MS Sylvies

In 2010, my brother, sister, and myself were honored with the "Youth All Star Award" for all of the volunteering we participated in that year. Then again in 2012, I received the
same award.

In 2013, my sister and I nominated my parents for the Care Partner of the year award.

Below is the nomination I submitted:

"My parents, Dean and Andrea Blosberg are completely committed to fighting MS. Even
before my dad, Dean, was diagnosed in 1998, they have been volunteering. 
When I was diagnosed in 2011, and when my symptoms started in 2010, my parents never
stopped supporting me. Numerous doctor and therapy appointments left my mom with
very little time to herself. She continues to give. Although our life has become complicated with family members with MS, and one with FASD, they never give up.

They continue to volunteer, have fun, travel, work, and most importantly, love.
When I have "bad" days, or when my symptoms are limiting me from my activities, my
parents remind me that there will be bad days, and there will be good days. They have
supported me with many accommodations, allowing me to be a normal teenager; most
of these accommodations taking time away from time they need elsewhere.

No, it isn't easy. I don't know how they continue to move forward, but somehow they do.
They are always positive, or adding humor to the situation to make it easier. Having them receive this award would mean a lot to me. I cannot put into words how much I love and appreciate my parents. I truly believe they should be recognized for all of the support they give. 

JOY!
There are many things that give my parents, Dean and Andrea joy. To start, spending
time as a family. Our family has traveled many places and has become very close.

When my dad was diagnosed in 1998, my parents decided that they would live life to its
fullest. They would take my siblings and I sightseeing, camping, or just to a weekend at
the cabin. They did not want to miss out on any opportunity because of MS.

Our pets also bring my parents joy. Our goofy dogs, cats, chickens, and sugar gliders
are always providing love, joy, and entertainment!

My mom, Andrea, also likes to have time for herself. Reading a book, embroidering,
gardening, or coffee with friends are always things she enjoys. Unfortunately, she does
not have much time to do these things for herself as she is constantly caring for others especially me, my siblings, and my dad.

My dad, Dean, enjoys time at the cabin. While there, he enjoys "playing" with his ham
radios, spending time in the barn/garage, and just enjoying the peace and quiet. He too,
does not often have a chance to take time for himself. He constantly provides for us by
working, supporting, and caring for me, my siblings, and my mom."

Jessica (my sister) and I were informed in November 2013 that our parents would be
receiving the award. Together, we decided to keep this award a secret! For 4 months
Jessica and I kept in contact with the MS Society over email and few phone calls away
from our parents. It was easily one of the hardest things I have ever done!

A few weeks before we were to present the award, my mom and dad asked Jessica and
I if we would be okay missing the Sylvies awards dinner that year- NO! We had to
quickly construct an excuse why we should go! Eventually, we told them that we got a
phone call asking if we would present the Youth Volunteer of the Year award.

On February 1, 2014, we met at the MS Sylvies Awards Dinner. My mom and dad were entirely convinced that we were presenting the youth award. As Jessica and I walked on stage, I walked up to the podium and revealed our secret award. A link to the video is below, where you can watch their reaction: Luminary Award 2013

My parents truly deserve this award. They continue to fight, advocate, educate, and
support me, my family, friends, and thousands of people living with Multiple Sclerosis.

The MS Sylvies is an awards dinner received its name through Sylvia Lawry, the
founder of the National Multiple Sclerosis Society. "Sylvia Lawry single-handedly
launched an international war on multiple sclerosis, founded both the National Multiple
Sclerosis Society in the United States and the Multiple Sclerosis International Federation abroad, and who profoundly influenced research, disease management, and public policy concerning this complex neurological disease" (nationalmssociety.org).

Each year at the Sylvies, volunteers, supporters, and sponsors receive awards as a thank you for their support.

Minnesota Medical Foundation Diamond Awards

 Every January the Minnesota Medical Foundation hosts the awards dinner for the Minnesota Twins Baseball team. At this event, a patient is featured to put a face to their cause. The University of Minnesota Medical Foundation supports patients with Multiple Sclerosis, Ataxia, ALS, Muscular Dystrophy, and Parkinson's Disease. In October 2012, my neurologist called me asking If I would be interested in being

My family with Joe Mauer

My family with Dick Bremer

that featured patient at the event. I eagerly accepted, and soon met with the organization to create a video to share at the event.
(click the link to watch the Minnesota Medical Foundation video)

 The event took place at Target Field in January 2013. My family enjoyed meeting many of the baseball players (including Joe Mauer) before the event started, and then the event officially started.

