"While MS is not hereditary, having a first-degree relative such as a parent or sibling with MS does significantly increase an individual's risk of developing the disease. Studies have shown that there is a higher prevalence of certain genes in populations with higher rates of MS. Common genetic factors have also been found in some families where there is more than one person with MS. Some researchers theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent that, upon exposure, triggers an immune-mediated response. Sophisticated new techniques for identifying genes are helping to answer questions about the role of genes in the development of MS."
I stole that straight from the National MS Society website: http://www.nationalmssociety.org/What-is-MS/What-Causes-MS
I have a vested interest in learning more about MS and its affects on my family Mainly I am concerned for the well being of my baby girl.
She is more susceptible to having MS. The fact that her mother has MS and she's a female play into the probability that she herself will have the disease.
Not cool.
My mother didn't even know she had MS when she was pregnant with me. I don't blame her at all for the fact that I have MS. Even if she did know, I still wouldn't blame her. However, how could I live with myself knowing I indirectly caused my child any pain?
When I was pregnant, I prayed for a boy. If my offspring were male, he would have a lower risk of developing MS.
The maternal line in my family is riddled with neurodegeneration. My Mamaw (maternal grandmother) was victim to Alzheimer's. My family is no stranger to the MRI. I'm really hoping it ends with me. Little Sandra has better things to do than worry about her brain.
We need to move closer to the equator. There are lower numbers of MS patients the closer to the equator. If Sandra is genetically predisposed to MS, she still would need to be exposed to the environmental factor that causes MS. Studies on MS and vitamin d have caught my attention since my diagnosis and even more so after my last MS related hospitalization. My vitamin d levels were very low after I moved to Oregon. The first, grey and gloomy winter in the Willamette Valley had me weak, blind and saying, "Why o why o why o did I ever leave Ohio?"
I take vitamin d pills on a regular basis now and we give Sandra vitamin d as well. It will have to do until we can move to a sunnier part of the world. I would totally change my latitude if it meant helping my baby.
I almost forgot to write a blog post as part of my MS awareness week blog a thin. I forget a lot of things. It's probably my least favorite symptom, along with frequent urination.
I write notes. I follow routines. I create checklists. All of these help to some extent, but things get dropped. It's not that I don't pay attention detail. I just don't remember the details unless I write them down.
It can be frustrating.
Juggling work and motherhood has proven to be challenging. Throw in trying to get my MBA and an internship and I have more than a full plate. I do think that taking classes is helping. I exercise my body, but exercising my brain is helping immensely.
I have noticed that I'll have really good days. It's almost as if a fog has lifted and I can focus. I use this time to get things checked off my to-do list. Then the fog comes back and I'm back to trying to remember where the heck I put my phone.
I have been participating
in various MS Walks since I was first diagnosed in 2009. I started in Ohio and continued when I moved
to Oregon. They have all been really special, but the Corvallis, OR walk this
year is on a very special date.
Had my mother been alive
today, she would have celebrated her 67th birthday on May 9.
That just so happens to be the date for the Corvallis (and Eugene) walk this
year. So my team, the Nutria Fan Club, will be partying this year at the walk.
There will be party hats, noisemakers and CAKE!I’m sure to get some people to join us with the promise of cake.
I don’t remember exactly
when she was diagnosed with MS, but I do remember it in the summer and I think
I was 13 or so. Although looking back on
her medical history, her neurologist deduced that she must had been living with
the disease for at least 20 years at that point. One particular event stood out in her
mind after my brother Joe was born when she went blind for two weeks. At the time,
her doctors thought she was stressed from having a new baby. She found that
hard to believe since he was such a good baby.
(I find THAT hard to believe since I know my brother.)
Even with such a life-changing diagnosis, she had a good attitude
about having MS and was quite self deprecating. Not being able to walk very straight
due to her disability, she would say that if she put a flask in her back
pocket, no one would ask questions. She even scared us a little bit with her sense of humor. When her friend and coworker with whom she carpooled would call her in the morning before work and ask my mother if she would
want to drive. Even though she had vision problems, she would just point out
that since it was dark outside in the early morning hours, she didn't really
need to see anyway. Then when her feet would go numb, she’d call them her
Spongebob feet. One of the last Christmas presents she gave me was a Spongebob
Squarepants blanket. I still cuddle with it today when I feel like I need to
feel her close.
