Spring Cleaning with MS

Spring has sprung, which means the weather is warmer, the flowers are blooming, and of course, spring cleaning and organizing is upon us!  We’re sure everyone would agree that spring cleaning can be a tiring activity.  However, for individuals with chronic conditions, especially those with accompanying fatigue like MS, this can be even more of an arduous task. Cleaning and organizing can be exhausting, and physical clutter can create mental clutter and even anxiety.

But our writers here at MultipleSclerosis.net get it. They understand the struggle and have written multiple articles around the topic of managing household chores and cleaning. So, we’ve created a compilation of the tips and strategies they shared to make it a bit easier to take on the spring cleaning frenzy.

When It’s Time to Clean                                                                     

  • Do a little at a time: To save energy, try to do a little cleaning at a time.  Pace yourself, you don’t need to do it all at once!  If you have limited mobility, try to plan ahead.  For example, if you pass through a room that needs cleaning, bring a swifter with you so you can clean as you go if possible!
  • Use a lightweight vacuum: Maneuverability can be much easier with less weight to move around. Even investing in a steam cleaner could be a solution, as they are easy to use and can cut down on labor.
  • Use long handled scrub brushes: These long-handled toilet brushes are advantageous when cleaning showers, tubs, and other household areas. They provide minimal bending and twisting and can save wear and tear on your knees.
  • Place a hanging rack over or near your dryer: This will help make it easier to hang items you may want to air dry.

Ongoing Energy Savers

  • Sit while you cook: If there’s space, keep a stool or high chair in the kitchen so you can sit down while cooking or prepping food
  • Save the steps: If you have steps in your house, leave items that need to go upstairs at the bottom of the steps, and at the end of the day make one trip. (Bring a bag if needed!)
  • Invest in a “grabber”: These can be very helpful, especially in the kitchen to reach or pick up things.  They can also be used to replace light bulbs that are hard to reach!
  • Work on clutter management: Staying organized is difficult for everyone. Taking a quick 15 minutes a day to tackle clutter can prevent long-term stress and help you from getting overwhelmed.

Sort the Clutter   

When going through clutter or miscellaneous items, try managing it with five categories:

  • Trash – Items that are damaged or can no longer be used/sold or donated.
  • Good homes – These items may go to a good home for someone else to enjoy or use.
  • For sale – These items may have some value and could be sold.
  • Storage items – These may be functional items that are not used on a regular basis.
  • Keep – These are functional items used regularly or items with sentimental value.

Ask for Help

Cleaning and decluttering is a process that takes time and maintenance, and it’s never a bad idea to seek help if needed! As always, you know your body best and what it needs, as well as when you should or shouldn’t push yourself.

Although often daunting, have a clean environment and reducing clutter may have a more positive impact on your life and journey with MS than expected!

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Let’s Hear It for the Volunteers!

This week is officially marked as National Volunteer Week. Volunteers are so necessary for many organizations including ours. For this post we wanted to introduce you to some of our amazing volunteers here at MSAA.

Charles Backlin known around our office as Chuck has been volunteering with MSAA for 11 years in our home office.  After retiring from the US Military Chuck was in search of something close to home that he could get involved with when he came across MSAA.  Chuck has been volunteering since he was young, taking part in Boy Scouts and the Ground Observer Core in Junior High “We needed eyes on the ground in area’s where we were watching for potential threats from Russia. We would go out and observe the area and report places that were suspect to be evaluated by a fighter system.” From this early exposure to being part of a volunteer group Chuck was able to experience not only being a part of a group and working toward a common goal but also serving others. When asked what he would say to potential volunteers he stated “They need to get out and do for other people. It’s important.”

Barbara Gershenoff volunteers with our lending library helping clients get resources and connected to writings focused on living with MS, spurred on by having a friend who was diagnosed with MS years prior.  She also takes part in special events such as our annual Golf Tournament . For the past one and a half years Barb has come in to work with the team at MSAA to continue to connect with clients across the US and help raise funds so that we can continue to provide our programs and services to clients. Barb is a retired school teacher from New York who when she and her family moved to NJ was looking for a worthwhile organization to get connected with, googled local volunteer opportunities and came across MSAA. When I asked Barb what she likes most about volunteering she said without hesitation “I love the people here [at MSAA]. I’ve gotten to know them and this place [MSAA] feels like home. And there is of course the fact that I get to help people who really need help.”

