A New Diagnosis

Being diagnosed with MS can be a scary and unsure time. Lots of questions come up in the process and produce many thoughts centered around ‘what if, how, and when’ concerns. It can be overwhelming to learn about the disease too as there is so much information available on it. But there’s no right or wrong way to start educating yourself and others about the condition. And it’s important to know that it’s not something that can or has to be learned overnight. I always tell clients to have patience with themselves and to learn things as they’re comfortable doing so. Everyone is different and approaches things in their own way and time and that is ok. Below are some commonly asked questions that arise during this period for many diagnosed and their loved ones.

Can I still work?

This question comes up often as individuals consider what their future may look like with MS. It will depend upon one’s symptoms and course of their disease, but many people do continue working in some capacity with their diagnosis. Job accommodations can be asked for to help modify work schedules, tasks, and routines. Vocational Rehabilitation offices located in counties throughout the country work with individuals who need assistance in finding/maintaining employment that meets their needs when managing disease symptoms and issues. Having a conversation with the doctor can help with this too. Evaluating any changes that could be beneficial in the workplace or considering whether to and if it’s the appropriate time to retire or apply for some type of disability benefits can be discussed. It’s a very personal and tailored decision that comes with a lot of thought and input. Finding what’s right for you can take some time and deliberation so again have patience with this process too. More information about Employment and MS can be found on MSAA’s website here, https://mymsaa.org/publications/employment-and-ms/.

How do I disclose my diagnosis to others and help them understand the disease?

Again this is something that has no right or wrong answer or way of going about it. When and if you decide to disclose your MS diagnosis to others is a personal and unique decision and can be done in different ways. Letting others know right away or waiting to tell them is something each person decides based on differing factors. Like their relationships with their family and friends—whomever is in their support network, their employer and colleagues, etc. Some people will seek out and find comfort and support by telling others. While some who may not receive the same level of care from those they know may decide to wait or not disclose. For those who show interest and want to learn more about MS there are many outlets in which they can do so. Using reputable MS sources of information online, watching educational videos, listening to podcasts and webinars are just some ways. There are many avenues to educate about the disease. For the latter individuals who may not have that inner-circle support, there are several ways to find these support resources elsewhere.

Is there support available?

Yes! And in more ways than one. This is a question some folks ask hesitantly because they’re not sure if this is something they want to pursue right out of the gate. This is completely understandable. Every person’s experience with MS is different so sometimes it can be intimidating and uneasy to interact with others who may have a different course with their MS—different symptoms and varying degrees of disease progression. But this too can be something that’s uniquely approached. People can choose to connect with others as they find it necessary and feel comfortable in doing so. And if they make the decision to, there are many avenues to try. There are MS organizations, support groups, and online communities, including MSAA’s peer support forum My MSAA Community, that individuals can turn to for information and support.

One of the most crucial things to know is that you do not have to go through the diagnosis alone.  Whether just diagnosed or years into its course, you don’t have to do it by yourself.

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Father’s Day—For All of Those Special Guys

With Father’s Day just a few days away, it’s nice to take this time to think of all the special men in our lives. They certainly don’t need the title of dad or father to be thought of at this time of year. Especially if they hold a special place in your heart and life, no matter the type of relationship. We have fathers, grandfathers, brothers, uncles, godfathers, cousins, and friends that we are blessed to know and be surrounded by. They deserve to be recognized and celebrated, for more than just one day!

It’s a perfect time to let these special guys know what they mean to you. What you admire most about them and what you treasure about your relationship. Tell them thank you and how they’ve made your life brighter. Whether they’ve provided you with strength and courage, protection and love, or just endless support. Don’t miss out on a moment where you can express to them all that they are to you.

The day may also bring challenges for those who are mourning and remembering the men in their lives whom they’ve lost. It can be a difficult time for the men waiting and hoping to become fathers, or for those who have lost a child. But the day can be spent honoring and recalling special moments and memories too. To have faith and keep hopes that future Father’s Days may look different.

Wishing everyone a wonderful day!

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We’re In This Together

It’s quite the understatement when I say that things across the country and around the world are very distressed right now. With the COVID-19 pandemic still impacting lives and dominating most news headlines, the virus has left most feeling anxious and concerned. We’re left with questions and fears. And to top it off, have mostly been confined indoors to socially isolate ourselves for safety. With many things unsettled and unknown, I find comfort in knowing we’re all in this together. Continue reading

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Caring For Your Mind and Mental Health

A common misconception with MS is that the disease affects the body mostly in just the physical sense. This can be true for many diagnosed. However, one’s mental health may be impacted as a result of MS too. MS and its unpredictable nature can create a roller coaster of emotions, changes, and ups and downs for those affected. That kind of ride can impact all parts of one’s mind and body. Understandably so.

It’s not always easy to recognize or bring attention to Continue reading

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To the most influential people in my life

By Penelope Conway

Influential people in my life by Penelope Conway MS Conversations blogLife is a constant flow of people who come in and out of our lives. I have lost and gained many meaningful people over the years. Multiple sclerosis seems to have helped me in the weeding out process. It did that quicker than anything else I have ever faced. I’m not sure if it’s because of my constant unpredictable days or my need for help just to handle the simplest of things in life, but to the ones who have chosen to stick around, I’m forever grateful.

You are the ones Continue reading

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My Mother’s Lasting Influence

By Stacie Prada

As a young child wrapped in my mother’s arms, I’d hear her ask me, “What am I going to do with you?”

I’d answer in tempo with the script we’d created, “Hug me, and kiss me, and love me forever.” She’d squeeze me harder while kissing the top of my head, and I knew she would.

