Some of the ABCs

Posted on January 12, 2022 by Angel Blair

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.

A New Diagnosis

Posted on October 13, 2021 by Angel Blair

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.

Accepting the Unexpected (and Unwanted)

Posted on October 5, 2018 by Angel Blair

Everyone’s lives are very different and unique. But when it comes to certain experiences we can all relate to one another in some way. Many have had the unfortunate and shared experience of moments that are unexpected, uninvited, and honestly, unwanted during the course of life.

For individuals diagnosed with a chronic illness like MS, acceptance is not often the first thing on their mind. Questions, doubts, Continue reading →

Communicating Online

Posted on February 23, 2015 by Angel Blair

It’s all the rage these days – communicating to others through technology channels, especially online. Gone are the days where individuals only communicated in-person or by telephone. Now interacting with others may still involve a telephone, but mostly by way of text messaging and social media platforms do people stay tied to others.

Using online communication systems to interact has been steadily increasing with the technology age and will probably continue to do so. Individuals in the MS community use various types of online platforms and discussion groups to discuss MS-related topics and interests with fellow members of the community.

As this online communication trend continues, what are some ways to ensure your safety and comfort level when accessing these portals?

Read and review. Be sure to read and review any website and social media platform policies when engaging in online interactions. Your privacy is important, so be cautious of what information you share online and how it will be shared with others; only share and disclose what you’re comfortable with. Use discretion if disclosing personal details or identifying information about yourself. You want to ensure that your safety and privacy remain a priority when connecting to others.

If some type of interaction feels ‘off’ in some way, be mindful of that feeling and try to take the appropriate steps to disengage if necessary. Remember why you reached out in the first place, if you feel as though you are not getting the support or information you need, or that conversations are not healthy for you, you have the right to leave the conversation.

Communicating online can be a supportive and dynamic experience, so just be sure to do so safely and appropriately.

MS Clusters – How many of your friends and/or family also have MS?

Posted on November 24, 2014 by MultipleSclerosis.net

There has been a great deal of research examining the role of genetics in the development of multiple sclerosis over the years. The current understanding is that MS is not directly inherited, however, genetics appear to play a role in increasing a person’s risk for developing MS.¹ Experts currently believe that those who develop MS have inherited something in their immune system that makes them more reactive to whatever is causing the immune system to attack myelin. It is possible that something in our environment, potentially viral or bacterial, triggers the autoimmune response that leads to MS in a person who has an inherited susceptibility in their immune system. Because so many questions remain, we decided to ask our Facebook community if they are a part of an MS “cluster,” where multiple friends and/or family members have MS. Over 170 people responded, and here’s what many of them had to say!

Several people in my family have MS

My sister had MS. I have it now. She had PPMS and I have PPMS. There were 7 MS cases within 2 blocks of where I grew up. I have heard that genetics loads the gun and the environment pulls the trigger.
My dad and his brother and sister all have MS; that’s 3 out of 5 siblings.
My sister and I were both diagnosed with MS this year, one month apart. Interestingly my sister is adopted, so we are not genetically related. We both want answers. It’s so tempting to blame something environmental. No one else in family has ever had it, and my twin brother is fine.
I have two kids and two cousins with MS!!
Two of my maternal grandmother’s cousins, my mother, her sister, my father and now myself. We all live in Victoria, Australia, which is quite cold and has higher rates of MS and Vitamin D deficiency than almost all the rest of the country. ‪None of the neurologists we see had ever come across such a “cluster” before .
‪I’m the 6th cousin on my father’s side of the family to be diagnosed with MS.
My dad, his sister, my sister, my half sister and I all have MS. That’s 3 of 5 kids (2 boys, 3 girls) with the same father that have MS.
My aunt has it and my great grandmother died from it. I believe my lifestyle in my 20’s was the ultimate trigger. But eating a mostly vegetarian diet and drinking tons of green tea has helped me in more ways than I could have hoped for.
I’m the third generation in my family to have MS.
I have MS, was diagnosed in ’87, but in retrospect I’m pretty sure I’ve had it since my early 20’s. In 2005 my daughter was diagnosed at 25. My family was puzzled that it isn’t supposed to be hereditary! Then in 2007 my husband and her father were diagnosed. He and I both grew up in the same town; maybe its genetic and maybe environmental?
I have 2 cousins on my mom’s side that also have MS. I’m the 3rd to be diagnosed.
I am the 4th in 3 generations that we know of.
I’m 55 and I’ve had it since age 30. We think my grandmother on my dad’s side had it, but she passed away in 1983. Now one of my daughters has it and one of my nieces has it; that’s it for now.
My daughter was diagnosed at age 16 years old, and 5 years later I was diagnosed as well.
My mother’s cousin, first born, had it. Her brother’s first born had it, and I, her first born have it; my brother’s first born has it. All were/are males except for me. Is there a first-born child link?
My sister and I both have MS, and we are the third generation to have this in our family.
My friend has 69 first cousins, and 19 of them have MS.
I have MS, my mother has MS, and her mother had MS and died from complications when she was 46 years old.

