About Angel

I am a Client Services Specialist here at MSAA. I hold both a Bachelor's and Master's Degree in Counseling from schools outside the Philadelphia area. I love reading, movies, going to concerts and traveling. Favorite place I've been so far---Disney World!

MS Symptom Changes

In keeping with the theme of ‘change’ during this month’s MS Conversations, I wanted to talk about MS symptoms and how they can differ for those diagnosed. MS often comes with its’ own agenda and unpredictable course for those affected, often making it difficult to anticipate what symptoms can arise and how they can vary from day to day. And because each person’s experience differs greatly with MS, it’s challenging to try and compare situations in order to come up with guide points and specifics to learn from throughout the disease. The type of symptoms, their range of severity, and their disappearing/reappearing act can all change according to how one’s MS affects them, which further adds to the list of unattractive traits held by MS.

However, because people with MS have a great voice and have been consistent with reporting their symptoms and experiences with the disease, doctors and researchers have an abundance of information to work with for developing more symptom management therapies and treatments that could potentially help reduce these issues. There are several techniques used to treat MS symptoms, but it may take some trial and error along with continued follow-up with a doctor to find what works best and most effectively. While no two MS cases look exactly alike, each individual’s condition brings with it more power and knowledge because it’s so unique, and therefore helps to contribute to the understanding of this ever-changing landscape.

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Who Likes Change?

So honestly I’ve never been one to ever really like change. Even when I was younger I don’t think I was as resilient as other kids around me when it came to change because I always seemed to struggle with it. Even as I continue into adulthood change can still create feelings of anxiety, confusion and discomfort at times. And this can occur with good change too; I think it’s the concept of something being different than it was before that I have trouble accepting, especially when it’s a change that I have no say over. Now don’t get me wrong, certain types of changes can be good, when they produce positive and beneficial differences in life and particular circumstances. But in general I think we struggle with change because it has great influence over our control and expectations. It’s difficult to like change if it’s something you didn’t ask for or that was necessarily warranted, especially if its arrival produces unwelcome challenges. So what do you do when change comes along?

Everyone’s coping mechanisms are different when it comes to dealing with change. Some individuals try to meet change head-on and seek out ways to adjust and adapt, while others try to fight change and work hard to deny it and refuse acceptance of it. Some look to others for support during times of change, whereas other individuals prefer to be alone to cope with it. What’s important to know is that everyone has experienced some form of change in their lives, and while none of the changes may look exactly the same, the ways in which people try to cope with it can look very similar. There are no absolutes when it comes to facing change—no specific right or wrong way to work it out. But you have more control than you think in these situations; you’re the one who gets to decide how you want to approach change in those moments and how much influence it can truly have.

How do you cope with change?

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(Last Minute) Summer Fun

As we continue to pass through the summer months and find ourselves looking towards a change of season (hopefully soon!), there’s still some time for fun to be had during the remainder of the summer. At times it can be difficult to try to make plans or schedule activities if the uninvited MS decides to rear its head and join in. But there are some last minute ways to try and enjoy the rest of the season, without having to make elaborate plans that MS will try to outdo.

There are times when heat-excessive summer days call for indoor activities, so why not have a game day/night? Getting back to a time where playing board games and cards was all the rage can be fun and nostalgic, and a good way to find some last minute amusement with friends or family. And keeping with the indoor theme, how about a movie night? Gathering together to watch a good flick, even if coordinated last minute, can be relaxing and entertaining. Orchestrating a last minute trip to the movies or visiting a museum or aquarium can also be some fun activities that may not require excessive planning but an opportunity to enjoy events of the season.

Check with community offices and message boards in your area to find some local events being held during the rest of the summer. Concerts, festivals, shows and exhibitions are just some of the local activities your community may offer that you can take advantage of last minute. Sometimes trying to take part in an activity that’s more spur of the moment and last minute can work to your benefit, especially if it catches MS off guard and doesn’t give it the opportunity to invite itself!

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Hot, Hot, Hot

Being halfway through July we can surely say the summer season is in full swing, and for those with MS it’s no secret that the heat and humidity of the season can be a real downer at times. MS heat sensitivity can result in aggravated or worsened MS symptoms and help to contribute to an overall disliking of the summer months. This can be disheartening because many individuals enjoy this time of year, with outdoor activities and events that beckon and get-togethers that warrant much time outside—shame on MS for trying to corrupt this. But there are things that can be done to try and overcome the cruel intentions MS may have during this time of year, and some may already find themselves doing them.

