Monthly Archives: June 2013

Just SAY IT!

I spent most of today working on my first video Blog and boy was it tuff.

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My subject was “What is MS?” That part was easy. I found myself frustrated with all the details. I thought of how frustrated I was a year ago starting this Blog. Admittedly, my MS had definitely caused me to have cognitive issues. So much so that during my recent relapse I began to speak very slowly. My brain was having to work harder to transcribe my thought into language, and concentration…you could forget it. I used/use the blog to exercise my brain. My family never made me feel slow or tried to rush my statements. Clearly though, something was wrong with Mom.

Helpful: We had a family meeting where I told them just how much more this relapse was affecting me and in what ways, all very obvious at the time. It made a difference for me to sit down with them and SAY IT. I had to say, “I can no longer do this, this, and this. It hurts me to try. I need your help.” The meeting made it official. It wasn’t a pity party, although I was crying a lot. It was a matter of fact assessment of where I was at the moment.  I continue everyday to push myself physically and mentally to fight this disease. Whatever it takes! So VIDEO Blog…I’ll be back!

Just SAY IT!

Resources: I can’t make my WordPress link button work right now! Completely baffled:/  The link and unlink buttons are not highlighted, so their dead 😦

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/index.aspx

Thoughts and Comments: Is there anything you’ve done to help your family understand? Help me out!

4 Comments

Filed under MS Symptoms

Happy Father’s Day

Can you remember? Put your finger on a really stressful event that happened in your life in the year that you were diagnosed with MS? I can…my dad died.

Me and My dad, Louis H Anderson, Sr. doing homework 1973.

Me and My dad, Louis H Anderson, Sr. doing homework 1973.

 

Today is Father’s Day where I live. This got me to thinking more about my Dad, and missing him. I thought back to when he died and realized that he died in the same year that I was diagnosed with Multiple Sclerosis. Let’s talk about STRESS!

This made me do a little research on “Stress and the Onset of MS”. I had heard long ago that a very stressful event, along with everything else thought needed to cause MS (maybe a virus, ethnic make-up, where you grew up- temperature, susceptible genes, gender and who knows what else) STRESS or Trauma might be responsible for getting the party started. I couldn’t find much, but I did find an article written in “The National Inst. Of Neurological Disorders and Stroke”. This fueled my interest. Most of the article by Dr. Trond Risse, professor of lifestyle epidemiology at The Univ. of Bergen in Norway, suggested that stress was proven to not be involved. Only to be contradicted in the end by a different professor, Dr. Thomas Mack, professor of preventive medicine and pathology at The Univ. of Southern, CA.

Having said all of that, I’d like to do my own research 🙂 If you have MS, can you identify a stressful event, or series of events within the 12 month period preceding your diagnosis? Please tell us about it. Have you ever considered it to be involved in the presenting of your MS?

Resource:

Reuters Health, article May, 2011 by Genevra Pittman, New York

Thoughts and Comments:

Scientific minds want to know!

 

 

 

8 Comments

Filed under Diagnosing MS, MS and Family, MS and Tragedy, Stress Management

MS: Like Mother like Daughter

Like Mother like Daughter

Like Mother like Daughter

Oh God NO…say it ain’t so!

We’re going to a neurologist today for my daughter to be seen. I thought I was okay, but I’m not. My stomach is upset and I’m on the edge of imploding. I’m falling apart just writing this. I’m trying so hard not to.  I know if I do, I won’t be able to stop…ever. I’ll be in pieces (or puddles) when she needs me NOT to be.

Because of an episode of what could have been optic neuritis, she needs an MRI and blood work. I allow myself to hit a “low”. It’s okay for me to do this, I deserve it. I just need to be careful not to let anyone in my family see me there. I really hate what this disease is doing to my family and I hate that I brought it here. If I didn’t have this disease we wouldn’t have even considered it. We wouldn’t know what MS was. We would just assume her temporary loss of vision was a migraine, or maybe a concussion that resulted from a soccer play.

What don't you understand about...NO!

What don’t you understand about…NO!

What do I do?  The only thing I can. When MS is the hammer, everything is a nail.The Nail That Sticks Out the Most

Okay, I cannot stay here! It’s time to change the recorded message in my head, before it becomes permanent. If I’m gonna talk the talk, it’s time to walk the walk. I’ve advised young couples dealing with MS who are concerned about genetics that:

1. More than 80% of people with MS DO NOT have a first degree relative (parent or sibling).

2. Scientists now believe that a person is susceptible to multiple sclerosis only if they inherit an unlucky combination of numerous genes.

3. Risk for MS is also affected in part by a person’s ethnic background and other factors such as something environmental or a virus. A “perfect storm” has to occur for a person to develop MS. Several of the believed causes must intersect in a person. It is not known what those combinations might be. As a matter of fact, it is known to be not just one specific combination.

4.If caught early, and the young person has access to one of the disease modifying drugs, the nervous system might possibly be preserved until a cure is discovered. I believe that is right around the corner.

To make a long post, short, Dad and I took her back for the MRI review. We had to wait almost an hour for our Neurologist to show up, I was a nervous wreck. She walks into the exam room and my only thought is, “Oh God NO…say it ain’t so!” Then the Doctor says to our daughter…” You have a beautiful brain”.  I burst into tears 🙂

Thank you God!

