Wednesday, August 22, 2007

Caregiving: MS & Family

“EVERYBODY looses something”. This phrase has been swirling around in my head since watching a You Tube video on ‘Family & MS’ produced by the MS SOCIETY (“UK's largest charity for people affected by Multiple Sclerosis”).


Sandy Burnfield, who is both diagnosed with MS and a child psychiatrist, talks about “some of the family issues that multiple sclerosis can bring about.” Family & MS - Part 01


Sandy labels it the “dark side” of Multiple Sclerosis. Too often I have found material offered by MS organizations is somewhat perky and has left me wondering what ‘we’ were doing wrong over these 22 years of living with ever progressing MS as a family. Kudos to the Brits on some straight talk. God Save the Queen!  


While yes “everybody looses something” a family can also find something else. I, for example, found the gift of becoming the nurturing and basically single parent for our daughter from the age of 18 months on. Men are rarely enabled with such an opportunity.


Anecdotal evidence I know proves nothing but it can provide a glimpse. Fatigue is a dominant symptom of MS. Patti’s constant fatigue and need for periodic bed rest controlled our family activities. Rather than let bed rest disrupt family, while Patti rested Megan and I would simply use the time for “us”.


Play Doh and ‘the shell game’ were two of our favorite father daughter activities. <grin> In our old video archives I found this one minute animation Megan (then 7 yrs old) and I made one afternoon while Patti rested.


caring on: Multiple Sclerosis & family - the shell game

(Some readers have noted they have challenges using the AOL video display. For your convenience you can simply use the links to view the video directly.)

You Tube

Google Video


Yes, there is a “dark side” to living with MS as a family and “everybody looses something”. To me, it falls on the caregiver spouse to create balance.


No, it is not easy but you may just “find” something even more valuable than you lost.


Caregivingly Yours, Patrick Leer


  1. ......what a treasure!  Yes you found opportunity and creatively met the challenge of special time.

  2. I am finding that you have a unique talent for making your family balance one way or another. Also, you do some pretty cool videos for us to watch!! <grin>
    Thanks for sharing, Patrick!

  3. so true! have a good weekend and how is the daughter doing at college? ok i hope
    and i hope patti is doing well


  4. I loved the video! :o) I want to thank you so much for writing this journal. When I read really helps me. :o) You make it easy to understand ms better then any other web site that I've gone to. Thank you. :o)

  5. Love the video. That alone shows what a wonderful father and upbringing your daughter had. This post hit home in alot of ways. I agree sometimes what we gain is so much more than what we lost. I lost my hearing to deafness, but in the process I gained me. I often wonder if I would of ever discovered myself on a spiritual level had I never had to go down that path. I know my deafness has given Doc and I a closness that comes from dealing with a disability together. (Hugs) Indigo

  6. Such positive, life-affirming words Patrick.  Where comes such wisdom at your tender age lol?  Those opportunities men don't usually get are so precious, I applaud you for taking advantage of them as they arrived at your feet.  The treaures called memories you make now will last Megan's lifetime, as Patti goes through what she must.  Write a book someday.  xoxo CATHY    


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