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.

Accessible Voting

You may or may not know it, but Tuesday November 4th is the day to vote. That’s right – midterm elections are here, and for many people that means they get a chance to make a decision about the makeup of Congress or governorship in their state.

But what do you do if you arrive to your designated voting site and the building isn’t accessible, or there are other problems which would cause you difficulties in casting your vote?

Go to the voting place prepared. You don’t want to be stuck – physically or metaphorically – at the voting site and not be able to cast your vote.

Here are a few tips to make sure your vote is counted:

  • Make sure you are registered to vote. There may be a specific time frame you must register in advance of a vote, so if you miss out this year, go ahead and register so you can vote in future elections.
  • If you are not sure, confirm your voting location with your city or county government office. You can also call ahead to ask information about where to park, whether there is accessible transportation, etc.
  • Get the phone number for your State Office of Protection and Advocacy and bring it with you when you vote. If you run into any barriers (lack of accessible transportation, physical accessibility of the building, problems accessing voting equipment, or understanding your rights), this is the correct office to advise you of your rights under the ADA and make sure you get a chance to vote.

Why go through the hassle of going to the voting booth at all?

  • Many states allow individuals to register as an absentee voter. Once you get registered, you can remotely cast your vote! For next time, plan ahead and register to absentee vote.
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Feeling SAD: Seasonal Affective Disorder

rsz_young_woman_cryingIt is commonly known that MS can impact mood and can cause an increased risk for developing depression and anxiety which MSAA detailed in the Winter/Spring 2014 issue of The Motivator. However, you may be unfamiliar with another condition – Seasonal Affective Disorder (SAD) – which may be something to pay attention to as the seasons change.

SAD is a type of depression which is hallmarked by its “seasonality” generally beginning in the fall and lasting through the winter months. SAD typically tends to creep up as the daylight hours get shorter and the weather gets cooler and the impacts on mood may become more severe as the season goes on.  Like other forms of depression, individuals who experience SAD may experience low energy (fatigue), may lose enjoyment in activities they once enjoyed, may experience changes in eating or sleeping habits, may have persistent sad or depressed thoughts, and may even think of engaging in self-harm. As with other forms of depression, individuals with SAD may benefit from the use of medications and/or talk therapy to help address this issue. One major difference with teasing out SAD from other forms of depression is that individuals with SAD may also benefit from using “phototherapy” or specialized light therapy; a person may even be assigned a specific amount time in their day to sit under the specialized light or lamp to help improve their symptoms.

If you have noticed that the fall and winter seasons tend to impact your mood, or if you have noticed a lower overall mood, please discuss the issue with your treating physician…sometimes just shedding some “light” on a situation can make a world of difference.

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Measuring Success

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Sometimes life can be tough, and we may have to hear feedback that we don’t want to receive or work through challenging situations we don’t want to encounter. Like when the school says that your child is just not able to do what other kids can, or when your boss says that you are not keeping up to the standards the workplace requires, and if something doesn’t change soon, they’re going to have to let you go.

It is never easy or pleasant to deal with times where your “actions” or a loved one’s “actions“ are not “measuring up” to the expectations of what is required in a situation. This may occur when a real issue arises, i.e. if you are a nurse you need to have the ability to properly measure medications, and not doing this in a proper way can lead to major harm, or if your child needs a specific educational plan of action and you don’t get them help, it could be a big disservice.

Alternately, these types of situations can occur when the other person has a different “measuring stick” than you do, like if your old boss understood that you needed to take an afternoon break to be recharged and on your game for the rest of the day, but a new boss is inflexible and slams your work performance for taking a break. This type of situation can lead to major frustration and anger on both sides of the coin. The new boss has a different measurement they are using for success.

So, when it is not just a situation you have to own up to or seek support to overcome, how do you get the other party who is using a different measuring stick to see reason? First, check your own thought process by bouncing the situation off of a trusted friend, family member, or co-worker. Do they agree that you are being reasonable, or do they bring up good counterpoints for you to consider? Second, check for any formal supports or avenues for recourse. This might include documenting this situation and your concerns, or seeking out formal supports. In this workplace scenario, it might include talking with HR and asking for a formal workplace accommodation. It may also include you documenting your work actions more carefully or capturing feedback from clients or co-workers about your work to allay concerns presented by the new boss.

Not every difficult situation can be resolved, especially if neither person can compromise or shift how they are measuring success. You can do your part by being proactive in trying to see how the other person is viewing the situation, and trying to present your own views and insights in a clear and rational manner. Sometimes even simply acknowledging that you are looking at the situation from two different vantage points can allow enough of a bridge to achieve some type of workable solution.

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Being Careful to a Fault

There is a very common saying – “you can never be too careful” – which indicates that being cautious and careful in our actions is a good way to avoid all kinds of negative outcomes or disruptions in our lives. But there is such a thing as being too careful.

