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  • help_me00
    Hello! My name is Emily. I'm 16 years old. I know I know that's a little young to be on a site such as this, but I'm in search of Help! My grandmother was diagnosed with Multiple Sclerosis in 2004. However, recently, New lesions have been discovered. The once proud, independent, intelligent woman I knew now has trouble forming sentences. I have come to this site for help/advice. I want help to further understand this condition and get to know individual cases. I need some pointers on how to emotionally support her. Please help me. Yours truly, A girl in need.
  • maria1
    Hello Emily and welcome. For you to emotionally support her: consider trusting her ability to work through the issues she is dealing with right now. Trust that she will find the answers she needs to correct the problems she is facing. Oftentimes every symptom stays for a while, and when you finally get use to it it disappears. Most often, learning to relax all the muscles helps alot. Usually when we feel pain we tense the muscles and make things worse. Tense muscles prevent oxygen from going to the muscles and cells in the body, and prevents the elimination of waste, so we hurt more. Learning to notice when we are tensing our muscles as an automatic response to pain will give us the ability to keep our minds focused on soft muscles. It has been the most important lesson I have learned. 

    ​About forming sentences: sometimes we all have that problem, it too does go away, and in the mean time it is a bummer, but again, relaxing and making it okay not to find the words is better than fighting to find the words. Being happy and being loved and being trusted is important. Not being treated as a child is important. Losing independence is a really bad trip we have and we fight to maintain our independence, so treat her as an adult at all times. Let her ask for assistance, do not rush to do for her. Watch her and ASK  if she wants a hand. It is relearning and rewiring the brain that we do, so everything takes longer and is slower. Like learning to ride a bike and skate, we must fall and get up. ms (I dont use caps for ms because it is just a challenge, it is nothing special) is a royal pain in the butt!!! And we each must learn how it is affecting us individually. 

    ​Sometimes always never: sometimes some muscles dont work, sometimes muscles always work and sometimes muscles never work - by that i mean, some days the hands dont work, some days the mouth doesnt work, some days the eyes dont work. It is all the brain sending messages along a bumpy road and the messages fall into the wrong mailbox. Some days i drop things, some days i trip, some days i cant swallow, everyday a surprise(not all surprises are happy birthday presents - so some days i get really pissed and act out, almost like a temper tantrum, frustration, anger and all the other emotions happen all at once along with all the mistakes the muscles make, so i sit down and WAIT for myself to relax and things settle down. 

    ​A good place for you to begin is with the symptom category on the discussion page under Topics, it will give you an idea of the emotional experience of ms and how we cope with it.

    ​You can serve yourself best by remembering that your granny is a person working out a challenge for herself, it is her puzzle to solve, hold her hand and love her and she will feel the warmth and peace that brings with it, as with everything in life, love makes the world go round and overcomes everything, it soothes, it comforts, it supports, and smiling too, helps alot, it is the sunshine she needs. Thank you for caring enough to learn what is going on with your granny. We will cheer you on whenever you are down, and we will give you our support. maria 
  • CommunityManager_Nicole
    Hi Maria,

    I could not have said this any better! Thank you for posting such a strong and helpful post that really explains how people like us want to be treated!

    Best~ Nicole
  • MS_Navigator_Steven
    Hi Emily,

    This is Steve with the National MS Society.  

    I'm glad you found this site.  I wanted to provide you the following link which will take you to our publication Caring for Loved Ones with Advanced MS: A Guide for Families.  I hope you find some of this information useful.  I'd also like to encourage you to contact one of our MS Navigators should you or your family have additional questions or would like to discuss resources and support services further.  We can be reached at 1-800-344-4867 option #1.  

    https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Guidebook-Caring-for-Loved-Ones-with-Advanced-MS-A-Guide-for-Families.pdf

    Take care,

    Steve
  • maria1
    You are welcome, Nicole. I truly appreciate when I find the right words, they paint a picture of the the place where I am that I was not aware of.