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To anyone with MS or has a close friend with MS

My close friend has progressive MS.

I’m 43 & she is 41.

I want to help her in so many ways; sometimes I feel helpless & let her just cry on my shoulder & hold her tight & tell her I love her.

I need to know what else I can do?
Where can I go to get a good supply of adult diapers?
Can I donate blood? (I have a very healthy blood)

She is the type of person to get up & go out to the laudrymat to wash all her comforters & sit in a soaking wet diaper, BUT won’t call me/anyone for that matter, for help.

I like to say “just for company”/”someone to talk to”.

The word “HELP” seems to be a bad word.

Do others feel like this?

Thanks for your time,

Joann

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Matt
    5 years ago

    My wife Kate has ms, and she thinks that I dont care enough. I was wondering if there is anything I can do to show her that I really do care? Im not trying to take away from her doing stuff on her own, by I want to help and show that im trying. She does have progressive ms, and was only diagnosed a few months ago.

  • Karen
    5 years ago

    Hi Matt,
    I wish I had an easy answer for you as then I would relay it to my partner ; ) I don’t know what your home life is like or what Kate’s MS is like specifically… But, I can tell you what helps me. I was diagnosed end of April 2014, so still pretty new and like Kate, I am still adjusting, learning my new body, and coming to terms with my diagnosis. Although helping around the house, etc is important, what it sounds like she needs is emotional support. There is a grieving process. She just wants to feel you there. She may want to talk. Just listen, really listen, and respond. The responding is important too. I know this might sound weird, but it’s okay to just say things like wow that sucks, I know this is hard I can’t imagine, but you are so strong and doing so great. You don’t always have to “fix” something (this is what my bf always tried to do)to help her. She may just need to share and feel validated. Cut her break when she is cranky and make sure she knows you’re still attracted to her. The most important thing is for her to know you guys are a team, that she is not alone. There are a lot of emotional things going on, as well as physical, for her right now and it’s easy to feel alone and scared. I know it’s hard, but you guys will actually grow closer as a couple facing this together. Also, be patient with yourself. You, too, are processing this, watching her and dealing with changes to your family life. Matt, if you want, feel free to email me (karen920lynn@yahoo.com). I’m no expert, but I’m probably around 6 months ahead of your wife and would be happy chat!
    Best wishes, Karen

  • Kelly McNamara moderator
    5 years ago

    Hi Matt,

    Thanks for being a part of our community. We’re very sorry to hear about your wife! As a family member of someone with MS, it’s always difficult to know how best to help. Like the writer mentions above “help” sometimes seems like a bad word.

    The fact that you are reaching out and seeking advice about how you can best support her speaks volumes about what a supportive husband you already are. It might be helpful to check out writer, Donna Steigleder, who writes from the perspective as a caregiver for her husband who has MS: http://multiplesclerosis.net/author/dsteigleder/

    Also, we’ve collected several responses from the community on how they describe MS to those close to them: http://multiplesclerosis.net/living-with-ms/explain-multiple-sclerosis-family-friends-colleagues/

    We wish you and your wife both the best and always feel free to follow up with questions for the community.

    -Kelly, MultipleSclerosis.net Team

  • Laura Kolaczkowski
    5 years ago

    Joann, is your friend Michelle feeling any better? I hope so. hugs to you both, Laura

  • Joann author
    6 years ago

    I’m not sure how this site works but I did post a didy in my inbox.
    Please help & read

  • Joann author
    6 years ago

    Well it’s official….she is slowly loosing hearing in left ear.
    I invited her family over for a firework show.
    I said,I’ll be using my cane & have a knee brace on, You can stuff cotton in your ear. Put a patch over her left eye.”
    (sight is going as well.)ARRRG!
    We are gonna sport our style girl! lol

  • Joann author
    6 years ago

    I would like to by saying good morning & God bless all of you strong souls out there.

    I’m very upset for my best friend is slowly going in the wrong direction with this ”evil monster”. That’s what she call’s it.

    In the past 3 weeks it’s been nothing but bad news. It upset’s me & pisses me off @ the same time.
    Michelle is her name, Please send’s some prayers her way. I would greatly appreciate it.
    Michelle has been poked & pried at. 1. Going to see a Dr. for an test that requires needles (small ones) in her spine, legs etc. because she has herniated disc’s in her lower back & neck. I have had this test but I forgot the name.
    2.She has been off Rebiff for a while now & is trying to get approved for Ginelya.
    which means more trips for blood work. In fact she drove from way up North Jersey where we live to plainfeild. By herself! I wanted to go w/ her but she just kinda said it’s early & beat around the bush so to speak.
    Now here is the really messed up part…….1/2 way home she recives a call from the place & the receptionist tells her they messed up on her blood some how & if she could turn around to comeback to retrieve more? WHAAAAT? Sne had to decline, she was 1/2 way home.
    I must say the recp. was kind enough to offer her a gas card, coffee & order dinner for her when she returned.(out of her own pocket) Heck I would have turned around, but again she modestly declined. (God Love her!)
    While all this is going on she starts to have eye problems in one eye, steroid drop’s more pills to take…….now it has escalated to ringing & numbness on that side if her face. Went to P.C.P. just to make sure it was not an ear infection. Nope all part of MS I think? Well I’m sure. Her hearing is diminishing slowly. Medicade or Medicare which ever SSID cover’s? Does not pay for hearing aid’s!
    Not to on a rant but, I have worked from the age or 14 & now I’m 44. Payed my taxes so we all can do the math.
    While the week’s pass & thing’s are getting worse I see her struggle with pain & still trying to get all test done for the Ginelya. I even called Novartis for more info. to help pay for it.
    Now the kidney’s….doc is telling her to cath & she just can’t do it. She want’s too. Some can some can’t the doc. told her. Q. Should she have a qualified nurse come by everyday or every other day to just help w/ that.
    If anyone is on it you know what you have to go through to get the drug.
    Then you know it takes 6 hours in the neurologist’s office to check for reaction.

    Last night I tried calling her several times to see how chiorpracter went, No answer.
    I called her husband & come to find out she went to the E.R. for her ear & numbness….She just could not handle it anymore. I don’t know what the outcome was but, she did have an MRI & more blood work done.
    I feel helpless. I want to wave a magic wand & take the MONSTER away. Not just for her but for all.( mostly her.lol)
    Just a note I don’t suffer from MS. My blood type is O-neg. Does anyone know if I can transfuse some of mine to her to counter act white count? I have gold running through my veins. I would give her a pint(by the way which is the max. they will take @ one time) every day!!!!
    Thanks for reading & hope all is well. Again I pray for all, but one favor…only if you have faith like I do. send a prayer to Michelle. God will know whom you speak of.

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  • Joann author
    6 years ago

    Thank you all for your time & replies.

    I guess what I’m doing is just the thing she need’s.
    Next week is spring break & she has an 8 yr.old sooo..
    I’m going to take her for the day & do hair ,nails,tooties
    ya know have a change of scenery for her daughter & give mom a day of sleeping in & napping all day.

    I own a washer & dryer so….My son will pick up the bedding & I will do a load or 2.

    When the night comes she will have fresh smelling sheet’s & a beautiful daughter to lie next too.

    GPD BLESS ALL OF YOU!!!

  • Joann author
    6 years ago

    Great idea…easy hold & open container’s.

  • Josh
    6 years ago

    I too have had depression rear its ugly head at me. Even now, after taking anti-depressants that really do work, I still have rough days. At times, for me at least, it helps just to know that someone is there. My wife has been a constant help to me. Yes, there are still times when I need to be alone, will not ask for help when it is apparently needed, or even times when I will ‘lash out’. The thing that my wife mentions to me at these times is a simple, quiet, “I know this isn’t you. It’s the MS.” When she says that, or something like that, it often wakes me up to the fact that while I am the one with MS, there are others that care just as much about me, even though I do not see it right away.
    I think that what you are doing, Joann, is magnificent.

  • Monica
    6 years ago

    I know it is hard for her to ask for help because she thinks she is being a burden on people. Please let her know that she is not a burden that you enjoy helping her. Your friend might also be suffering from depression. A lot of people with MS suffer with depression. When I was first Diagnosed in 2011, I had a problem with depression, but than it turned to anger and then to fear. Now I try not to let my MS get the best of me. I have MS it doesn’t have me.
    Just be there for her, tell her how much you care for her and you don’t mind helping her. Tell her helping is what friends do. God bless the both of you and I hope this is helpful.

  • Desirefulfiller
    6 years ago

    Help isn’t a bad word, its actually an act of courage. I have been living with MS since 2001 and alot of things which I took for granted, I have come to realize I can’t.
    Pride, self worth, and belief in yourself and others become more important than before. I say this because your friend is going through so many negative issues about these subjects that she can’t see much positivity in her life. She does have medicare because on tv there are now ads which state no cost or low cost for diapers.
    WHAT ELSE CAN YOU DO > have patient, continue to show your love and support, encourage her, show her moments of kindness for no reason. I was engaged to be married when i got my diagnosis and three days after my diagnosis my fiancee left me. So if your friend reads this maybe she can see how blessed she is to have an amazing and loving friend. while we may not offically know each other, I would be willing to exchange numbers so we can be a source of encouragement for each other and your friend Andreanette

  • dskotsrose
    6 years ago

    i have MS and find it hard to ask for help. I have a friend that just calls and asks me how i am….. as for offering your friend help, the little things help the most.Bring over frozen dinners so when she is having a bad day there is something easy for her to make. use easy to hold containers ect…. offer to help her with the house work.It is the simple things that

  • sharon
    6 years ago

    HI, I ifind it hard to ask for help, even when its offered

    Just do small things she may like..just out for dinner

    Lending a helping hand that is not expected, any act of

    kindness

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