Approximately an hour into the program, the video begun to play. My dad and I started heading towards the stage, with cameras following us the whole way up. As the video ended, I walked to the podium, introduced myself and my dad, and the two of us shared our story as well as thanked the crowd for their support. 

"Emily

 Hi everyone, my name is Emily Blosberg and this is my dad, Dean. My mom, Andrea, my sister Jessica, and our foreign exchange student, Saskia, are also here this evening. 

 Multiple sclerosis has been a part of my life since I was a little girl. I honestly don’t remember a time in my life when it wasn’t a part of our family. And, now today, it is impossible to ignore. I was a kid whose dad had MS. At a very young age, I began to volunteer for the MS Society to help bring

awareness to this horrible disease. As a pre-schooler, I cheered at the finish line as bikers completed the 150 mile tour from Duluth to the Twin Cities. My duties expanded as I grew and I knew I was a part of a unique group of people. But then, just over a year ago this group became a little more personal as I was diagnosed myself. 

Dean 

 As a dad, there is nothing worse than hearing your child has been diagnosed with a life-long condition that will impact every part of his or her life. I knew better than anyone else, what that would mean for her and it was a crushing feeling. 

While MS is very common here in the upper-Midwest among adults, it is not common for children likeEmily to be diagnosed. Andrea and I wanted the best care for Emily so we sought out the doctors the University of Minnesota. My care team is at the University of Minnesota and because of this, we never considered anywhere else for Emily. 

In addition to Dr. Adam Carpenter, who you saw in the video just a few moments ago, we are grateful to another doctor at the University – Dr. Peter Karachunski. It is Dr. Karachunski who compassionately spent over a year with us - trying to decipher her strange symptoms - and who later confirmed Emily’s MS diagnosis. As you heard in the video, when Emily first saw her scans, she knew she had Multiple Sclerosis. Emily had seen my scans before, so she knew what the brain looks like when MS has moved in. Truly wanting the best care for Emily and knowing his own specialty was not MS, Dr. Karachunski contacted Dr. Carpenter as he read Emily’s MRI results. Before he called us, he wanted to have options in

place and a capable colleague to continue the care for our daughter. 

Emily is, by all accounts, a remarkable and inspiring young woman. Pain is a part of her daily routine, as is a debilitating fatigue. Armed with a finite amount of energy each day, she must often choose between school and friends. She has become a remarkable advocate for herself and others with chronic illnesses. Her doctors and therapists at the University of Minnesota have helped to empower her to reach out, educate, and lead in a way not typical of most teenagers.

We both have a team of individuals who are helping us cope and live with MS – yes, we DO LIVE, with MS. We enjoy our family and friends and our children we have hosted from overseas. Most importantly, our family has hope for better treatments and we are certain that a cure will be found. (No pressure) :) 

Emily 

My dad and I have MS, but it doesn’t define who we are. We enjoy every part of our lives, although maybe at a slower pace than many of you and we, too, like the cooler spring temperatures in Florida, as those with MS don’t tolerate heat very well. Thanks to the dollars directed to clinical care and research at the University of Minnesota, our quality of life will continue to increase. (No pressure from me either!)  

I will not go to school tomorrow. I will be too tired from this evening. However, my family and I thought that this was too good of an opportunity to pass up. I have never been shy to stand up in front of a crowd and I especially wanted to share our story with you so you could join our fight. It is my personal mission to educate as many as I can about MS and to advocate for others with chronic and debilitating diseases.

As a way to spread my word and as hand therapy for nerve trouble in my hands, I make sock monkeys. I sell them at craft shows and by word of mouth and I donated one for the silent auction this evening. Over time, the monkeys have kind of become my logo or symbol. Along with my sock monkeys, I also make monkey pins. My family and I are going to hand out my pins at the end of this event—please take one if you’d like to Link Together to fight MS.

While our scientists and doctors have made progress, there is still so much to be done and many miles to go before we can declare victory on ALS, ataxia, muscular dystrophy, Parkinson’s disease, or multiple sclerosis, and I DO believe that the University of Minnesota is the best organization to lead this collected effort. 

We are grateful for your time this evening and ask that you consider making a gift right now to drive this fight against, not just multiple sclerosis, but ataxia, ALS, muscular dystrophy and Parkinson’s disease as well. 

Thank you!" 

Upon finishing our speech, one person stood up to give us a standing ovation- others followed, until

eventually the entire room was standing. My dad and I received one of the two standing ovations of the

night! What a fantastic feeling! 

Having the opportunity to share my story again was wonderful.

