Glen Holt and Annette Funicello Intertwined In Our Story
“It’s like being rich and having MS just like Annette Funicello” this was how Patti described life in her care facility while giving a tour to some visiting friends. Hair parlor, game room, library, mega-mega screen TV, piano and musical instruments, and at it’s centerpiece a 100% accessible courtyard with gardens, gazebos, and a glider that can accommodate two able bodied people on one side and two wheelchairs on the other.
Staff buzzed about asking if she or her guests wanted anything to drink or snack on. When her Depends needed to be changed, staff whisked her off to her room where a Hoyer lift transferred from wheelchair to bed for changing and back again.
Younger than most residents, Patti is more peer age to staff who seem to enjoy dressing Patti up with her bling.
Keep in mind Patti is not only non-ambulatory but bedridden (means she cannot reposition herself in bed). Based on what we know of Annette’s progression, their experiences were quite similar.
Patti’s life was just more transparent because I swore I would not let her disappear whether in person or in print. Annette and Glen Holt had the resources to build and staff her own 24/7 care facility in their home.
As a health activist blogger I am frequently fascinated with what sparks Google searches. Last Fall I wrote an entry “Annette’s caregiver pulls back the curtain.”
Glen Holt pulled back the curtain of privacy that had surrounded the toll of progressive MS that had surrounded their life for Canadian TV and their hopes for CCSVI. … Like most CY entries pageviews rise to about 100, I was dumbfounded to notice since Anette’s death the total is approaching 1000.
The MS Spouse Caregiver in me hopes other caregivers are pondering what lies ahead. The growing danger of social media is only those able to see it, having the cognitive abilities to use it, the money to afford it are being heard.
Progressive MS such as Annette Funicello and my wife fade from view unless caregivers speak up.
Nor was this the first time Patti evoked the name of Annette Funicello. We had visited Disney World before and after Annette came out of the closet about her diagnosis of Multiple Sclerosis. To Disney’s credit that announcement and that she would visit the Park sent them scrambling like busy beavers to make everything and anything accessible.
Americans with Disabilities Act was signed into law in summer 1990, but Annette’s announcement in 1992 probably had more impact on vacation facilities. It certainly did for us - so much so that the “It’s A Small World Ride” which was not accessible in 1991 even had a special boat for wheelchair visitors when we visited a year later.
Unfortunately neither Disney nor ADA had given much thought to what happens to people in wheelchairs if a water ride breaks down. Now, I LOVE “It’s a Small World Ride” and how could our young daughter not like being stuck in a ride with singing dolls. Before long I was living a dream singing along at the top of my voice:
“It's a world of laughter, a world or tears
its a world of hopes, its a world of fear
theres so much that we share
that its time we're aware
its a small world after all”
Nor had the ADA nor Disney given much thought to grumpy people in wheelchairs. I was forced to sing louder to drown out Patti's grumping “Will you two shut the f#ck up!” Praising how we owe this all to Annette Funicello having MS, Patti belts out just as the dolls go silent for a moment “F#@k Annette Funicello!, I never liked the wench!”
Families stuck on other boats gasped and grabbed for their children’s ears. Thank God the dolls started back up.
When our daughter would get frustrated trying to explain her Mom’s MS compared to others with "MS Lite", we suggested she use Annette Funicello. “Who’s that?” Fame is fleeting.
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.
How many specialists did you see before finding "The One"?