Monday is a Day of Service

by Kimberly Goodrich, CFRE, Senior Director of Development

In 1994, Congress declared the federal holiday honoring Dr. Martin Luther King to be a day of service. Each year, citizens all across the country honor Dr. King’s memory by participating in acts of service that benefit their community. This Monday, January 19th, we encourage you to help improve lives today for the multiple sclerosis community as your act of service.

MLK 2015

Start volunteering today!

Need some ideas to help the MS community?

1. Donate your time by creating a fundraising event to benefit MSAA.
2. Participate in Swim for MS.
3. Make a purchase from a company that supports charitable causes.
4. Make a monetary contribution.
5. Sign up for our Street Squad program and begin spreading the word about MSAA.
6. Perform random acts of kindness for someone in your community.

We would love to hear how you are spending your Monday. Let us know what fun activities you’ll be doing either here or on our Facebook page.

MLK Day infographic

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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January 2015 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

January Artist of the Month:
Bob Donner – Apple Valley, MN

 Bob Donner - Aurora Campfire

About the Artist:

“I think you have MS, the doctor said to my wife and me, and then promptly left the room. We stared at each other, wondering ‘What the heck is MS?’ Of course we’d heard of MS, but to us it was only a charitable cause with no personal connection. Since that day in June 2008 we have learned so much, probably way too much, about MS.

Being forced into ‘medical retirement’ gave me the time to discover I had an artistic side. Due to its constant availability, a computer screen became my canvas. I may be confined to a wheelchair, but my art has opened up a new world to me – a world of color and shapes and shading. It has forced me to look at everything with ‘new”eyes. As limiting as my disability is, I can’t help but be grateful for what it has given me.”

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Be inspired – please send an online card featuring artwork by MS artist Bob Donner and spread awareness of MS and MSAA.

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The Heat and the Cold Can Impact MS Symptoms – Our Community Members Share Their Experiences

For many people with multiple sclerosis, heat can exacerbate MS symptoms. One of our contributors at MultipleSclerosis.net, Matt, even moved from southern California to Colorado, partly to escape the heat. However, another one of our contributors, Jackie, experiences MS symptoms, especially in her legs, when it is cold. It seems that temperatures affect people with MS in multiple ways, and in a recent article, Stephanie shared her experience. While she is extremely cold during the day, she finds herself turning into a “human torch” at night. As it turns out, many of our community members also overheat at night, or have other issues regulating their body temperature. More than 30 people in our Facebook community commented on Stephanie’s article, and here’s what they had to say:

I have night sweats too!

  • I had no idea that this was a symptom of my MS, which I was only diagnosed with 2 months ago. I also found out in an earlier post that “sensory overload” is part of it. Just ask my family, Saturday I was a complete jerk with EVERY little noise and I had no idea why. At least I can feel validated and not completely crazy!
  • I thought I was the only one who suffered from these strange symptoms! I prefer the heat over the cold, which makes my extremities hurt. And I freeze constantly – until I go to sleep. I bury myself under the covers to get warm, but wake up in the middle of the night kicking them off of me because I’m drenched in sweat. It’s miserable and ridiculously confusing!
  • I’ve been having night sweats for awhile and my neurologist keeps saying it is not my MS, but it didn’t start happening until a year after my diagnosis.
  • Fantastic post. This is something many people with MS experience as part of life with the condition and will help other people see they are not alone.
  • I, too, prefer the warm, not hot, weather. I freeze all day, but I can’t stand the covers on in bed.
  • I thought I was the only one who had the strange symptoms. I haven’t slept because of it for now 3 weeks, and it’s driving me insane.
  • I thought it was menopause possibly starting early. I never thought my MS did this. It’s horrible, especially when it’s actually cold.
  • I have the same problem with night sweats. I’ve had every test and no one can explain why I have them. Thanks for the article. I don’t feel so alone.
  • Yes, I definitely relate! I turn into a Bunsen burner especially late at night and no matter how cold it is I sweat like crazy without even getting all that over heated or hot. I still wake up sweaty.
  • ‪I sleep with ice packs all year long here in Michigan.
  • This is me, 110%! I’m freezing all day then a human furnace at night. And I can’t handle sleeping without a heavy blanket either from years of doing so before these symptoms.

I’m cold sometimes, and really hot at other times.

  • My husband and I had to resort to having our own bedrooms, and I often keep a fan on and have eight blankets. This is all because my body temperature is yo-yoing.
  • My feet always feel cold even though they’re warm especially when I’m in bed
.
  • I get really cold then I get really hot. It’s off and on.
  • I have that problem too. I thought it was just me, so thank you for posting this. I get night sweats to the point that my shirt will be wet.
  • I know EXACTLY what you mean! I am freezing cold, and burning up at the exact same moment. But it’s not just at night. I am always uncomfortable.
  • I thought it was just me! My body is like a house with no insulation. I’m either too hot or too cold.
  • I’m always warm – my hot flashes ended some time ago. My feet are always cold, even when it’s 100° outside. My circulation is getting so bad.