By cyclonebill (Iskaffe) [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia CommonsI’m reminded of when trying to pour something how you typically line it up and pour carefully so as not to spill any liquid. Sometimes the angles or shapes of the object you are pouring will not match up in the right way, and if you pour too slowly some liquid can spill out the side. Alternately, if you are pouring slowly and carefully but the cup is heavy, your hand might begin to tremble or shake, causing you to spill. Sometimes you’ve just got to go for it, and take the risk of making a huge mess with the fast pour.

The same things happen in life; sometimes you decide you just need to make a change and go after it. It may not always work out, but life has its own ups and downs, and carefully laid plans don’t always work out either. If there is something you have been wanting or waiting to do but are too risk adverse, remember that there are times to try and line things up carefully and go through all the actions to obtain an outcome in a planned out way, and sometimes you just have to take charge and make it happen whenever that opportunity arises.

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Lessons from “Back to School”

For many families, September means back to school. Maybe you sent your child off for a first day of school (elementary, middle or high school each are a special moment), or maybe you are headed off to a class yourself as a college student, graduate student, teacher or professor. If none of these apply to you, then you at least see the back to school supplies and sales popping up everywhere as people make this transition.

If you are not a student or teacher, then once you leave school it can be easy to forget what a time of optimism and hope abounds at the beginning of the new school year. The hope to make new friends, achieve new academic goals, make the team, etc. is probably on the mind of all of those youngsters. Adult students may be invigorated by the goal of obtaining a successful career or the relief of having only one more year to go to finish toward a hard earned degree.

If you are not swept up in the “new year, new you” madness, take a moment. Remember that it doesn’t take classes to help you set goals or achieve outcomes. You don’t have to be in school to make new friends or have a plan of action. Sometimes, a spark of hope and optimism can help you to dream that big dream before your “first day,” and the hard work throughout the year is what helps you achieve your outcome.

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It’s all relative.

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Sometimes it may seem like things are spiraling. Maybe the bills are piling up, the stress level in managing home life or work is rising, and you are worried that you are headed for an MS Relapse if you keep going at your current pace. When things feel like they are outside of your control, it is easy to “cycle”  or consistently think of the negative aspects of what is going on. The whirlwind of negativity can affect not only your mood and health, but also your relationships and ability to accurately read cues from others and be empathetic.

When your co-worker is acting totally checked out and you are annoyed that she hasn’t helped you with a joint project, you might think she is acting uncaring, but maybe she didn’t tell you her brother is very sick in the hospital. When the dentist office calls for the third time to cancel your appointment and you just feel like screaming at the scheduler, you may not know that she is stressed out because other office staff keep flaking out on their scheduled appointments and making her job harder.

Yes, it is okay to have a bad day or a bad week. It is okay to not put on a “fake it ’till you make it” smile when you feel like nobody understands what you are dealing with, but when you start to get caught up in the negativity tornado and are on the borderline of snapping, remember that everyone is dealing with something. Yes, some of those “somethings” are more manageable than others, but they all impact and make a difference in the lives of the people living them. Focusing on the idea that everyone is living their own journey with different successes and challenges can help us to maintain balance; we are not alone for the ride. When things start to spiral, try to remember that everything is relative.

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Adding Up MS: Hey, What Does That Number Mean?

Two doctors looking at brain MRI

Did you know that estimates indicate that as many as 2.5 million individuals across the world may be living with MS currently? MS is generally referenced as a “rare” disease, but that number doesn’t seem small to me!

Where you are living in the world will determine a number of factors, including what diagnostic tools are available to accurately evaluate and diagnose a person with MS. After all, those figures might be harder to estimate in countries that do not have trained neurologists, MRI equipment, and other supportive medical testing. If people are not diagnosed or seeking medical care, then they are unlikely to be “counted” or projected into estimates.

Another major challenge is that many countries – including the United States – do not have an official MS Registry, which is a legislated or mandatory accounting of each person diagnosed with a particular condition within a particular country (or other geographic area such as a state). Without a registry, scientists and epidemiologists must rely on other factors to try and “guestimate” how many people in any particular area may be diagnosed with MS. These types of disease registries do exist in the United States for other conditions, such as ALS (Lou Gehrig’s Disease).

Countries such as Denmark do maintain an MS registry. Since the 1950’s Denmark has collected specific information on anyone diagnosed with MS. This type of registry has provided Danish researchers and scientists of other countries valuable information for clinical research and prospective studies. Hopefully someday the United States legislature may agree that a national MS registry could bring many benefits to individuals living with MS.

So, when you see that 2.5 million number, think of all the people who don’t see a doctor because they can’t access one or cannot afford medical care. Think of all the people who are diagnosed with something else because their physicians don’t have appropriate diagnostic equipment. Yes, researchers have tried to extrapolate an “accurate” number, but who is being left out?

When I hear that figure, I think, what does that number really mean, and how does that number impact the MS community? Does the lack of a registry leave researchers without critical information which could be collected to better understand the MS process and who is diagnosed with MS? Is less funding spent on MS research, including causes, treatment options, and individual quality of life and well-being because MS is perceived as “rare”? These are questions that cannot be answered because the true number of people living with MS is unknown, but it is still important to pose the questions.

For more information regarding projected figures of individuals living with MS around the world see the Atlas of MS 2013.

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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

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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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