Wednesday, July 3, 2013

How my sisters diagnosis with Multiple Sclerosis has changed my life.


As a writer I research a lot of events, places and different life styles for my stories. But when my sister was diagnosed with MS my research took on a whole new meaning.
I searched the web for anything that would make her life easier. New therapies, drug trials, life aids that would make tasks simpler but nothing prepared me for the day I realized I couldn't buy something to make this go away.
MS is a life long disease. It effects the person diagnosed and their family. My sister was diagnosed in 2006. She has always been a very strong and independent person, and still is, just with a few modifications.  We realized a few months ago that it was getting harder for her to stay on her own. Her leg was getting weaker and the effects on her arm made simple tasks like getting dressed more difficult by the day. We made a family decision, and my sister made a difficult journey from being on her own to living with me. I know how hard that was for her and I admire her for what she goes through everyday.

We did learn one thing very quickly, with MS many things change and a lot of them are invisable. Unlike other diseases, or injuries, most people do not understand MS and its effects. Many are misinformed so here are a few things I came to understand to better help my sister with her changing life.

First and most important, Everyday will be different.
Everything will take longer and don't try to help unless you're asked.
MS might slow her down but she wants to hold on to every bit of independance she can and attempt to finish what she starts.
Some days she will be up and able to get around, others she will not be able to get out of bed.
Her life revolves around crutches, canes, braces, physical therapy and numerious medications, but that doesn't change who she is. The devices, and medication, allow her to be able to walk as long as she can.

I feel blessed because I get to spend everyday with my sister, for that I am thankful.
I will cntinue to do research to find what I can to help her. But I will also do everything I can to raise awareness, and support for MS research.
Everyday gets us one day closer to a new drug to make her life a little easier, and one day closer to a cure.

I am going to continue to do what I can to make her life easier, because she makes mine so much better.

Thank you for stopping by. Next week we will discuss what therapies my sister has tried and what ones she would love to if her doctor would approve.

Until next time,
Lynda



5 comments:

  1. Thanks for sharing, Lynda.
    Hugs,
    Krystal

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  2. Lynda, blessing to you, your sister, and your family.

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  3. Hi!
    I came here for the Hop, but I saw this article in the Archives and I HAD to come read it.
    You are doing something BEAUTIFUL for your sister! Thank you! There are NOT a lot of families that do what yours is for her. I know all to well about that.
    You've definitely got it ALL down-pat, too, by allowing her to be as dependent as she possibly can, especially the part about 'don't try to help her unless she asks'! I cannot emphasize that enough! That is also why I say you've got it down-pat! GREAT job! You are being wonderful to her! I thank you for that.
    How do I know? I have a similar disease called Stiff Person Syndrome. I take some of the same meds as she does. Mine is also a neurological disease, a muscle disease that causes all your muscles to go rigid/stiff, then they spasm out of control. It's very painful. It's a daily battle to 'try' to control the spasms. They have just about taken away my ability to walk in the house as well. I cannot walk outside of the house at all, so I'm in a wheelchair, and sometimes need the power one in the house, too. It depends on the disease or the day, and sometimes if I'm too bull-headed and overdo it! LOL!
    These 'invisible diseases' are exactly that, and it is VERY hard for people to understand them. You do, and that makes you a very special person, and I'm not just saying that because you truly understand it.
    I hope you find something more to help! I won't be as lucky as this is a rare disease and only 1 in 1 million people get it, so it is under-researched. There is not enough money allotted for the research it deserves. We all donate for research, but ONE little study can cost upwards and over $300,000. It takes a LOT of money.
    I'm glad you are taking this public, too! AWARENESS! A LOT of people don't know about these invisible diseases and what they do to people, and that is a shame at times. A lot of insurance companies and even doctors and nurses do not understand the full scope of what these diseases do to people. Your bringing awareness to her disease IS what is needed! For that, I thank you!
    Keep on keeping on! She'll do GREAT with you on her side! She's SO LUCKY to have you in her life!
    My BEST to you and to your sister!
    Laurie
    laurieisreading at gmail dot com

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  4. A touchy article! But Can you please tell us about symptoms for multiple sclerosis ? I am eager to know.

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