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.
IZEA
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Showing posts with label WalktoD'Feet. Show all posts
Showing posts with label WalktoD'Feet. Show all posts
Monday, June 8, 2015
Walk to Defeat ALS in Manhattan and Ride for Life
These photos above are of the 2015 Ride for Life, now in its 18th year. The gentleman seated smack in the middle with the gray beard, is Christopher Pendergast who has survived with ALS for more than 20 years, started the Ride with a team of guys with ALS who rode their wheelchairs to Washington DC from Long Island. Nowadays, they ride from Montauk all the way to Manhattan. In the last couple of days, they pass through Yankee Stadium, home of Lou Gehrig, as well as Lou Gehrig's real home in East Harlem. On the last day, they go over the Brooklyn Bridge, accompanied by a group of bagpipers. The pictures above are of the closing ceremony which I attended with Louise Foisy and Lynette Wahid. In past years, I rode from washington Square Park to Columbia University, a leg that the Ride decided to cut out this year to shorten the last day. For 12 days, ALS patients ride their wheelchairs with walkers alongside them. Some ride the whole 12 days, and some for a day or two. But along the way, they are met by many organizations and schools full of children and teens who have raised millions of dollars. The money goes to grants for respite care and equipment for patients, and to research. For more information, go to http://www.rideforlife.org. Christopher is married to Christine [yes, Chris and Chris] and she has been right by his side for several decades, as well as their son and daughter. They have been a very active family for the cause. Before ALS, Christoper was a science teacher in Northport, Long Island.
These pics above are of the 2015 Walk to Defeat ALS in Manhattan. My team was small this year -- Lynette Wahid and Danielle Aquaviva, but we will be collecting donations through October. My team -- Fern's Fighters -- will also walk in the Walk to Defeat ALS in Eisenhower Park on Long Island on September 19 this fall. Once again, Danielle designed some cool tee-shirts. They did something different for the Manhattan Walk to Defeat this year. Formerly, the walk started around the West Village -- like Charles Street -- and ended at West 55th Street. This was a nightmare for people who came in cars, which they parked at the starting point and then had to get themselves from 55th all the way down to a spot about three miles away where they began. This year, we started at about Houston Street and ended in the same spot. Of course, you can't please everyone; there were complaints that the point where we turned around to come back was confusing. And the pier [45] where the walk started had nowhere for Access-a-Ride to pull in. So he dropped us at Pier 40 and Danielle called them to change the pickup point for the return to Pier 40. I should also mention that they served the best ARTISINAL pizza at the end of the Walk. I honestly don't know why more people don't join us for the Manhattan Walk. In many ways, I prefer it to the Long Island Walk, especially since I can use Access-a-Ride and take my motorized wheelchair.
Fern's Fighters are registered for the Manhattan Walk and for the Long Island walk to Defeat, which will be on Saturday, September 19. I would like more people to join us at Eisenhower Park in September, but if you just want to make a donation, go to this link The new tee-shirt design, by none other than our team designer Danielle "Nellie" Aquaviva -- will be displayed soon.
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Monday, December 8, 2014
DVT [Blood Clot] and Cellulitis Put Me in the Hospital
So when the summer ended and my trips to Rockaway Beach became history, I suffered withdrawal and a bit of a blue mood. Every year when I enter winter mode, I get a little sadder. We had a bit of a heat wave, but the businesses at the beach close up after September and my main beach buddy Louise became very busy directing her Gingerbread Players in Chekhov's "Three Sisters" which took up her weekends anyway.
The bright spot was the Walk to Defeat ALS in Eisenhower Park, Long Island on September 28. Danielle designed a fantastic tee shirt for the team:
She is a very talented graphic designer so if you want to hire her to do a design, let me know. Anyway, she designed the shirt with bunnies -- of course -- and pirates to honor my friends in the Cayman Islands. One of my best jobs was Area Sales Manager for Cayman Airways in the tri-State area, in the early 1990s, and a lot of my Facebook friends are from Cayman. Thanks also to my team members Diana, Janis Hirsch, Deb and Andrew Wolfe [who brought the wrap sandwiches from Farmer Joel in Oceanside, Long Island, and always awesome fundraisers] and Sofia and Elan Wolfe.
In late October, a turn of events put my life in a tailspin that I am only now recovering from. I began to notice my left leg -- especially the knee -- getting harder to manage when I tried to stand. I chalked it up to my injury at the beginning of 2013, and prayed that it didn't mean my disease was progressing. By the beginning of November, my left foot and leg were blowing up to twice the size of my right foot and leg. I was concerned but not alarmed, although I should have been.
