Summertime Memories

The summer season usually conjures up warm memories for me (sorry, no pun intended!) of times when things were simpler being young and summer was the best time of year. Growing up, my family used to gather at my aunt and uncle’s house for get-togethers and special occasions, especially during the summer months because their house was attached to a private elementary school where there was a lot of open area. They acted as caretakers to the school grounds so we had access to two different playgrounds equipped with slides, swing sets and jungle gym activities and a large tot-lot for playing basketball and volleyball. We often had family barbecues there and were so excited when the 4th of July holiday was celebrated because we could watch the fireworks right from their porch. These are some of my best memories I hold from my childhood – playing outside with relatives and being with family and thinking the summer should never end.

As we grow older our memories stay with us – as special pieces of time you’ve stored for yourself to take out and reminisce over whenever you’re feeling sentimental, or just want to recall something good. There are certain triggers that can activate these memories – songs, movies, places, things. For me, my summer memories are triggered by the smell of flowers and grass, barbecue grilling – and the charcoal kind, not the fancier gas grill devices seen all over the place nowadays. Rice Krispy treats – my grandmother used to make the best treats for summer occasions. And mosquito bites – I know this one is a bit strange, but those little buggers would eat us alive playing outside during the summer!

The point is, no matter what the memory is or its trigger, these precious fragments of time that represent moments throughout our lives are something to treasure and hold onto with care. They allow us to go back to times we remember fondly and that gives us hope that the memories could possibly be recreated again someday.

What’s your favorite summertime memory?

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A Little About Me

Meeting new people and learning new things is always exciting. I thought it might be helpful for you to know a little more about me. My name is Melissa Young and I am the new Manager of Client Services. I have my MSW from the University of Pennsylvania. In my spare time I enjoy playing golf and tennis, cooking and spending time with my family and friends.

As I mentioned in my bio, I love to cook. I also enjoy watching cooking shows on TV, and trying to replicate the dishes for my family. It’s always fun to try new things, and sometimes I even succeed at making the dishes look like they do on TV! My favorite show is “The Pioneer Woman” starring Ree Drummond. Not only is she a fabulous chef, but she is a blogger too. I read her blog faithfully and I think the introduction to her blog speaks to how I view my blog. It reads:

“I am no life expert. Not by a long shot. I don’t have all the answers. Sometimes I don’t have any answers. Sometimes I have some answers. Sometimes I have what I think is an answer but it turns out not to be an answer. Sometimes I dance around the house in overalls and stilettos. But every once in a while, perhaps because I’m an older sister myself, perhaps because I’ve lived 43 years, perhaps because I’m constantly seeking answers myself. I’m able to give an answer that works for someone.”

I’ve been a social worker for over 15 years and have had to deal with my fair share of unique and difficult situations. I have a good heart and always try to do the right thing. I know I don’t know everything (far from it) but I am here for you as a resource and will do my best to get you the answers you need.

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

MSAA is very proud to present our 2015 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.

June Artist of the Month:
Paula Breiner – Tamaqua, PA

 Paula Breiner - Sunny Disposition

About the Artist:
“I am an MS Survivor. No, I am not cured; it means I live day to day with this disease. I recently took a painting class to help strengthen my hand, to better my thinking and concentration, and because I haven’t drawn or painted since high school back in the 80’s.

I was diagnosed in 2006 with MS. Over the years I have developed more symptoms, and last year I was put on Rebif. I have a very loving and supportive husband whom I will celebrate our 30th anniversary with this November. We have two beautiful daughters and four amazing grandkids.”
Read more

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

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Cool Summer Activities

As most schools around the country end their school year, many parents are finding themselves searching for activities that will preoccupy their children, but that are also accessible for the whole family. While many folks may opt for the parks or playgrounds in the warmer weather, individuals with MS may have to get creative to try and find activities that can be taken indoors during those warmer days to help avoid some of those heat-related symptoms.

But how can you entertain your children, before they tear through every cabinet in the household looking for something to do? Parents magazine provides some online fun activities that can be modified for any age group. Thinking about, or having a list of activities on hand may be helpful for days where MS symptoms are present, or fatigue has taken a toll.

