Nancy O'Dell, co-host of TV's "Access Hollywood", lost her mom recently to ALS. Despite her mom's passing, I am hoping Nancy will continue to fight for an ALS cure. Read more about that, here. The dilemma with ALS is that often after the death of the patient, the family and friends seem to pull away from the ALS community. Except for the small percentage of "familial" ALS cases, I guess most people whose lives have been touched by ALS, feel that the disease will probably never touch their lives again. So they go back to raising money and awareness of cancer, AIDS, or some other disease that is much more likely to affect them or a family member or friend. They prefer to forget the whole ALS experience. And, since most ALS patients die within two years of diagnosis, there isn't a lot of long-term follow-through.
The best possible arrangement an ALS patient can possibly have is a wheelchair van. But not everybody can have this, because either they can't afford it, or they don't have a caregiver who can drive it, or both. In my case, I can't have a wheelchair van for both of those reasons. And that is why I have to depend on Access-a-Ride, which must be scheduled a day in advance, and can be terribly unreliable, or public buses, which can be inconvenient. In my case I also don't have a lot of companions who have the time to spend going places with me, while putting up with those modes of transportation.
Last Saturday, I had a special privilege. My friend Valerie, who unfortunately lost her husband to ALS last fall, picked me up in the wheelchair van she still had, last Saturday. Everyone knows two of my favorite places are Trader Joe, and the beach. Well, Valerie, her 6-year-old daughter Layla, and Louise and I, went in the wheelchair van to Trader Joe, but the rain ruined our beach plans. What a gift to be able to pull into the van without having to do a difficult transfer, ride where we wanted, and when we wanted, on no set schedule! Just a laid-back afternoon of Trader Joe and snacks at a Chinese bakery in Forest Hills.
The good news is that it is going to be 70 degrees today, and Valerie is going to pick me up again for a trip to the boardwalk. I have not seen a beach in three years, and I have been very depressed about this! By the way, disabled people can actually go onto the sand at Long Beach, Brighton, Coney Island, Rockaway, and Orchard Beach, due to mats they have installed. For all ththose skeptics who don't believe me, or who don't think a wheelchair-bound person can enjoy the beach, check out this article or this one, with great pictures
and also a listing of exact locations for the mats. I might add that Forest Hills is one of the many accessible stations of the Long Island Railroad [LIRR], which goes to Long Beach and Jones Beach [the latter with a bus connection from Freeport] For the webpage to look up a list of accessible LIRR stations, click here.
Since Valerie has to return te van this week, today will be my last shot at going in such style. I am really looking forward to it!
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Saturday, April 18, 2009
Nancy O'Dell, Outings in a Wheechair Van, I May See the Beach
Posted by Fern Ellen Cohen at 9:56 AM
Labels: access-a-ride, accesshollywood, accessibility, accessible, ALS, beach, coneyisland, disabilities, disability, disabled, Forest Hills, handicap, lirr, longbeach, mat, nancyodell, wheelchair
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Glad you had a fun day at Trader Joe and hope you'll tell us about your day at the beach. Thanks for keeping on educating the public about the ways people with ALS can improve their lives. You are a big help in furthering the understanding of ALS. You go, girl!
We love you,
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