By Sunday 11/9, my aide Gulshan made me cancel plans to go to a play that my friend Louise directed. Gulshan insisted I go to the ER at North Shore/Long Island Jewish Forest Hills Hospital , which is just around the corner from my apartment. I fought her tooth-and-nail on this. I had had some bad experiences in hospitals, most notably in Beth Israel overnight in 2005 when they wouldn't let me keep a cellphone or even a speaking device except for a writing board that the nurses kept moving and wouldn't give it to me because they didn't know what I was asking for -- despite a sign over my bed indicating "Patient needs writing board to communicate". Enter the morning shift of nurses -- one of whom kept laughing at me when he didn't understand me. And there had been visits to the local ER in Forest Hills that had been disastrous. So I avoided hospital stays at all costs, despite promises from my friend Michael [a big kahuna in North Shore/LIJ System's administration] that the hospital was getting better.
So, when the doctor looked at me in the ER, told me I had cellulitis and intravenous antibiotics were a good idea, and suggested admission until at least the next day, I went kicking and screaming. I was in the ER waiting for a bed from 3:00 pm on Sunday until 5:00 am Monday. Then I went up to a room, and ended up staying until Wednesday at 6:00 pm. Once admitted, my aides are not paid, but Gulshan stayed with me until 6 am Monday and then Cheryl came and stayed until about 2:30 pm and ran back to the apartment to get me some things, as well as meet Chelsea's Auntie Nancy to pick her up and take her to her house. By then, I learned that I would not get out that day - far from it. By then, I also learned that a blood clot was suspected and I would be the hospital's "guest" for "quite some time" as the nurse put it. I was terrified because I pictured MRSA and staph and antibiotic-resistant microbes creeping into my body and causing a worse scourge and possibly killing me. So Louise came to see me on Monday night and we discussed my Health Care Proxy documentation that was now in a forgotten place somewhere in my apartment and how important it was to find it. I had no idea when I would get out of there.
I must say that things have improved immensely in technology since 2005 and in hospital policy as to the electronics they allow. Not only was I allowed to keep my iPhone, but I had brought my charger and the nurses gladly kept charging it for me in an electric outlet right in back of my bed. I couldn't have asked for better care all around. The nurses and LPNs were great! On Tuesday when the doctor came in and told me that a test I took that morning had revealed a blood clot [aka Deep Vein Thrombosis or DVT] and that I would have to stay one more day, I questioned whether I should go home so soon. DVT is a serious thing -- if my blood clot had gone further -- to my lungs and/or heart, it would have been much more serious and led to a much longer hospital stay. At its worst, it could have been fatal. On Wednesday evening I was discharged with a 7-page discharge plan. I left with prescriptions for an additional week-long round of oral antibiotics, steroids to wean me off them within a week, and a regimen of a new generation of blood-thinner [Xeralto] that didn't require weekly blood-monitoring and no dietary restrictions. The latter is a big deal, because the old generation of blood thinners like Coumadin and Heparin required a weekly blood draw and also restrictions on some of the veggies I love most [high in vitamin K] like cabbage, spinach, broccoli, kale and brussels sprouts. So I was a happy camper as far as that was concerned. The blood thinner is to prevent further blood clots, but according to the doctor, the actual blood clot I already had, would clear itself.
So I came home on Wednesday, Chelsea's Auntie Mary Ann brought her back on Saturday, and I will follow up with my primary care doctor next Tuesday. I have to say I felt a little crappy for about a week after I came home, from the antibiotics and the steroid-weaning, but when that was over, I actually felt better than I had in several weeks. I guess I didn't realize how sick I really was. The weakness and fatigue [and bluer-than-usual disposition] in the weeks preceding my hospital admission, I had chalked up as a norm with my disease, and sadness at summer leaving and winter coming on. And I won't be so afraid of checking out an emergency at my local North Shore/LIJ Forest Hills Hospital in future. I won't say that I will check in there as a spa hotel, but if I have to stay, I won't be so terrified.
The bright spot was the Walk to Defeat ALS in Eisenhower Park, Long Island on September 28. Danielle designed a fantastic tee shirt for the team:
She is a very talented graphic designer so if you want to hire her to do a design, let me know. Anyway, she designed the shirt with bunnies -- of course -- and pirates to honor my friends in the Cayman Islands. One of my best jobs was Area Sales Manager for Cayman Airways in the tri-State area, in the early 1990s, and a lot of my Facebook friends are from Cayman. Thanks also to my team members Diana, Janis Hirsch, Deb and Andrew Wolfe [who brought the wrap sandwiches from Farmer Joel in Oceanside, Long Island, and always awesome fundraisers] and Sofia and Elan Wolfe.
