- Dear Abby
- Games & Puzzles
- Events & Exhibits
- Food & Drink
- Arts & Music
- Movies & TV
East Lyme - The disease manifested itself slowly and took 37 years to define itself.
Multiple system atrophy (MSA). At least, that's what Rachel and Robert Pfanner recently learned Rachel probably has - a rare condition with symptoms not unlike that of Parkinson's disease.
It's the latest diagnosis in a life filled with lack of muscle control, constant headaches, dizziness, loss of balance. And the list goes on: tight, achy and weak muscles, blood pressure that shoots up and down for no reason, nystagmus (eyes that track back and forth uncontrollably).
"She literally just woke up one day and couldn't see properly," Robert said.
There's no known cure, but for Rachel, it was a relief to finally put a name to her condition.
"Since I've gotten the diagnosis, I found on Facebook a whole community of people who have MSA who have all of these symptoms," said Rachel, her speech slowed by the condition. "It's a relief to have other people to talk to."
Dealing with the condition as a couple was one thing; Robert, 40, is there every step of the way, from helping Rachel out of their van and into the house to taking care of Rachel's service dog Josie and family pets Odessa the black Lab and Lily the cat.
But dealing with the reality of day-to-day life with a wheelchair has been quite another.
Rachel, a former preschool teacher who graduated from Mitchell College in 2001, began using a wheelchair when the Pfanners moved from their three-level home to a single-level house in Niantic five years ago. Rachel, 37, has an easier time getting around in the Niantic house since everything is on one floor.
But she is now confined to her motorized wheelchair, and moving around in the 1,200-square-foot house sometimes means scraping the walls or putting dents in them.
"That wheelchair, when it hits something, it'll just destroy whatever it hits," Robert said.
To even enter the house, Rachel must use the back entrance - past a fence and up a ramp that Robert, a 1990 graduate of East Lyme High School, built for the old house and took with them when they moved.
The couple met at Roger Williams University as college students and married 13 years ago. Rachel can only sleep in a reclined sitting position, so she sleeps on a hospital bed while Robert sleeps on a twin-sized mattress on the floor next to her. Where else would he sleep? Lying next to Rachel, albeit on the floor, maintains a semblance of their married life.
And the kitchen? Forget about cooking. Muscular difficulties aside, on a good day, Rachel can't even reach over the stove to turn the burners on and fix herself lunch - the burner knobs are inconveniently positioned on the far end of the stove. She can't fit under the kitchen sink to do dishes. She can't reach half the cabinets or the top shelves of the refrigerator.
A civil engineer who works for his father's company in town, Robert has made the bathroom accessible for Rachel and removed many of the doors in the house because it's simply too difficult for Rachel to open and shut doors or get through narrow door frames.
But as the sole breadwinner of the family and with already too many medical bills to pay, Robert cannot afford to do more on his own. So the kitchen remains inaccessible to Rachel, as does moving around comfortably at home without worrying about accidentally putting a hole in the wall.
"It can be difficult at times," Robert said. "Everything is expensive."
The couple put together a video and submitted it to ABC's "Extreme Makeover: Home Edition" in January, but ABC has essentially canceled the weekly show that helped struggling families by building them new homes.
The Pfanners also contacted various television morning news shows, but no one has come to feature their story yet, Rachel said.
A former classmate of Robert's from East Lyme High School is now attempting to reach others to get the Pfanners the help they need.
"There are so many things that can be done to make daily life easier on this family, if only they could get some help to do so," Erin Foote Hernandez, East Lyme High School's Class of 1990 Reunion Committee secretary, wrote in an email.
To watch the Pfanner's video submission to "Extreme Makeover," visit http://youtu.be/Gyucninbtz4. To help the Pfanners, email firstname.lastname@example.org.