Even when she learned she
had cancer, she still had a positive outlook and a joke to share. Sadly, she
lost the battle in September of 2004. I miss her every day and know she would
have fallen in love with my daughter. (Who wouldn't?) I miss her the most when I’m having a bad
day with fatigue or pain. Although there are ways to talk with others with MS thanks to the National MS Society,
it just wouldn't be the same as having my mother to talk to about various symptoms
and obstacles.
I want to celebrate her on
her birthday this year. I want to thank her for teaching me how to be positive
and be able to laugh at myself. It makes things a little easier. And because my
mother would never let us combine the days or the presents, we will also celebrate the
following day since it will be Mother’s Day. On that day I will reflect on the 23 wonderful years I had with her and rejoice in the fact that I have a Sandra (my daughter) in my life once again.
All donations I receive for this year's MS Walk will be birthday presents to my mom. If you would like to give my mom a present this year, go to my National MS Society Walk fundraising site. It is tax deductible. When was the last time you gave a present that was tax deductible? For anyone who donates $67, I will post a picture of my mommy on Facebook with a special thank you.
Actually the whole month is for MS awareness, but we're going to really focus on this week I guess. March 27th is World MS day, so March is a busy month for those at the National MS Society. . So be aware that I will share little snippets and facts about MS in general or my life with MS. Since I never blog anymore, it's nice to have a reason outside of mommy duties.
I will write about a new topic everyday with lots of interesting facts and undoubtedly funny commentary. I will also be whoring myself out for donations to my walk and my bike ride. That's right. I am doing TWO fundraising events this year. Call me an overachiever. Or an idiot.
If you have any questions about MS, you might want to ask a doctor. I can only really tell you my experience and send you links I found via my friend google. The National MS Society is also a better resource than I.
So Happy MS Awareness Week. Or maybe, I'm sorry you have first hand knowledge of the disease because either you or a loved one has it, but we can commiserate together!
Even though she is a bobcat, Kristen “KJ” Pertner is still a dear friend of mine and she has nominated me for the Ice Bucket Challenge. .
I have been following this phenomenon for the past few weeks and have been looking at it from a marketing perspective since that is the focus of my MBA studies. I am hopeful to be able to research consumer behavior in the non-profit sector. I am interested in looking into why donors choose the organizations they do for their charitable giving.
Because I want to increase my knowledge of non-profit marketing I have been reading a lot about this, articles both for and against it. Here is my personal take based on what I have learned and some questions I don’t have answers to, but hope to:
1.It’s wasteful. To offset the amount of water used, I have chosen to skip a shower. Shun will love that.
2.Though the challenge has raised a great deal of money for the organization, will the ALSA be able to sustain the numbers or have a plan in place to generate future revenue from this burst of donations? How will the success of the Ice Bucket Challenge affect future campaigns?
3.Are people actually learning about ALSA, or other organizations that are being supported by donations inspired by the challenge? Is there a metric in place for measuring the awareness built from this? I will be interested in learning more about this.
4.Funding cannibalism is an issue. (I’m NOT talking about funding cannibalistic activities like a people potluck. I mean the notion that people on average are limited in how much they can donate to charity, if someone donates $100 to the ALSA, he or she will likely donate less to other charities or not at all. Don’t worry Girl Scouts, I’ll still but Thin Mints.) Before you donate anywhere, please look at your financial situation to see if you are even able to donate at all. If you are worried about your favorite cause will take a hit, don’t donate to the ALSA and donate to a cause of your choice instead. Don’t forget to tell people why you have chosen that cause. If you can’t give money, see if you can volunteer your time. If you’d be interested in volunteering with the NMSS, let me know and I can connect you to the right people.
5.Why must the attention be placed on the donor and not the ones who actually benefit from this money raised? As someone with a neurodegenerative disorder, I would benefit, so this is a moot point. It’s allowed to be all about me and you people know I love a spotlight.
6.Why can’t people just donate in silence? The Ice Bucket Challenge isn’t just about money. It’s about building awareness of the cause you support. To break through the noise of other marketing images and communications we see on a daily basis, both commercial and non-profit, organizations need to make a little noise.
7.People are tired of the videos. Yeah. I get that. The celebrity ones are quite annoying, but Dave Grohl’s was hilarious of course. If you’re a Foo Fighter or Stephen King fan, you’ll love it. Oh, and the guy who plays a Hans Solo on Stargate…Patrick Stewart. His was nice.
