Creating the Support Network I Want

By Stacie Prada

Living with a chronic and progressive illness like MS includes living with fear, pain and diminishing abilities. It’s rough.  It can make me grouchy and impatient. But it’s not a pass to treat people poorly. It takes more effort to be appreciative and pleasant when I’m tired and feel crummy, but it’s a tremendous life skill to cultivate.   Sometimes I succeed, and sometimes I fall short of my goal.  When that happens, I follow up with that person and try to repair any damage.

I’d rather people support me because they want to be there with me.  If someone is helping me solely out of obligation or pity, their resentment or condescension will come through in every interaction.  No thank you.

Feeling like a burden isn’t helpful to anyone’s physical or mental wellbeing.  And being treated like a burden isn’t fair.  Every person has challenges and limits, and we all have needs. Needs aren’t weaknesses. Some of our needs are just more visible or less common compared to what’s thought of as normal.

My best relationships are those of mutual admiration and appreciation.  We help each other often, but we make sure we respect our limits so that nothing is done with resentment.

I’ve put together some guidelines for myself to build healthy and positive relationships:

  1. When people show kindness or concern, accept it graciously. If I discourage it because I’m embarrassed, grouchy or feeling like they’re being pushy, they’ll eventually stop asking or providing support.
  2. Notice when I feel better about myself after interacting with someone. Put extra effort into connecting with them.
  3. Notice when I feel worse after interacting with someone. Consider possible reasons, and be honest about whether it’s me or them. See if there are ways to improve the relationship.  Let it go if it’s not a critical relationship. Pursue sincere conversation or counseling for the relationships I’m not willing to let go.
  4. Know that letting go of some relationships will be necessary for my health. This is really tough. Try to wish them well and move on.
  5. Be a cheerleader for others. Share in their joys and accomplishments genuinely and without jealousy, and express sympathy and encouragement when they’re having a hard time.
  6. Be willing to accept help. I’d love to be completely self-sufficient and strong, but refusing help pushes people away. Remember accepting help might make them feel better too.
  7. Grant people grace when they periodically commit a friendship blunder. Hope they’ll do the same for me. People will never respond perfectly in every situation, and anyone expecting perfection is being unreasonable.

Striving to follow these guidelines has improved my relationships immensely, and it’s created a positive support network that I can count on when I need it. We support each other and don’t keep score. Having them around makes every challenge easier to tackle and every loss more tolerable to accept.  Plus, the effort I put into adding positive energy in the world helps me feel I have value and just plain feels good.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

Share

National Volunteer Week

Celebrate National Volunteer Week April 15-21, 2018!

Welcome to National Volunteer Week!  Established in 1974, National Volunteer Week began as a way to set aside a time to volunteer for a cause and to recognize the amazing people who dedicate their time and service year-round.

Volunteers are an essential part of any organization and it is no different for MSAA.  Our selfless volunteers who have partnered with MSAA over the years help us spread the word, make our programs possible, serve as ambassadors for our online forum and improve lives today for the entire MS community.

What does service mean to you?  Why do you volunteer?  Let us know how you are celebrating National Volunteer Week by sharing your story with us on social media using the hashtag #MSAAVolunteer.

Do you have any interest in volunteering with MSAA?  Visit our Volunteer page for more information, or contact us at volunteer@mymsaa.org.

Share

It Takes a Village to Navigate This Life with Multiple Sclerosis

By Penelope Conway

Do you know that old saying “It takes a village to raise a child”? Well, I happen to know for a fact that it takes a village to navigate this life with multiple sclerosis.

I was always an independent person. One of those “I can do it by myself” kind of people. I could change the oil in my car, repair a leaking pipe under the house, open those impossible pickle jars and move furniture without even breaking a sweat. Having to shift that type of independence after MS came along was really hard for me.

I found that I needed help getting to appointments because my eyesight and motor function had decreased making it unsafe for me to drive myself, especially if going long distances.

I needed reminders (albeit sometimes annoying) for some of the simplest things in life like “be sure to set your trash out today for pick-up.” Something I wouldn’t have forgotten in times past.

I needed help pulling wet clothes out of the washing machine because my hands just couldn’t properly grip the wet clothes. Then folding the clothes and towels once they were dry would take me hours to complete.

I found that there were tons of things I needed help with. As an independent, I-can-do-it-myself kind of person, that was not an easy thing for me to come to terms with but it has gotten easier over time. I can still be a bit stubborn, but I know my limits and reach out when I know I need help.

If I can enlarge my circle of support, I am always willing to give it a try. I was even talking to my neighbor yesterday about calling on her if I have trouble opening those easy-to-open packages that aren’t really easy to open or when I can’t get a pill bottle open. She was more than happy to be asked to help out.

One thing I found to be extremely important is to let those that are helping you out know just how much you appreciate what they are doing. If they know you value their support, care, and love, it gives them a sense of purpose and they know that the things they do matter. Even the small things like picking up the mail or stopping by for a chat should never be taken for granted.

People need to know the time they put in to helping you makes a difference. They may say you don’t need to thank them, but thank them anyway. It always matters.

I have had some people that would always drag me down with their know-it-all advice and negative attitude, but do you know what I did? I cut my ties with them. Sometimes that is the healthiest thing you can do. MS is not any easy things to deal with and you don’t need any added stress to your day making things worse. Set up boundaries and don’t back down.

