Don’t forget to sign up and attend MSAA’s live webinar, “The New Insurance Marketplace and MS” tomorrow evening 11/19 from 8PM – 9PM EST. The webinar provides the ins and outs of the Marketplace, explaining everything from common insurance terms down to MS specific policy pitfalls. So, register today and come find out what the insurance Marketplace means for you.
For the third year in a row, MSAA is conducting a Thanksgiving Card Competition! We have six online Thanksgiving Card candidates (shown below), all vying for the top spot as MSAA’s most-popular Thanksgiving Card for 2013.
Please vote and then watch to see if your favorite card will emerge victorious! Once the voting is over next week and the selections are tallied, we’ll let everyone know which card is the top choice to email to friends and family, wishing everyone a Happy Thanksgiving!
To vote for your favorite online card design, please visit our Thanksgiving election poll (or go to support.mymsaa.org/voteforcard).
MSAA is very proud to present our 2013 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 MSAA Art Showcase submissions.
November 2013 Artist of the Month:
Julie Crow – Damascus, VA
From the Artist:
“After a couple of really bad falls from lack of balance and coordination, resulting in hip pins and a broken pelvic bone, my companion, Gino, an accomplished oil painter, brought some pastel pencils and a drawing pad to the hospital for me to have something to focus all of my energy on while I was immobilized. In the hospital and inpatient rehab, I drew pictures of friend’s pets and relatives. The baby is a friend’s first grandson, and I drew this from a photo taken at the beach. She was always there for me during the hard times. I have also drawn a few others for folks to show my appreciation for their time and their love. I’ve created a Circle of Hope link with MSAA…the amazing thing is that I’ve never painted or drawn. I truly could not draw a stick man before this last incident. I haven’t lately due to some problems, but am hopeful for tomorrow.”
Calling All Artists with MS:
It’s that time of year – MSAA is now accepting submissions for our 2014 Art Showcase! If you haven’t already done so, submit your best artwork by December 16th 2013 for a chance to be a part of next year’s Art Showcase.
Submit your artwork for the 2014 MSAA Art Showcase.
Recently I attended a training regarding long-term care planning that really got me thinking about what I could be doing now that may help my family and me in the future. For many, this is a difficult topic to think about. No one wants to plan their end-of-life care, or make arrangements for a nursing home when they are relatively young and relatively healthy. But the reality is, we do not have a crystal ball, and we cannot predict the future.
According to the presentation, approximately 70% of Americans eventually require some form of long-term care. With the cost of some facilities ranging from $5000 to $10,000 a month, the idea of self-pay is extremely unrealistic. Currently, Medicare does not provide long-term care insurance that would provide the additional support for care facilities. So unless you have a private long-term care insurance plan, or can meet the income guideline for Medicaid, you are stuck paying out-of-pocket for care. With that being said, it is important to look into long-term care insurance plans early on to hopefully purchase a plan with a decent rate.
Another important tip presented was about having the discussions with your loved ones and family members regarding end-of-life decisions. This can be a very challenging conversation to have; death and dying are often difficult subjects. But less than 20% of Americans have an Advanced Directive or a living will. For the 80% that do not, I am sure a large portion of them have never discussed their wishes with a family member. Without an Advance Directive, doctors, nurses, and EMT’s will continue to provide life supporting help to prolong your life. By creating an Advance Directive and creating an end-of-life plan, you are ensuring that your wishes will be followed.
In order to complete an Advance Directive, you must be 18 years of age and of sound mind. The document must be in writing and signed by two adult witnesses. It is suggested that you provide a copy of the Advance Directive to your doctor or care facility and provide a copy to a trusting family member. It was suggested that Advance Directives and other important information should not be kept in a lock box, rather, a storage cabinet along with other documents that may need to be accessed by family members.
This training was an eye opener for me and as if I wasn’t already a neurotic “what if” planner, provided some valuable information. I wanted to share some of the things I learned in this blog, with hopes to spread the word along to others.
Last week, we shared an infographic with our supporters showing just a few of the ways MSAA improves lives for the multiple sclerosis community. Today, we wanted to post that infographic again in case you missed it.
But we wanted to start by posing a question: What, exactly, is a “good” charity?*
There has been a lot of talk recently about good charities and bad charities. News reports have focused on charities that do little, if anything, to help alleviate social issues…and on companies who profit from the increasing need for funding to ensure missions are fulfilled. The nonprofit world is buzzing with words like “expensive ratios,” “ratings,” and “overhead.” The result: We are now taking a new look at what being a good charity really means.
How can your donation improve a life today?
As an organization, MSAA welcomes this conversation. We believe in using our resources efficiently to best serve the needs of the MS community. We have worked hard over the years to streamline our processes and improve our program delivery.
In addition to the wealth of information and support MSAA provides, for those who would be unable to afford equipment or MRI scans on their own, MSAA’s programs make a tangible difference in day-to-day quality of life. This is attested to time and time again in the unsolicited tesmionials of our clients.
*Excerpt from “Thoughts about Giving” in MSAA’s magazine The Motivator (Summer/Fall 2013)
Also made possible through the help of our supporters…
1,040,554 visits for vital information through our website
About 215,000 MSAA publications distributed to provide information and support
66,596 views of our 36 on-demand video programs
7,174 new downloads for MSAA’s smartphone app, “My MS Manager”
Donate now and improve a life today.
“Thank you so much for getting back to me so soon! After over two years of waiting and being passed off [by other organizations], my MRI is scheduled for a couple of hours from now! Thank you!” – Jordan R. from Colorado.
Improve a life today for someone like Jordan.
The Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support.
Improving Lives Today!
