MS No More

This page is dedicated to the fight to end MS.  Thanks to my son and daughter for coming up with the logos and many thanks to my cousin, Kimberly English-Cole for the designs.  Please help support the cause. Thank you.  http://www.cafepress.com/msnomore

An example of one slogan.  

My ULTIMATE favorite slogan.
The designs on all apparel are done by Kimberly English-Cole.  If interested, please email her at: kimberlycole@live.com

Stress, Stress and More Stress

Regardless if you suffer from MS, another chronic illness, or no illness, stress in itself can make you feel sick.  Stress just can make any of us feel  much worse.  The physical symptoms of stress include sore and knotting of our necks and backs, stomachs nervous and upset.  Stress can be positive or negative.  I have found that in either one of the types of stress my MS symptoms are more prevalent.  And yes, I am told to relax.  But, no, I haven't quite yet figured out how to just relax.  I think my still wanting to be Super Mom makes me feel guilty.  I feel like I should be doing something, I need to be doing something, so in essence, I don't know how to relax and I am stressing myself out!  

I know that learning to relax is essential to my well-being.  I just haven't quite figured it out.   Now, it's not like I haven't given it a great try.  I have bought a yoga mat, hardly used.  I have bought Denise Austin Yoga DVD's, hardly used.  I have bought Pilates for Dummies, and Pilates for Beginners, barely cracked open.  I have tried to meditate, which is supposed to really good.  To be honest, I haven't gotten the knack for meditation.  What do I think about? Do I say a mantra? Where do I find a mantra? When I try to meditate, why am always thinking of stressful things?  What needs to be done, what needs to be bought, what needs to be cleaned, what are the kids doing?  It's all very confusing. So, if anyone knows the secret or knack to meditation, I am up for suggestions.  Come to think of it, do they have a DVD Meditation for Dummies?

My Mom Has MS And She's Still The BEST!

MS is a very difficult and challenging disease.  It's wonderful when you have the love and support of your family.  I would be remiss if I didn't say how honored I am of my son, Caleb.  My son, Caleb, wrote a book in my honor.  The title is, My Mom Has MS And She's Still The BEST!  It is available anywhere books are sold, www.amazon.com,  www.barnesandnoble.com, or just Google the title and up will pop many places where the book is available. 

Yes, the book is about MS, but it is so well written that if you are a parent with a chronic illness you should really pick up a copy.  This book is from a child's perspective of how they internalize their worry, their fear and the feelings about their parent that is ill.  I had no idea what was on my son's mind until he wrote that book, and for that I am truly appreciative of his openness and his raw honesty.  So, thank you  Caleb for writing a book in my honor.  You are truly just a remarkable young man and I love you so much. 

The Many Treatments for MS

Because there is no cure for MS, with fundraising and increased awareness is allowing researchers to find differing methods to slow the progression of MS.  Treatment of MS includes: tablets that are taken orally, self-injectables, which there are two types.  The injections are either subcutaneous, or right under the skin or intramuscular, which is right in the muscle.  And, there are infusions.  I am familiar with self-injectables, some tablets, which were taken to aid in my walking and what I am currently on now, the Infusions that go directly into the vein.

The current FDA approved treatments for MS are, Avonex, Betaseron, Copaxone, Extavia, Gilenya, Novantrone, Rebif, and Tysabri.  I am currently on Rebif after trying a few of the leading MS treatments.  My doctor and I have found that this medication is the only thing that at least lessens my relapses.  It hasn't eliminated them, but at least they are not once a quarter as they had been in the past.  

Now, ofcourse, all of the current MS treatments come with side effects.  For more information and a clearer picture of the drug type and when it was approved, please log onto www.nationalmssociety.org

Stages of MS

There are many stages, there is Relapsing-Remitting MS, Secondary Progressive MS, Primary Progressive MS, and Progressive Relapsing MS.  In Relapsing-Remitting About 85% of all initial MS diagnoses are RRMS. These patients have very few relapses then with a period of little to no symptoms for long periods of time.  

In Secondary Progressive MS, the stage that I am currently trying to stay within roughly 50% of people with Relapsing-Remitting MS will develop Secondary Progressive MS.  Usually this happens with ten years of a diagnosis.  Ofcourse, I had to prove that theory wrong.  I was diagnosed with Relapsing-Remitting MS in September 2003.  By August 2006 I was knee deep in my new diagnosis of Secondary Progressive MS.  In this stage of MS, your disability worsens and MS symptoms become much more pronounced. Also, in this stage of MS people are supposed to experience fewer relapses, their disability worsens and symptoms may become more pronounced.  In my case, my experiences of relapses have not become fewer, which leads me to believe that my MS is still progressing rather rapidly.

Primary Progressive MS is a steady worsening of your MS symptoms and your disability.  People with Primary Progressive MS do experience relapses, but also experience symptoms that may occasionally speed up, slow down, or even get better for a time.

Progressive -Relapsing MS is in about 5% of patients who have MS.  It means that the MS disability is steadily worsening and on occasion you do experience relapses.  

When being diagnosed with MS you have to become in tune with your body.  I know that my current diagnosis is Secondary Progressive MS, but I can also tell that my MS symptoms are worsening, I still have exacerbations or relapses and at times I feel like my health is worsening.  This will be a conversation to be discussed in detail with my neurologist.