Wednesday, January 21, 2009

To the Caregiver and the MS Patient

A diagnosis of multiple sclerosis affects not only the patient, but all members of the family. Today’s focus is on the spouse and/or partner.

My neurologist’s office provides extra services (free of charge) to MS patients in the local area. These include an annual workshop which focuses on updates in the field of multiple sclerosis research, a monthly support group meeting for those with MS, and most importantly a special monthly support group just for newly-diagnosed patients and their spouses. Parents and boyfriends are even welcome.

I was invited to participate in these newly-diagnosed meetings even before I was officially diagnosed. Each session focused on a single topic related to MS. Participants usually arrived early; nurse Carol set out some goodies and soda; and a bit of socializing occurred before the session began. This was the time during which patients informally compared notes and spouses often checked to see how others were coping with the changes.

When one person develops MS, the family lives with MS as dramatic as that sounds.

The National Multiple Sclerosis Society provides excellent information specifically for Caregiving and Relationships. Here are some of my favorite recommendations for keeping your relationship strong.

Read this post in its entirety:

Beginner's Guide to MS: To the Caregiver and the MS Patient


  1. Excellent topic as living with MS is rarely about one person. NMSS guides are not bad in fact probably the best of possible help for newly diagnosed. However for the long haul of progression of MS and decades of caregiving you have to remember that you will 'care for' the person with MS longer than you ever knew them without MS.

    Caregivingly Yours, Patrick

  2. Patrick,

    That is so true!! The commitment and love it takes to be in it for the long haul is amazing and overwhelming, too.

    At MS Central, I was aiming this piece at folks who are extremely new with the disease and who are likely dealing with the more common symptoms of fatigue, numbness, pain, etc. Definitely much different than the experience one gains after decades of care.

    Do you know Herrad? She was the feature of last week's Carnival and is PPMS. Her husband is her caregiver and they've had a really tough time of it recently. She developed a pressure sore in July/August and has been bed-ridden since. Maybe, just perhaps, it might heal enough for her to be able to sit in a wheelchair again by March....and she was only dx about 2.5 years ago.

    In a future 'caregiving' post, I will discuss what family members can do to make it easier for everybody. Things like kids helping with laundry, dishes, etc.

  3. Good ideas, Lisa. In my case, the Wookie has only known me with MS and is extremely supportive, going with me to info nights or education sessions, dragging me back home when I'm pooped, and of course, giving me my shot. He's comforting when I have a meltdown and in 3 and a half years, I've never seen him even slightly annoyed at me, even when I'm PMSing.

    Although he and I are together almost constantly after work hours, he still has his "stuff" he does as I have mine.


  4. Excellent info! I always seem to forget that it's affecting everyone. When I'm having a particularly rough day, so does everyone else in the house unfortunately. But I just try to smile and I keep reminding them all how much I love them and appreciate them.

  5. I wish that my local neuros office offered all of those services.
    I have sat and watched how my MS has effected each member of my family and I think it would be great for them to have others to compare notes with.
    Instead, I go to see a therapist once a week and everyone just waits to see what kind of mood I'm in when I get home.
    Everyone should use these services if they're available!