Surround yourself with positive people that lift you up.  You deserve to be happy.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Share

Five MSAA Resources for Care Partners

MSAA strives to be a leading resource to the MS community by providing free programs and services. But did you know that MSAA’s free programs and services aren’t just for individuals with MS?  Here are five MSAA resources that care partners can take advantage of, too:

  1. MSAA offers in-person educational programs about a variety of topics related to living with multiple sclerosis that are hosted throughout the country. These programs are presented with guest speakers who are experts in their fields, allowing attendees the chance to ask direct questions from the people who know best.
  2. This blog! MS Conversations features blog posts from many wonderful guest bloggers who are able to give insight and a voice to how individuals with MS experience their disease.  While everyone’s disease course and symptoms may be different, their posts offer unique perspectives that only a person living with MS can provide.
  3. MSAA’s award-winning publications are not just helpful for individuals with MS. These publications feature detailed information about various topics including: a general overview about multiple sclerosis, different therapy options, MS relapses, MS progression, and more.
  4. My MSAA Community, the free online forum where people can feel free to share information and experiences with other friendly and supportive members. Care partners are welcome to share their questions and get answers from other members of the MS community who may have had similar experiences.
  5. Feel free to also call MSAA’s toll-free Helpline at (800) 532-7667, ext. 154 to speak to one of our Client Services Specialists who are there to help answer any questions and offer additional resources if they are needed. Our Client Services Specialists can also be reached via our online chat feature, or via email at MSquestions@mymsaa.org
Share

Care of the Care Partner

For most people with a chronic disease like multiple sclerosis, the biggest piece of your support network is your care partner.  Care partners – whether they be a best friend, a spouse, a sibling, a parent, or other family member – are an essential part of any support network.  But like the people they care for, care partners need help and resources to care for themselves and prevent care partner burn out.

The Family Caregiver Alliance reports that 1 in 10 care partners has experienced a decline in physical health as a result of caregiving.  Due to the stress and daily struggles of life with a chronic disease, many care partners choose to spend their time and energy on their partner’s health and wellbeing, rather than their own.  Some small, but very important things that all care partners should do for themselves to prevent health decline are:

  • Make appointments with doctors and dentists for regular checkups and screenings.
  • Have routine medical testing done such as checking cholesterol levels, blood pressure, mammograms, or prostate exams.
  • Make sure to get enough sleep. It is much easier to focus on tasks of the day if you are well rested.
  • Maintain social interaction with friends and family who are important to you.
  • Make sure there is still some “me” time. If you have a hobby that you enjoy, be sure to keep up with it, even if only in small increments.

Most importantly, care partners should always feel comfortable asking for help.  Sometimes, one care partner is not enough and they need a break.  Sometimes, an individual with MS needs specific kinds of help that requires a specialist.  Resources are available for individuals with MS and their care partners for these situations, and many more.

To learn more about care partner resources, challenges, and care partner stories feel free to read over our cover story from the Summer/Fall 2014 edition of The Motivator, Care Partners: The People Who Make a Difference in Our Lives.

Share

Anyone else out there…?

As we’ve just finished a very active MS Awareness Month here at MSAA we wanted to take some time to talk about support networks and positivity for this month’s blog theme. When dealing with an illness like MS, its helps to create and focus on connections to others within the community, to know that one is not alone in what they’re experiencing. From our Ask Me Anything events in March we saw lots of similarities in what others were asking when it came to their MS symptoms and disease course. On MSAA’s Helpline we often receive calls from clients asking ‘Am I the only one who’s experienced this?’ ‘Is this normal for MS?’ ‘Does anyone else have this issue?’ And we consistently find ourselves validating all of these questions and concerns, because the fact is that individuals are not alone, as there are many others out there wondering the same things.

I think the feeling of knowing you’re not alone in a challenging experience can help to quiet the fears, concerns and anxieties that accompany it. Asking if there’s anyone else out there going through the same thing and learning that there is, can make someone feel more validated and less isolated. This is why having a support network is so vital, and not only to connect with during difficult times but also to share good times with as well. It’s comforting to vent, cry or scream in times of strife and have others listen, but it’s also important to relay positive experiences, humorous moments and celebratory occasions with those in your circle. Life will have its ups and downs as these inevitably come with the ride, so sharing in the ups when they do occur can help combat the downs. If you find yourself feeling alone and asking questions just keep in mind that you’re not, and there are others out there asking too.

Share

April 2018 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2018-19 Art Showcase – celebrating the work of artists affected by multiple sclerosis (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.

Bethany Conway – Big Flats, NY
April Rain

About the Artist:
“My diagnosis was nothing more than a blessing as it enabled me to realize I only have one chance at this life. It caused me to take a turn from the dark road I was heading down, come into the light and make better choices for myself. I strive to live with intention and embrace every season of it.”
Read more

Send an eCard

Share

Primary-Progressive MS Ask Me Anything – A Recap

Last week, MSAA held its third and final Ask Me Anything session of MS Awareness Month 2018!  Focusing on the topic of Primary-Progressive Multiple Sclerosis, MS Expert Steven Bromley, MD spent one hour answering 19 questions from our Facebook followers.

Some of the most popular questions from the AMA with Dr. Bromley include:

  • Is secondary progressive MS treated differently than Primary-Progressive?
  • What is the feedback from any of your patients who have now had their 6 month full dose of Ocrevus (after already having the first 2 half doses 6 months prior)?
  • Why does it hurt so much when I walk?
  • Is B12 injection helpful for MS fatigue?

Find the answers to these questions and many more on MSAA’s Facebook page or on the official transcript.

Share