Morning Roulette - What Body Parts Work?
In our first 10 years of living with MS as a family, Patti would refer to waking up with MS as if waking up and playing Russian Roulette every morning. She would lay there with her eyes closed taking an inventory of what worked and didn't work today.
This was more than understandable as 23 Thanksgiving evenings ago when she went to bed as an able bodied person and mother, awakening Thanksgiving morning she could not walk and barely was able to see or talk.
I suspect I am preaching to the choir here. How many people diagnosed with MS greet the day without a body malfunction check, and then passionately embrace hope?
However I write about MS spouse caregiving and equally passionately we need to wake each day to a pragmatic check list of how can we make the day better for our spouse and our family.
Two years ago I first suggested the idea of a butterfly effect to MS spouse caregiving. Obviously progression and resources vary for each family but there will come a point where spouse caregiver abilities decline while the needs of the spouse with MS increase.
In 2008 the Journal of Neuroscience Nursing described caregivers as hidden patients. If your spouse or partner with MS has only had mild MS and that were to suddenly change well “Financial strain, disease uncertainty, disrupted usual activities, and continuous caregiving … as many as half experience clinical depression.”
Living life believing you will always wake to the empty chamber in life’s game of Russian Roulette is admirable for a gambler. Yet when trying to live with MS as a family the dialogue of physical caregiving and long term care needs to be part of the family narrative.
I am aware of two women diagnosed with MS who found themselves thrust into the caregiver roles one for an ill spouse the other a single parent for a severely autistic child. Stress and MS progression do not interface well.
Embrace hope every day, go ahead and convert Norman Vincent Peale’s “Discovering the Power of Positive Thinking” to large post it notes in large print and put them everywhere.
Just make sure your spouse, partner or designated caregiver is devoting equal time to working on a Plan B, Plan C, and Plan D.
The frustration is who really knows how many people with MS have mild or severe symptoms? Nations with national health services report higher percentages of severe MS and accordingly health services are designed better.
Mobility is so archetypal I believe there is a tendency to simply ‘deal with’ restricted mobility in Multiple Sclerosis rather than try to work with it which invites increased risk of joint contracture.
In the US therapy rarely comes to you unless in a care facility and Medicare has all kind of formulas as to how much it will pay for.
From net surfing MS services in other nations, where severe MS is more reported, I found some pioneering work with knee contractures from Scotland. Passing them along to a physical therapist at Patti’s care facility she took the time to adapt the modalities of treatment and IMHO the results were phenomenal.
Because I’m old school and still use the hug: one person assisted transfer, Patti’s improved abilities to extend her legs when being transferred makes all the difference in the world for our continuing efforts to live with MS as a family.
Editor's note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.
I have the hardest time with my MS during the following season: