Tag Archives: MS

MS Symptom I wouldn’t mind

Posted on September 9, 2009 | 1 comment

I do not take symptoms of disease lightly so please don’t misunderstand the following.

If I HAD to pick a symptom for myself it would be the one I read about today on Julie’s Blog. It’s called  “foreign accent syndrome”. Evidently, you still speak your native language but with a new accent.

This is a true story! While a little unsettling, I think it would be a blast to wake up one morning and have a perfect Australian accent!

Now, I don’t know if the symptom is so cool that you choose what accent you get, but if you could, what would it be?

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Eat Less

Posted on September 6, 2009 | 1 comment

If you know me or this blog, you know I think that food and weight can dramatically impact MS or any chronic health issue. If the truth be told, I feel like I have struggled with weight issues since I was twelve or maybe even younger.  I doubt that is unlike many of you, especially women.

I have counted points, ate only protein, eliminated carbs, counted points again, exercised too much, exercised too little, taken diet pills (way back when), binged, starved and anything else to lose weight and then gain it right back again. I have lost and gained the same twenty pounds for over twenty years.

Since my MS diagnosis, I started to look at food and weight very differently. It became about health instead of skinny jeans. I am almost rid of that pesky twenty pounds again and hope to approach the rest of my life much differently in terms of maintaining a healthy weight.

When I read this, it really made sense….

“Think of the insignificant gimmicks that you’ve been told will help you drop
pounds:

  • Eat breakfast every single day: If you don’t, your body goes into ’starvation mode’.
  • Drink Coffee to speed up your metabolism
  • Drink 12 glasses of cold water every day
  • Eat protein for lunch
  • Sip Green Tea all day
  • Take your Fish Oil Pills every day.

In reality NONE of these things are going to result in significant or long lasting weight loss results.

Each one is either a misuse of scientific fact (confusing an association with causation), is an exaggeration (the ‘metabolism boosting’ effects of green tea or caffeine) or is simply repeating common myths as facts (protein for lunch).

And while the health marketers that push these info tid-bits may or may not mean well, convincing you to focus on the minor and mostly irrelevant tasks can not only prevent you from losing weight, it can also affect your health.

Successfully losing weight seems to be one of the most difficult life-problems to solve.

Yet it can be solved with one of the easiest solutions: Eating less.”

Often overlooked, but so obvious.

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Do you B12?

Posted on August 18, 2009 | 2 comments

I get bored when I start to read something that becomes too scientific. While I like to understand why I take vitamins and other medications, it must be explained to me in the most simplistic way. Otherwise, I tune out!

In researching the importance of B12, I tuned out a bunch. Here is one simple explanation I found:

Vitamin B12 is a water soluble vitamin with a key role in the normal functioning of the brain and nervous system, and for the formation of blood. It is one of the eight B vitamins. It is normally involved in the metabolism of every cell of the body, especially affecting DNAfatty acid synthesis and energy production. synthesis and regulation, but also fatty acid synthesis and energy production.

While that is not all simple, it is simple enough for me to understand that B12 is a vital part of NORMAL functioning of the BRAIN and NERVOUS SYSTEM. I want that.

I found this article interesting (and simple) B12

Key Points:

“Studies have reported a significantly higher rate of vitamin B12 deficiency in people with MS than in people without MS, which is suspected to be due to problems with binding and transport of vitamin B12 (meaning that the body does not process vitamin B12 efficiently, which makes it difficult to maintain normal levels without supplementation).

People with vitamin B12 deficiency have destruction of both the myelinaxon. If the deficiency is severe, there can be serious brain damage, causing MS-like symptoms. Even when people have slight B12 deficiency, they may exhibit symptoms like fatigue, depression and memory loss. and the underlying

Vitamin B12 helps maintain the myelin sheath by playing a crucial role in the metabolism of fatty acids essential for the maintenance of myelin.”

I want to protect the Myelin I have left (in the hopes that it will attract more Myelin =)). My B12 levels are (not surprisingly) low and I have them tested every 3-6 months. I give myself 1 B12 injection a week. I don’t have any side effects.

I have heard rumors that B12 helps with weight loss and am sad to report that this has not been my experience. =(

So, do you take B12 shots? Do you test your B12 levels?

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In a nutshell

Posted on August 11, 2009 | 1 comment

If you have ever cracked open a perfect walnut, you will understand why I love the phrase, “in a nutshell”. Everything is right where it should be, simple, a perfect fit.

So here it is, theRIDEproject in a nutshell….

A. I am going to donate $1,000,000 to the the Myelin Repair Foundation through photography sales of limited edition prints focusing on things that move. MS stops people from moving. TheRIDEproject stops MS.

