About mweisser

I am the Manager of Client Services at MSAA and hold a Masters Degree in Social Work from Georgia State University. I currently have a LSW licensure in New Jersey and Pennsylvania. I am the mother of two beautiful children and also the owner of a tortoiseshell cat and a cocker spaniel.

Getting Graphic When You Have Multiple Sclerosis

Young couple looking distressed or angry

Sometimes when you try to communicate with others, your point may be misconstrued, or something may be lost in translation, or you feel that no matter what you are saying the other person just doesn’t “get it.”

In my role here at MSAA, I have heard from many people who are frustrated or disappointed that someone close to them, be it a family member, a friend, or even a close co-worker (someone who they know cares about them), just doesn’t “get” MS. They may not understand the daily or even hourly ups and downs of MS, or the invisible or hidden symptoms you are trying your utmost to manage, or maybe it’s just an expectation that everything should be the same as before your diagnosis, when for you it feels like the whole world has shifted.

No one wants to feel that our friends, family, and supporters are clueless, unhelpful, or uncaring…after all you KNOW they care about you, and that’s why you include them and want them to be a part of your life, and that’s why it feels so wrong when you can’t express your needs or they don’t seem to “get” what it is you are dealing with, or struggling with, or needing.

When words aren’t enough, get graphic…and not in the style of an R-rated movie, but instead embracing that sometimes a photograph, picture, or artwork can help support what you are saying. Even a visualization can sometimes be helpful, for example, “Sarah, I know that you are trying to help, but when you say that it makes me feel like you’re asking me to put a bag with a smiley face on my head…can you picture that? ” If you picture it, a person with a smiley face bag is being asked to hide their true emotions, or even if they express those emotions they cannot be seen by others. Sarah may picture that bag the next time she wants you to turn your frown upside down and be more empathetic to your needs.

So, the next time you feel like words are just not enough: snap a photo of how you are feeling, draw a picture of your thoughts, or give a visual depiction of your concerns. You may find that a visual display is sometimes the bridge that is needed to help your support person really “get it.”

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The Time is Ripe…Despite Multiple Sclerosis

Banana_in_hand

If you like to eat bananas, then you know that there are only a few days that they are in their prime. You go from the green tough phase, to one or two days of yellow perfection, and then the brown spots, bruises, and too sweet taste takes over.

If you eat avocados, then you know that when you buy them you have to feel them each day until they get just soft enough, and if you buy them soft, you must consume that day or miss your window of opportunity. In fact, sometimes it may seem like your avocado only has a few hour span where it is perfect for consumption.

So, what do bananas and avocados have to do with anything (aside from eating them, since they can be delicious and healthy snacks…just not served together)?

There are things in life you may want to do, but find you don’t have the time and/or the planning just never seems to work out. You know, like when you belong to a gym, but every time your schedule has an opening you are too fatigued to go. What about that painting class you wanted to take, but it is only held on a weeknight. which is really inconvenient? Sometimes you may be dealing with a banana situation where you only have one or two days which might work or an avocado situation where you feel you have mere hours to make something happen.

Yes, life is complicated and busy, and can be extremely overwhelming.  MS often throws a wrench into all of those carefully laid plans, but if there are things that you want to do: meet up with your friends, take that class, and get to the gym. Despite MS, the time is ripe to take charge and enjoy all of those things you want to do with your life. Sometimes it may take careful planning, re-prioritizing, and positive self-talk to get you there, but it’s worth trying. There may be cancelled appointments and days when you need to take a nap instead, but don’t let those days take over for planning for every other day.

After all, you probably still buy bananas even though you know you might not get to eat each one before it turns brown, and if you aren’t already acquainted, please meet your new friend guacamole.

 

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Expediting Travel When You Have Multiple Sclerosis

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If you are traveling this summer, you may need to do a little extra planning to ensure you have the best experience possible on your trip.

Groups like Able to Travel sponsored by the United Spinal Association act as travel agents for accessible vacation planning and accessible guided tours and cruises. You can also do it yourself by calling ahead to hotels, restaurants, and venues to ensure accessibility of rooms, bathrooms, and fun activities.

