of course, I automatically want to punch said person(s) in the throat. Why?

Because I am left the rest of the day feeling self-conscious about myself. Whenever I get this sympathy,  I become uncomfortable with my diagnosis.

Note to you healthy people: Don’t do this to MS folks. Don’t.

We already have our issues with our bodies every day and we don’t need your sympathy to where we are even more aware of our issues. I don’t need to feel like there’s something “tragically” wrong with me. There isn’t. Outside of this disease, I’m quite okay. Fine, actually. I’m not depressed. I’m not upset anymore that I have RRMS, I’m quite content with it. It’s the hand I got dealt.

So please, when you find out my diagnosis, don’t give me that look and give me your “worst news” voice. Smile and wish me luck or ask me about my journey. Or please, change the topic. Or keep walking.

One Lovely Blog Award

Let me start by thanking MSnuButterflies for nominating me for this. It’s kind of flattering to think one of my fellow bloggers gave me this honor when I’ve only had my blog up a short time. So, thank you again. (Please stop by her blog for awesome reads about laughs, life, and of course, MS).

Seven things about me:

  1. I love everything about there is about photography. I’m rarely seen without a camera in my hand.
  2. I’m a die-hard Steelers fan.
  3. It’s a well-known fact with everyone I know and now I’m sharing with you that I wish Channing Tatum would fall off a cliff somewhere. I can’t stand him.
  4. My kryptonite is tequila.
  5. I swear Roger the Alien from American Dad is my real brother. (Or sister???)
  6. I’m passionate about helping the youth in my community.
  7. I frequently volunteer in homeless shelters in my community

Please check out the 10 blogs I have nominated. I found it really hard to narrow it down to 10. There are so many wonderful and inspiring blogs. I encourage you to visit all of these wonderful blogs.

  1. LivingIncurably
  2. Being Lydia
  3. Mini2z
  4. As I Live & Breathe
  5. Personally Me Blog
  6. Indisposed and Undiagnosed
  7. Butterfly Sand
  8. Pain Pals
  9. Subjunctive Collapse
  10. Two Rooms Plus Utilities

If you choose to accept my nomination for “One Lovely Blog” award please follow these rules.

Award rules are:

1. Thank the person that has nominated you & include a link to their blog.

2. Nominate at least 10 blogs of your choice.

3. Link your nominees and let them know of your nomination.

4. Share seven different things about yourself.

 

My Adventure

My sister and friend (plus some kids) decided we all needed to have a hiking adventure yesterday. Me? Well, I was kind of leery about it. My experience with the Copaxone hasn’t been that great. I ended up with an Upper Respiratory Infection and tonsillitis. I was talked into the hiking adventure, however. Giving the benefit of doubt, I joined.

It couldn’t be that bad, right?

Right????

No, really, it wasn’t that bad. The hiking trail was beautiful. I do mean BEAUTIFUL.

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Then there was this waterfall…20160518_202445

….which my friend’s daughter later fell down and went with later. (Literally. She fell down the waterfall) and my sister cleverly yells “Don’t go chasing waterfalls..”

and then…

I’m proud of this one. I pushed myself to climb a cliff and finish the trail. Which I did.

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People may argue limits and boundaries with this disease… and I will argue one more time back. This disease is NOT and WILL NOT define who I’m going to be. I will continue to be who I’ve always been. A stubborn & determined person. I will always be that person. I may have MS… it does not have me.

Looking Back

I know almost every one of my posts are about Multiple Sclerosis and how it’s changed my life. A year ago, I would’ve never told anyone I knew or associated with I had this disease.I didn’t want anyone to treat me differently and I sure didn’t want anyone to notice that I was different.

However, around the time I was rediagnosed and going through the things I was going through; once I opened up about having RRMS, I didn’t look back. I don’t know if it was the point I was 30, going through a lot of stress and depression that finally made me open up- or if it was the fact I was tired of being alone and fighting this disease.

I lost a good friend. I’m still not sure what his problem was or is. Maybe he didn’t want to think of me any differently; hell, for all I know, we were never friends to begin with. Which is a whole factor that still makes me question a lot of things since I was 16… but now is not the time to get into it. Sometimes I wonder if he thinks I may be fighting a death sentence and he doesn’t know how to deal with it. What I do know is I’m done dwelling on this. Sure, it hurt me, but I’m adult. Not the 16-year old who would’ve handled this a lot differently.

These past few months have been the worst for me with fighting this disease. When my uncle passed away a few days before Christmas this year- all of the emotions and grief I went through made no sense. Nothing made sense. And when other family members were aware of my disease… the only thought in my head I kept hearing was “I don’t care. I don’t care.” The loss of my mom’s brother (the second one) was devastating. It was a blow I was unprepared for. I wanted to give up on everything. And after his wake- my life stopped making sense. Since his death, I know that I have to fight this battle. I have to. Today, my grandma brought up laying his ashes to rest next week– and this became a reality for me. My Uncle Bryan never is coming back. It still hurts.

The only thing I have gathered from this grief is that there are people who come into your life and you spend your time trying to figure out why this one person came to you— then you realize, it’s just God’s way of trying to make you feel better. The person I’m speaking of came into my and my sister’s life a few days after my uncle passed; I’ll be honest, this person is simply irreplaceable. Maybe my Uncle Bryan sent him to us– cause he knew how special this one person was… I’m not sure. What I do know, is I’m forever grateful.

Since I’ve been open and honest this past year about my RRMS; I’ve met some amazingly awesome people in the MS community I can never thank enough for being a support. Some of them are here on WordPress; some I’ve met on Twitter and Tumblr. Others are just people who’ve come into my life.

For that– I’m eternally grateful.

 

 

 

Hi & Welcome!

I’m not new to WordPress. In fact, I’ve had a previous Multiple Sclerosis blog. However, things take place and sometimes, a blog is the last thing you think about.

So…

I’m back and I would like to say “Hello” & “Welcome” to my blog. I don’t want to bore everyone who comes across this blog; so not every one of my posts will be about MS. I felt I should share my journey. I know we all don’t have the same stories, but I know there are are many of us out there who will not let this disease take anything else away from else. We will not let it define us.

We are Warriors. Fighters. Survivors.