My Body temperature is hot all the time!

  • I’ll trade with you! I am like a human torch all the time. I never cool off even in the winter. People think I’m crazy because I don’t wear a jacket even in the winter. It makes it very hard to sleep because my husband is always cold and I am always hot.
  • I live in IL and it’s Dec. 22. I still wear shorts and a short-sleeved shirt to bed. I still sometimes wake up sweaty.
  • I don’t get cold often, but I’m always really hot since being diagnosed. It’s winter and I’m running my fan on full blast!

I’m cold all the time!

  • The only time this overheating ever happened to me was when I was taking Rebif. Now I am a thermostat nightmare – freezing cold all the time, layers and layers of clothing, and at night I have found the one thing to help go from hot to cold with minimal effort – believe it or not –  is a sleeping bag. The silk of the bag stays cool, and it warms up like a champ too so it’s easy to toss on and off at a whim without too much effort while TRYING to sleep.

Other:

  • I also find that using a sleeping bag helps me better adjust temp at night. I found this out by accident in September. Long story short, I was homeless from March of this year until December first. I was living in my car and when the season started shifting here in New England I finally borrowed a sleeping bag for the cooler nights. I slept much better with the sleeping bag than I did with blankets. My car would get stuffy at night with all the windows rolled up yet it was also chilly. The silkiness of the sleeping bag was comforting when I was feeling chilly and it was soothing to lie on top of it when I was feeling a little too warm. Now I have finally moved into an apartment and I don’t want to give the sleeping bag up.
  • I don’t do well in the heat. AC is for me in the summer, but I have been having cold hands and feet this winter nearly all the time. I am sitting in front of a floor heater nearly all the time now, and I live in California. There’s no way could I ever go or live where there is snow!
  • I don’t usually get hot or cold, but lately in the last 6 months I have sweating episodes that last about 20 minutes where I am drenched. I’m way past menopause so I know that can’t be it.

What about you? Do you have trouble regulating your body temperature? Do you have a hard time with either hot or cold temperatures? Please share with us in the comments!

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December 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

A special seasonal December Artist of the Month:
David Desjardins – Union, ME

 David Desjardins - Christmas Morning

About the Artist:

“I consider myself to be a very positive and optimistic person, but it was difficult maintaining that attitude when I first learned of my diagnosis, even for me! I’ve always loved to paint, but there constantly seemed to be a situation or reason that demanded my immediate attention first. Now, however, I choose to do something creative with my time rather than giving in entirely to my illness, sitting in a corner mourning my losses.

I am so honored to participate in my second Art Showcase, and I am humbled to be in the company of so many talented artists. I used to paint only for my own enjoyment, but now when I hear how others enjoy my work it really makes my day!”

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Be inspired – please send an online card featuring artwork by MS artist David Desjardins and spread awareness of MS and MSAA.

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MS Clusters – How many of your friends and/or family also have MS?

There has been a great deal of research examining the role of genetics in the development of multiple sclerosis over the years. The current understanding is that MS is not directly inherited, however, genetics appear to play a role in increasing a person’s risk for developing MS.1 Experts currently believe that those who develop MS have inherited something in their immune system that makes them more reactive to whatever is causing the immune system to attack myelin. It is possible that something in our environment, potentially viral or bacterial, triggers the autoimmune response that leads to MS in a person who has an inherited susceptibility in their immune system. Because so many questions remain, we decided to ask our Facebook community if they are a part of an MS “cluster,” where multiple friends and/or family members have MS. Over 170 people responded, and here’s what many of them had to say!

