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. I have no alphabet after my name and my only evidence is our story of Patti’s Multiple Sclerosis progression and my 21+ years of caregiving.
With progression of physical and cognitive symptoms of MS, falling was the clear and present danger, yet in retrospect joint contracture was an increasing stealth danger.
For example, once Patti could no longer safely transfer from her wheelchair to our car we ‘dealt with’ restricted mobility by purchasing a wheelchair accessible van. Safer yes but now Patti barely used her legs.
At her care facility assisted transferring by staff evolved from stand-up lifts to sling lifts.
Only I continued to use the one person transfer technique – the hug. It was this continuing involvement and use of the one person transfer that triggered the treatment of knee contractures.
At a recent Care Plan Review I had to smile as Patti is less than cooperative about her SoftPro Static Gel Knee Orthosis but here again in the care facility era shifts of staff and perspectives eventually found the way that works. Patti is not a morning person and prefers to lounge / nap in bed rather than get up so staff has found that putting them on for two ‘lazy’ hours in the AM saves butting heads with her the rest of the day when therapy could conflict with anything or everything.
On the end result side of the equation, Patti’s ability to extend her legs is better than it has been in years and one person transfers critical to her outings are safer for both of us.
As is too often the case with MS, no one magic bullet addressed this symptom. It took teamwork, it took thinking outside the MS modalities of therapy box, it took my near daily involvement with the care facility era, and above all it took the mindset of ‘working with’ rather than ‘dealing with’ restricted mobility.
Related entries:
Caregivingly Yours, Patrick Leer
web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer
definitely your diligence did pay off significantly, Patrick, for trying to "comply" with what was needed for Patti's optimal health but being willing to work the system and around the system to accomplish it. Definitely another win-win situation with how you take the role of caregiver seriously and how you try your best to be the best advocate for the best care for Patti
ReplyDeletebetty
"‘working with’ rather than ‘dealing with’ " I really like that twist on how to look at it.
ReplyDeleteJan
I agree wholeheartedly with kmilyun! :)
ReplyDelete