MS Ambassador

It took me a long time to accept that I had MS. I didn't want to share with many people, in fear that I would be treated differently. I had already spent over a year feeling like an outcast. I didn't want that to continue, so I tried my hardest to act "normal" at school, church, and any other social gathering. I continued to miss school due to fatigue and other MS symptoms, and struggled to create friendships. That spring, a staff member at the Upper Midwest Chapter of the National MS Society contacted me and asked if I would like to be the MS 150 Ambassador! Of course, I saw this as a great opportunity, but I also knew that meant people would find out that I have MS. I anxiously said yes, and within weeks, had a video created to promote Walk MS. 

On the first Friday of March, I received the video over email. My high school had its all school gathering that afternoon, where I had planned to make an announcement asking people to join my team; but my plan changed at the last minute. The leadership team asked me if I wanted to show the video. At first I said no, but a minute before I went on stage, I said yes. The video played, and the school was silent. Following the video, I went on stage and said to my peers, "I am not asking for your sympathy, I am asking for your support." The entire school now knew I had MS.
(Click the link to view the Walk MS Video)

After school that day, I sold "monkey pins" as a fundraiser for Walk MS. Although I was selling them for $1, students were handing me $20 bills as a donation. Some students just wanted to shake my hand. I was amazed at their reaction! For months I dreaded the day when my friends would know I have MS. I was afraid I would be treated differently. But, instead, I was finally treated normal. Others understood why I continued to miss school and accepted of that.

Sharing my story was one of the best things I had done. A few weeks later, my mom received a phone call from the MS Society asking if I would do an interview with Channel 4, WCCO an hour later...eek! My whole family met at home (in the middle of the school day), just in time to clean the living room to prepare for the interview. My dad and I were interviewed while walking around the neighborhood, in an effort to promote Walk MS.

(Click the link to watch the WCCO Interview)

In the following weeks, I also had interviews with Fox 9, Shoreview Press, a Duluth radio station, and the Duluth News Tribune.

With each interview, I felt more and more inspired and excited about sharing my story. The reactions I saw on people's faces when I shared my story made me want to share more. The typical diagnosis age for MS is 20-50 years old, and I was 15.  At that point, I knew I wanted to continue to spread awareness for the MS Society, and continue to share the story of my diagnosis journey. I wanted to, and still want to put and end to MS.  

November 18th, 2011

On November 18th, 2011, I was diagnosed with Multiple Sclerosis. Even though I received the diagnosis on the 18th, I had exciting plans in place for the 19th, which my parents did not want to ruin for me. On the evening of November 19th, my parents sat down with my brother, sister, and myself and explained the doctor's diagnosis.  At first, I subconsciously blamed myself. I thought that I had somehow caused the diagnosis- as if I had even wished for it. For many months I had wished I would get a diagnosis of something just so the mysteries would be solved. I asked my siblings to leave the room so I could talk with my parents alone.

With tear-filled eyes, my parents and I discussed what the diagnosis of MS would mean for me. The scariest part for me, was the though of the needed medications to prevent progression of the demyelinating disease.

The weeks following my diagnosis, my thoughts were filled with question and disbelief, and I continuously reminded myself that I have MS. I continued to work through the emotions while discussing the possibilities for my future with my mom and dad.

Not long after, I visited my new neurologist to learn about medication options. He explained the options to me; daily, 3x/week, 1x/week, or 1x/month injections. Of course, each medication had their own unique side effects. The thought of giving myself injections scared me. I had been poked by hundreds of needles in the last 14 months, that I did not want anymore. I prayed for weeks that I would not have to go through the pain and emotional stress of learning how to administer self-injections.

In late January 2012, my parents informed me that my medications would arrive that day. My eyes immediately filled with tears as the thought of an injection every day became reality. Upon arriving at the doctor's office, the nurse, whom my parents and I learned to love and trust deeply, showed me, and allowed me to practice giving an injection into a piece of foam. Then finally, it was time. It was time for me to receive my first dose of Copaxone. As I lifted my shirt to receive the injection on my stomach, my dad begun to cry, as he looked at my terrified face and said with a disappointed, frustrated, and worried look on his face, "I'm sorry. I love you." Then the needle punctured my skin, and the liquid entered my body. I experienced a burning pain at first. We stayed at the doctor's office to ensure no difficulties, and then left for home. My routine of injections had begun.

In late January 2012, my parents informed me that my medications would arrive that day. My eyes immediately filled with tears as the thought of an injection every day became reality. Upon arriving at the doctor's office, the nurse, whom my parents and I learned to love and trust deeply, showed me, and allowed me to practice giving an injection into a piece of foam. Then finally, it was time. It was time for me to receive my first dose of Copaxone. As I lifted my shirt to receive the injection on my stomach, my dad begun to cry, as he looked at my terrified face and said with a disappointed, frustrated, and worried look on his face, "I'm sorry. I love you." Then the needle punctured my skin, and the liquid entered my body. I experienced a burning pain at first. We stayed at the doctor's office to ensure no difficulties, and then left for home. My routine of injections had begun.

