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.

Snowball

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.

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!

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!

MS and Heat Do Not Mix!

There is a heat wave in a large portion of the US and Boston is no exception. My MS does not like this one bit!

Last week the weather was high 90's and very humid. Today is not much better. I must say on these kinds of days, I really do not mind being at work, in an office with AC! I am fortunate to have an AC unit at home and my apartment is fairly small, so the one AC keeps the whole apartment cool enough.
On days like these, my MS acts up more than usual, as I am sure it is the same for many people with MS. The heat intensifies symptoms, and for me the most annoying one is the increase in tingling throughout my body. Sometimes I feel like shouting to my body, “Enough already!”  You might think “Good thing she lives in New England when there are extremely cold winters!” Nope!! The winter and cold weather have a whole set of negative effects of their own. Luckily me! I am sure that it is not uncommon to many of you too, but it’s no fun.

It's only the end of July, so there is plenty more summer to go. To survive the heat as best I can, I stay indoors by the AC as much as possible. At times that can be a bummer, but I find a lot of activities to keep me busy, like writing! (I also love reading.)  I try to keep hydrated (which everyone should do, MS or not) but sometimes find it difficult as I am not water’s #1 fan. (Please don’t suggest flavored waters, I like those even less than regular water!) I also try to run errands early in the day when it’s the coolest out which works well since it is also when I have the most energy.

There are, however additional things I could do to help myself out, but I don’t. For example, my new car has a lovely remote start function, where I can start the car from indoors. This means if I leave the AC on in the car, when I get inside, it will be nice and cool. I haven’t used that function once this summer. I know, I’m bad! I think it is because when I first got the car I tried to use that function but I would set off the car alarm each time. Eventually a friend showed me another way to unlock the car that wouldn’t set off the alarm and that one time it worked. I guess I would rather get into a hot car than set the alarm off. Even as I type this, I feel silly, so my promise to you is to use the remote start function!!
Here’s to surviving the rest of the summer!

Sometimes MS Makes Me Feel Older Than My Age

Since being diagnosed with MS in 2006, there are changes I have had to make to my life. For me, they have been fairly easy to make, but it did take some time to figure out what needed to happen.

Mostly the changes have had to do with my social life. These days if I am not in bed by 10pm, I pay for it the next day. I work full time as a receptionist in a periodontal office so something as simple as meeting friends for dinner after work can throw me off. On the weekends, I try to do my errands early and if I meet friends, I try to meet them for lunch or an early dinner.  Of course there are times when I make exceptions, and just plan to have the next day to recuperate, even if it means taking a day off from work. That doesn’t happen too often but there are events I don’t want to miss out on, like if there is a concert I want to go to or some other special occasion. Knowing that my body needs time to get back to “normal” has made things much easier for me.

It can be difficult explaining to friends why I can’t stay out as late as they would like, or why I can’t do anything after seeing a movie in a theater (though I have just about given that up) or go out on a day that is nearly 100 degrees! I found that this has gotten easier over the years as I have been able to discover what works best for me. I explained to friends that it wasn’t that I didn’t WANT to do these things, but I physically couldn’t handle it. Some friends were more understanding than others. Fatigue is one of the most common symptoms of MS and being one that you can’t see makes it even more difficult for people to understand. Everyone gets tired, but MS fatigue is an entirely different feeling.
MS also makes me feel older than I am when there is a lot of walking involved. About 8 months ago, I bought my first car! Before getting my car I would depend on other people for rides, mostly from my Mom (thanks Mom!) and take public transportation. Even with transportation at my finger tips, sometimes there is still a lot of walking to do to get around the city of Boston. My last relapse, over 4 years ago happened after walking too much. My legs go numb and get tingly after walking even short distances and standing tires me out. Even moving my arms in a repetitive motion makes them get numb and tingly. After resting, the symptoms go away, but it’s never fun to experience.  Of course when it is warm outside everything is worse and right now Boston is having some very hot weather -- which is why I am home typing this right now by my AC! 

So… I am thrilled to now have a car of my own! I still use the “T”, Boston’s subway service, to get into the city and have the added luxury of going wherever I need to on my own time with my car. With my 6 year diagnosis anniversary upon me, I am glad I have figured out what helps me feel as well as possible and with my new car I feel that I have gained a new found independence. I guess MS doesn’t ALWAYS make me feel older than my 32 years!

Celebrities With MS

Recently it was announced that Jack Osbourne has Multiple Sclerosis.  I am sorry to hear that he has MS, but I am glad that he has shared his diagnosis with the world and is bringing attention to MS.

Unfortunately, the media has dramatized Jack Osbourne’s diagnosis and there is a lot of misinformation given. For example, on the cover of People magazine, Sharon Osbourne, Jack’s mother, is being quoted saying “I’m Not Going to Let My Son Die!”  As we know, people with MS have long, fulfilling lives and Jack Osbourne along with all of us, are not in danger of dying anytime soon.  It is such a shame that is what People magazine decided to focus on for their cover. However, the article in the magazine, I thought was well written and brought the right kind of awareness to MS.

When I was first diagnosed with MS in 2006 I turned to books to learn about MS and found that there were many autobiographies of celebrities with MS. I read about Terri Garr, Montel Williams and David Lander aka “Squiggy.” Nancy Davis brings awareness to MS in a different way. Every year she hosts the Race to Erase MS Gala.  A lot of celebrities attend and therefore media attention is brought to the event. The Gala recently took place and I saw clips of it on some entertainment shows. Nancy Davis raises money to help end MS and I hope that with the new attention Jack Osbourne has brought to MS, that this year there will be even more support to help end MS and that there may even be a cure in my lifetime!

Tysabri - My MS Therapy

I switched my MS therapy to Tysabri in 2008.  I had been on Avonex for a year and a half and finally had found somewhat of a routine with the weekly shots.  I became more comfortable after finding out about a prescription numbing cream (see blog #2 “Miracle Cream”) and slowly had less and less side effects. After getting MRI results, my neurologist informed me that Avonex was no longer working for me.
I had a couple options, the ones I was considering were Copaxone, a daily injection or Tysabri, a monthly infusion. I was fairly certain that I would go with Tysabri, just because I found out after being diagnosed with MS that I had a needle phobia. I really couldn’t see myself getting a shot every day. Also, at this point Abe, my husband, had to give me my shots and I didn’t want to have to depend on him or anyone else for them. I knew I wouldn’t be able to give myself the injections either.

I was a little nervous about starting on Tysabri.  It had been taken off the market at one point as a handful of people had developed PML, a rare brain infection that can leave you in vegetative state or be fatal.  My neurologist informed me that I would be closely monitored. I felt comfortable with the decision to start Tysabri and scheduled my first infusion.

I have now been on Tysabri for over 4 years. I am so thankful I made this choice.  Within the last year there has been a blood test that can detect if you have been exposed to the JC Virus, which puts you at risk for PML.  The last two years I have tested negative. For me, Tysabri has worked so well. Not only is my quality of life been better because I no longer have to worry about shots (as soon as the shot was over, I started having anxiety about the next shot) but I haven’t had a relapse since my first infusion!