Nada Baydoun has volunteered with our MSAA Social Media Street Squad since the summer of 2015. “I signed up to volunteer with MSAA because when I researched, I loved what I saw on the website. I was also encouraged to volunteer with MSAA due to the excellent reviews and comments on Facebook from people suffering from MS.” As part of our Street Squad team, Nada and hundreds of other volunteers help MSAA spread the word about new developments and available resources to the MS Community thru platforms such as Twitter, Facebook and Instagram. “I like that I feel that I am spreading awareness about MS. Many of my Facebook friends have messaged me privately asking me about my MSAA posts and wanting to learn more about MS. I also like that the posts [from mymsaa.org] offer practical and helpful information to those suffering from MS.”

Each of our volunteers and all of the amazing volunteers who have partnered with us at MSAA over the years are a vital part of what we are able to do for the entire MS Community. They help us to spread the word and make our programs possible; they are our ambassadors to communities and some of our greatest supporters. Thank You So Much to everyone who currently does or has ever volunteered with MSAA. You are not only part of our MSAA family but we also couldn’t do what we do without you.  A big Thank You also to Chuck, Barb and Nada who let me get to know them a little better while writing this post, you all are the best!

If you have any interest in volunteering with MSAA, check out our Volunteer page on our website or contact us at volunteer@mymsaa.org.

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What’s in Your Junk Drawer?

By Penelope Conway

We all have one – that infamous junk drawer that collects a little bit of everything from spare keys, to half used chapstick, to pens, to some unknown mechanical looking thing that nobody is quite sure what it is, to just plain junk. There seems to be at least one drawer like that in every person’s house. Even the most put together house has lurking somewhere in the kitchen, office or bathroom, a junk drawer.

It goes unnoticed until a pen is needed to jot down a quick note, then almost as if by habit you go to the junk drawer. Immediately you open the drawer and begin tossing items back and forth as you rummage through the contents in search of that much needed pen.

You keep telling yourself that someday you’ll clean that drawer out. Someday, you’ll organize it. But every time you open the drawer, the task seems too overwhelming, too time consuming and just plain hard.

Does this sound familiar?

Just like that junk drawer, we have places in our heart where we hide away bits and pieces of the brokenness we have experienced because of multiple sclerosis and other painful life events. It’s messy in there.

I know I stuffed away my own share of hurts, fears and difficulties. Things like the anger I felt because I had to end my career due to my MS progression, the defeat I encountered when I started using a wheelchair, the abandonment I went through due to lost friendships, the fear I experienced because I found I was no longer able to be as independent as I was before MS came along, and the disappointment I felt because I could no longer wear heels. Yes, even my shoe choice was a difficult thing to face.

I kept telling myself I would face those fears, disappointments and pain someday. Someday, I’ll address those things head on. But every time I opened that drawer in my heart, the task seemed too overwhelming, too time consuming, and just plain hard.  So what did I do? I ignored it.

Every once in a while I would forget it was there and accidentally open it up. The emotions would start spilling out and I would shut it as quickly as I could.

“Nope, I’m not dealing with that. I’m not ready,” I would say.

But I knew I needed to take some time to dump everything out, sort through what should stay and what should go, and then take the trash out. It wasn’t easy. I actually think it’s one of the hardest things in life to do, but it was time I let go of the hurts and fears weighing me down.

Today is a new day and you are worth too much to hold onto all those weighty emotions tucked away in your junk drawer. Set some time aside and start clearing out the clutter so you can make room for the beautiful things that you deserve in life. You are worth it.

*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.

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Spring!

By Lisa Scroggins

Finally, spring is here, and I feel more energized than I have for some time! I suppose it’s a combination of the improved weather, and an improved outlook.