Local programs are also available to children during the summer months. Many of these activities can be completed indoors to help beat the heat. Local libraries may have reading programs or special events; often they post these on their social events calendar or on a bulletin board in the lobby. Stores like Lowe’s, Home Depot or Joann Fabrics have free workshops available for families or children; you can call around to local stores to see if a calendar or events listing are made available.

Get creative this summer and see what fun activities you can find that can be completed indoors. Do you have any cool plans this summer?

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Summer Heat: The Enemy of the MS Patient?

By: Meagan Freeman

Before my diagnosis, the blistering sun of the summer season was my best friend. I was a swimmer, wake-boarder, and sun worshipper. I enjoyed my teen years, soaking up the rays in the California sun, trying to get a nice tan and reading magazines with friends. The hotter the better was my attitude! Boy, have things changed since my diagnosis in 2009.

Now, I have had to accept that the heat is no longer my best friend, but rather, my worst enemy. The heat of summer can be an incredibly challenging thing for those with MS, and it can lead to staying home alone while the rest of the family enjoys the beach, pool, and outdoor summer activities. For several years, I felt depressed about my situation. I had several relapses each summer, and my family members were enjoying my formerly favorite activities while I stayed home on the couch in my air-conditioned home, a virtual prisoner.

After several years of this seasonal imprisonment, I began to search for ways to beat the heat, and still enjoy family time outdoors. There are many options for combatting the summer heat, and I want to share some ideas for other individuals struggling with this issue. Fortunately for us, cooling technology has dramatically improved over the years. I always avoided cooling vests, merely because of vanity. I did not want to be seen with a bulky, unattractive cooling vest; but fortunately we have some wonderful, stealth options now.

The key is to keep the core temperature at a normal level, and through cooling technology, individuals can enjoy the summer days without experiencing flares and relapses caused by the heat. Heat leads to increased inflammation, which we need to avoid at all costs. Fortunately, simple cooling products can achieve the goal of maintaining a normal core body temperature, despite warm days.

MSAA has a wonderful program, offering free vests and cooling products to individuals who qualify for the program. The link for the MSAA cooling vest program is: http://mymsaa.org/msaa-help/cooling/. There is a short application to fill out, and this program can offer a vest to qualified patients at no cost. For those who may not be financially eligible, there are several other companies offering these types of cooling products. A good cooling vest can mean the difference between missing out on family activities, to being an active participant.

In addition to these products, I have found several MS vacation organizations, including the “MS Cruisers.” This organization offers cruises to many ports of call around the world, specifically tailored to meet the needs of MS patients. “This cruise is open to all MS patients, family members and friends who share an interest in the MS community, believe that health and fitness are powerful tools for overall well-being and independence, want to travel and interact with others who are facing the same challenges; and are aiming for the same goal of enjoying life to its fullest as they go through the process of adjusting their lifestyle to best suit their constantly changing needs.” (MS Cruisers.com, 2015.) Consider checking out this site for many options for amazing summer cruises. The site is located at: http://mscruisers.com.

I believe that the key to finding happiness and acceptance during a life with MS is to continue to enjoy all of the activities we enjoyed before our diagnosis. Through the use of simple cooling technology, and finding the right vacation options, we can continue to participate in life, enjoy the sun, and feel as “normal” as possible. If you find yourself imprisoned at home in the AC all summer, consider reaching out and trying one of these amazing programs. This can be your ticket to a wonderful, active summer season. Go enjoy it!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Things to Consider for Summer Traveling

It’s here again – the summer season is upon us! Though for some people it actually may feel like it’s been here for quite a while depending on where you live. But the recent Memorial Day holiday really kicked off the start of the season for most around the country. With the arrival of summer some people start making travel plans and agendas for how to spend these months. Trying to schedule a trip can be stressful, and for those traveling with a disability or chronic illness, the planning process can be extra demanding. Ensuring certain accommodations are in place, scheduling stops and making arrangements for accessible travel are some of the necessary steps to take when planning a trip. Here are some things to consider in the planning phase:

Where are you going?