  • It might be tricky at times, but when you can, get outdoors when the temperature is more manageable. Going outside earlier or later in the day/night can help you avoid the hotter temps throughout the day.
  • When possible, engage in activities that are in cooler/air conditioned places. If you have to be outside, try to take breaks in shaded areas or indoors when you can.
  • Wear cooling products like neck wraps or vests that can help to reduce heat sensitivity issues and keep your body temperature down.
  • If you’re not in the mood to travel or go out due to the heat, have friends or family come to you for a visit.
  • Explain MS and heat sensitivity issues to those close to you so they have an understanding of what you’re experiencing and why there may be some limitations during this time of year.
  • Try to stay actively engaged in the activities and events you enjoy during these summer months. Adjusting the timing or setting of your interests or finding new things to participate in can help to combat the heat factors.

There’s a line you can draw with MS when it comes to your likes and interests. If you enjoy the summer season take part in things you’re able to or try new experiences, and let MS sizzle by itself under the summer sun.

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Social Benefits

Sometimes it’s really difficult to maintain relationships and stay social with others around you. This can be due to a number of reasons and factors. Life in general creates enough hurdles and curveballs that prevent us from staying engaged and interacting with others, at times it’s simply because things get in the way. Having a chronic illness like MS can certainly make staying connected even more challenging as the disease comes with its own agenda and unpredictability. But it’s important to try to stay socially linked to people and support networks around you, because it can be beneficial in more ways than one.

It’s understandable if there are times when you don’t want to reach out to others and engage in social interactions, it happens to everyone. There are moments where we just want to be alone and process things on our own. However, making ties and maintaining relationships can create added benefits to one’s life. Positive connections can help to boost your mood and attitude, especially when surrounding yourself with encouraging and optimistic people. Staying social can create a sense of cohesiveness and camaraderie with others. These bonds may form even stronger if the same types of values, goals and experiences are shared—or if they are not, there is infinite respect in the relationship to appreciate these differences.

Having a chronic illness can sometimes cause feelings of isolation and separation for those affected—a feeling of being alone in what’s happening because others do not know or understand the condition. That’s when connecting to others who have similar backgrounds or experiences can help. Sharing the same types of feelings, thoughts and hopes with others increases a sense of belonging and validation in knowing you’re not alone in your experiences. Social engagement can help decrease stress levels and keep your mind active which can also aid in improving your overall health. And it doesn’t matter what type of social activity you’re engaged in; whether it’s taking a walk or ride, going out to an event, talking on the phone or attending a group, what matters is the connections you’re making and the positive benefits they have on your well-being.

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What Should I Say?

Someone you know has just been diagnosed with multiple sclerosis. You’re not alone if you are one of the many people that aren’t sure how to approach this situation. ‘What should I say?’ Or ‘what can I do?’ are questions often asked and contemplated by those surrounding an individual who has been diagnosed. Unfortunately there is no specific script or dialogue mapped out that can guide this interaction, however, there are some things to consider when communicating about MS. Being mindful, respectful, and considerate of others’ feelings and sensitive to the circumstances are good starting points in this situation.

If you’re not familiar with MS and do not understand the disease, this is ok. MS can be a challenging condition to absorb information about and there is a significant learning curve when it comes to educating oneself about the disease. It’s not something to be learned overnight, so knowing this going into the situation can help reduce stress and expectations. Telling the other person you’re not sure what MS is but showing interest in how they’re feeling and learning about the disease can open this communication exchange. Sometimes just saying ‘I’m here for you, and if you want to talk I’m happy to listen’ can make the other person feel comforted knowing they have support if they need to reach out.

Many people may feel pressured to not say the ‘wrong thing’ or worry if they don’t react in a certain way when hearing of an MS diagnosis. This can sometimes circle back to your relationship with the individual who has been diagnosed and how you’ve interacted and communicated. You may already have an idea of what would be helpful for them to hear or to not hear in the situation. Your relationship with the person has not changed, so maintaining a balance of support and a matching bond as before can help steady this novel circumstance. Validating their feelings and the symptoms they talk about experiencing can help guide the conversation; be sure to listen and engage with them so they know they’re being heard.

Often the person diagnosed with MS may need time to process the news of a diagnosis, and this may lead to them subsequently distancing themselves or refusing help from those around them. You can’t force someone to ask for or accept help, or push them into disclosing their feelings. So in these instances telling them ‘I’m here if you need me,’ and ‘I care about you’ can be a support in itself—and knowing they have supports in place when needed can be reassuring to those diagnosed.

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Hello there, Earth!

Today individuals around the world will celebrate Earth Day, an annual event known to promote environmental awareness and energy conservation. Sometimes it’s easy to take advantage of our planet and all the wonderfulness it has to offer. This is to no fault of our own—life gets busy and chaotic, and our day to day routines get in the way of appreciating the world around us. But if we consciously make the decision to stop just for a moment to take a look around at the beauty of the Earth, it will no doubt create a moment where being present and mindful of our surroundings will ignite this newfound appreciation and gratitude for the world in which we live. And there are some things we can do every day to try and preserve the splendor of the planet and its nature.

Earth-Day-2016-Poster-Earth-Day-Network

  • Recycle, recycle, and recycle!
  • Conserve energy by turning off lights and running water when not in use
  • Opt for using another mode of transportation instead of driving if able
  • Plant or garden to bring more life to the Earth
  • Raise awareness in your community for environmental protection causes

 

So this Earth Day, take a moment to join a movement, a cause, a venture to help care for our planet and all its beauty and glory. Our Earth is precious and allows us to do so much; shouldn’t we help take care of it in return?

 

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This is Spring? (When expectations don’t quite match realities)

So the spring equinox supposedly arrived for us living in the northern hemisphere on March 20th this year, marking it as the first official day of ‘spring.’ However, for those of us living on the east coast, it hasn’t quite felt like spring this past week. When it comes to weather changes we can usually deal with the clichéd ‘April showers bring May flowers’ notions, and even March’s infamous reputation that it ‘comes in like a lion and out like a lamb,’ because we’re hopeful that the next beloved season is right around the corner.  But with temperatures in the 40’s and flurries impeding on morning commutes this past week, it appears that spring has decided to abdicate its duties (at least for the time being). Not quite what we expected so far, right?

Ok, now the weather has been increasingly unpredictable over the years due to a number of factors and elements so it’s not a total surprise that our desired seasons don’t occur quite how we hope. But it further highlights this notion that sometimes what we expect to happen doesn’t quite match reality; and this becomes the continued barrier we encounter and struggle with through all phases of life. We know that life itself and the day to day can be very erratic—with varying degrees of triumphs or defeats, but when additional factors are added to the mix it can be even more challenging to match expectations to reality. No one holds the expectation that they will become ill or be diagnosed with a chronic illness, so again reality doesn’t match up at times.

When expectations aren’t met and life continues to generate its own agenda-not taking into account how you feel about it, this can be extremely frustrating and overwhelming. So when this happens, what can you do? How can adjustments be made or things tweaked so you’re not getting constantly knocked down or totally thrown off course when life throws a wrench in your plan? You can PUSH BACK. Now this can be very much easier said than done sometimes, but how else can you let life know that you’re still very much a part of it even though it may not be what you expected? And this doesn’t have to look a certain way. Each person has their own unique personality and attitudes and the ability to use and embellish character strengths to the exponential degree. You demonstrate resilience and take control over how you react to changes you encounter. You work on showing life how its changes will work around you and your needs, not the other way around.

Again, this is not an easy thing to do. It can be devastating when life doesn’t work out the way we hoped and expected it to. But this is where there can be strength in numbers-where people can reach out to others for support and find hope. Learning what others have done to overcome a situation, where they’ve found their strengths and how they’ve pushed forward can be incredible assets to embrace. Everyone has experienced moments where reality doesn’t happen like we expected, but we find ourselves together in that, and once again surrounded by potential hope.

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The Unspoken Symptoms

As we discuss various MS symptom challenges during this month’s MS Conversations blog, we wanted to talk about some symptoms that may be more challenging to disclose or discuss with others at times. This week we touched on the condition of PBA and its difficulties, but there are also issues with bladder, bowels, and sexual function that are some of the other more private, less disclosed symptoms experienced by those with MS. These symptoms can feel a bit embarrassing to talk about or discuss with others at times, and for this reason are sometimes the ‘silent’ symptoms one shies away from even discussing with his/her doctor. Even though silent, these symptom challenges can be loud in their presence for individuals.

