Tag Archives: MS

MS Symptom I wouldn’t mind

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?


Eat Less

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

  • 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.

Do you B12?

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?

In a nutshell

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.

Twenty Five

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.

Speaking Out

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.

Life is good

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?