Thursday, December 15, 2011

Why are parties hard for some people with MS?

Writer, ms.about.com

Parties, holiday or otherwise, take many different forms, such as: 

  • children’s parties (think 20 six-year-olds, wild with excitement about opening presents and fueled by sugar, sugar, sugar)
  • an office party on a Friday evening (think 30 adults, happy to be done with the workweek, getting a little loud and maybe tipsy as they discuss interoffice gossip)
  • a family celebration (think about all of the emotional baggage that comes with this particular mix of people, not to mention your role in preparing the meal and other tasks)

Any of these scenarios can be draining for anyone. However, people with MS have specific symptoms related to the disease that can make parties like this particularly demanding — emotionally, mentally and physically.

Many people with MS have cognitive dysfunction. Most people associate this with things like not being able to remember something they just heard, or putting something, such as the house keys, down and being unable to find them again five minutes later.

However, cognitive issues can also make it difficult to keep up with a conversation, especially if lots of people are talking at the same time. We may have a hard time finding just the right words to communicate a thought — often, by the time we figure out how to express ourselves, the conversation has moved on to a new topic.

Fatigue can also be a big impediment to being the life of the party. Many of us barely have the energy reserves to make it through a normal day. Holiday time, with the extra stuff that we have to do, can really wipe us out. A holiday party can require more energy than we have.

Speech problems are another type of MS symptom. Dysarthria is a speech disorder in which the pronunciation is unclear, but the meaning of what is said is normal. It can cause people to speak in slow or strange rhythms. It can also make people with MS speak more softly than they would like or slur their words. This makes it hard to participate in conversations at parties, especially if there is loud music or lots of background noise.

These are just some of the challenges that people with MS bring with them to parties. Let's not forget other MS symptoms that can impact many of us, such as urinary incontinence, mobility and balance issues, various pain symptoms — all of which can make it difficult to relax and enjoy a party.

However, this doesn't mean that we should sit at home while others are having fun. I have a few suggestions for how to enjoy yourself at a party, particularly during this holiday season:
  • Be picky. If you don't really, really want to go to a party, don't go. 
  • Plan ahead. Rest up before the party, so that you build some energy reserves to carry you through.
  • Strategize your socializing. Have a two-sentence answer prepared for the "how are you?" question, so that you don’t find yourself stumbling around looking for an appropriate response. 
  • Have one-on-one conversations. Trying to participate in a large group discussion can be hard, especially if the topics are moving quickly. Find an interesting person and have a nice chat, preferably in a quiet place.
  • Don't be afraid to leave early. Listen to your body, and do what it says in terms of getting out of there and into bed.
  • Limit the booze. Alcohol can make fatigue and other issues worse. A drink or two is fine, but don't try to keep up with "Party Marty" from the office next to yours.

My goal here is not to be a Scrooge, but to remind all of you that we can still enjoy the holidays. Doing some things on our terms can reduce stress and fatigue and keep the season merry.

Happy Holidays, my friends.

16 comments:

  1. Finding an accessible bathroom is a problem. Check before going

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  2. Wow! I didn't realize there was a name for the speech problems I have. Sometimes people understand what your going through better if you can give them a word they can google! Thanks!

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  3. I don't have the speech symptom described here but I have an issue with getting the words from my brain to mouth correctly. Often times, what I mean to say is not what I end up communicating. Is there a term associated with this condition?

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  4. Thanks so much for discussing this topic. It is really hard for me to go to parties. Especially when it is a group of people I don't really know and I have to think of things to say. I become speachles and it exhausts me. I always communicate more easily in a text or email. I am learning to say no to parties I don't feel up to. On christmas for example, I made arrangements to spend the afternoon at a friend's house. Then when my daughter-in-law asked me to go to her family's house I was able to provide and excuse without hurting her feelings. I have also found a good way to do the "how are you questions". I say "I am okay today, or I am having a rough day today... but how are you". Great way to switch the topic off of your illness.

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  5. It's like every time you read something that "hits" on EXACTLY what is happening/happens to you, a tiny weight gets lifted off your shoulder & reminds you of several things, including:

    1. YOU are not the only one going through these things -- you are NOT ALONE;
    2. There are actual words for things that are going on with you (i.e. Dysarthria), etc.;
    3. You feel a bit vindicated that there really ARE things going on related to the MS & it's not just your "imagination"....

    If any of that makes sense to anyone. Not sure if I worded it all correctly to get my point across or not. I just feel so alone so much of the time, and many times feel like I'm going "crazy" because I have things going on that I can't explain....I thank GOD for a husband that is as caring & loving as mine. If he wasn't, I'm really not sure he'd have the strength to face these things with me. He's all I have...

