Accepting the Unexpected (and Unwanted)

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

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Communicating Online

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.

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

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
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  • ‪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.

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Some Extra Holiday Help

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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