Thursday, May 28, 2009

iPhone or iPodTouch Can Be Assistive Communication Device

I have wanted an iPod Touch for a while now and I am saving up to get one, but here's a new reason for me to want one: You can buy an "app" for the iPhone or the iPod Touch called Proloquo 2Go and have a small portable text-to-speech device. They are using this also for autistic kids and stroke survivors. Of course you have to be able to use your hands, but it beats lugging around the heavy Mercury, especially on short outings, to the store for example. Click on the title line, above to read the story. Now, I have to do what I can to get this!

Friday, May 22, 2009

Update May 22, 2009

I feel like I have been running around the past few weeks, but it has been a great few weeks of going places and seeing people.

On Mother's Day, I took my caregiver Ellita to Applebee's for a Mother's Day lunch. And one Friday night Judy visited and we went to Anna's on Queens Blvd. Any opportunity to get out of the house and see people, is so welcome! I am grateful for the fun I had this spring. The three Saturdays in Valerie's van, two to the beach, were glorious!

On May 11, I was invited to a research reception hosted by MDA-ALS Division and Wings Over Wall Streetat Chelsea Pier. One of the best parts was utilizing the hour before the event started to explore the pier, which I hadn't visited in years! But I couldn't believe how nice this reception was, and how everybody from MDA and Wings treated me with such attention and caring. I felt so comfortable.

I also attended my annual shareholders meeting at my co-op. I had to laugh when the management company talked only to my aide -- "tell her to sign here", "ask her...etc etc...." the ignorance of people toward the disabled still makes me frustrated, but I don't express myself too much anymore because a) it's an exhausting waste of my precious energy, b) they never get it anyway, and c) when I try to to talk it makes it worse because it scares them, they think I'm mentally challenged, or they think I'm crazy, or all of the above, and if I write on my board, it takes too long. I rely on the aide or friend who is with me, to say "She can hear you; please speak to her", and I am so grateful when that happens. Caregivers and friends of people with disabilities have to advocate for those who can't do it themselves, And the second indignity, if you will, was that my ballot was already signed by the co-op president. "Hahahaha" I said to myself, "I'm here, and I am voting"

May 16 was the 2nd annual Manhattan Walk to D'Feet ALS along Hudson River Park from Charles Street to West 54th Street. Despite rain in the early morning, and dreariness at the beginning of the walk, it turned out to be a beautiful day. I had two new members of Fern's Fighters -- Jessica Aguilar, one of my former AES students, and her friend Jennifer. After the walk, we went to grab a bite. This was a reality check, especially for Jessica and Jennifer. We went to Tenth Avenue between East 56th and East 57th Street. There must have been about 10 reasonably-priced places to have lunch, and I could not get into any of them, because of steps and no ramp. A Boston Market looked promising because they had about 5 steps going up and a wheelchair lift. But, as usual in places with lifts, the lift "wasn't working" , which usually means a staff too lazy to get the key and operate it, or just too lazy to report it broken and get it fixed. The thing with the ADA [Americans With Disabilities Act], is that there is nobody going around to check that retail establishments are complying; they wait until someone puts in a complaint. I may send an email to the corporate website, but I am not about to fight local eateries in a neighborhood that I don't even frequent. So the others went inside to eat, and I waited outside while Ellita got me a takeout meal for later. But I kept thinking of a scene from a movie that I saw recently that took place in the South in the 1930s, where a singer was touring, and couldn't go into certain restaurants that wouldn't serve African-Americans. So his white band members went in to eat and brought food out to him. Hmmm, do you see a parallel here?

One disappointment was that, for the first time in four years, I could not join the Ride for Life, because they did not come within the five boroughs this year. They stayed in Long Island, primarily in Suffolk County. My plans to meet up with them in Nassau County by an Access-a-Ride and Nassau Able-Ride had to be scrapped because of an uncertain ending point and time. People with wheelchair vans don't know how lucky they are. Those of us who rely on public paratransit, though we are fortunate to have it in this area, have to give times and places for pickup; we can't be spontaneous at all.