  • If they are needed – does your destination have disability accommodations? Like accessible bathrooms and sleeping areas, accessible activities/restaurants/shopping/travel routes within the town? It may help to call hotels and destinations beforehand to ensure their facilities meet your needs. This can help to decrease the stress of arriving at your destination and not having what you need to enjoy your trip.

What will you need for your trip?

  • Packing necessities like toiletries is just one part of the process. Having the appropriate amount of medications/treatments, equipment, and other products is important to ensure you won’t be left without something significant for your health condition while you’re away.

Who can you contact for help?

  • While planning a trip you will find there are resources available that can help you with the process. For example, you can work with a travel agent who specializes in accessible and disability travel that has knowledge on how to find locations and services that are accommodating for your requests. You can also get in touch with disability organizations and resources in the area where you’ll be traveling for additional assistance regarding local services and what’s available. Websites like Disabled Travelers and Access-Able Travel Source can provide information for accessible travel needs as well.

Do you have plans for the summer? What does your planning process look like?

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How MS Taught My Son a Life Lesson

By: Jeri Burtchell

I’ve discovered that children born to people with chronic conditions are often the most empathetic and compassionate people I’ve met. You can give kids life lessons when you’re in the grocery store and see someone using a cane or a wheelchair, but nothing quite explains the real everyday hurdles like living with someone who has a chronic illness.

I have two boys. My older son, Mark, was 16 when I was diagnosed. The younger one, Alix, was just six months. Mark was your typical teenager: independent and active, with a big circle of friends and activities that kept him busy outside the house. By the time Alix was a preschooler, Mark had moved out to begin his own journey into adulthood.

It was like raising two “only” children, with one big difference – the second time around MS was calling the shots.

Alix never knew me any other way, so the fact that I used a cane, or occasionally needed a wheelchair was just normal to him. He’d sit in my lap and ask me to take him for a ride. He didn’t see me as different. Nobody whispered to him “it’s not polite to stare”. When he looked at me, he saw his mom and nothing more.

He’s a junior in high school this year, taking honors classes. Tonight we’ll be attending an award ceremony where he’s receiving a mystery award. He’s been an easy kid to raise. Never gets into trouble and is always around the house helping out. He’s cheerful and never complains no matter how much I ask of him.

Things haven’t always gone smoothly, though. When he was in sixth grade he was having a hard time. The transition to a new school with new friends was a lot for him to handle. When it came time to attend one of his band performances at school, I really struggled over whether I should bring my cane or not.

I didn’t want him to be teased for having a mom who was different, but neither did I want to fall down. Which would be more embarrassing to his middle school mind? I decided to let him choose.

We stood by the car and I whispered to him, “should I just leave my cane here and ‘wall-walk’ where I can?,” and he looked puzzled.

“Why would you do that? Don’t you need your cane?,” he asked.

“Well, I don’t want to embarrass you, you know, if the kids tease you because of this or something.”

He became really indignant at the thought. “Just LET someone say something, Mom! Nobody’s going to make fun of you. What kind of person would do that, anyhow?,” he asked.

I used my cane and he took my other hand, proudly.

That was just one special moment among many that made me see that having MS has not always impacted our family negatively. Do I wish I didn’t have it? You bet! Does Alix sometimes feel “ripped off” that he didn’t get the younger, healthier model of Mom than Mark did? Yep.

But we do what we must to live the best life we can despite MS, and in the process it has helped shape my son into a fine young man who I know will always wear his compassion and empathy like a badge of honor. It’s who he has become, and I’m proud to be his mom.

So for those who have small children and wonder how your MS will affect them as they grow up, take heart. I bet they will be amazing, too!

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Communicating with Employers and Co-workers about MS

While The Americans with Disabilities Act of 1990 (ADA) requires employers to provide reasonable accommodation to qualified employees and applicants with disabilities, it is often a challenging or difficult subject to bring up in the workplace. Individuals may fear that by asking for an accommodation, they may be judged or viewed as unable to complete the work at hand.

Navigating this process can be difficult, but there is a resource to help. The Job Accommodation Network (JAN) is an organization of employment experts that can provide confidential guidance around accommodations, or employment related issues.