When I saw my neurologist in February, I asked about Lemtrada as well as Ocrevus (which has since been approved by the FDA). My doctor wasn’t very encouraging about either option, and I was frustrated. I talked with my husband about getting a second opinion. I wanted the latest, greatest treatment, and I wanted it now!

I suppose I’m the classic dissatisfied person with long-time MS. Things really went south for me a few years ago, and I won’t lie: I was deeply sad, and shaken by the newest losses I was experiencing. We have made trips to see a specialist, and had high hopes for something new that might help me improve. I’m sorry to report that not only did the specialist not have any new ideas or ones that differed from my general neurologist, but she turned out to be a truly unkind person. By that I mean that from the first moment I met her, her basic social skills were sorely lacking, to the point of rudeness. (Example: when I first met her, I held my hand out to shake hers, and began to introduce myself. She held her hands up, palms facing me, saying, “I just washed my hands!” My gut told me this was weird, but I fought my instincts. I didn’t know this doctor yet, and we’d traveled quite a distance, incurring hotels, meals, gas, etc., and the last thing I wanted to do was go back home without getting seen.) That kind of thing can happen to anyone, but somehow, because MS is a chronic illness, and I made special arrangements to see a so-called expert, I was unprepared for the callous way that the “expert” treated me. It seems obvious in the abstract that not all doctors have a great “bedside manner,” but I confess I was really vulnerable and it hurt, probably more than not being offered something new to try.

Back to my local neurologist and my silent demand that I must be on something new. While I have not officially gotten a second opinion, I feel as though I have. I watched a YouTube presentation by two MS neurologists in another geographical area, and even though the words they used were very similar to what my doctor had said, it essentially was confirmation of what he had told me in February: those two treatments are new, and it remains to be seen if either or both have unanticipated, even serious side effects. I know they didn’t mean it in a disrespectful way, but they as much as said, “let others be the guinea pigs.” Worded more professionally, for people who continue to experience attacks while on another medication, one of these drugs might be a Godsend for them. But if attacks are not occurring, it’s much safer and wiser to remain on one of the drugs with a much longer safety profile.

I did not want to hear this, and yet, I needed to hear this. My husband didn’t say so, but I suspect he is relieved that I’m not pressing to hit the road again in search of a different answer. I’ve come to a proverbial fork in the road of navigating life with a chronic, sometimes cruel illness. The best thing for me to do is to continue on the therapy my doctor has prescribed.

People with MS are taking big risks to try to improve their functioning, and both Lemtrada and Ocrevus have the potential to be quite risky. The biggest buzz seems to be about HSCT (hematopoietic stem cell transplantation). This has not been approved by the FDA, although there are studies in progress. So far, the number of patients is small, and while it looks promising, I realized that I didn’t want to die in an attempt to get the procedure. I know of people who have gone to other countries to get this procedure, and have gone to great lengths to raise the money (in excess of $100,000) to do so. Not only am I unqualified to determine if protocols done anywhere are best practices, I’m also not fluent in any of the languages spoken where some are having HSCT.

Some of these people have died. Some advocates describe that a specific thing happened to this one or that one, and maybe those stories are true. And maybe they aren’t. I really did some soul-searching, and tried to imagine if I pushed to do this. I’m in a foreign country with my husband, when suddenly, I develop a complication. Things don’t improve, and I actually die. Well, then, my husband, having watched everything, has to contact everyone in our family and tell them. He has to get himself (and my body) back home, and deal with everything that happens when someone dies. I’m not trying to be dramatic, but I had to really imagine this. As much as I wish for an improved (maybe even cured!) condition, it seems cruel to put the people I care about most through the wringer. A less dramatic scenario could happen, too, wherein I didn’t noticeably improve, but we’ve spend a massive amount of money, not to mention the emotional capital draining away. And maybe I’d be one of the lucky ones, the folks who swear they’re like new.

Even as I write this, I wonder if I’m giving up too easily. Never stop fighting, right? The truth is that many people with MS profess to be willing to take gargantuan risks to get better. I counted myself among them. I’ve realized that I’m not such a badass, after all.