B. therideproject.com will be live the beginning of September and will include: my blog (reinvented), more resources for you, information on the ride project bike team, how to join or start your own team and raise money for the MS Society.

C. I will be sharing new, really cool cycling images to start, with more images coming from the surfing, skiing, maybe even horseback riding world. Yes, you can buy these images or tell your cycling enthusiast friends about them.

D. You will be able to track how much money I dontate to the Myelin Repair Foundation and learn more about the organization and their research model and updates at the ride project website.

Questions you might have:

Why are you “reinventing” your blog? For almost three years I have written to you about ME, about MY diet, about MY MS, about MY relapses, MY struggles, MY successes.  Blogging has been invaluable to my MS journey and will continue to be an intergral part of my constant search for balance and wellness. I am so grateful that you have indulged me and connected with me. Thank you for picking me up when I was down, for challenging my ideas and supporting my crazy ways! Now, I want to give YOU things that you can take away and use in YOUR journey. I want to offer helpful information for MS patients and anyone that wants to live a healthier life. You don’t need an MS diagnosis or another disease to know that you are not healthy.

How will the ride project help to find a cure? By supporting an organization that takes a new approach to finding a cure. “The Myelin Repair Foundation is the only research organization that addresses every phase in the drug discovery process, from initial research all the way to licensing by commercial drug developers. This is the only way to ensure that promising research results in real patient treatments – in the shortest amount of time. We combine this holistic approach with our renowned scientific team and collaborative research model.” Read more at the Myelin Repair Foundation.

Tysabri works so well for you, do you really need “a cure”? Yes, I NEED a cure, You NEED a cure, and generations to come NEED a cure. When I was first diagnosed, I remember hearing, over and over again, “You are so lucky, 15 years ago, there wasn’t even treatment for MS”. I do feel lucky and so grateful that there are options to treat MS, and I thought that was enough but I want more. We deserve more!

What can I do to help make theRIDEproject a success? There are so many ways that you can help, but most immediately I need your input. Please, tell me what you think. Ask questions. Send great ideas. Challenge me. And, most importantly, be the cure you are waiting for.

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Twenty Five

Posted on June 3, 2009 | Leave a comment

Today was Tysabri infusion #25.  I am tired but hopeful that this will be another great month. I feel lucky to have had the opportunity today to be infused. Not only am I fortunate enough to afford this very expensive drug but I am also so lucky that I work with Neurologist who knows that Tysabri is my best hope on the medication front for staying healthy and free of MS relapses and other issues.

I am also so grateful that with help from my family and friends, I can recognize when I am out of balance and need to re-focus and re-prioritize. Thanks to the caring people in my life, I am myself again.

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Speaking Out

Posted on June 2, 2009 | Leave a comment

I really enjoy speaking to groups about MS. While most of my experience has been speaking about drug choices, I especially like talking about life choices and the things we do everyday to live well with MS or other adversity.

I have to think about what types of groups to reach out to in an effort to get the word out that I am intersted.

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Life is good

Posted on May 24, 2009 | Leave a comment

My home office is in place and my diet is completely clean. Life is good. I am optimistic about my infusion next week (June 2nd) because not only is my stress to a minimum but I have been sugar and flour free for more than ten days now and feel really good. I am eating fish, fruit, veggies and eggs. I will be adding bread and sweets back but in MODERATION. While I have rarely practiced this theory, I really believe that the first few (Two or three) bites of anything are the best. Can I have two or three tortilla chips or two or three bites of cheesecake or ice cream? I hate to exclude those yummy things forever but without moderation, they really don’t work for me.

We also planted our garden this week so I am looking forward to a summer full of fresh tomatoes, peppers (sweet and hot), basil and other yummy herbs.

While I don’t always follow my own advice, I still believe that food is the #1 factor in health or illness. What foods make you feel good? or bad? Have you noticed that what you eat, or don’t eat affects your MS?

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Go Team TLC

Posted on April 26, 2009 | Leave a comment

Team TLC is heading to Martha’s Vineyard for it’s third year of cycling and raising money to FIGHT MS. While I would love to be riding with my team, it wasn’t in the cards this year. My role on the team will be played out from Salt Lake City…cheering them on and helping them raise money. I know this is a tough year economically. One thing that does not slow down in a slow economy is MS progression. Those of us with MS cannot afford to lose precious research time and dollars. We need answers, we need help, we need a cure. You can help.