In late October, a turn of events put my life in a tailspin that I am only now recovering from. I began to notice my left leg -- especially the knee -- getting harder to manage when I tried to stand. I chalked it up to my injury at the beginning of 2013, and prayed that it didn't mean my disease was progressing. By the beginning of November, my left foot and leg were blowing up to twice the size of my right foot and leg. I was concerned but not alarmed, although I should have been.
By Sunday 11/9, my aide Gulshan made me cancel plans to go to a play that my friend Louise directed. Gulshan insisted I go to the ER at North Shore/Long Island Jewish Forest Hills Hospital , which is just around the corner from my apartment. I fought her tooth-and-nail on this. I had had some bad experiences in hospitals, most notably in Beth Israel overnight in 2005 when they wouldn't let me keep a cellphone or even a speaking device except for a writing board that the nurses kept moving and wouldn't give it to me because they didn't know what I was asking for -- despite a sign over my bed indicating "Patient needs writing board to communicate". Enter the morning shift of nurses -- one of whom kept laughing at me when he didn't understand me. And there had been visits to the local ER in Forest Hills that had been disastrous. So I avoided hospital stays at all costs, despite promises from my friend Michael [a big kahuna in North Shore/LIJ System's administration] that the hospital was getting better.
So, when the doctor looked at me in the ER, told me I had cellulitis and intravenous antibiotics were a good idea, and suggested admission until at least the next day, I went kicking and screaming. I was in the ER waiting for a bed from 3:00 pm on Sunday until 5:00 am Monday. Then I went up to a room, and ended up staying until Wednesday at 6:00 pm. Once admitted, my aides are not paid, but Gulshan stayed with me until 6 am Monday and then Cheryl came and stayed until about 2:30 pm and ran back to the apartment to get me some things, as well as meet Chelsea's Auntie Nancy to pick her up and take her to her house. By then, I learned that I would not get out that day - far from it. By then, I also learned that a blood clot was suspected and I would be the hospital's "guest" for "quite some time" as the nurse put it. I was terrified because I pictured MRSA and staph and antibiotic-resistant microbes creeping into my body and causing a worse scourge and possibly killing me. So Louise came to see me on Monday night and we discussed my Health Care Proxy documentation that was now in a forgotten place somewhere in my apartment and how important it was to find it. I had no idea when I would get out of there.
I must say that things have improved immensely in technology since 2005 and in hospital policy as to the electronics they allow. Not only was I allowed to keep my iPhone, but I had brought my charger and the nurses gladly kept charging it for me in an electric outlet right in back of my bed. I couldn't have asked for better care all around. The nurses and LPNs were great! On Tuesday when the doctor came in and told me that a test I took that morning had revealed a blood clot [aka Deep Vein Thrombosis or DVT] and that I would have to stay one more day, I questioned whether I should go home so soon. DVT is a serious thing -- if my blood clot had gone further -- to my lungs and/or heart, it would have been much more serious and led to a much longer hospital stay. At its worst, it could have been fatal. On Wednesday evening I was discharged with a 7-page discharge plan. I left with prescriptions for an additional week-long round of oral antibiotics, steroids to wean me off them within a week, and a regimen of a new generation of blood-thinner [Xeralto] that didn't require weekly blood-monitoring and no dietary restrictions. The latter is a big deal, because the old generation of blood thinners like Coumadin and Heparin required a weekly blood draw and also restrictions on some of the veggies I love most [high in vitamin K] like cabbage, spinach, broccoli, kale and brussels sprouts. So I was a happy camper as far as that was concerned. The blood thinner is to prevent further blood clots, but according to the doctor, the actual blood clot I already had, would clear itself.
So I came home on Wednesday, Chelsea's Auntie Mary Ann brought her back on Saturday, and I will follow up with my primary care doctor next Tuesday. I have to say I felt a little crappy for about a week after I came home, from the antibiotics and the steroid-weaning, but when that was over, I actually felt better than I had in several weeks. I guess I didn't realize how sick I really was. The weakness and fatigue [and bluer-than-usual disposition] in the weeks preceding my hospital admission, I had chalked up as a norm with my disease, and sadness at summer leaving and winter coming on. And I won't be so afraid of checking out an emergency at my local North Shore/LIJ Forest Hills Hospital in future. I won't say that I will check in there as a spa hotel, but if I have to stay, I won't be so terrified.
