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Friday, September 25, 2020

Top Stories > General

Coping with staying at home for COVID-19: Part 3

Apr 16, 2020

By Patricio Robayo - staff writer

By: CONTRIBUTED PHOTO
Jodi Lynn Gulley, with her son Martin, is staying home during the COVID-19 pandemic and working with Center for Discovery via telephone to continue his therapy.
SULLIVAN — Many businesses and workers, who are not essential, have to “pause” and stay home to help flatten the curve of the spread of Coronavirus Disease 2019 (COVID-19).
Many people now find themselves at home for an extended period. Those who are essential still have jobs and are keeping busy working in their stores or at home remotely. Others are trying to balance working from home and taking care of children.
In this multi-part series, we will try to explore the good and the bad of having to pause and stay home, and those who have to work during this crisis.
Here is a look at how two people in Sullivan County are dealing with being on “pause.


Jodi Lynn Gulley

For Jodi Lynn Gulley from Long Eddy, her main concern is her son, Martin, who has a rare terminal condition called Sanfilippo syndrome.
He was receiving therapy three to four times a week at the Center for Discovery, but since the pause, she has been taking care of him at home and trying the best she can.
Because of COVID-19, she was forced to cancel his 10th birthday on March 22.
A person with Martin's condition has a life expectancy of 10 to 15 years.
Since the pause, she has been in contact with his therapist, so Martin can continue from home with some of the therapy he would have received at the Center.
Because of Martin's condition, Gulley has already been doing therapy at home, especially during the winter months, when it is too dangerous for him to venture outside.
“They've taught us things to do at home with him. We're doing the best, but we're not professionals. So there are things that we probably aren't doing to the extent that they would,” said Gulley.
She said at the Center they were already practicing social distancing because of the vulnerable population they serve.
Because of Martin's condition, she is already very strict when people who are ill come in contact with him.
“If his therapists have any sight sniffles or sneezing or coughing or anything, we don't see them. Just a common cold can kill him, so we really are diligent,” said Gulley.
Gulley feels fortunate that she has already been staying home for the most part with Martin before the pause took effect, but says her heart goes out to those parents who were not ready to cope with a special needs child.
She is unsure of what the future might hold and how things will go forward with Martin's therapy.
Around this time, Gulley says they meet with the school district for their Individualized Education Plans (IEP) and setting up the summer program for her son.
“With school being out, we are unable to do that,” said Gulley.
However, Gulley says she will be able to do the IEP meeting over the phone with her district.
She is terrified that the longer the virus spreads and causes schools to be closed, Martin will start to regress and lose the things he has been taught.
“We know if he goes with big gaps [of no therapy], we start seeing things disappear, and then we have to work with them and rebuild,” said Gulley.
However, she has been participating in telemedicine with each of Martin's therapists.
The physical therapist talks to Gulley on how to properly stretch and move Martin in areas where they find change or challenges.
Martin's Occupational Therapist and Speech Therapist are discussing with Gulley things she can do at home to help with Martin's fine motor skills and decision making.
Furthermore, Gulley said, “I absolutely agree with the shutdown because I feel that it's going to be the only way we can stop this virus from spreading. But we need to find a way to help these kids with special needs or learning disabilities to be able to keep some services somehow if this is going to be long term.”


Aldo Troiani

For Aldo Troiani and his wife Carol Smith from Youngsville, they have been working around the house, streaming movies, making art, and making music.
Troiano and Smith are musicians in the band Little Sparrow, and due to the COVID-19 pause, they have had to cancel several shows.
Their monthly program at the Sullivan County Historical Society and Museum is on hold until the museum can reopen.
So instead, they go for walks when they can with their dogs, Dookie and Max.
“The walks are mainly for exercise,” said Troiano,
Whenever they go out, Troiani brings his camera.
“Nature photography is one of my passions, and I bring a camera mainly to post [photos] for entertaining friends and followers on social media.
Before the pause, Troiani was a camp photographer at Frost Valley during the school year.
He also volunteered with several non-profits, but all programs that he was involved in have been canceled.
Smith hopes to get back to working at the Sullivan County Historical Society and Museum when it reopens and says they are lucky to be healthy enough to adapt.
The virus has already touched many people they know, and they feel sorrow for those genuinely suffering.
“One of our musical collaborators has three COVID-19 sicknesses in her family. A friend of mine in Westchester County is doing COVID-19 testing as well as caring for her 84-year-old dad, who is a personal friend of mine. Our downstate friends are right in the mix,” Troiani said.
He added, “Many of my former colleagues in the nursing home world, I was an administrator for 34 years, are working extremely hard to preserve life and safety for their residents,” said Troiano.
“We had planned to spend the month of April in Florida, but those plans obviously changed. We are “vacationing” in the Catskills,” said Troiani.
“I did a repair on my garage door that would have taken a skilled technician a few hours. I did it in a week and a half, but I did it,” added Troiani.
Moreover, Troiani takes turns hosting Jambalaya on WJFF Radio Catskills Saturdays at 1:00 p.m.
WJFF recently implemented a rule that only staff can enter their studios. Therefore all the show hosts have to work remotely.
“I recorded a show in my back room using my MacBook with Garageband and sent the program to the station using WeTransfer. Creative adapting with technology,” said Troiani.
He added, “We are staying home, streaming movies, practicing our music, working with our art and photography, and staying safe. Relatively speaking, there's nothing to it. Thank God we get to live here.”

If you have a story on how you are coping with staying at home during the COVID-19 crisis and would like to be featured, email probayo@sc-democrat.com.








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