Several people in my family have MS

  • My sister had MS. I have it now. She had PPMS and I have PPMS. There were 7 MS cases within 2 blocks of where I grew up. I have heard that genetics loads the gun and the environment pulls the trigger.
  • My dad and his brother and sister all have MS; that’s 3 out of 5 siblings.
  • My sister and I were both diagnosed with MS this year, one month apart. Interestingly my sister is adopted, so we are not genetically related. We both want answers. It’s so tempting to blame something environmental. No one else in family has ever had it, and my twin brother is fine.
  • I have two kids and two cousins with MS!!
  • Two of my maternal grandmother’s cousins, my mother, her sister, my father and now myself. We all live in Victoria, Australia, which is quite cold and has higher rates of MS and Vitamin D deficiency than almost all the rest of the country. ‪None of the neurologists we see had ever come across such a “cluster” before
.
  • ‪I’m the 6th cousin on my father’s side of the family to be diagnosed with MS.
  • My dad, his sister, my sister, my half sister and I all have MS. That’s 3 of 5 kids (2 boys, 3 girls) with the same father that have MS.
  • My aunt has it and my great grandmother died from it. I believe my lifestyle in my 20’s was the ultimate trigger. But eating a mostly vegetarian diet and drinking tons of green tea has helped me in more ways than I could have hoped for.
  • I’m the third generation in my family to have MS.
  • I have MS, was diagnosed in ’87, but in retrospect I’m pretty sure I’ve had it since my early 20’s. In 2005 my daughter was diagnosed at 25. My family was puzzled that it isn’t supposed to be hereditary! Then in 2007 my husband and her father were diagnosed. He and I both grew up in the same town; maybe its genetic and maybe environmental?
  • I have 2 cousins on my mom’s side that also have MS. I’m the 3rd to be diagnosed.
  • I am the 4th in 3 generations that we know of.
  • I’m 55 and I’ve had it since age 30. We think my grandmother on my dad’s side had it, but she passed away in 1983. Now one of my daughters has it and one of my nieces has it; that’s it for now.
  • My daughter was diagnosed at age 16 years old, and 5 years later I was diagnosed as well.
  • My mother’s cousin, first born, had it. Her brother’s first born had it, and I, her first born have it; my brother’s first born has it. All were/are males except for me. Is there a first-born child link?
  • My sister and I both have MS, and we are the third generation to have this in our family.
  • My friend has 69 first cousins, and 19 of them have MS.
  • I have MS, my mother has MS, and her mother had MS and died from complications when she was 46 years old.

There are a lot of people who live near me who have MS

    • There isn’t a “cluster” in my family, but there is in my neighborhood. The house on left, house on right, house across street, and me – each has someone with MS. That is my whole block.
    • My sister had MS, but no one else in the family going back 10 generations had it. HOWEVER, a woman on the next farm had MS and now a young woman on the closest farm to ours has been diagnosed with MS; that’s in a community of 40 people.
    • I’m the only one in my family. Three of us from a very small country town who went through primary school together have it.
    • My co-worker had MS, then I had it, then another co-worker got diagnosed…all while active duty Air Force serving in same building. It’s a very interesting connection.
    • There’s a cluster here in northern California.
    • I grew up in the town of Tonawanda in Western NY. It’s located in between Buffalo and Niagara Falls. Many people I went to school with have MS.
    • I don’t have a family cluster, but 3 of us, all female, same age, lived on same block within 4 houses of each other, have MS. There could be more that we just were not in touch with after moving away. We were all diagnosed in 2005.

I’m the only one in my family who has MS

      • No one in my family on either side has MS.
      • I have it, but I’m the only one in my family. I was told that MS wasn’t hereditary.
      • I am the only one with MS. Diagnosed at 33 and I am 40 now. Praying no one else in my family ends up with it.
      • I am the first in my family. We went way back and couldn’t find anyone.
      • My dad was the first and only in our entire family.
      • I am the only one in our huge family.
      • I was told that MS is not hereditary?
      • I was told that MS runs in the family, but usually skips a generation; I am the first on both side of the family to ever be diagnosed with MS. I was diagnosed in 2007 when I lived in CO – which has the most people to be diagnosed with MS.

There are multiple autoimmune or neurologic diseases in my family

    • My mother has Crohn’s Disease. My youngest son has Type 1 Diabetes, my eldest has allergies, and I have MS.
    • I’m the only one with MS, but I also have neurofibromatosis (NF). I have over a dozen family members with some type of neurological problem. I have a nephew who has NF and Parkinson’s, and several family members who have epilepsy. I am 58 and was diagnosed with MS about 14 years ago. I’ve had NF all my life. I passed it on to my son and daughter.
    • I am the only one in my family to have MS, but my sister has Lupus.
    • My father’s three cousins (MS), his sister (ALS), he (peripheral neuropathy), my husband (MS), our daughter (MS – diagnosed at 10!)!!
    • As far as we know, my middle child, my daughter, is the only one to have it. My mother’s family all came from Sweden, which is a hotbed for MS. I don’t fully understand a lack of Vitamin D being a factor. We live in PA where we do get a lot of sunshine.
    • Four out of 6 of my siblings have MS, and my mother died from ALS.
    • My grandma had MS, my aunt has Lupus, and I have Neuromyelitis Optica.
    • I was diagnosed a year after a maternal cousin was diagnosed with MS. My cousin’s mom had severe RA, and my mom’s fraternal twin has Lupus.