By Becky Remington
Greetings from the South Central Region. Last week, I attended a patient education program in Bentonville Arkansas, and as always, I feel like I have the most wonderful job in the world. One of the perks of my job is meeting amazing, warm, and caring people. Some of these people have MS, some of them are family members and spouses, and some of them come to the programs with their best friend, who just happens to have MS. And many times, as was the case this time, complete strangers sit together, start talking, share a meal together, talk some more, and exchange phone numbers or email addresses before the end of the presentation.
Last week’s talk was on Managing Stress and Anxiety. The speaker, a psychologist from Dallas TX, was excellent, giving a lot of practical advice and tips to those that attended. I have no doubt some of his stress relieving exercises will find their way in to people’s lives and make a difference in helping to keep some MS symptoms at bay. But I also know that those who made new friends left with something even more valuable.
Becky Remington is MSAA’s South-Central Regional Director
Many of us have taken different modes of transportation throughout our lives. Some of these modes have included various types of trains, trolleys, and subway cars,
all of which have one common purpose: to remain on the tracks provided to get to the desired destination safely. This may be an easier task for these transportation vehicles than trying to stay on track during everyday life. Keeping things organized and staying on course can be difficult with life’s unpredictable moments and events. This can be especially true when dealing with an illness like MS, a disease that proves unpredictable itself. So how does one try to stick to the tracks when life comes by and occasionally swipes you off course?
Here are some ideas on how to stay on track while dealing with life’s roadblocks:
What are some things you do to try and stay on track?
MSAA is very proud to present our 2013 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 MSAA Art Showcase submissions.
October 2013 Artist of the Month:
Tammy Jennings – Monterey, California
Ocean Wave
Oahu
“My name is Tammy Jennings and I lived in picturesque Monterey, California. I am a 53-year-old, single woman, and I have been living with Multiple Sclerosis since 1996; I was 37. I worked full-time until December 2006 when I had to “retire” as the unpleasant “side-effects” of my MS became too much to handle in a work environment. As a result, I had a lot of free time. So I spent the first few years visiting relatives that I hadn’t been able to see when I was working. My cousin, Joyce Quaglino, was one of those relatives. She can take all the credit for introducing me to the wonderful world of painting. I believe EVERYONE can paint, mainly because it is almost mistake proof. Some of the worst “mistakes” turn out to be the most beautiful paintings! The inspiration for the paintings submitted was the ocean. And Hawaii being one of my favorite places in the world, I took a picture of a sea turtle (Honu in Hawaiian) and painted it when I got home. I hope you enjoy them as much as I enjoyed painting them.
Both paintings are Acrylic & Oil. First I complete the main painting in acrylic, then go back and touch it up with oil to make it “pop” (as my cousin says).”
By Cindy Richman
Don’t you all agree something’s gotta give? In the twenty-first century I really had high hopes for my daughters’ and son’s futures. I anticipated serious discussion and change around work/life balance issues. Instead we have one disaster after another at home or abroad, and ultimately the entire US government is shut down! No time is spent on how we particularly as women go about improving the business of living our everyday lives.
If you are like me, you live like someone is chasing you trying to get everything done on time and fulfill the many roles you play from a mother, to an employee, to a caregiver. Expectations can be unpredictable and change may come in a moment’s notice. Your child has 102 fever and you need to get to the school ASAP. You worked late and the dinner you planned will take too long to cook and everyone is already starving. You have MS and you promised your son you would go watch his game, but you worked all day and have to work again tomorrow and you feel like you can’t take one more step.
“So what’s the solution?”, you ask? The solution is different for everyone, of course. The solution is particularly challenging when you are living with MS or loving and caring for someone who has MS. Living life in America today without a diagnosis or even a short term illness is really over-the-top to begin with and then adding MS into the mix is really signing on to be superwoman! One of the simple things I think we can all do right away is to try and take just a little bit of time for ourselves.
Beware, you will really have to make a thoughtful effort to do this because many women put everyone else’s needs first and completely forget about what they need. Even if the time is only 20 minutes or less to start, just begin practicing getting back in touch with yourself and being present in the moment. It could be as simple as appreciating the scent in a garden or reading a few lines of a poem that speaks to you before you hear the sound of someone’s voice demanding the next thing on the to-do list. The unpredictable life continues…
*Cindy Richman is the Senior Director of Patient and Healthcare Relations for MSAA
For this month, we focused our blog around managing MS. Some helpful tips were provided and the one that sticks out to me was about “asking for help”. Understanding your limits and what you are able to accomplish in a day is a great way to conserve your energy and focus on what is important. Often times it is important to involve those around you, but navigating the “how to” is a challenge.
For those who struggle with the symptoms of MS that may not be visible (i.e. fatigue, pain, and cognitive changes), the hidden symptoms of MS, asking for help from a friend or loved one can often be a daunting task. We frequently hear and read stories from individuals who feel guilty asking for help, because they don’t feel that they “look” sick. They fear they will be judged in asking for help.
It may be helpful, before you tell everyone about your MS symptoms to think; does this person play a significant role in my life? And, can I rely on them in the future if I need help? If the answer to both of these questions is yes, then it is time to put on your teacher hat and educate those identified helpers about what types of symptoms you experience and what they may look, or sound like, for you. MSAA’s The Motivator Winter/Spring 2013 edition discusses may of the hidden symptoms of MS: https://www.mymsaa.org/publications/motivator/winter-spring13/. This publication can be shared with friends and loved ones to further provide education and information.
Not every person with MS experiences symptoms in the same way, so providing information as to how MS looks and feels to you is very important. With more understanding and better education, we can hope to reduce the stigma around the hidden symptoms of MS and promote a more positive experience for both yourself and your loved ones.
Please share your experiences, have you had to educate your friends and loved ones about the symptoms of MS? What has worked for you?