My MSAA Community
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For my sister Bethany

Hi, I am here to help find support of My sister Bethany, myself and our entire family. Bethany was recently diagnosed with MS. I am looking to gain as much knowledge as I can about this disease so that I can help her get thru this. There is so much I don't know and I am looking for knowledge and support. Bethany is just not at the point to reach out for it herself so I am giving it a shot for her. So here I am filled with a whirl of emotions and keeping faith and hope for her.

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Welcome! I'm sorry you are here. The best thing I read in the beginning was "Overcoming Multiple Sclerosis" by Dr Jelinik. It's got a great summary of research studies and all the drugs. There's also a website with videos and webinars, I found the webinars to be boring and not useful to me.

The second was "Awkward Bitch" by Marlo Parmalee, it's a great read for understanding the variety of MS symptoms and a great example of someone who has suffered much but is still a rock star. My family has read both and were also grateful for them.

The gang here has posted many useful links also. Try not to throw yourself down life consuming information overload rabbit holes during his new stage!

*hugs*

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forBethany, Hi, and welcome to you both! There are many very supportive, sweet people in this arena. We all have extremely different symptoms, and some that we share in varying degrees. How old is Bethany and what are her current major symptoms? I am 74, diagnosed for 3 years, on Tecfidera for over 1 year, and doing fairly well. My worst symptom currently is "brain fog" which consists of a dizzy, almost headachy feeling, with slowed brain function. It usually comes on a couple of hours after I get up, sometimes lasting all day. I cannot seem to do much with my creative side anymore. The projects I used to spend time on, I can't get my brain function to work on anymore. I have to really concentrate hard on any task, especially cooking. I can't leave the kitchen, or I'll forget what I was doing and ruin something! I can't drive when I'm like this, so spend more time at home.

You, Bethany, and your family need to read all you can on the MSAA websites and many others on MS, to equip yourselves with the knowledge of what to expect and how you can help. It is an "invisible disease", meaning sometimes only the person with MS knows how she/he is feeling, or what they can do on a particular day. Try not to think that they are "faking" while struggling with this illness. It is very aggravating, and sometimes depressing, to not feel up to doing things that you want to do, and should be able to do, but cannot. I depend on my faith in God, and give thanks for the abilities I still have.

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forBethany what a wonderful sister! Did you have specific questions?

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Welcome Bethany. I'm so sorry to hear about your sister but happy to see She has your support. I was diagnosed in April of 2017. So far my worse symptoms have been extreme fatigue and balance problems causing a lot of problems walking straight. Have to be very cautious at all times to avoid falling. Have had many scraped knees legs and hands. Thank God that's all so far. No broken bones to add to problems. Find a good ms neurologist and get started on a treatment plan asap to avoid future damage as much as possible. I wish her the best. You are in a good place for answers as we are all going thru this together. No person has all the same symptoms So here you can get so much help you can find somebody that can help with anything that comes up. Ive learned more here than any dr could ever tell me. Your sister is very lucky to have you. Please never think she is faking anything as all symptoms are to be taken serious. I know from experience how heartbreaking it is when someone you depend on doesn't take you serious. God bless you and your sister.

Donnie

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Hi forBethany, Welcome. I hope you can already see that there area wide variety of symptoms and a lot of emotional support. For myself, I read a lot of pamphlets from the MS society. They have ones written to families too. Also videos. One of the best things I did was join an MS monthly support group. The thing I heard the other people say which I want to reinforce is that many MS symptoms are invisible, so if she says she doesn't feel well, but "looks fine" trust her. Being that it's Summer I'll share that now, after 7 years, the humidity is really bothering me for the first time. So you may not see symptoms, symptoms may change, and symptoms may come and go. I also have "cog fog" which was my first symptom. I don't recall the way I used to. Mainly I learned to adapt. We all learn to adapt. Groups are often times inspirational to me as I am humbled by how much people do with much less. Sorry if I went on too long. So glad you are there for your sister at this time in her life. Keep in touch. You deserve support too.

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forBethany, I'm sorry you and your family have any need for us, but this chat room has been a huge blessing to me.

You are always welcome to ask questions from people who really understand, though our experiences vary quite a bit. I hope your sister will feel comfortable soon coming here herself soon, but that may or may not happen. You are a blessing to her already, and I'm sure you're very sensitive to her needs to accept this on her terms.

As someone with MS, I thank you for for your love and concern for your sister. Our families are crucial support for us.

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forBethany Hi to you and Bethany. You are a great sister. Reading was empowering for me in the beginning. Please let Bethany know that it may take a while for her neuro to find a combination of a MS DMT (disease modifying therapy), and other meds to treat her symptoms, before her system stabalizes and she reaches her new normal.

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Welcome! There have already been a number of people with great advice. Just remember to take each day as it is, a wonderful day to still be here. I gave good days and bad days and days that I'm not even sure if they are good or bad, lol. There is a lot of support in this group, so feel free to ask questions as you think of them!

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Wow! Bethany is blessed to have you for support! You are an awesome sibling! My extended family is still in denial after 3 yrs. However, my husband, 3 children . my best friends and my youngest uncle and his wife are my support system. This group is an awesome support system!

Blessings!

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Welcome forBethany, this is a wonderful space to learn about MS and all the things that it does to us. I was diagnosed with MS at the age of 56, over 12 years ago and can walk with a cane. For the first few years I was fine,able to do everything. Then I started to get dizzy and lose my balance. At the time I worked in a school office as a secretary and when I started to walk like I was drunk I decided to retire early. During the years I have broken both wrists and 1 arm. I do PT once a week and have for the past year. It is PT for spinal cord injuries and it's the best thing I could have done for myself. It focuses on building my core and balance. However, I live in California and this summer has been especially hot so I have been in hibernation, at least during the day. I am always online reading about MS. I am on Copaxone and have been since the beginning. I imagine your sister is much younger than me. My heart goes out to you both. You are a wonderful sister!

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Here's a good guide:

msbrainhealth.org/resources...

Monitor your treatment to make sure it's working. Switch to something better if it's not. It's a much better time to get MS in the US now than when I got it in the '80s.

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Thank you for joining our My MSAA Community, forBethany , and welcome! We hope you will get as much info as you're comfortable with to help your sister Bethany.

Here are a few good links from MSAA that might be good reads for now:

* Cover Story: "Care Partners - The People Who Make a Difference in Our Lives" (from our magazine, The Motivator - Summer/Fall 2014 issue):

mymsaa.org/publications/mot...

* Download the whole issue to read online or print a copy here:

mymsaa.org/publications/mot...

* A Care Partner’s Emotional “Moons” (by our now-retired former COO, from our MS Conversations blog):

blog.mymsaa.org/a-care-part...

* Caregiver Wellness (by our Client Services department, from our MS Conversations blog):

blog.mymsaa.org/caregiver-w...

- John, MSAA

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For Bethany...you are in great hands and hearts here.TY for being so considerate to care enough about your sister to support her like this.We are normal but we have MS.We still need to have control of our lives as much as we can and be who we are.We need the assistance when we need it and greatful for it.Listening I think has been the most beneficial in this illness all along.Your emotions are important also.Caregiver section will help a lot.We have MS but we are not MS..does that make sense?We are the same people in a different adventure than the day you didn't know we have MS.As you learn you will find it....Love they say, can conquer all.

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