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My Husband Has MS

My husband was diagnosed with MS early 2002. To help him (and me) understand more – I started reading everything I could about MS — symptoms, medication therapies, etc. We both see how it has taken a toll on him. Wish there was more I could do to help him.

I have been running a local MS support group several years. This has helped me more than anyone will ever know. Not only do we meet others that we can visit with and learn from – we are able to show other couples that it is not the end of a marriage (if the spouses don’t want it to be).

I hope that those of you on this site will help me understand more about how the disease impacts you and what it is others can to to help you (listen more, learn more, hold doors open for you -vs- letting you struggle…..). The hardest part for my husband seems to be the fact that I had to re-join the workforce. It is not an issue for me. It wasn’t 13 years ago and it’s not now. I am sure that if I were the one with a disabling disease – he would do what needed to be done. We had been together for 12 yrs before his first episode. Thank you for letting me tell our story.

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

  • jordandossett
    3 years ago

    I am glad to see a married couple posting, also to hear you say that you do not feel that MS has to be the end of a relationship. Sadly for me (you can click my name to read another post where I cover lost relationships) I let MS rob me of my senses and I ended a long term relationship. Communication was always a problem in that relationship and when disease modifying medications first came on the market and the idea of treating MS came about and not just having MS – that required a lot thinking, feeling and talking.

    I shut down, ended that long term relationship and developed a long term symptom of many diseases: Regret. Now some 7ish years later I am married to a wonderful person who I can and do speak to openly about everything, especially my MS. We talk about the sexual issues, pregnancy, medications, etc.

    In trying to address how MS affects me and what others can do to help, your timing cannot be more perfect. My wife is struggling with the idea of being a caregiver. She would read your post and then sulk around the house for a couple hours convinced she is a bad person because she did not think of posting it or does not think she is a good caregiver. Because of this and the resources we found for caregivers I am in the midst of writing a some articles in being a caregiver in today’s age. Ok, back to point… You don’t really need me to say that MS affects everyone differently so it is hard to say “do this for me” as what I need may be different than your husband, I do think there is a shared list of things that all people with MS need help with, those things include:

    – taking medications (properly): meaning on time and correctly, you can check for interactions and one key thing is how long a drug remains in your system, example is baclofen a common MS drug only remains in your system 2 hours, is this the best drug for a spasm or is gabapentin better (I write this example assuming both medications have been prescribed).

    – situational awareness: this is just a term that I use for being aware of our surroundings. Many ppl with MS have issues with gait and shuffle their feet, I for example am a fall risk, take Ampyra and use a cane of leaving the house. My wife is an incredibly disorganized and there are shoes, packages, and whatnot littering the floor in the entire house. There are days I can’t get from the bed to the bathroom without climbing or falling. We need you folks to be aware of what you are doing, maybe you can step over something but chances are we cant.

    – keeping us cool. I screw this up all the time. I know it’s hot outside, so do you, I own an ice vest but do I have it on? Did you wet a paper towel and put it around my neck? Did you say anything to me when we were invited to the BBQ on Sunday at the park when the weather is set to be over 100?

    I think these are the top 3 that I can come up with. I am sure other folks can come up with other things they would like their friends and family to help with. I do have one thing to add about friends and family that is missed the most… When friends and family ask you go here or go there and you have to say no or cancel at near the last minute they are not so forgiving, there are little words we can use to describe why we can’t go, but trust me/us when we tell you – we can’t make it.

    And last, how MS affects me, my post is already so long… But the top 3:

    In 2015 a lesion I have behind one of my eyes decided to act up. I have to see a neuro-optimologist so they can figure out what is going on, I have blurred vision pretty much every day so that limits work, fun, and life,

    Also in 2015, my hands started to tremor. I have had this happen before, but it passes. The tremors that come now are more persistent. The stinky part of this is that I am an artist, so this complicates drawing and such.

    Last, I am tired and in pain. I have always been tired and am in Nuvigil. I just discussed adding anphetamines but they have a heavy price and carry a weight of possible addiction, for the pain we have just added lyrica and it seems to be doing the trick to a large degree.

    Until next time,
    Jordan

  • peetee83686 author
    3 years ago

    Jordon: Thank you responding to my post. I also have a hard time being considered my husband’s “caregiver”. I am his wife – and stepping up to assist him where I can. It took me going to an AARP caregivers task force to work with those that are paid to be caregivers to understand – yes, in one respect I am a caregiver. For me – I am still his wife first. I. Have found that we have to look ahead on things to make like a little easier for the both of us. Today I did a lot of cooking and freezing of meals. That way – meals are easier to fix during the week. (Fried up 10 lbs of hamburger and froze it in 10 meal size bags, made 2 gallons of lentil soup and froze meal size bags….). In our house – we are both ok with top roman and a sandwich if need be.

    I found that I am not able to keep the house as clean as I once used to – my husband does what he can. We have discussed hiring someone to come in and help deep clean every 6 months – that way we should be able to keep a better handle on it.

    I found that we both need to take time to pamper ourselves. We go to have a massage every once in awhile. Me for the relaxation – him to relieve some of the muscle tension and pain from the MS.

    We both keep things picked up off the floor as neither one of us is able to step over stuff safely.

    Maybe your wife will post some of her thoughts and ask questions. We have been together for 31 years and have learned that it’s easier for everyone if you don’t get overly emotional about thing you can’t change and to sways try to take everyone’s feelings into consideration when making major decisions. Is not always easy – and doesn’t always work. But we do the best we can.

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