Thank you God!

Thoughts and Comments: Does anyone in your family have MS?

Are you a parent? Do you worry that your children will also have MS?

Do you NOT have children because you worry about them having MS?

References:

National MS Society on Genetics

National MS Society on Disease Modifying Medications (PDF)

Mayo Clinic on Optic Neuritis

 

15 Comments

Filed under MS and Family, MS and Genetics

My Board of Directors

The Board-MS Open Mic: President-Estizer Smith Member 1- Estizer Smith, Member 2- Estizer Smith, Member 3- Estizer Smith, Member 4- Estizer Smith

MS Open Mic Board: President-Estizer Smith
Members: Estizer Smith, Estizer Smith, Estizer Smith, Estizer Smith

I began this blog as a “non-profit” organization with Articles of Cooperation, a board of directors and everything. We made the mission statement and set the goals. I began to crank out posts. Prior to the publication of every post, we meet for the board to review it. They are vicious! Many of my post land on the floor, others are edited to the bone and I am left with nothing. As pissed off as I can become with them and as much as we argue, this actually works very well. It weeds out all of the posts that don’t align with the mission statement and goals, which are clearly stated by the board:

“We strive to share information about the disease, Multiple Sclerosis, that is accurate, enlightening, uplifting, and when possible, humorous.”

MS is known to be a frightening disease. There is no bigger fear than fear of the unknown.

Be aware, some of our posts are not “real time”. Every board member contributes and facilitates me with the content, by offering their own personal experience with MS. Some of what you read may have occurred in different states (no one is international yet) in different states of mind, and at different times. We have a combined 20 years of experience, bringing to the table many different insights and perspectives. A few are:

1. What it’s like to be newly diagnosed.

2. Life style changes.

3. Effect on personal relationships.

4. Effect on family and work life.

5. Maintaining mental and physical well being.

6. Transitioning from Relapsing Remitting MS to Primary Relapsing MS…or not.

7. Effective communication with your doctor.

8. Aging with MS.

Our goal is to help you face your fear.

 Board President-Estizer Smith Board Members-Estizer Smith, Estizer Smith, Estizer Smith, Estizer Smith

Board President-Estizer Smith
Board Members-Estizer Smith, Estizer Smith, Estizer Smith,
Estizer Smith

  • DisclaimerWhen I began writing my blog I was extremely frustrated. I wanted to write from a point of education, inspiration and humor. This happened to be much more difficult than I had imagined.  I struggled endlessly with what to write. More importantly, how to write it staying true to my goals. I explained to a friend that I felt as if there was a committee in my head, arguing about every post! Little people, and before I could post anything, they all had to agree that it met my goals!
  • Comments and Thoughts: What else would you like for us to write about? What is your greatest MS fear?

5 Comments

Filed under Riding Out a Relapse

Focus Beyond MS

Do you have an unforeseen life situation that has changed the way you see your future? Is it time for you to find new focus? What will it be?

 

Excerpt taken from MS CONNECTION, NMSS Greater Delaware Valley Chapter 2009 Issue 1

Excerpt taken from MS CONNECTION, NMSS Greater Delaware Valley Chapter 2009 Issue 1

Managing MS or any chronic illness requires a variety of tactics. For me, one is to stay focused on something outside of myself, outside of my head. There is no MS out there.

Jobs are an excellent way to accomplish this. Unfortunately, when my job went away, so did much of the focus on something outside of my body.

Me, teaching Honors Anatomy and Physiology 2003. My last year in the classroom.

Me, teaching Honors Anatomy and Physiology 2003. My last year in the classroom.

Soon after this, I entered photography classes. Classes turned into an internship, and interns are not usually (ok never) as old as I am. The challenge made it more meaningful to me. I was learning new things. Out and about, doing things I had never done before. I was over the moon! Because of this new skill in my life, I was able to create a very emotional photo documentary and book, “Welcome Home”.

Below: A production of Public Broadcasting Station 39 (PBS39)

As my MS changes, so must my focus. What’s important is that I have one.  My current focus is this blog. Because my blog is about MS and me, I have to be very careful. As long as I keep my focus on educating and inspiring others, I’m safe. Admittedly, this is difficult to do at times, hence the need for other focuses.

Acting in “The Vagina Monologues” has become my focus during the spring of each year, for the last 5 years. The reason for this play is to raise money to help stop violence against women and girls, worldwide.

"Vagina Monologues" written by Eve Ensler. Performance, Doylestown, PA 2011

“Vagina Monologues” written by Eve Ensler. Performance, Doylestown, PA 2011

Over time, I have become aware of just how important this is in my life. I am putting much thought into my next focus. It will have the power to educate, motivate and inspire ME. I have to get stronger, physically and build my endurance. I must engage the social aspect of me, I’ve become a bit of a recluse. For my next focus to be able to do all of those things, it must be huge!

I’ve GOT it! Bike MS 2015! Training began yesterday. I walked to the corner and BACK! I’m a beast!

bigstock-Autumn-bike-riding--intention-24879752Comments and Thoughts: What have you used to stay out of your body? Outside your head? Has it had to change with your illness? If so, how?

Focus Beyond MS

Focus Beyond MS

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Filed under Mental Well-Being, Mind-Body Connection, MS and Exercise, Riding Out a Relapse, Stress Management