We are writing to tell you about a difficult situation faced by a member of our community.
Eight months ago, Claudia Jacobson of Andes was diagnosed with Devic’s Syndrome, a rare autoimmune central nervous system disorder, a form of multiple sclerosis (MS). The disorder, which progresses rapidly, affects the optic nerve and the nerves in the spinal cord, leaving patients with paralysis, vision problems, and difficulty speaking and swallowing. There is currently no standard treatment for Devic’s syndrome. Some patients recover some lost function, while others may have residual deficits. Severe cases of Devic’s may be fatal.
Claudia first felt sick on April 4, 2007, her 54th birthday. She found herself in the Intensive Care Unit of Albany Medical Center. After five months at AMC, she was transferred to Countryside Care Center in Delhi for rehabilitation. She came home on November 19th.
Little by little, Claudia is regaining movement and strength. Her speech has returned, but she depends on a feeding tube for sustenance. She still cannot walk, and spends much time in a special hospital bed. A Hoyer lift helps get her into a wheelchair, but it is difficult navigating around the apartment. John, her husband, is responsible for his wife’s care 24 hours a day, and has been unable to return to work and earn a steady income at the Catskill Watershed Corporation.
Despite some public assistance and support provided by friends and family, Claudia and John need our help.
Here’s what’s needed:
- Help at home, especially getting Claudia out of bed to dress, bathe and eat. Claudia would enjoy outside company, and John could use some time to run errands (and go to work!), not to mention have some respite from the demands of each day.
- Transportation. Claudia has two or three doctor appointments, and a chemotherapy treatment at AMC each month. John has a car, but needs someone to accompany him to help Claudia in and out of it.
- Most equipment needs are taken care of, and major apartment renovations are on hold to see whether they will be needed as Claudia’s improvements continue. But little things would be welcome:
- Twin sized sheets and bedding for her hospital bed.
- Large print books or magazines (her vision is returning, but small print is difficult).
- Music CDs – Claudia has eclectic taste in music, but especially loves folk and Celtic music, swing and jazz standards.
- Movie DVDs – comedies, nature or dramas. No thrillers, or depressing historical or political documentaries, please!
- Holiday cheer. While both John and Claudia have allergic reactions to traditional evergreen trees and bows, they have a grape-vine tree they’d like to put up. “We haven’t even thought about Christmas,” John says. Some decorations might lift both their spirits.
- Money. Many expenses (like $400 a month in special food used with the feeding tube and pump, and the $400 paid out of pocket for the bed and lift) have caused a severe cash flow problem in the Jacobson household. Paying the rent, putting gas in the car, covering utility costs, meeting co-payments on diabetic supplies are continuing obligations that are tough to meet, especially without John’s income. Fundraising events held this summer at Hunting Tavern and the Andes Presbyterian Church were very helpful. But the need continues. Please consider sending a contribution to John and Claudia, c/o Alice Jacobson, 55 Dibble Road, Andes, NY, 13731. Please make checks out to Alice.
While we count our many blessings this holiday season, we don’t have to look far to find genuine need. It takes a village to care for one another, especially when the systems we think are in place to help us allow one of our own to fall through the cracks.
If you can help John and Claudia get through this difficult period in their lives, please contact Laurie McIntosh (845-676-4727), or John’s parents, Bob and Alice Jacobson (845-676-3238).
Diane Galusha for
Friends of Claudia and John ~