Tuesday, May 4, 2010
Home Care, Chuck Schumer Rocks, Two new passings, MDA Gives Me An Award
First of all, Senator Chuck Schumer rocks. Read this letter he wrote to the disabled community of New York endorsing the Health Care Reform Bill and the Community First Choice Act, which helps chronically ill and disabled people stay at home and avoid institutionalization [i.e. nursing homes].
My condolences to the families of Maria Pizarro and Julie McCourt, two wonderful ladies who attended the Beth Israel ALS Association support groups with their families, and who lost their fights with ALS on the same day -- Sunday, May 2. I will miss them. This disease is so cruel!! They both had loyal spouses who were involved in their care, and a group of friends and family members who were there to support them. They had everything to live for.
I humbly announce that I am the recipient of the NYC MDA's ALS Division's Personal Achievement Award for this year. I could very likely appear on the annual tri-state NY metropolitan TV broadcast of the MDA Labor Day Telethon.
May is ALS Awareness Month and for every day in May, MDA presents a picture of an ALS patient and his or her "story". I have been selected from the NYC area to represent my region. Its called "Anyone's Life Story" and you can see my story on May 26, on the MDA/ALS Division's website.
My condolences to the families of Maria Pizarro and Julie McCourt, two wonderful ladies who attended the Beth Israel ALS Association support groups with their families, and who lost their fights with ALS on the same day -- Sunday, May 2. I will miss them. This disease is so cruel!! They both had loyal spouses who were involved in their care, and a group of friends and family members who were there to support them. They had everything to live for.
Unfortunately, I probably will not be able to participate in the Ride For Life this year. They don't have enough volunteers to walk with the riders, and they will not be able to provide van transport to family members and friends who get tired. Just the segment from Washington Square Park to Columbia Presbyterian Hospital which is half of one day, is from W. 8th Street to W. 168th street. At 20 blocks = 1 mile, do the math -- 8 miles. The friend I had who went with me every year, had recent knee surgery and can't walk that far. Even if she could take a bus part of the way, they won't let me ride alone with no one at my side, which I could do but they won't allow it. My high school friend, who teaches in the Lawrence School District wants me to do the Lido Beach to Lawrence segment, which her school is doing. They are going to see if they can make special arrangements to transport me to the starting point and from the ending point. In that case, she or someone from her school will walk beside me. So we'll see. In the meantime, is anyone in the New York area free on May 25th to walk the 8 miles alongside me from Washington Square to Columbia Presbyterian? Just let me know.
Last call to join my team "Fern's Fighters" at the Walk to D'Feet ALS on May 15th along the Hudson River!! You can walk, donate, or both. Just go to the team webpage to sign up or donate on line. Also, they need volunteers at the Walk to direct traffic along the route, give out water, and to work at the start and end points. Please contact me if you would like to do this. And, remember, we plan to walk at the Long Island Walk to D'Feet ALS in Eisenhower Park on September 26.
And finally there is a really great site that explains the Consumer Directed [Community Care] Program and the history of how it came about. For anyone who wants to know how they can keep a sick family member or friend out of a nursing home or other institution, and not have to deal with the restrictions and other nightmares of a home care agency, it is a must-read!
Thursday, April 15, 2010
fernsfightersnyc10 Tiny URL for fernsfightersnyc10 Tiny URL for Greater New York Walk To Defeat ALS(TM):
Fern's Fighters
scroll down to the list of team members and use the link for "join team"
scroll down to the list of team members and use the link for "join team"
this is the link to sign up for the Walk to D'Feet ALS in NYC on Saturday, May 15th in Hudson River Park with my "Fern's Fighters" team. If Long Island is more convenient for you, we will be walking again on September 26, 2010 in Eisenhower Park.
The NYC walk is a one-way walk from the Village to the 50s, with celebration at the end-point. Unfortunately, there is no arranged transportation from end point to starting point. So, if you park your car at the starting point, you have to take public transportation back.
If you do the Long Island walk, it's a circular route, with a celebration back at the starting point, lots of food before the walk and hotdogs and lunch after the walk. Either walk is a lot of fun!! You can walk, donate, or both. And when you register, there is an area online to enter the names and addresses of your donors, who will then receive letters of acknowledgement from the ALS Association.
if you care to run a fundraiser before either walk, contact me and I will contact the ALS Association, who wants to assist with any fundraisers. If you are on Facebook [who isn't?], I suggest you become friends with ALS of GNY [Greater NY], and receive all the updates and tips from the Association.