My Sister-in-Law, Anne Marie decided to help when she heard about my diagnosis. She helped me personally by researching alternative therapies, sending me great books and cds and letting me know she would be there for me. We don’t see each other much or even talk too much lately but I think of her every day and am grateful for all that she does. In an effort to help further, Anne Marie started Team TLC (Team who Loves Courtney), a cycling team to fight MS on Martha’s Vineyard. This is Team TLC’s third year on the Vineyard!! Please do what you can to support our team by visiting the following website. If you can’t click on it, paste it in your browser. (Or go to “TEAM TLC” under MS fundraising on the right side of this page.)

http://main.nationalmssociety.org/site/TR/Bike/MAMBikeEvents?px=3027209&pg=personal&fr_id=9727

Not only can you donate on this page, but you can see a great picture of me and Mark with our bikes!! =)

MS does not slow down. We cannot slow down. Help Team TLC!! Help Me!! Fight MS!!!

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Long time no blog

Posted on April 14, 2009 | 2 comments

My parents came over for Easter yesterday and my mom mentioned that some people she knew missed my blogging. I think that was a gentle hint to post something.

Sometimes readers comment but don’t leave an email address so I can respond and when they comment on prior posts, regular readers can’t respond either. The following comment was made on my post from Nov.21 2006 “Ain’t my Cross” (sorry I can’t figure out how to post a link on blogger these days but if you search the blog by date, it will come up.)

I understand when readers want to post anonymously but this comment deserves a response. Here is the comment:

“I’m sorry but I have to disagree a bit with your second group category. I have had MS for over 15 years and am currently on no medication. Oh, I tried them…Avonex twice and it was awful. As I assume you have researched that not all MSers are the same, experience the same symptoms, etc. I do not have symptoms for over 3 years and maintain a busy, physical life. I dislike your grouping because I do stay alert to MS research, receive daily MS alerts through google (how I found you), have many friends that I speak to weekly who have MS, etc. I refuse to think about MS every waking minute because I do not want it to be a part of my everyday life. I will not focus on this MonSter. I don’t ignore it but I don’t dwell on it. I see my neuro every 6 months. It is not my cross to bear. I was diagnosed when betaseron was available but one was put on a waiting list and I chose not to. I had a baby which I was advised not to because of the MS. If I had listened, I would not have my beautiful daughter. I am a happy, well-informed 40+ year old woman who has had MS for over 15 years but I will not let it be a part of my every day life with shots, etc. Everyone with MS is different and we should not be categorized. “

I was so glad to receive the above comment and agree completely. I am so happy that this reader has done well with no medication. (and would love to hear more about the things she does to live well with MS) I guess I didn’t mean to categorize individuals but I did mean to categorize their (our)behavior. I stand by my original post but clearly shouldn’t have narrowed MS patients down to two categories. When I wrote that post, those were the two types of MS patients that I had experience with. Over the past two and a half years, I have met and heard from many more, including this comment.

I guess the point is, that I am no expert…just finding my way with your help.

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Yippee for change and progress!

Posted on January 23, 2009 | 1 comment

FDA allows first test of human stem cell therapy
By Maggie Fox, Health and Science Editor

WASHINGTON (Reuters) – The U.S. Food and Drug Administration has cleared the way for the first trial to see if human embryonic stem cells can treat people safely, a company involved in the controversial research on Friday.

Geron Corp, a California biotechnology company, said it plans a clinical trial to try to use the stem cells to regrow nerve tissue in patients with crushed, but not severed, spinal cords.

The issue of human embryonic stem cell research has been a political touchstone, with anti-abortion forces backed by former president George W. Bush arguing the technique involves the destruction of human embryos. Advocates say it could transform medicine.

“For us, it marks the dawn of a new era in medical therapeutics. This approach is one that reaches beyond pills and scalpels to achieve a new level of healing,” Geron Chief Executive Dr. Thomas Okarma said in a telephone briefing.

Shares of Geron rose more than 53 percent to $8 in mid-morning trading on Nasdaq after touching $8.38.

Geron will recruit eight to 10 recently injured patients and inject them with small numbers of human embryonic stem cells manipulated to become the oligodendrocyte cells that insulate nerves, and that produce compounds to stimulate the growth of nerve cells.

Okarma said there was no political significance to the announcement coming the same week as President Barack Obama took office. Obama has been widely expected to lift restrictions on federal funding and support of human embryonic stem cell research.

An FDA spokeswoman said, “Before FDA allowed the study to proceed, Geron worked with FDA to address important scientific questions.”

CHEAP AND EASY

Okarma said the treatment should eventually become cheap and easy to mass produce because the cells can be grown in vats. He believes the cells may be useful for other diseases such as multiple sclerosis, in which nerve cells are stripped of their insulating sheaths, and perhaps strokes.

for more go to: http://www.reuters.com/article/email/idUSTRE50M2U920090123

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