All of this has served as a kind of “spring cleaning” of my attitude. It’s surprisingly freeing to imagine not questing after another drug! Instead, I’m trying to focus on things that will bring me joy, as well as new “treatments” that I can control. I’m fortunate that we could afford to buy a Freedom Chair, and that allows me to ‘walk’ our neighborhood. I recently signed up for equine therapy and am looking forward to being outside on the back of a horse. Perhaps most telling of all, I found a book that has given me a lot of hope. I know I’ll still follow everything related to MS, I’ll research it and ask my doctor about it. Other people may push hard for something to get better, and maybe that’s fine for them. I’ve decided to focus on the here and now and the known.

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Why Self-Care?

Self Care by it’s very definition is “Care of the self without medical or other professional consultation” (or at least that is what Dictionary.com says). The very act of one caring for oneself would seem would be natural and come without thought. Then why is it so incredibly hard for individuals to practice self-care? We spend hours, weeks and years of our lives making time to care for others, putting others needs first and making to sure to be there for those around us who call. And while I’m sure this is incredibly helpful to the friends, neighbors, coworkers and loved ones who we give our time to, we often suffer in the name of others.

Please don’t get me wrong, helping family, volunteering for organizations, being there for friends and coworkers is valuable and vital to building good community and connection, but taking the time for self is vital to you. Often, and I’m probably not alone in this, I feel selfish and self-centered when I turn down working at a community event, changing plans to help a friend move or asking someone else to take something off my plate. But it’s important to remember that “an empty cup has nothing to pour out.”  So if you are depleted, running on empty, feeling emotionally or physically fatigued, not only will you personally feel the weight of it but possibly the interactions you have with others will also be impacted.

What is self-care? That looks different for every person. I enjoy a cup of coffee in the quiet of the morning on my back steps, going to the movies first thing Saturday morning when I’m the only person there and taking my favorite playlist with my DSLR camera and getting lost exploring my city on a beautiful day. Yours may be similar but it may also be completely different.

I’m a fan of podcasts and educational talks. If you have not heard of them, give TedTalks a try. They have a section on the importance of Self-care. And if you don’t want to take my word for why placing an emphasis on self-care is so important, give them a listen as they give ideas, tips and why behind the what of self-care. Listening to their talks may just be an act of self-care in itself 🙂

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Springtime Strawberry Salsa

The springtime is here and I begin to crave juicy and delicious fruits.   Fresh strawberry salsa is the perfect springtime treat.  This quick and fresh recipe can be served as an appetizer, snack, or dessert. You can also add peaches or mango too.

Ingredients:

  • 1 pint fresh strawberries, diced
  • ¾ cup cilantro, chopped
  • 1 jalapeno, seeded and diced
  • 3 tablespoons of lime juice
  • ½ red onion, diced
  • Pinch of salt and pepper

Instructions:

  1. Put all ingredients in a bowl and carefully mix together
  2. Refrigerator until ready to serve
  3. Serve with cinnamon pita chips or tortilla chips

Are you ready for some juicy seasonal fruit this spring season, too?

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MSAA Closed – Friday 4/14

Please note that MSAA will be closed on Friday, April 14, 2017.

We will be back in the office on Monday, April 17, 2017 at 8:30 am.

Enjoy the spring weather!

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Meet the Clients – Changing Lives Monday to Sunday

To kick off MS Awareness Month, MSAA released the new video Changing Lives Monday to Sunday to show the impact the organization has on the MS community, and to showcase our commitment to our mission of Improving Lives Today.

Now, meet Cathy, Sara, and Simone – the three MSAA clients featured in the videos:

  • Hear from Cathy whose MS was causing heat sensitivity that drained her energy and kept her indoors in the air conditioning. Cathy decided to reach out to MSAA about our Cooling Program and received a cooling vest that allows her to get outside and feel re-energized.
  • Sara talks about how her diagnosis and subsequent disease progression left her feeling overwhelmed and uncertain. In order to get the MRI to prove that her disease was progressing and her symptoms were a result of her MS, Sara applied for MSAA’s MRI Access Fund which helped to pay for her necessary test.
  • After her diagnosis in 2015, Simone wanted to find a way to take care of her whole self, but she also wanted to help others with the same diagnosis. In her search for volunteer opportunities, Simone came across Swim for MS and dove right in, not only raising money for the MS community, but also finding support for herself and the freedom swimming gives her.