There are a lot of people who live near me who have MS

There isn’t a “cluster” in my family, but there is in my neighborhood. The house on left, house on right, house across street, and me – each has someone with MS. That is my whole block.
My sister had MS, but no one else in the family going back 10 generations had it. HOWEVER, a woman on the next farm had MS and now a young woman on the closest farm to ours has been diagnosed with MS; that’s in a community of 40 people.
I’m the only one in my family. Three of us from a very small country town who went through primary school together have it.
My co-worker had MS, then I had it, then another co-worker got diagnosed…all while active duty Air Force serving in same building. It’s a very interesting connection.
There’s a cluster here in northern California.
I grew up in the town of Tonawanda in Western NY. It’s located in between Buffalo and Niagara Falls. Many people I went to school with have MS.
I don’t have a family cluster, but 3 of us, all female, same age, lived on same block within 4 houses of each other, have MS. There could be more that we just were not in touch with after moving away. We were all diagnosed in 2005.

I’m the only one in my family who has MS

No one in my family on either side has MS.
I have it, but I’m the only one in my family. I was told that MS wasn’t hereditary.
I am the only one with MS. Diagnosed at 33 and I am 40 now. Praying no one else in my family ends up with it.
I am the first in my family. We went way back and couldn’t find anyone.
My dad was the first and only in our entire family.
I am the only one in our huge family.
I was told that MS is not hereditary?
I was told that MS runs in the family, but usually skips a generation; I am the first on both side of the family to ever be diagnosed with MS. I was diagnosed in 2007 when I lived in CO – which has the most people to be diagnosed with MS.

There are multiple autoimmune or neurologic diseases in my family

My mother has Crohn’s Disease. My youngest son has Type 1 Diabetes, my eldest has allergies, and I have MS.
I’m the only one with MS, but I also have neurofibromatosis (NF). I have over a dozen family members with some type of neurological problem. I have a nephew who has NF and Parkinson’s, and several family members who have epilepsy. I am 58 and was diagnosed with MS about 14 years ago. I’ve had NF all my life. I passed it on to my son and daughter.
I am the only one in my family to have MS, but my sister has Lupus.
My father’s three cousins (MS), his sister (ALS), he (peripheral neuropathy), my husband (MS), our daughter (MS – diagnosed at 10!)!!
As far as we know, my middle child, my daughter, is the only one to have it. My mother’s family all came from Sweden, which is a hotbed for MS. I don’t fully understand a lack of Vitamin D being a factor. We live in PA where we do get a lot of sunshine.
Four out of 6 of my siblings have MS, and my mother died from ALS.
My grandma had MS, my aunt has Lupus, and I have Neuromyelitis Optica.
I was diagnosed a year after a maternal cousin was diagnosed with MS. My cousin’s mom had severe RA, and my mom’s fraternal twin has Lupus.

Reference:

1. Aronson KJ. The epidemiology of multiple sclerosis–who gets MS and why? In: Kalb R, ed. Multiple Sclerosis: The Questions You Have – The Answers You Need. 5th ed. New York, NY: Demos Health; 2012:21-27.

Some Extra Holiday Help

Posted on November 12, 2014 by Angel Blair

There is no doubt that the holidays are rapidly approaching these days, especially with cooler temps across the country and decorations filling the stores as continuous reminders. While this time of year translates into joy and cheer for most, for some individuals this may represent a time when some extra help is needed to make the holiday special. Financial difficulties can make expectations of the holidays a struggle, but it’s important to know that there are resources available that may help support your holiday activities, and therefore lift some of the stress that can accompany these festivities. The following community resources may offer help through the holidays:

Salvation Army offices offer seasonal services and holiday assistance programs to help families in need with holiday dinners, toys, and clothing. Search for your local office to inquire about direct programs and services and application time frames.
The United Way can offer information and referrals for holiday assistance programs in your community.
Contact the county department of family/social services in your area, as their office may have additional holiday assistance and resources available.
The Toys for Tots Program provides new, unwrapped toys during the holidays to children in need through community outreach and support efforts.
Local religious organizations may offer seasonal assistance as well, though these programs can vary based on location. Contact the groups directly to inquire of services available.

Many community assistance programs have specific application deadlines and requirements in order to receive holiday assistance by a certain time. Be sure to reach out to the resources to see what’s available in your area and how to apply. Some extra holiday help can go a long way!

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