For the next 16 months, I learned how to manage the pain, bruising, and lumps formed on my skin from the medication. On many occasions, the pain was too strong to tolerate, and I would hold my arm, leg, or stomach in an effort to ease the pain.

But on March 27, 2013, my prayers had been answered. A new oral medication was approved for MS treatment; Tecfidera. I was no longer faced with the reality of painful injections every night. I could  say goodbye to those needles, and take two pills every day!

Many events and opportunities emerged after I learned of my MS. Stories and pictures will be shared in coming posts.

    

A Year of Questions

Have you ever had your foot fall asleep? Not the tingly-needle-poking kind. More of the "numb" feeling? On September 9th, 2010, I felt that numb feeling in my fingertips. I remember riding in the car with my mom, and telling her about the weird sensation. We looked at each other and wondered what may be going on.

But the next day, that feeling had spread to my whole hand. Soon enough, my whole right arm
felt as though I had a thick sleeve and glove on it. I went to a few doctors about it. None of them could come up with any explanation for this unusual feeling. That is when I had my first MRI. At that point, I had braces on my teeth. When the doctors tried to "read" the MRI images, it was quickly discovered that there was a huge reflection from the metal in my mouth, and the MRI images were unreadable. The doctor figured there wasn't anything on the scans anyway, and dismissed it as "teenage anxiety." Ha!

Two weeks later, the strange sensation subsided. My family decided to take a camping (okay, okay, we were in our RV. But we went to a campground! That's still camping...right?). As we arrived at the campground, I began complaining about pain in my hand. The next morning, I woke up and my whole body was tingling, head to toe. The kind of feeling when your foot falls asleep; this time the tingly-needle-poking kind. My parents suggested I sit outside in the sun to get some vitamin D. I just wanted to sit in bed, sleep, and not move.

The following day, we ended our camping trip a little early. We were about 30 minutes away from my grandparents house, where we decided to have lunch. Upon arriving at grandma and grandpa's, I went immediately to the couch. I pulled out my homework to try to get some done, but soon realized I was having difficulty reading. The words were jumping all over the page. My dad looked at my eyes, and saw them "jumping." The best way I can describe what I was seeing, is to reference those old scrolling televisions. This resulted in a call to the doctor, who said they could see me in 3 weeks...we all decided that was too far away, and I needed to be seen sooner than that.

I stayed home from school the next day. A family friend who used to be a nurse told us to go the emergency room at the University of Minnesota. As soon as we got there, numerous doctors, nurses, and medical students filed in and out of my room to try to figure out what was going on with me. Finally, the consensus was to have me spend the night in the hospital and have a lumbar puncture the following morning- Ouch!

The lumbar puncture didn't show anything, and I seemed to be improving, so I was discharged from the hospital after a two night stay. However, the neurologist ordered another MRI, which meant I had to get my braces removed four months early. The day after being discharged from the hospital, I had my braces removed, and had an MRI.

Wanting to be a normal teenager, I went to the middle school dance directly following my MRI. I was greeted by my best friends, and warmly welcomed by my teachers. It was great to see such friendly faces after being in a hospital room for a couple of days.

It was this MRI that finally brought answers to my strange symptoms. I had a single lesion in the center of my brainstem. No other lesions were visible, so I was diagnosed with Acute Disseminated Encephalomyelitis, or ADEM. Another name they gave me was Clinically Isolated Syndrome. In other words, they still didn't know what was going on with me, and this label seemed "good enough."

Things seemed to be going alright, which lead me to try to return to school. As I prepared for school, I noticed a strange sensation in my lips. My lips almost felt cold, and numb. Luckily, I stayed home from school, because only a few hours later I found myself back in the hospital. The neurologist put me on high dose steroids (1 gram per day) for 5 days. The neurologist showed us the lesion on the MRI, and we finally had an idea of what we were dealing with.The next 14 months were filled with dozens of doctor appointments, weekly occupational and physical therapy, and little to no school. I missed almost the entirety of my 8th grade year of school. Some friends came to visit me at home, which I was grateful for, however, many friends were too afraid of my condition. They were afraid I would be too tired or dizzy, or in too much
pain to visit.

On my birthday in July, I can remember wanting to go water tubing with my cousins, but being in too much pain. I didn't want to move my arm due to the intense pain. Eventually, the pain subsided, with a brief appearance on occasion for the next few months. However, the pain returned along with severe headaches in November, and I returned for another MRI. What this MRI showed changed my life forever.