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A New Home Gives New Purpose

October 9, 2015

Governor Malloy shakes Amanda Lustig’s hand following the ribbon cutting ceremony of Ojakian Commons on Friday, Oct. 9, in Simsbury.

SIMSBURY, Conn. – When Amanda Lustig was diagnosed with multiple sclerosis in 2001, it surely was not a surprise. She had been dealing with various symptoms on and off for 10 years before she received a diagnosis, after all. But what was surprising were the twists and turns she navigated, some which left her feeling alone and depressed. Until, that is, she found a new home at Simsbury’s Ojakian Commons this September.

“In the years following my diagnosis, I had to give up my career in New York City as a television post-production account executive,” Lustig shared during a speech given at the opening celebration of Ojakian Commons, New England’s first affordable, accessible independent living community specifically designed for those living with disabilities such as MS held Friday, Oct. 9, at the complex in Simsbury.

“Due to many medical bills and a lot of stress, I lost everything good in my life including my house and my husband,” she continued. “For a long time, I was defined by my illness, but now that I am living here where it is safe, beautiful and peaceful, I will now be defined by my independence.”

More than 6,500 Connecticut residents have identified themselves to the National MS Society, Connecticut Chapter, as having multiple sclerosis, a chronic disease affecting the central nervous system. The cause is unknown and there is currently no cure. Symptoms can include numbness in the limbs, difficulties with vision and speech, stiffness, loss of mobility and, in some more severe cases, total paralysis. The progress, severity and specific symptoms of MS in any one person cannot be predicted.

“I initially experienced vision issues in my 20s, but it was too expensive at the time to have an MRI, so the lesions in my brain weren’t discovered until I was 39 and my entire right leg from the hip down went numb,” said Lustig. “When I was finally diagnosed, the doctors actually told me I had a progressive form of the disease.”

Lustig shared that it was her symptoms that eventually forced her to stop working, as her job required a long commute, a lot of walking through city streets, and hard hours of work. Previous to moving into Ojakian Commons, she shared that even in her own home, navigating daily tasks such as stepping over the wall of the bathtub to take a shower could be quite the feat.

“I still do have numbness in my right leg, and that can make it very hard to navigate steps and stairs,” she said. “I had to give up driving, too. But at Ojakian Commons, everything is easier.”

Ojakian Commons, designed and constructed by Regan Development, is specifically structured to meet the needs of people living with disabilities, allowing them to remain active, vital members of the community.  The barrier-free apartments include many features above and beyond ADA requirements, such as automated door openers, 42-inch wide doorways to easily accommodate wheelchairs and scooters, hardwood and ceramic tile floors, custom horizontal sliding windows for easy opening, fully accessible kitchens and bathrooms and much more.  Additionally, the building has a number of innovative community spaces, enhancing the lives of its residents.  Ojakian Commons has a barrier free wellness / exercise center, a well-stocked library, barrier free raised gardening areas, community space for meetings and lectures, and a technology center.  With these features and programming coordinated by the National MS Society, Ojakian Commons now provides a high quality housing alternative to people with disabilities.

“Since moving in, I’ve transitioned to using a walker instead of a cane, because in this building it’s so much easier to navigate – the doorways are wider, I can roll my walker into the shower with me, there aren’t even door jams to get over,” she said. “And, I haven’t fallen once, which used to happen quite a lot.”

Ojakian Commons is meeting a dire need for people living with disabilities.  Every day, the National MS Society receives calls from people who are not appropriately housed because of their disabilities. Living spaces can be inaccessible, too expensive or not suited to the social needs of a young person living with disabilities, and as a result too many people living with disabilities in the state of Connecticut have been forced to prematurely enter a nursing home.

Of the units available, 40 apartments were available for residents needing services offered by the National MS Society. Seven additional apartments were set aside for people with disabilities needing the services coordinated by FAVARH, the ARC of the Farmington Valley. Both FAVARH and the MS Society will provide a multitude of programming opportunities directly at Ojakian Commons for the complex’s residents.

“Everyone here is so thankful that a place now exists where adults with MS and other disabilities can live that is affordable and that we can feel proud of,” she said in her speech. “We now live in a place where there is always someone who understands the days we feel good and the days we can’t get out of bed. On behalf of all of the residents here, I want to thank everyone who helped get this complex built and for making the next chapter of our lives worth living.”

For more information on Ojakian Commons or to fill out an application for housing, please visit www.OJcommons.com.

About the Connecticut-Rhode Island Chapter of the National Multiple Sclerosis (MS) Society

The Connecticut Chapter strives to provide knowledge and assistance to help people with MS and their families maintain the highest possible quality of life. These goals are achieved through vital national and local programs.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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