Monday, August 27, 2012

The Flare I Could Not Ignore

My sister Annie and I with Snowball
in the late 90's
For those of us with Multiple Sclerosis we know that stress may increase our symptoms.  No one likes to be stressed out or go through something traumatic, but we never think this kind of situation will lead to a life-changing diagnosis as it did with me at the age of 26.  Back in June 2006 my cat, Snowball passed away after being a part of my family for 24 years.  Snowball was like the little brother I never had. Growing up, Snowball always knew when I was upset and would come into my bedroom to comfort me.  He liked to lay down on my school work and always was ready to play.  Even though I moved out at the age of 19, I visited home often and in 2003 when I started at my current job and got a full hour lunch break, I started having lunch with my mom at my childhood home and Snowball would join us always wanting in on people food.  Snowball lived a happy and long life, but losing him was losing a family member.  It took a toll on my parents, my older sister and me.  

Baby Snowball 1982

Less than a month later I started having tingling and numbness in my left foot and my left knee swelled to almost the size of a grapefruit.  I went to my physician who thought maybe I hit my toe and pinched a nerve.  Not before long though, my other foot became tingly and numb and soon it spread to my legs. One Saturday I was in the shower when I realized I couldn’t feel the sponge on my torso and stomach, and my fingers felt numb too. I knew something was really wrong.  I called my physician’s office, not sure really what to do since it was the weekend, but found that they had a doctor on call. Luckily, it was my doctor and she told me to go to the ER. I called my mom and off we went to my first ER visit.

Feeding Snowball
At this point I really had no clue what was going on with me, but never thought it was something serious. I had plans with my friends that night and told them I would probably get a prescription and would meet up with them later in the evening. I was in the ER all night and was admitted for 4 days, being released on Independence Day. I had MRIs, a spinal tap and numerous tests that lead to my diagnosis.  Many of the doctors that came to see me during my hospital stay had asked if I had experienced anything traumatic and it all came back to losing Snowball.

Of course, now knowing the symptoms of MS, I know I have had it a lot longer than my diagnosis date, as it often is with MSers.  As a child I remember experiencing Lhermittes, an electric like sensation that radiates from the neck and down the spine. I remember thinking it was kind of a funny feeling and every so often would bend my neck down to see if I would feel the shock again. I had no idea other people didn’t experience this until I learned about MS.

Another example is from 2004 when I took a trip to Disneyworld for the first time. It was during this trip I experienced optic neuritis, where I lost part of my vision and saw a flashing square light. It was like when someone takes your photo and uses the flash and you see that image for a few moments afterwards. For me, that little square didn’t go away for quite some time. I don’t recall how many weeks I had it for, but I didn’t think at the time it was anything serious. It is so interesting to think back to this time, knowing now I was experiencing a flare up. But, the stress and sadness of losing my precious little Snowball brought out the strongest flare I could not ignore.

Monday, August 13, 2012

A Night With Clay Walker

On August 7, 2012 I went to a TEVA Neuroscience event that featured country star Clay Walker, who has RRMS and a panel of 3 neurologists.  The evening started with Dr. Ann Cabot who briefly explained what Multiple Sclerosis is and what therapies are currently available. Then Dr. Cabot along with Dr. Guy Buckle and Dr. James Stankiewicz sat down for a Q&A session. During registration we had the opportunity to write out questions for the doctors as well as Clay Walker.  Some of the things the doctors were asked about included BG-12, a new therapy that should be coming out in 2013, as well as the recent controversial British study about the beta interferons not delaying the progression of MS.
After the doctors finished the Q&A session there was an intermission and then a short video was shown about Clay Walker and the foundation he started. Clay Walker and his band came out and he spoke about his experience with MS in between playing some of his hits. I must admit, I was not familiar with Clay Walker’s music, but hearing him play live with his band was great. He has an upbeat energy and after hearing him speak for a little while, it became clear that he is a motivational speaker.  He told us that when he was younger he was a runner. MS had taken that away from him, but slowly he started running again. He said that if you push yourself further than you have previously after a while you will see the difference and feel triumphant over this victory, whether it is half a step or holding yourself up from your wheelchair a few moments longer. He said we should always try to push ourselves a little further.  He said our caretakers are the #1 person to help encourage us and help us meet our goals. This event was geared towards people with RRMS and their caretakers. I didn’t go with Abe, but with my friend Kim.  Clay said that our caretakers are more scared than we are about our MS, which I was glad he mentioned. I have thought about this before, but wasn't sure. So to hear someone say it out loud and confirm it, made me glad. We all need to think about how our caretakers feel, as they may not talk about it very much.   
Towards the end of the night, Clay Walker invited up Dr. Buckle to play guitar on one of their songs. Clay told us that Dr. Buckle hadn’t played for 10 years, but it sounded like he did a great job. On another song, Dr. Stankiewicz played the banjo. It was a lot of fun seeing the doctors play with the band.

It was a great night! I saw some friends and made a new one. I encourage anyone to check out their local MS events. They are free and fun! And you might get to see a famous country star!

Thursday, August 2, 2012

Handicap Placard

This past November I brought my first car at the age of 32. I absolutely love having a car and am so thankful that I am able to drive.

That being said, sometimes walking from my car to places has caused some trouble, especially in the hot weather Boston has been having. After I bought my car I inquired at the office I work in if I would be able to park in their very small garage. I have been working there for 9 years but am still considered a newbie as most of my coworkers have been there for more than 20 years! So, there were people ahead of me to get the space that had newly become available. My boss suggested to me to apply for a handicap placard. It had not occurred to me before to apply for one, but followed his suggestion. I easily found the form online and had my neurologist fill out the appropriate information. Shortly afterwards I received my placard in the mail. I never had paid much attention to placards, so it was a surprise to find my license photo on the front. Lucky for me, that photo turned out really good, but I use the sleeve that was sent with the placard to cover the photo when I have it hung up in my car.
At first I felt uncomfortable using the placard. I felt like since I “look so good” other people walking by may make comments to me about why I would be using a placard. There is a handicap space across the street from my office where I park every day. After expressing some concern to a friend and coworker of mine about using the placard, she made me realize that I had no business feeling uncomfortable. Abe, my husband, also helped me understand that I needed to use it, for my own safety. After repetitive motion, my legs and arms get tingly and numb and walking even a short distance can make me feel fatigued, not to mention a handful of other symptoms. I started to feel more confident and started using the placard outside of parking at work.
One day not too long ago I was walking from my car back to my office after my lunch break and fell down. I wasn’t badly hurt but twisted my ankle and called my office (thank goodness for cell phones!) to have a couple of the girls come out to help me get back inside. It was sort of wake up call for me that I not only need to move a little slower (though that may not prevent the fall as all of us MSers know) and that in fact, I do have MS and need a little help.
I now have no problem using my placard whenever I need to.  I am so thankful that my boss suggested this to me. No one has ever made comments to me, but if they do I am ready for them. I have started to notice other people who have placards who “look good” and realize that disability (I don’t really like that word) comes in all shapes and sizes. This one happens to be 5 feet and Greek!