If you are using an airport, you can actually call the TSA 72 hours in advance of your trip to arrange for a quick experience getting through security checkpoints (http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions). Additionally, many airlines offer assistive services for boarding and navigating the airport, so be sure to make the airline and flight attendants aware of any needs you may have in advance of your flight.

There are also helpful websites like Flying with Disability which may offer helpful tips and suggesting for easing travel burdens.

Remember to do your homework before paying for services or using a company you are unfamiliar with to plan your trip or travel with, and most importantly – enjoy your trip!

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Give Yourself Time to Plan for Travel

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When planning a summer vacation (or any trip for that matter) a great deal of detail is required to figure out the best place to stay, the quickest and easiest way to travel, and what activities you want to do. The list goes on and on.

When you also need to plan for accessibility or special accommodations, it adds extra steps to the traveling process. Sometimes you may even want to throw in the towel if planning the vacation becomes so hectic or frustrating that it causes increased stress or anxiety.

Depending upon your needs, creating a plan of action or checklist of sorts may be a good first step in alleviating frustrations. Here are a few ideas to get you started on your list:

1) What places might be fun to visit/where do I want to go?

2) How much do I have budgeted to spend?

3) Will I need to fly, drive, or take a train/ bus (and what are the benefits and challenges for me getting on a plane, bus, etc.)?

4) Do I want to go as part of a guided tour with a set itinerary and is there an accessible travel option?

5) Where will I stay, and do I need to call ahead to confirm accessible accommodations?

Once you begin to narrow down your choices of budget, location, and means of travel, you can then begin to focus on planning for specific accommodations (picking the seat closest to the bathroom or coordinating with your flight attendant to offer wheelchair assistance) and the fun activities you want to participate in on your trip.

Wherever you go, even if it is a day trip, try to have some fun this summer!

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MSAA Attends 2014 Consortium of Multiple Sclerosis Centers

Several members of the MSAA team traveled down to Dallas, Texas last week for the 2014 meeting of the Consortium of MS Centers (CMSC). The meeting had approximately 2,000 registered participants (the largest CMSC ever) ranging from doctors, nurses and researchers, to nonprofit organizations like MSAA. CMSC Booth

MSAA set up our booth and reached out to attendees to try and ensure that providers are aware of our services and can refer to them as needed.

Some of the partners MSAA works with were also in attendance, including the vendors who work with MSAA on our Cooling program:

Steele Booth

The annual CMSC meeting is one of the best opportunities for education, sharing, and collaboration for professionals who serve the MS community. MSAA staff attended a number of helpful classes, lectures, and interactive sessions on everything from research and study updates related to causes and treatments to efforts to improve quality of life and comprehensive MS care.

Stay tuned to MSAA for more information and knowledge learned at the 2014 CMSC.

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You Can Contribute to Finding the Cure for Multiple Sclerosis:

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If you are looking for a way to get involved or change the future of MS research, the Accelerated Cure Project and NARCOMS (North American Research Committee on Multiple Sclerosis) are great places to get started!

I want to bring attention to these two organizations, which you may not be familiar with and encourage you to look into their websites if you are interested in learning more about what they do.

The Accelerated Cure Project maintains an MS-research repository and also will be launching an online patient powered research effort. They focus on making sure researchers have access to the biospecimens (for example blood, or CSF fluid) they need to conduct research, and then aggregate the results of all of the studies performed using these research samples.The sharing of research information and results helps to expedite the MS research process.

NARCOMS is a voluntary MS registry with over 37,000 registrants currently. They support the increase in collective knowledge of the MS experience through surveys and other activities in hopes that the collective knowledge gained about the MS experience will be helpful to researchers and will also promote a greater understanding of MS.

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Which half do you see?

rsz_middle-aged_caucasion_woman_thinking_and_reading_a_paperOptimism – the typical description is if you see the glass half full, you are an optimist and if you see the glass half empty, you are a pessimist.  It can be very empowering and reassuring to view the glass as half full. In most situations, having a positive outlook can help to impact the situation in a beneficial way.

To get more theoretical though, sometimes it may be helpful to remember it is just a glass with water and analyzing our perceptions and personal filters can help determine how they impact our outlook on life. In other words, the facts are the facts and the way we perceive a situation and our resulting emotions are usually based on personal filters of what we believe is good/bad, moral/immoral, happy/sad, etc.