    HAPPY HOLIDAYS TO ALL. May the new year bring nothing but happiness, cheer & good things to all of you. Many blessings too. =)

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    1. You are so lucky. My husband does not "get" MS and expects me to do everything like a normal person. We are divorcing.

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  6. Every year I throw a big party for my daughter. November 3rd she turned 9 years old. I had 18 children here in my little 2 bedroom apartment. I limited it this year to two hours and setting limits helps knowing that it is only for 2 hours and she well deserves it. She has had to deal with the repercussions of this disease most of her life with me being a single mom. My daughter is awesome, compassionate, understanding and very sympathetic to my bad days. Of course I feel all kinds of guilt because often I am just too tired to do things with her. She was 4 when I was diagnosed. I am grateful to have her to give me a reason to keep going.

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  7. I went to party with my mom. I know everyone it is business association she belongs. I am thirty nine and thinking I am the only daughter who is not married or dating with all these autoimmune diseases at this party. hey had sympathy for me tonight. The akward kind. We did a grab bag gift and they know my situation and I got an awesome gift but no one attempted to take it. Everyone whispered don't worry I am not taking it. I mean it was great but very awkward it was part of of the yankee swap. I am at all these parties with my mom and I am the only child of her friends who goes. Am I making any sense. Happy holidays

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  8. This is a perfect article that's right to the point. Still, there are people who continue to choose ignorance. If you really care about a person, you should research what they're going through and have compassion. Feeling obligated to attend only makes it harder to attend a get-together. Of course, there are those amazing people (sarcasm) who can't completely know what you're going through or they'll run away with that information, such as the incontinence. And to be honest, I would rather go to Times Square on New Year's Eve than to any family gathering. Family members are the meanest. All of the issues that come with having MS brings on self-consciousness and that only gets worse when people aren't quiet with their negativity. SkitSkatSue ~ you put it very well. 8)

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  9. Sensory Overload is what gets me - you cant put me in a room with tons of lights, music, people talking, scents from people, scents from food, and then actually expect me to interact with you and the other 10 people. It's not going to happen. Of course that makes you a kiljoy and people think youre stuck up, but they just dont get it.

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  10. So here I go reading about MS again. I was diagnosed with ON about 6 months ago. Before that diagnosis MS had been in the forefront as a possibility of what may be causing my symptoms, according to my doctor then. I have not been formerly diagnosed as I no longer have access to medical care. I struggled after the ON dx for months, reading every little thing about every little ailment. It was so scary to see that every time I had something "strange" going on, the google results were almost all MS related. I had decided to just let it ago again. Try to live as normal as possible. Which brings us to now. I can't escape it. Everything I have had issues with, even spanning far back into my early twenties, all are on that damn list of symptoms. The people in my life think I'm crazy. The weird cognitive and sensory issues make me feel crazy. So whose to say I'm not! Parties, I can't last but an hour, 2 at the most. When I throw my son birthday parties, I feel so overwhelmed by all the people that need my attention, and the kids, that just puts it over the top. I'm always the first one to leave. Always the first one to go to bed. Always the first one to say I'm done. Even at my own son's birthday parties. It makes me look bad. But I can't help it.

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  11. All of you who wrote comments: you have NOTHING to apologize for. My beautiful 38 year old daughter has had MS for 13 years. It has dominated her life and her in-laws have treated her so horribly. So has her husband. She is finally divorcing him after years of misery. Her guilt kept her with him. She had nothing to be guilty about, her kind heart kept her there. She has two children who now have picked up many of their father's abusive ways about her health. There won't be any winners in this family over the MS. So Ladies [and Gents] with MS...take of yourself first or you will not be there for your children if you have them. Your siblings and parents love you and want you alive. Keep believing your life can be lived with care and you can be happy. You deserve to be happy....and most of all, pray and thank God for the measure of health He has given you today. I love my daughter so much, she is so beautiful inside and out, I would take the MS gladly so she could live a healthy life. Bless Dr. Stachowiak for her insights on MS and partying.

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  12. Most people at a party are already sluring there words so i guess we would fit right in lol

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  14. I am so glad to read this from others. I have the bad habit of starting in the middle of a sentence or stopping before i am finished and my husband gets so mad at me. Luckly i have a daughter that goes with me alot and she knows what i want to say so she tells others what i am trying to say or they do know me well enough to realize what i am saying. I start on Gylina next week because all the other ms meds my body has rejected so hopefully this will help me some. I hate a room full of ppl and it sounds like bees talking.

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  15. I know I am late posting on the subject however I felt compelled to respond because this is so true of my situation. I have PPMS so walking, talking,and bathroom accessibility are a major concern for me. It is unnerving to me to be surround by people and chatter. Even if these people are friends and family, it completly rattles me. It's not just party situations though, going out to dinner at a busy resturant has the same effect.

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