My quarterly visit to the ALS Clinic at Beth Israel was positive. I am pretty stable -- legs pretty useless, but arms even stronger since physical therapy. So the doctor wants me to continue PT, since it is benefiting me. I have to get my braces adjusted because they are cutting into my feet and killing me. And the shoes I wear with the braces are very stretched out, adding to the problem. So off I go to buy another pair of grossly overpriced shoes. Oh well.......

Thursday, May 21, 2009

What Do I Do, What Do I Say?

Click on the title above to read my newest blog entry, which was published on the official blog of the ALS Association of Greater NY.

Monday, May 4, 2009

Update May 5, 2009



Last Saturday was the third and last Saturday in Valerie's van. I decided that, even though I live in a Russian neighborhood, I can't stay away from hearing Russian spoken, and stores with Cyrillic signs [which I can still read, by the way, from my Russian class at Long Beach HS -- thank you Mr. Ritter]. So when we realized it would be in the 80s, I suggested we set out for Brighton Beach. Now, this is a different population from the immigrants in my neighborhood. The Rego Park immigrants are from the Central Asian former Soviet Republics -- Uzbekistan, Azerbaijan, and Kazakhstan. The immigrants in my neighborhood started to immigrate maybe 20 years ago. They are country people from the farms -- peasants. They dress in old-world clothing, and my neighborhood looks like a scene from "Borat" or "Fiddler on the Roof".

The Russians in Brighton came over a generation before the Rego Park immigrants. Their children are having children already. They are from Russia, many from Moscow. They have actually taken what was a declining neighborhood and made it better. Nonetheless, the Brighton Beach boardwalk is great people-watching. Of course, there is mostly Russian spoken, and you can see everybody having lunch at the restaurants on the boardwalk. The boardwalk is in great shape and twice the width of the boardwalks in Rockaway or Long Beach. It reminded me of Europe. It was a great afternoon

Friday night, Judy and I went to Starbucks, always a place for characters. The baristas all know us, and one of them moved a woman from the handicapped table to another table, in our honor. We noticed that night a character sitting in a stool by the counter, talking at the top of his lungs to the barista about his personal, as if he were in a bar confiding in the bartender. But the best was a strange character with a borderline personality holding a vinyl LP, which Judy happened to catch the title of -- "The Best of Myron Cohen" [no relation to me that I know of. Look up Myron Cohen in Wikipedia. He was a comedian of the Borscht Belt Catskills. And he was always on Ed Sullivan. We sat through his routines while waiting for our British boy groups to appear. These guys were always appropriate for prime time TV, although when they performed in the Catskills hotels, they were always on late at night, so the guests could put the kids to bed. Then these comedians got raunchy. As a child, we used to take a 3-hour drive to Loch Sheldrake, where my Uncle Normie Pasternack and Aunt Ruth [my dad's sister] ran the coffee shop at Brown's Hotel in the Borscht Belt. Hey, I think I have a story to publish online or a chapter of my book.

Speaking of which, there have been too many opportunities for an attention-challenged procrastinator like me. I find myself getting hooked into Facebook and Twitter and losing track of time. Valerie gave me a whole box full of clothing custom-made for Lewis, with velcro closures.

I ran into problems when I found out that NYSARC didn't pay a few of my important bills. I had to get a special cord for my new fax [I found out my old fax was sending black pages, which I only found out after the bills weren't paid and I called NYSARC, who said "oh, yeah by the way....... nice]. So Louise has been faxing them at her office. Despite getting confirmatiions, NYSARC claimed they didn't get some of them. So more followup has to come from me.

The seatbelt on my wheelchair -- busted again.
Debbie came last Sunday. We bullshitted for a while and then went in 80 degree weather to have ice cream at Baskin Robbins.
Ride for Life starts next week. I am possibly going an extra day because they offered to pick me up with a wheelchair van. So I will probably do two days.
Fern's Fighters will be doing the Manhattan Walk to D'Feet on May 16. The Long Island Walk to D'Feet is on Sept 12 this year.
I'm sick of hearing about swine flu.....excuse me, I mean H1N1.......I don't want to be a "piggist"
There is now a Facebook group for AES alums, thanks to this former French/Spanish teacher.
They're building condos across the street from me -- purchase price $1 million and up! Huh???