Take for example when you meet a new boyfriend, people may say that you look at him “with rose-colored glasses,” meaning you cannot yet see or choose to ignore his apparent faults because you are so newly engaged in the love feeling that you are ready to brush those other concerns aside. At the end of the day, when your rose-colored filter is removed, you may be willing to deal with the shortcomings or challenges involved with that relationship, or you may be ready to hit the road running in a different direction.

In that scenario, if a person was able to view the actual situation and set aside their personal filter, they might know earlier on in the relationship that their partner is not a good match. Conversely, they might set aside someone they deem too difficult or different when if they had used a rose-colored filter, they may have given the relationship a chance and later found out that their difference could be compromised or overcome.

So back to the glass of water…ultimately, your mind may jump to one assessment or another (half-full/half-empty). While there may be benefits of viewing things one way or detriments to viewing it in another way, sometimes, especially in challenging situations, being more analytic and viewing the glass as a glass may help you to ascertain what personal filters or perceptions may be coloring your thoughts, emotions, and actions. When the glass always looks half-empty, it may be a good reminder to keep analyzing the glass and your own perceptions.

 

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Reducing Internal Stressors and the “and, AND, AND” Mentality

Closeup portrait of cute young business woman

Stress is something that everyone confronts in their lives. Stress broadly falls into two categories – external stressors where another person or entity is pushing you harder and asking for more, more, more (more of your time, more of energy both physical and mental, and more than you can handle). I think everyone is familiar with the external stressors- a school deadline, a boss that keeps piling more on your plate, appointments and activities you need to get to…these can all add external stress.

The other lesser acknowledged form of stress stems from internal pressures. Internal stress arises when you place restrictions, parameters, and deadlines on yourself, where you strive harder and work longer and try to be “perfect” or to be everything you think you can and should be for everyone and more.

I’ll give you an example. The schedule says you work from 8-5 and get an hour for lunch, that is the schedule you are paid for BUT the phone is ringing, and a new project is assigned, and the work is piling up (external stressors) so your internal response is to come in a little early and only take 20 minutes for your lunch breaks and maybe on some days you stay a little later too. Before you know it you are working 5-10 additional hours each week. Sure you are getting the work done but you aren’t being compensated extra, and everyone else is taking their lunch breaks.

Sometimes people use internal stressors because they are motivated by something specific (i.e. if my boss sees me accomplishing so much maybe I can earn the promotion, and some day make it to the corner office) or maybe you love your job and are motivated by what you think you can accomplish (i.e. I’m saving the world one day and one life at a time, GO ME!) but whatever the reason at some point those additional self-imposed stressors will catch up to you. And frankly at the end of the day while your boss might acknowledge all of your hard work it is just as likely that they will raise their expectations of you, so that without a big promotion you are stuck doing all the extra work and if you try to cut back on the “extras” your boss may wonder why you can’t accomplish what you used to!

These internal stressors don’t just apply to the workplace, they may cause anxiety over what you need to do-“I’ve got to clean the house before Janice comes over to visit, but when will I have the time and energy.” If Janice is truly a friend she will understand that life got in the way and that your house can’t always be impeccable. Don’t worry, Janice already knows that you are human.

You may be asking why is it important to acknowledge when a stressor is internal or self-imposed and try to reduce those actions or thought patterns. Stress is well known to impact health. Stress has been attributed to developing or exacerbating changes in mood such as increasing worry/anxiety, but stress has also been linked to physical health including affects to sleep, cognition, and increasing levels of burnout/fatigue. On the more severe end of the spectrum, stress has been linked to heart attacks, ulcers, and has also been correlated with MS Relapses among other health issues. So, while you may not be able to stop your boss from dumping 500 projects on your desk or keep your house in a perpetually spotless state, you can put in place an internal protection system: Remind yourself that there will always be work for tomorrow no matter how much work you do today, and that friends, family, and neighbors don’t expect you to be “perfect.” Finally, let yourself know that it is okay to ask for help when you need it. Don’t be your own worst enemy, prioritize your health and try your best to stop or reduce that internal voice saying and, AND, AND.