Symptom issues with bladder can vary in MS. Because MS affects the nerve responses sent to the bladder that control sensations and contractions, symptom issues can include difficulties with emptying and storing, or both. There are several different medication treatments along with diet and fluid management planning that can assist with these symptoms. If you experience these issues, talking to your doctor about your symptoms can help to initiate some type of treatment plan to address these issues and help manage them. If your family and friends are not aware of this symptom and its relation to MS, this can possibly be an opportunity for them to learn more about the disease and its symptoms so they have a better understanding of what you’re experiencing. But remember, it is your body and the information you wish to disclose or not is your decision. However, when others are more educated and aware it helps to keep lines of communication open so that if needed, it may be easier to discuss the issues you’re facing with additional support.

Issues with bowel function in MS can be due to various causes as well, including lesion effects in the nervous system and medication side effects. Constipation and diarrhea are symptoms that can occur and be influenced by diet and medication practices. Discussing these symptoms with your doctor can help to form a plan of action to manage the challenges and decrease their effects. And again, while including those around you in your experiences can be difficult at times, it may increase understanding and communication when you want to reach out to talk about some of these more challenging symptoms.

Being a private and personal matter, sexual dysfunction symptoms in MS may not always be disclosed and talked about, even with one’s healthcare team. It can feel awkward at times to discuss such personal issues and the difficulties you may be having. Both men and women can experience these symptoms which can present in different ways; loss of libido, sensation and arousal changes, or even pain during intercourse can occur. Along with medication management for these symptom challenges, counseling can be another strategy used to discuss sexual issues being experienced. Communicating openly about the problems can increase cohesiveness and support amongst partners and allow for discussion of alternative sexual satisfaction practices. Education around the ways in which MS can affect sexual function and intimacy is an important piece and allows your partner to understand what you’re going through and how you can work together to manage it. That is why it’s important to try and include your healthcare team as well, to recognize and talk about the issues in order to find ways to manage the symptoms.

The symptoms that can occur with MS all have varying degrees of difficulty and challenge they bring to those affected. But it’s important to know that you are not alone in your experiences—others have faced similar obstacles and have also been reluctant at times to discuss symptoms. This is another element that MS unfortunately tries to impose on those affected—to intimidate or shame because of certain symptoms. But this elicits the moment and opportunity where individuals with MS can recognize their symptoms and discuss or disclose them as they wish—to educate others and increase awareness to bring MS out of the shadows and darkness and into the light.

What are some ways in which you’ve managed these unspoken symptoms of MS?

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Taking a Break

Sometimes we all just need a break from things. No matter what’s going on around you—whether it be in your relationships, work, family roles, etc. there are times when we need to take a step back and reflect on ourselves and our needs. Everyday challenges and obstacles can be difficult enough, but throw something like MS into the mix and the stressors can sometimes multiply. MS demands much from everyone it touches; unfortunately it makes no exceptions or allowances if there are other things already going on—it’s selfish that way. So there are times when those caring for individuals whom MS affects need some respite care-time to themselves.

The term respite means taking a break or relief period from something that may be somewhat stressful, difficult, or challenging. Those who provide caregiving to others may need periods of respite, even if it’s just for a brief time where they can step outside of their environment and do something else. This can be very important in relationships where a loved one provides care for another family member. Relationships themselves require a lot of maintenance most of the time and for them to continue working there are moments where those involved need space and time to themselves.

It’s an innate, human characteristic to feel the need to distance yourself from others sometimes. There are times when we all need to pause and catch our breath and examine our own needs, especially if we’re providing care to others around us. We need to be able to self-care in order to be depended on. There are different types of respite services and resources available, especially to care partners so that they can take time for themselves or other things and know that their loved ones are being cared for.

The following resources can help when searching for respite service information:

Family Caregiver Alliance
Phone (800) 445-8106 www.caregiver.org

Caregiver Action Network
Phone (202) 772-5050 www.caregiveraction.org

Eldercare Locator
Phone (800) 677-1116 www.eldercare.gov

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