Some of the ABCs

Living with MS is a unique and different experience for each person it affects. No two people will have exactly the same symptoms or disease course, but many still find commonalities in their experiences and feelings when it comes to the condition. MS tries to bring a lot of baggage with it, but many find ways to cope and manage the disease in their own way that works for them. This is done with the help and support of healthcare professionals, family, friends, and others in the MS community. As we focus on some of the ABCs of MS this month according to each person’s view of it, I’ve highlighted some factors I’ve seen relate to MS below.

A: Some of the A’s I’ve seen correlate to MS include Acceptance, Adapting, and Adjusting. Hearing a diagnosis of MS brings a period of trying to accept the diagnosis and coming to terms with it. Acceptance is not an easy feat and can take time. It can come in waves and show up again at later points in the disease course too. So, it’s a step that individuals may find themselves faced with multiple times. Finding ways to help accept it can look different and change too and is unique to each person. Adapting and adjusting to some of the changes MS can create is something people find themselves doing often as well. Making changes and modifying things can help maintain balance and expectations. If routines/schedules/tasks need adjusting to help fit your needs better, take time to make these changes so they work for you.

B: B’s associated with MS can include Building and Backup. Building relates to the education and knowledge piece of MS. Building upon information about the disease and continuously learning new facts and resources is an important piece to the process. Continue to build upon your strengths and goals and finding what you enjoy too. Backup refers to the support you put behind you when dealing with MS. Whether it be your own skillsets and strengths, support from others within your circle, education and resources, and health information. It never hurts to have a little backup when needed.

C: The C’s related to MS incorporate Community and Care. Within the MS space there is a great sense of community that many individuals rely and depend on for support. It is vast and has many layers that consist of healthcare teams, MS organizations, peer and familial support, counseling help, and other pieces individuals connect with throughout their MS journey. Community support is a great tool in helping to manage the disease and finding assistance. Care is a crucial piece to the puzzle as well. Finding healthcare, personal, wellness, and emotional care aid is significant in helping cope with the disease and all its factors.  

It’s hard to imagine that one disease can have so many differing views of it and be experienced in such vastly different ways, but MS can and does. But no matter how unique each person’s course of it is, there’s still so much to connect and relate to about it. No one is alone in this.  

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A New Year Ahead

I don’t know if it’s just me, but I’m having a hard time believing that we’ll be in a new year soon. Regardless, 2022 is rapidly approaching with each passing day. It feels like time has gone by more quickly, even during a pandemic, and that we’ve just flown through this past year at lightning speed. Luckily 2021 brought with it more hope and opportunity than the previous year. With its vaccine availability we were able to start doing more and seeing people again. The virus has not gone away but there is more protection now than before and with it more hope and high spirits heading into this New Year.

Spending time with others

Hopefully this upcoming year we will see people getting together more often. Of course, all the while still abiding by safety measures and precautions, when possible. But gathering again with friends and loved ones will be a welcome, continued change we hope to see.

Continued research and education

We continue to learn more daily when it comes to the COVID-19 virus and its variants, and hopefully this will continue in 2022. But not only that, MS research and education remain vital for the MS community as well. Treatment investigations, clinical studies, and education programs have increased over the past year and offered avenues of hope for those in the MS space. Education remains key to staying apprised of what’s impacting those touched by MS.

Support and encouragement

It’s been a trying time we’ve found ourselves in for nearly two years now. Things have weighed heavy on people’s emotions and well-being, but support in the MS community has remained strong and resilient. We’ve seen people still connecting with one another through various means to stay linked and provide encouragement to others. Be it online, by phone, or other avenues of communication, members of the MS community tried their best to stay in touch. MS organizations and groups continued to provide vital services as well, letting individuals know they’re not alone.

As we embark upon this New Year, let’s try to stay hopeful for refreshing changes and opportunities that may come. We can continue to hope for better times ahead.

Wishing everyone a hopeful and bright New Year!

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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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