She died suddenly at the age of 47, and she never knew I had multiple sclerosis. This was 15 years before I was diagnosed with MS, yet she’s been a constant companion as I’ve navigated my life in general and the challenges I face living with MS.

Throughout the past 25 years, Continue reading

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Support for the Supporter

Care partners are a vital source of support and assistance to those living with chronic illnesses like MS, and it’s important to realize that they need just as much care and support for themselves in order to maintain that role of care partner to others. Self-care often falls by the wayside as burnout and exhaustion from daily caregiving tasks overpowers all else; that is why calling out some of the crucial resources and services available to care partners is so important. In a previous post we talked about some of MSAA’s resources for care partners, so we thought it would help to expand on this to include some other types of community sources of assistance.

Offices of Aging and Disability Services:

These offices provide resources and services for caregivers that include respite care, homecare assistance and other community programs. Individuals can search by location for this office contact:

https://eldercare.acl.gov/Public/Index.aspx

Centers for Independent Living:

These centers offer information and referral services as well as some direct programs to those living with disabilities and are a good source of information to caregivers. To find one’s nearest location they can search by state/city/county here:

http://www.ilru.org/projects/cil-net/cil-center-and-association-directory

ARCH National Respite Network:

Resource providing a respite services locator, funding and caregiver support contacts, webinars and publications for caregiver needs:

https://archrespite.org/

Family Caregiver Alliance:

Organization that does policy and advocacy work for caregiver needs; they also offer caregiver education, online support groups and links to state by state resources:

https://www.caregiver.org/

Caregiver Action Network:

An organization providing education, peer support, and resources to family caregivers across the country:

http://caregiveraction.org/

Veterans Caregiver Support:

Support resources and tools are provided to those caring for veterans. Resources are also provided for specific conditions that include MS:

https://www.caregiver.va.gov/

https://www.caregiver.va.gov/Tips_by_Diagnosis/MS.asp

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The Not So Good Relationship

Keeping with the theme of relationships on this month’s blog inspired me to do a little Googling into different relationship topics and recent news to see what’s been trending lately. I actually found several pieces on toxic relationships and help in how to recognize these. Usually when people think about relationships the mind doesn’t tend to go towards the dark side necessarily, but the truth is there can be a lot of toxic parts to a relationship that some people don’t even notice sometimes. Often, people believe their relationships look like other’s relationships; everyone has their ups and downs and not-so-fluffy cloudlike days and this is normal. This is true, but when the relationship is in that darker side of the clouds more often than not, it’s something to address.

Psychology Today recently posted about how to recognize toxic people and relationships, and it’s not always easy. In a relationship, sometimes the people involved have blinders on in order to see what they want or need to see in the other person; it’s only natural. Everyone has flaws and no one is perfect, but there are some toxic traits that can’t and shouldn’t be overlooked. Things like selfishness, disrespect, and arrogance are all signs that point towards a potentially harmful toxic relationship. The post also mentions these other red flags as potential signs of a toxic bond:

  • Lying
  • Being unapologetic
  • Manipulative
  • Abusive
  • Narcissistic
  • Spiteful

Examining one’s relationship and trying to recognize red flags is not easy. It can be overwhelming and sometimes shocking to realize that the relationship is causing more harm than good and if it’s contributing to stress and negativity. Sometimes these bonds are ones that can’t be severed so easily either, especially if they’re with family and loved ones. This is why it’s so important to surround yourself with positive energy and loving relationships whenever possible, and taking a step back from the ones that aren’t is sometimes necessary. Reaching out to others for support, seeking therapy, taking time for self-care and self-love are actions that can help combat toxicity. Everyone deserves to be respected and to be in relationships that nurture love and support; anything else is unnecessary distress.

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Being ‘Emotionally’ Well

So, in talking about different aspects of wellness this month I wanted to shine light on one wellness factor that I think is very important, and probably one of the most difficult to measure—emotional wellness. Because the concept of wellness carries with it so many different implications, the emotional piece of it comes loaded with many questions and wonderings in itself. What does it look or feel like to be ‘emotionally’ well?

In a world that’s wracked with chaos and havoc a lot of the time, how many people can say that on a day to day basis that they are emotionally feeling well? Sometimes it’s impossible to keep up this façade, and rightfully so; no matter how much you try to control in your world, life decides to get in the way at times and carry out its own agenda. Obstacles, illness, accidents, frustration, and stress are all elements that can impact one’s emotions and try to change how you react and cope with things. But this is where you get to step in and shake things up; though life does sometimes enjoy giving us a plethora of lemons, we have the choice to make lemonade. It won’t always be easy, and I guarantee there are times that it’ll be even more difficult, but if you consciously choose to stay still with yourself and use the resources you have at hand, you can make the most delicious of lemonade concoctions ever tasted as a result.

One of the main components to emotional wellness is a positive attitude, and I think this is a piece that can be especially hard to maintain at times. But again, while we may not have control over the things that happen to us, we can control how we react to them, and trying to stay positive and optimistic in this may be one of the strongest weapons we have. Being able to seek support from others is another measure of this wellness puzzle piece. Now this can be challenging for many, as asking for help can be misconstrued and thought of negatively at times, but rather than see it in this light, think of it as a strength – reaching out to others in times of need shows that you are aware of and considerate of your needs and what you need to move forward. And if that means it’s a helping hand reaching out to you, then grab hold of it. You know yourself best, so if you find that you don’t have all the pieces to help you feel emotionally well, pin down what you think is missing and allow yourself to look for it.

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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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