Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.
been 49 years since Bob Dylan penned that verse. Yet Monday night while
we pushed and rolled through the staging of Carlisle’s Halloween parade I
personally was startled at the number of wheeled people participating.
Carlisle Halloween Parade 2012
discovered two floats sponsored by care facilities escorted by several rolling
residents. … plus a float promoting a local autism school including parents and
students for grades K – 12. ... and our personal favorite kids roasting marshmallows on a trailer.
bodied people plan or organize anything, people with disabilities physical or
mental can become unintentionally marginalized and/or largely invisible…. It is
a rare community of people who can be genuinely inclusive.
the visual impact was revolutionary for our years of parading … when you factor
in a dependent population due to increasing chronic illness and age plus the
reality of 1 in 88 kids with autism growing in leaps and bounds from childhood
to young adulthood … if anything this parade was also a peek into the future.
course both in Carlisle above and pictured below in Mechanicsburg there was still an overwhelming representation
of fairy tale creatures, zombies, marching bands, cheerleaders, and the limitless
creativity of Halloween.
Mechanicsburg Halloween Parade 2012
town America, at least here in South Central Pennsylvania, turns into the land
of Halloween Parades in October. Just within a 20 minute drive of Patti’s care
facility are seven such parades.
Multiple Sclerosis visual impairment (legally blind) prevents her from seeing the distance from
the curb to the center of the street so last year we began arriving about an
hour before hand and push and roll through the staging area as floats are
assembled, groups organized, and last minute costume adjustments made. Patti
can see up close and enjoy interacting with participants
fatigue and her preferred bedtime of 7 PM becomes less of a problem as we are
heading her to bed about the time most parades are kicking off.
more to go! As we always combine an outing with carry out finger food (which we have been praciticing with for months), it’s kind of
like dinner theatre in the street. J