Living with MS: Spouses of those with MS could use your support

By Bill Brayer

Did you ever stop to think that people with Multiple Sclerosis (MS) live with the disease 24/7? The side effects of the disease are progressive, so people with MS are continually finding new ways of doing things or need to have someone assist them.

 The Well Spouse Association has a saying: “When one is sick, two need help.” Marriage brings two people together with one of the vows being “until death do us part. Being married to a person with MS is a true test of that vow. Something to think about is “what if the shoe was on the other foot?”

The Well Spouse has one of the most difficult jobs there is. He or she too has a 24/7 commitment. His or her life is often put on hold, in many cases.

If you know of a situation where a Well Spouse has a partner who requires considerable care and attention, you might want to volunteer to give him or her some time off. Everyone needs a breather occasionally to maintain their sanity. Even providing a meal, running an errand, babysitting if there are children, or doing some needed shopping  would be most appreciated.

When was the last time you visited someone with MS at a care-rehab center? Many of the people there hardly get any visitors, especially those with no families.

It is very difficult for a person when he or she is no longer able to live in their own familiar home surroundings.

William L. “Bill” Brayer
President, MS Helping Hands

  1. Bill,
    I am SO grateful to you for writing this. I am on the Board of the Well Spouse Assn., and am a 24/7 caregiver for my ill husband. I wish everyone could read this article and give us spousal caregivers such support as you suggest!!

  2. Thank you for your kind words. I am 78 and have had MS for over 58 years. You can read all ab out me on my website (Bill’s Page) if you care to. My wife (Well Spouse) has been on my long journey (having MS) and there is no way I could haved made it this far without her support. We facilitate an MS support group where we spend the first hour split into two groups: one for the people with MS and the other for Well Spouses – Caregivers & family members. It gives both groups a chance to share their side of living with someone with MS. I hope to speak to more groups this year spreading my story: Living with MS is not an option: It is a way of life”. Bill Brayer

  3. Bill, It is so inspiring to actually find someone that has had MS longer than I. I have been checking out the web to actually see if there was anyone that has had it for more than 24 years. I was 19 when I was diagnosed and I am now 44. It is so hard dealing with this disease when you have been bounced around from medication to medication. There was a time when I was on 12 different pills, one injection and one infusion alll at the same time. I never attended a suppport group, I didn’t want to see the patients that ended up in wheelchairs, walkers, etc. I am one of the lucky ones who can still walk and drive a vehicle, but I had to go on disability due to my thought process. I have quite a few legions on my brain, which takes a toll on my ability to think for myself. My long term memory is quite good, that is the only reason I am still able to drive (Thank God). There aren’t many people out there my age that have lived with MS as long as I have. It would be great to find someone though. I get pretty lonely when people have no idea what I have gone through and still have to go through living with MS. Even my husband of 10 years knows exactly what it is like. 🙁

    Have a Blessed Day!

  4. How true your article is. Thank you for sharing it. My husband has had MS for over 20 years and has recently had a difficult time requiring extended care. He has gone from a person who could walk (with difficulty) to now being unable to move his lower extremities to get up on his own.

    Without the support of my family and friends, this would be much more difficult. Even just listening as the “well” spouse vents their frustrations is very helpful.

  5. I just heard of the Well Spouse Association this afternoon while reading “Ann Landers” if you will. My husband was diagnosed with MS approximately 8 years ago. To say the words life changing doesn’t even come close. There is an 11 year age gap so it was expected that he would retire well before me, we didn’t think this way. My parents say god put us together because I have the patients of a saint, if everyone only knew. As someone stated above MS is not an option, its a way of life. All day, every day, day in and day out.

    Thank you for sharing your story. Its good to know that my feelings are not bad nor uncommon, just part of the process.

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