I will not be nominating anyone, because I feel as if everyone I know has been nominated, but I will encourage others to take the time to learn more about amyotrophic lateral sclerosis ALS. If you choose to donate to the ALSA, I will say that any scientific breakthroughs on neurodegenerative diseases like ALS will help researchers studying MS and others like Alzheimer’s, Huntington’s and Parkinson’s. I am thankful to my friends and family who have already taken this challenge and in the process not only talked about ALS, but about MS as well. You didn’t need to take that extra step, but you did and I am truly honored and humbled by your altruism.
MS is difficult to grasp for those of us who have been diagnosed with the disease. We get so caught up in the “what ifs” of our future with MS, that we sometimes don’t even know how to tell the people we love how it affects us on a daily basis.
Just continue to love us like you always have. We won’t break if you hug us. We’ll actually get stronger.
Sadly I didn’t have the problem of telling my mother about my MS. I lost her to cancer five years before I was diagnosed. Even if she was around, she would know exactly what I was going through since she herself was inflicted with MS.
I understand it would be difficult for a mother or father new to this phenomenon to try and understand what their baby is going through. Since the moment your child was born you have been trying to protect her from the hazards and harms of the world. It’s hard to deal with something you have no control over. Now that I am a mother myself, I really understand the need to always keep my baby safe.
Do you know what I have to say to parents? I’m doing awesome and your child will too. It will take some time for her to come to terms with this new part of her life, but it’s only a small part. It does not define her. I am proof that a person can live a wonderful and full life while living with MS. I fell in love. I had a child. I am pursing my MBA. I love my life.
There will be bad times. It's not always going to be easy. Her symptoms will make a lot of things difficult, but with relapse remitting MS, there will be a light at the end of a very dark tunnel. Support and love your child with all you have during these relapses.
As long as I don’t ignore my symptoms and take care of myself, I will have less severe relapses. Do what you can to ensure that your son or daughter does the same and he or she will too be able to pursue all that s/he had planned to do before learning about MS.
I was told not to divulge my “disabled status” at work from the office that works (confidentially) with people who have disabilities at the university that employs me. During a year of being lost in my professional life, I constantly went back and forth on this topic. At the first position, it came out that I had MS because I had an awful relapse that caused me to be out of work for four months. It really wasn't their business as to why I was out sick, but being a young lady and bed-ridden raised a lot of eyebrows, so I told them. I didn't want to be a character in a string of gossip and speculation.
I was with that division for nearly three years before I had enough of inconsistent and unreliable leadership. I wanted to stay at the university though, so I looked for another position elsewhere. I should have stayed at my original post. I didn’t really trust anyone at my second position to divulge my daily battles. It was a stressful situation and I already had communication issues with my boss. If she couldn't understand or respond to the most simple requests, how could she understand this? We did not see eye to eye. Luckily I was in a classification that I would not be terminated, just reassigned.
The third position was only temporary while I found my niche, so there was no need to talk about it. there. Although in the short time I was there, I thought I could some day expose my secret to my coworkers.
Now, here I am in a wonderful position with so many awesome opportunities. I enjoy my coworkers and for once actually admire and respect the leadership. This division has their act together and is remarkably organized. I have never in my life worked for an organization like this. I love it. Not only do I love my day to day activities, but the Vice Provost reached out to me to be a part of a special initiative. This would never have happened in the places I worked before. I feel valued and appreciated.
Cluttered desk. Cluttered mind?
Would I mess that up if I told them I had a disability? Would they think less of me? Would they not trust me to be able to do my job?
Out of all the places I’ve worked on this campus, I had the most trust in my coworkers, my supervisor and the leadership of this division. I felt comfortable disclosing my disability with my supervisor (and my supervisor to be be…due to office restructuring) at my annual review.
I wasn’t sure how I would bring it up, but the topic of MRI’s came up during a casual conversation before the review. My current supervisor talked about how she was slightly claustrophobic and my future supervisor asked if she had ever had an MRI as her husband was a MRI technician. I took it as a sign to start talking about my own experiences with MRI’s.
They were very supportive and thankful that I let them know.
I was so relieved and am even happier and more secure in my work life. I have confidence again and am looking forward to tackling some tasks.
It really comes down to my decision about who I let know about my disease. The main reason why I wanted to disclose my situation is because I don’t think it’s fair that I get to “hide” my illness while others who are in wheelchairs or use canes do not have that choice. Also, I’m an advocate for people with MS. How can I truly fight for us and support others if I am keeping my MS a secret?
This was my decision. Just like each person with MS is different, so is each person's decision to talk about their experiences.