Reference:

1. Aronson KJ. The epidemiology of multiple sclerosis–who gets MS and why? In: Kalb R, ed. Multiple Sclerosis: The Questions You Have – The Answers You Need. 5th ed. New York, NY: Demos Health; 2012:21-27.

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November 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

November Artist of the Month:
Terry Densford – Jacksonville, FL

 Terry Densford - Blue Blue

About the Artist:

I was diagnosed with MS on July 4th, 2011 – an easy date to remember…my MS affects my right side, from my face down to my toes, making it hard to speak, write, and other things we sometimes take for granted…

MS is something that hovers over my head. Will it get worse? If it does, how will it affect my life? When is the next time I will have another flare up? Where will I be? What will I be doing? Is my hand just asleep, or is it my MS? All normal questions I believe anyone who struggles with MS, unfortunately, asks themselves on a regular basis. All that being said, I consider myself lucky. I feel fortunate that I was diagnosed early; that there are medical advances out there that have helped me keep this disease under control. I push fear aside so I can continue to move forward. I intend to live my life as if there isn’t anything hindering its quality.”

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Be inspired – please send an online card featuring artwork by MS artist Terry Densford and spread awareness of MS and MSAA.

Calling All Artists with MS
It’s that time of year – MSAA is now accepting submissions for our 2015 Art Showcase! If you haven’t already done so, submit your best artwork by December 18th 2014 for a chance to be a part of next year’s Art Showcase.  

Submit your artwork for the 2015 MSAA Art Showcase.

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Happy Halloween 2014

Boo! From all of us here at MSAA, we’d like to wish the multiple sclerosis community a safe, happy, and fun-filled Halloween!

By Johnny Martin ecdl (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

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October 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

October Artist of the Month:
Janice Paige – Bel Air, MD

 Janice Paige - Fall Fun

About the Artist:

“I am the mother of two grown sons and a wife of thirty-five years. I was a Special Educator for twenty-eight years…I obviously enjoy sketching and painting. I find it exciting and relaxing. 

I was diagnosed with relapsing-remitting multiple sclerosis in the winter of 1999 after a bout with the flu. The doctor that examined me indicated that my right side was weak and that something was going on with my brain. I was so afraid that I just went numb! I was referred to a neurologist who scheduled me for several MRI tests. I was also scheduled for a couple of spinal taps. However, I was not diagnosed for eight months.”

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Be inspired – please send an online card featuring artwork by MS artist Janice Paige and spread awareness of MS and MSAA.

It’s also that time of year – MSAA will soon be accepting submissions for our 2015 Art Showcase! Be on the lookout later this month on mymsaa.org for more information on how to submit your work or sign up to receive MSAA email updates to be the first to know when the Art Showcase is open for submissions!

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September 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

September Artist of the Month:
Laura Patchen – Pittsford, NY

 Laura Patchen - Alma Mater

About the Artist:

“I was diagnosed with multiple sclerosis in November of 1998. At the time, my daughters were just 8, 10 and 13, and I had a flourishing career as a speech-language pathologist in private practice. I feared that my life would change, and it has, but not quite in the ways I thought it would. I had to stop working in 2005, due to physical and cognitive limitations. It was difficult to give up something I loved to do, but eventually, I’ve found other things, including painting.

The “Alma Mater” is the building my speech classes were held in….a wink to the past, and a fond memory. Life goes on, MS causes changes, but being able to document important memories in acrylics helps me cope.”
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Be inspired – please send an online card featuring artwork by MS artist Laura Patchen and spread awareness of MS and MSAA.

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Thank You Readers! My One Year MSAA Blog Anniversary

By Matt Cavallo: 

It was one year ago at this time, I started volunteering two blogs a month for MSAA. I was thinking about it today as my oldest son got ready for his first day of first grade. One of my first blogs was a back to school blog about parenting with MS, where I cried as I watched him go to school for the first time. I have shared many memorable blogs with MSAA since that time. From the one about a stranger “paying it forward” and buying my meal when he heard my MS story, to my recent birthday blog, each story is intended to provide inspiration and hope through my own journey.

My favorite part about writing the blog for MSAA is interacting with you, the readers. I have met so many wonderful people along this journey. Whether it has been through my personal website or social media, many of the readers of this blog have reached out to thank me for my contributions to this blog. I can’t tell you the tears of joy I experience from all of your feedback. It has been a pleasure sharing my stories here, and I it touches my heart that they are meaningful to you.

Thank you again for all the great feedback throughout the year. I promise to continue writing these personal blogs and sharing my stories and experience with you. Being able to connect with patients like myself makes it worth it. Together, we are making a difference in the lives impacted by MS. Take care and keep up the good fight!

Resource:
Parenting with MS – http://blog.mymsaa.org/parenting-with-ms/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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