On their website, they provide information about various conditions and offer helpful information about accommodations that have been used in the past for a number of different scenarios. To speak to someone directly, you can also reach the Job Accommodation Network at (800)526-7234 if you would prefer a more personalized one-to-one approach.

When it comes to discussing MS with co-workers, there are no set rules or regulations to follow. Just know that once the information is out there, it cannot be taken back. Opening up at work is a very personal decision and should be evaluated on an individual level. If you choose to disclose, prioritize who you feel should know about your MS (supervisor, direct team members, co-workers, and office staff).

Do you have any experience asking for accommodations at work? How was that experience for you?

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Community Thoughts on Apologizing for MS

The impact of MS on a person’s every day life can be profound. There are good days, and then other days that are just downright terrible, for a whole host of reasons. One of the contributors at MultipleSclerosis.net, Nicole Lemelle, wrote an absolutely touching story about one of her particularly bad MS days where she had embarrassing trouble with incontinence, and her husband stood by her side. She shared: He asked me “Are you alright?” Totally embarrassed, I shook my head yes and continued to softly cry. He lifted me to my feet and walked me over to the toilet. I sat there while he helped me get my clothes off and then assisted me as I got into the bathtub. I ran the water and he got me towels. As I sat in the tub soaking he cleaned the urine off the floor. It was taking him a while as it had spread throughout the bathroom. I sat in the tub watching him. I started to think that he didn’t sign up for this. If I were only normal again this would have never happened. I just kept saying, “I‘m sorry. I‘m sorry. I‘m sorry.” From his hands and knees while crouching in urine, he looked at me and said, “Don’t ever apologize for having MS.”

Nicole’s story struck a chord with our community, and so many people reached out to share their thoughts and stories with us. Here is what they had to say (and to read Nicole’s full article, click here.)

It’s hard to deal with bad MS days

  • Reading anything from Nicole usually makes me cry, and today is of no exception. I’m stuck in bed going on a month now with my latest “perfect storm”. Ear infections in both ears, a sinus infection, and the recent diagnosis of Mono is simply too much to handle right now. I also got the bad news that I’m too sick to fly to Florida and see my son graduate from high school. MS has taken so much from me that I don’t recognize myself anymore.
  • ‪I wish we MS people could all just get together and have a good cry sometimes.
  • I feel so out of place at times.
  • I can sadly relate to every word! I don’t remember what normal was like. I find myself often wondering what my life would have been like, if not for MS.
  • I’m saying a prayer for you. Your post made me cry, for you, for all of us. I’ve missed “normal” the past few years, but especially the past few months. It’s gotten very hard. I almost don’t remember what “normal” is, and maybe that’s a good thing.
  • I work a full time job and also have epilepsy (seizure free 10 years now). I have to do my shot on Friday night which, in turn, takes my Saturday away because I am sick. Not much of a life. Makes me so angry
  • I’m forever apologizing!
  • I feel like I have been put in a corner my family buzzing around me. I feel like a nonentity and like I shouldn’t be around
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  • Thankfully my husband and now grown children understand completely. However my mom, who is staying with me for the next six weeks, just worries and does not understand if I take a nap that lasts until the next day. She fears something is wrong with me but won’t accept it MS that is wrong with me. My husband is away on business for the next three weeks causing me to do all the tasks at home. Cooking, cleaning, shopping. Things I could always do without a thought or care and now I struggle to complete and suffer after.
  • When I got my diagnosis last summer I cried on my husband’s chest as he hugged me. I have so much guilt of putting him through this life with this and that I may have given this to my kids. I miss me and I miss our lives before this. We were long distance cyclists, runners, skiers, scuba divers, horseback riders and now…?