To learn more about any of these programs, please visit mymsaa.org

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Jump Into Spring Cleaning – Then Nap

By Lauren Kovacs

“Spring cleaning” is more than scrubbing floors.  Yes, dusting and cleaning under the bed are both good starts. Cleaning how you do stuff is also important.  Methods to your madness will iron out life-wrinkles.

I admit spring cleaning is something I abandoned on the side of a dusty road, in the desert, years ago. Along with the OCD Cleaning Lady and the Floor Nazi Mom, I left them behind too.  Relax; I gave them a bottle of water.  They were replaced with the “Do What You Can Lady.”

With three boys, a husband, and a dog, I am drowning in major testosterone.  Physical spring cleaning is often a losing battle for me.  I take one task at a time, now.  I also make lists of what tasks need attention.  Cleaning toilets never makes that list.

Learn to work smarter.  Expel as little energy as possible, but be proud of the tasks you do complete.  One trick I use to move laundry is using a rolling plant stand.  I can no longer lift laundry baskets onto my walker and pushing it was scratching my wood floors, even with putting felt dots on the bottom.

When putting away laundry get help and put away winter clothes, as you uncover summer clothes, at the same time.  I put the youngest one’s clothes into a designated container to give away, as it comes through the wash. The older boys put their own clothes into large plastic tubs, with the size and season written on paper on top.  If one of the boys happens to eat miracle grow and suddenly needs a bigger size mid-season, it is clean and dresser ready.

It would be easier, if they were turtles and their clothes grew with them.  I am also wondering if being nudists would help.  I guess having weeds with big feet, in my house, is just life.  The dog grows out and does not need clothes, thankfully.  We just adjust his collar.

Once we switch over seasons, I make a list of what is needed.  They are boys.  Stuff gets stained, torn, or runs away with the socks.  Pinewood Derby paint does not wash out, by the way.  Blood on soccer uniforms responds well to hydrogen peroxide, before the wash.

Do what you can and what you are good at.  I am good at organization, making lists, and researching.  Cleaning the blinds, I am not good at, however.  Embrace your gifts.

Clean your methods too.  Make sure to know easier paths to get things done more efficiently.  Save energy the best way you can.  Even driving can be made more efficient.  Maybe have a route mapped in your head of how you shop.  Write down the map, if you have cognitive issues.

I like to spring clean with a small bag of M&Ms.  I reward myself with the completion of each task.  Reward yourself in some way when doing anything really.  You know the effort it requires.

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MSAA’s Fourth Annual Improving Lives Benefit

As MS Awareness Month came to a close at the end of last week, MSAA held its fourth annual Improving Lives Benefit on March 30th in Philadelphia, PA.  This event allowed all of us at MSAA to celebrate MSAA champions who embody our mission of Improving Lives Today in the multiple sclerosis community throughout the United States.

This year, we were extremely proud to honor Shana Stern (an MSAA Art Showcase Artist), her son, Walker Reynolds (a Swim for MS volunteer), and William Saunders (MSAA Board of Directors’ Treasurer).

Attendees got to hear from Walker about his desire to raise money for a cause that would directly benefit and support people like his mother Shana, who was diagnosed with MS in 1999.  We also had an opportunity to hear from Shana about her process of expressing her creativity and love of music and performance through her newfound passion of painting with her knuckles.  Finally, William Saunders spoke about his time serving as a member of the MSAA Board of Directors and as a representative of the MS community as a true gift.

In addition to celebrating the work of our MSAA champions, we were also able to raise more than $120,000, which will make a tremendous difference in the lives of numerous individuals and families with MS.

This year’s event would not have been successful without the support of our attendees, supporters, and our sponsors.  Thank you to everyone who contributed and we look forward to another beautiful evening next year!

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