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Multiple Sclerosis Awareness (when you might not want people to be aware)…

Diagnosis Awareness Blog Post Image

March is MS Awareness Month. As an advocacy group, you will hear MSAA discuss our available resources, and encourage you to get out and be active about raising awareness for MS and supporting programs which benefit individuals with MS. We will promote and support expanding knowledge and information about MS. With all of that going on, it might feel like you need to wave a flag shouting, “HERE I AM. I HAVE MS!!!”

As the Manager of Client Services at MSAA, I wanted to acknowledge that there are times when you (or your friend or family member) may not want others to know about a diagnosis. While you may want to be an advocate to spread awareness and information to help people understand about MS, you may not want certain people (i.e. an employer, a new boyfriend, or a casual acquaintance) to know you or a loved one has MS.

There is nothing secretive about a diagnosis, but it is your (or your loved one’s) own personal health information. While some people might share that they had a heart attack or stroke with anyone they meet, others might feel medical information is no one else’s business and only talk about it with a doctor or close family member.

So, if you want to be an advocate but not shout a diagnosis from the rooftops, what can you do?

Infographic for blog

On social media sites:

Think before you post. Are you comfortable with everyone seeing your update or picture? If not, make sure to check your privacy settings before sharing personal (health-related) information so that only people you want to learn about your private information, such as close family or friends, can see your updates and pictures.

In person:

If you want to talk about MS in the community, know that not everyone who spreads information and encourages activity for a cause will be personally affected by it. If you don’t feel comfortable sharing your diagnosis, make it general: “ I’m helping out with a cause… Can you help too?” or: “There is a charity I support, and I wanted you to know about them and what they do” are generic ways to introduce information about “your cause,” even if you don’t want anyone to know it is personal.

In many of these situations, there may be a future point in time where you might want to share a diagnosis. On the job, you may decide to ask for a reasonable accommodation and share a diagnosis when needed. When your boyfriend goes from being casual to serious, you might feel comfortable disclosing. Likewise, if a casual acquaintance becomes a good friend, you may want to share. If not, there is no pressure. You can still be an advocate for MS without disclosing a diagnosis.

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Wait a second, did you get that?

Closeup portrait of cute young business woman

Being able to effectively communicate with others is one of the most basic human needs and functions. Babies and young children cry or throw tantrums when they don’t get what they want or need because they haven’t discovered any better ways to express their concerns or desires. They need to be heard, but they can’t express their concerns directly so they resort to raw emotion and yelling to get their needs met.

As we grow older, we are taught that there is a time and place for everything and that generally when speaking in public (school, work, etc.), you need to do your best to control your emotions and try to calmly verbally address your needs or concerns. For example, in a business meeting while you might feel like rolling your eyes at an inane comment, or may even feel like yelling when your point hasn’t been heard or addressed after asking for the 100th time, responding in either of those ways in a work setting is likely to get you a reprimand at best and unlikely to get you what you really wanted (for example a shorter meeting with highlighted objectives, or a specific problem or concern to be addressed).

These communication issues don’t only happen in the workplace setting as you might have times where you feel like your doctor is just not hearing what you are saying or a relative is being insensitive or un-relatable. When you end up in these frustrating situations, you might have the impulse to cry or yell, and sometimes that might supersede your public decorum, but these also may be good times to evaluate your situation and how you could better try to communicate your need.

So how do you take a step back when you need to make sure something is heard?

You may need to take five minutes before speaking to give yourself time to process a more tactful response. You might pretend you are re-explaining the situation to a totally
Older male doctor with laptop talking to middle-age male patientdifferent person. You may also ask the other person to repeat back to you your concern in their own words, so you can make sure they “got it.”

Feeling misunderstood or like no one is listening can heighten your anxiety, stress, and frustration around a situation. Others can contribute to misunderstandings and miscommunications if they are not being active listeners and receptive participants in the conversation, but try to do your part. Try and emote effective communication. If the other party really is not listening, or you can’t overcome personal barriers, you can try to remediate the situation by going to others with your concerns (in the worst case scenario finding a new doctor or changing jobs…. although I’m told you can’t get a new family).

Can you share your tips for how to communicate better in difficult situations?

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