Saturday, April 17, 2010

I won't complain about the weather again!

Today was an absolutely gorgeous day here. The high was in the low 70's. The morning had no breeze (unheard of here), so sitting at the patio table felt wonderful. Then, my husband informs me were supposed to get SNOW next week! WHAT?! No flipping way! I want SPRING to stay. I'm tired of the snow and the COLD. I want to be able to sit on my patio, basking in the sunlight without a heavy coat on! Waaa Waaa Waaa.

Then I read Wendy's latest entry I'll never complain about the cold again. Imagine waking up and having your sleeping back covered with ice particles and the clothes you washed the night before, frozen solid! She actually sleeps with her tent flap 16 degrees!

Wendy isn't eating enough (They require 8000 calories A DAY). She's having a tough time swallowing. I hope she is able to eat better soon and this doesn't become something that stops her mission.

Her experience is an amazing thing to read about. The more I read the higher my level of respect for her goes. I have a tough time just getting out of bed in the morning. I can't imagine how she does it. One of the questions I have for her is how she battles MS fatigue! I know when I get tired my balance is even worse than "normal" and if I push myself I'm in bed the next day. How on earth is she able to push her body to such limits. I can't wait to ask her the questions!

If you have a few minutes, read her blog. She is one amazing lady!

Thursday, April 15, 2010


We've all been waiting for an oral MS medication. I know I'm tired of the needle's.

An article came out today in Business Wire containing recent study information on Laquinimod.

Manufactured by Teva, Laquinimod is showing some pretty promising, if unexpected, results. The idea of the drug is to reduced the amount of exacerbations experienced with RRMS through immunomodulation. An unexpected positive effect exhibited has been that it appears that in additional to anti-inflammatory properties the drug may also give neuro protection. Wouldn't that be something? A once a day pill that would knock down the amount of exacerbations you have AND protect your neurons. This would mean protection against permanent neurological damage.

Current animal studies show that following treatment with Laquinimod there were significant reductions in the extent of demyelination, and more axonal preservation within spinal cord lesions. Additionally, infiltration of inflammatory cells into the spinal cord and brain were reduced. 

Laquinimod also has also promise with Rheumatoid Arthritis, insulin-dependent diabetes mellitus, Guillain BarrĂ© Syndrome, Lupus and Inflammatory Bowel Disease.

Laquinimod was given fast track designation in February of 2009. It will be interesting to see what the phase III trials show. Their results are expected later this year.

Just who is Wendy Booker?

I've decided to add a few new components to my blogging. As with everything in life my blog is changing and evolving. I have been following a woman named Wendy Booker. Her name may sound familiar to you  if you receive the MS connections magazine. Wendy is the amazing woman who as I type, in in Nepal and arriving at her Mt. Everest base camp sometime today.

What makes Wendy so special (even though she herself doesn't consider herself to be so)? She has been climbing the highest mountains on each continent. Her goal? To be the first person with MS to climb all the seven summits. Mt. Everest is the last summit for her to climb in order to meet her goal. She expects to complete the 29,000 foot climb in May.  

I have been given the unique opportunity to be able to have a question and answer session with Wendy, and even a possible phone conversation!  I wanted to share this with all of you and encourage you to follows Wendy's journey at 

If you would like to ask Wendy any questions please let me know and I will incorporate them with mine. I will then post all the questions and answers here. I'm very excited about this project and am looking forward to your feedback!

Wednesday, April 14, 2010

My big red bike...the community project..and my second childhood begins.

 MS has taken up such a large portion of my life, for so long, in such a negative way that my "well" was beginning to run dry. Heck, not beginning, WAS dry.

There have simply been so many things going on in my life the past two years. I discovered that I was simply stretched to thin and hadn't taken the time to make sure I kept my "well" filled. My second childhood began last month with the arrival of my fire engine red tricycle.  That tricycle has become know in my subdivision as the "community project". It arrived in a million pieces with very poor instructions. As neither my husband nor I are/were bicycle folks neither one of us knew the first thing about putting the silly thing together. However, with lot's of laughter, frustration and a few colorful words thrown in we got it together......sorta. We couldn't get the chain on or the brakes working. (I still have the scab on my knee from the brakes not working properly)!

One neighbor tried to help us get the chain on....he couldn't do it either. Father Wes dropped in and helped get the brakes working after yet another neighbor had tried unsuccessfully. The local lawn mover shop (we don't have a bicycle shop within an hour of us) got the chain on.  Yet another neighbor helped tighten everything. Finally, it was together. Whoohoooo.....I took it for a ride and the chain popped off around the block. So, yet another neighbor put the chain back on and adjusted the gears for me. See, community project.

However, more importantly that red tricycle has got me out and about. Something I've needed for awhile after being almost completely house bound for the past two years. The exercise is good for me. While I can only ride for short distances right now, due to my poor leg strength, I try to ride everyday. I hope that soon riding around the block will be the norm instead of the exception.

My tricycle makes a funny rubbing noise when I ride it, but that's O.K. I think it gives it character...of course I'm sure yet another neighbor will hear it and figure out how to fix it. All I need now is a tall flag to put on the back...and a baseball card clipped to the spokes.

Thursday, April 08, 2010

Adventures in Wonderland

Why do we find the need to pretend everything is "O.K."? I don't know about you but whenever anyone asks me how I'm doing my automatic response is either, "Fine" or "O.K.". Often when things are quite the opposite. Is it because we don't want to burden people? Appear like a whiner? Or perhaps because we think that if we say it enough it will be true?

Anyone who has MS knows that on any given day things are NOT O.K.  If the weather is changing our spascity kicks it up a dozen notches. If the weather is beautiful we do too much and then our stamina is gone for the next three days. Then there is the MS "Hug". I wish I could figure out what triggers that one. For me it's like a huge muscle spasm that wraps itself around my chest. I breathe trying to convince myself that I will NOT suffocate, while every breath hurts.

So what do we do. We take a pill or a shot for every symptom MS gives us. When they no longer work we simply change to a new "cocktail" of medication. Often the side effects of the medications are worse, in my experience, that the actual MS symptoms. So what's an MSer to do?

I try to keep a positive mindset. I try to get exercise. I try to socialize, and I try to focus on anything BUT my MS. I refuse to feel sorry for myself or give in to self pity.  However, I often feel like Alice in Wonderland and darned if I don't have a creepy Mad Hatter.

Monday, April 05, 2010

Saying Hello to Spring

Spring is a relative term in the mountains. It can mean day's with temps in the 80's and days (like today) with snow falling. As I sit in my living room and look out my front window I am reminded, and amazed, at the beauty of where I live. I really have the best of both worlds. I live in the tip of the Southern Sierra Nevada Mountains. This means I live in a land of four full seasons, but none of them extreme.  Hop in the car and in an hour I can be in the City, go two and a half hours in the other direction and I can be at the beach.

I have a beautiful view of a mountain top from my front window. Right now it's snow capped and looks as if it's been dusted with powdered sugar. I have birds flying around my window seeking out one of the two bird feeders we have out front. A bit further I see the new blooms on our peach tree and the red tulip magnolia's blooming. Spring is finally here.

Accupuncture has been going relatively well I think. I get some relief from my back pain and am very relaxed following treatment. Pity it's only twice a week. I could get used to feeling that relaxed every day!