I no longer apologize for my MS

  • I used to apologize all the time for being unable to do things and finally I woke up! I was at a family event and my mother was pushing me to do something I was unable to do and I apologized, and then suddenly it dawned on me, and I said NO, I do NOT apologize! I can’t do this and it’s NOT my fault, whether you want to believe it or not I’m ill and you shouldn’t even ask me to do it.
  • Reading your words made me feel more normal (what’s normal anyway?), made me sympathize, made me cry for myself and for anyone else with any nasty disease to deal with BUT your words made me realize that I don’t have to be SORRY for having MS.
  • I like everything you said about not apologizing. Right now I’m in the hospital and asking so many people to help do things at my house. I HATE IT!!! Someone is going to stay there. Meanwhile I have no clue what my body is doing this time. I’m scared I won’t return to how I was last week. I want someone to be there for me like your husband. Mine left years ago because I was no fun

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  • I also have been struggling for 20+ years. I’m 47, and I feel exactly the same way every day but we are alive and on this earth if only just to comfort & support…be strong inside.
  • I have never felt the need to be normal, before my diagnosis and after. Normal is boring. I have always been different and always embraced it. As they say, “different stokes for different folks.
  • And I thought I was the only one with a husband that goes above and beyond! He’s always trying to fix things-it’s sweet, but every now and then I have to remind him I’m not fixable at the moment! He means well
  • Oh my God. This is my story as well, but it happened in the hallway on carpet. My husband didn’t bat an eye. It’s just carpet he said.
  • I don’t feel I need to apologize for not being able to do something.
  • After your initial diagnosis of MS there is no normal. I have learned to appreciate the good days and plow through the bad days. Reading what everyone writes helps me know I am not alone. God bless you all.
  • Sounds like my husband. I am totally blessed with a man who loves me despite this horrid disease
  • Please don’t be discouraged. Your life has become something different. It’s hard to imagine, but life has a strange way of presenting new realities sometimes. Your husband is an angel sent to help; I too have an angel and I am thankful every day.
  • I remember before 2006 I would go out have fun, dance. I don’t do any of that any more, especially at night. At around 3:00pm I start going down hill. If I’m up and out I try to be home around 3. Having MS truly changed my life. I have a truly wonderful caring husband who loves me unconditionally. GOD made that possible.
  • This IS normal! And it’s not like we camped out at MS headquarters to get a jump on anybody else so we could be first to get this great disease. Nobody knows why we get MS, but I’m pretty sure it’s not our fault. We do the best we can on any given day. And if wetting our pants is part of that day, then so it is. It’s messy, but how bad is that? I’m glad you have loving patient partner to help.
  • I have been re-reading this article over the last couple of weeks. It so touchingly addresses the fear and shame that underlies the diagnosis of MS I’ve been getting my head around since February. Always the strong person, the one who is leaned on, who am I if my strength is gone? Well, reading your words shifted that perspective. Your sharing of this shows your strength, the strength of your relationship and the guts to look at things in the eye. Thanks so much for sharing this.

What about you? Do you find yourself apologizing for your MS? Please share your thoughts with us!

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Sometimes Things Change…

Change is something that can be unavoidable at times and not always favored, nor asked for or necessarily welcomed. Though sometimes it can be difficult, there may be times when change is needed to make certain things more manageable. As it can be known to cause shifts in all types of roles, relationships, plans, or daily routines, adjusting to change can have impacts not just on yourself but those around you as well. One of the significant pieces needed throughout the change process is communication. Communication with family, friends, support networks, medical teams and others within your circle is important to be able to discuss what change has occurred and what can be done to accommodate it.

When dealing with something like a chronic illness, change can particularly affect family and relationship roles and dynamics. This can be difficult for all the family members involved. It can be difficult to change a routine and how things used to flow from one day to the next.  Say one family member has been known to be the ‘caregiver’ to the others, taking care of the household duties and responsibilities. What if they suddenly need to be the one being cared for due to an illness? This can create a shift in how the household duties are shared and now need to be assigned to others.

Communicating how these changes affect the relationships is important. Feeling frustrated, confused, or even angry at times is ok because things are different. The critical point is to make sure that these thoughts and feelings are expressed to ensure that all people feel they are heard and that their feelings are validated and valued. Seeking some type of family counseling supports can be beneficial to talk about change in a safe and open format—so that all of those affected can discuss it.

Has change affected any of your relationships? How did you approach this?

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