Mom with MS, advice?

For questions on how to support loved ones with MS.

Mom with MS, advice?

Postby mahiloa » Sun Feb 21, 2016 7:05 pm

Hey everyone! My name is Tori, I'm 19 years old, and I'm very new to this site. I really have never talked about this, so I'm just going to spill it, and hopefully I can get some advice from people that understand my situation, because I don't quite fully understand it myself. My mom has been suffering from Multiple Sclerosis throughout my entire life, although 'suffering' is not the right word to use. She's been so strong through every single moment -- she's really honestly my hero in every sense of the term. When I was 6, she had a really bad exacerbation for about a year or so, but her doctors got it pretty under control. She was taking steroids and whatnot, shots every other day. Me and my mom were /close/. She didn't work because of her MS, and so we spent more than a lot of time together. She was, and still is my best friend. Everything seemed fine until I started middle school. Her condition suddenly took a nose-dive.. She was saying strange things, her mind seemed to be slipping, and her physical condition degraded until she needed a wheelchair. She had a stroke on top of it all, and it effected the part of her brain that controls speech, so she can't really talk besides for a few words here and there. I watched her slip but I tried so hard to stay strong through all of it. She was put in several homes and got several lesions in her brain (I still don't fully understand the entirety of her current condition, it's pretty confusing). I used to visit her every single day but now that I'm away at college, I really can't see her often at all. She's gotten to the point where she is bed-ridden and she can't really express herself -- I feel like she's all there in her head, but it's so hard when she can't say things to me or give me advice. I know that sounds selfish but I just feel like I miss her so much even though she's right there. It's just so unbelievably emotionally draining and nerve-wracking to visit her on the sparingly occasions that I can, but I love her so much and I always want to put that beautiful smile on her face. I don't exactly know how to portray my emotions, but I feel like the empty feeling will just never go away. I guess I'm just looking for advice, from anyone who gets my situation. Thanks for reading all of this, and please, if you have any input or advice, I'd be really really appreciative.
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Re: Mom with MS, advice?

Postby lyndacarol » Mon Feb 22, 2016 8:02 am

mahiloa wrote:Hey everyone! My name is Tori, I'm 19 years old, and I'm very new to this site. I really have never talked about this, so I'm just going to spill it, and hopefully I can get some advice from people that understand my situation, because I don't quite fully understand it myself. My mom has been suffering from Multiple Sclerosis throughout my entire life, although 'suffering' is not the right word to use. She's been so strong through every single moment -- she's really honestly my hero in every sense of the term. When I was 6, she had a really bad exacerbation for about a year or so, but her doctors got it pretty under control. She was taking steroids and whatnot, shots every other day. Me and my mom were /close/. She didn't work because of her MS, and so we spent more than a lot of time together. She was, and still is my best friend. Everything seemed fine until I started middle school. Her condition suddenly took a nose-dive.. She was saying strange things, her mind seemed to be slipping, and her physical condition degraded until she needed a wheelchair. She had a stroke on top of it all, and it effected the part of her brain that controls speech, so she can't really talk besides for a few words here and there. I watched her slip but I tried so hard to stay strong through all of it. She was put in several homes and got several lesions in her brain (I still don't fully understand the entirety of her current condition, it's pretty confusing). I used to visit her every single day but now that I'm away at college, I really can't see her often at all. She's gotten to the point where she is bed-ridden and she can't really express herself -- I feel like she's all there in her head, but it's so hard when she can't say things to me or give me advice. I know that sounds selfish but I just feel like I miss her so much even though she's right there. It's just so unbelievably emotionally draining and nerve-wracking to visit her on the sparingly occasions that I can, but I love her so much and I always want to put that beautiful smile on her face. I don't exactly know how to portray my emotions, but I feel like the empty feeling will just never go away. I guess I'm just looking for advice, from anyone who gets my situation. Thanks for reading all of this, and please, if you have any input or advice, I'd be really really appreciative.
Welcome to ThisIsMS, Tori (mahiloa). We are glad you found us. We are very understanding of your situation. The loving relationship with your mother is a treasure to you both.

Since nutrient deficiencies can develop at any age and can cause neurological symptoms, I wonder if a doctor has ever order a vitamin D blood test on your mother. Or vitamin B12 testing? Testing of her thyroid hormone levels? Maybe her GP could have these done even now where she is living.

People with an MS diagnosis can have additional conditions as well – not EVERY symptom is necessarily part of MS.

My heart goes out to you. My prayers, too. We are always here to listen.
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Re: Mom with MS, advice?

Postby avengr13 » Thu Feb 25, 2016 11:05 am

You sound like a great daughter! Is there a school closer to where she lives. Sounds like it might be important to both of you to be closer in distance.
Have you thought about a video cam for both of you. She may not talk but then she could see you and hear you for a bit.
Best of luck to both of you!
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