Tuesday, April 13, 2010
Updates:Budget Cuts Affect Nassau Able-Ride and People With Disabilities in General
Sadly, I received notification that due to budget cuts, Nassau Able-Ride will no longer offer door-to-door service. They are only required by law to provide service to people with disabilities along bus-routes, so that's what they are going to do. This means that there are whole towns in Long Island that will not have Able-Ride paratransit service. I'm happy to be living in New York City, where Access-a-Ride still offers door-to-door service. It enabled me to go with my friend Judy to the kickoff party for the NYC Walk to D'Feet ALS at Yankee Stadium, and to the baby-naming of my friends' babies in Bayside, right on the border of Nassau and Queens. But I would not have been able to go to my traditional New Years Eve party at my friend Nancy's house in Great Neck if not for the connection to Able-Ride. This is very sad news for people with disabilities in Nassau County who don'thave use of a wheelchair van. Budget cuts are hurting everyone.
Budget cuts could really hurt me in a big way too. I am getting a visit from a nurse who works with NYC home care [CASA] next weekend, and she is going to evaluate me for continuation of home care. Right now, I have two aides every day, on a "Split shift" of twelve hours each. I am not likely to lose that, but they are not giving that arrangement to new applicants. Rather they want to give everyone a "live-in" arrangement. In that plan, an aide lives in the whole day, usually for 3-4 days in a row. However, they are only paid for 14 hours. This means that the aide is around in case there is an emergency in the night, but they are "off-duty" for eight hours. They would rather work a 12-hour shift and go home, rather than have to hang out in a patient's house. I am sure that the aides I have now will refuse to do this. So, if I am forced into a "live-in" aide situation, I am looking at a whole new set of aides. That will not be fun, so I am going to have to convince this nurse that I need the two 12-hour shifts, without seeming so dependent that she will have to put me in a nursing facility. It's a slippery slope, because I can do most things for myself, except I can't get into the kitchen, so the aides have to get everything for me. So they would have to leave certain things within reach. And since I don't really have proper sleeping arrangements, I would have to get an inflatable mattress at best.
On other important subjects, Lon Cohen says I can publish a book through Lulu with no cash outlay. I was fitted for a new wheelchair, so I will get that in a few months. The new season of "The Tudors" has begun, and this season of "The Amazing Race" is coming to a conclusion. I am going in May to see the "spasticity guru" as he is called by the Cornell ALS/MDA. He is at the Hospital for Special Surgery. The pollen count is also killing me, but when I feel I have to take an antihistamine, I can count on falling asleep for a few hours. I love spring, but it is a double-edged sword for me. I am comfortable inside with the A/C going. I remember my beloved, now-retired, allergy doctor Sidney Rand telling me "Always take a vacation at the beach and never in the country. Take hikes by the ocean on your days off, and never in the woods." I do always feel best at the beach, far away from pollen and ragweed. I always imagined myself retiring to a beach house to do my collages and my writing. I will have to settle for an air-conditioned studio apartment in Queens. My biggest challenge is the TV soap operas in the background all day. I can't help this, because the aides have to be amused too.
Budget cuts could really hurt me in a big way too. I am getting a visit from a nurse who works with NYC home care [CASA] next weekend, and she is going to evaluate me for continuation of home care. Right now, I have two aides every day, on a "Split shift" of twelve hours each. I am not likely to lose that, but they are not giving that arrangement to new applicants. Rather they want to give everyone a "live-in" arrangement. In that plan, an aide lives in the whole day, usually for 3-4 days in a row. However, they are only paid for 14 hours. This means that the aide is around in case there is an emergency in the night, but they are "off-duty" for eight hours. They would rather work a 12-hour shift and go home, rather than have to hang out in a patient's house. I am sure that the aides I have now will refuse to do this. So, if I am forced into a "live-in" aide situation, I am looking at a whole new set of aides. That will not be fun, so I am going to have to convince this nurse that I need the two 12-hour shifts, without seeming so dependent that she will have to put me in a nursing facility. It's a slippery slope, because I can do most things for myself, except I can't get into the kitchen, so the aides have to get everything for me. So they would have to leave certain things within reach. And since I don't really have proper sleeping arrangements, I would have to get an inflatable mattress at best.
On other important subjects, Lon Cohen says I can publish a book through Lulu with no cash outlay. I was fitted for a new wheelchair, so I will get that in a few months. The new season of "The Tudors" has begun, and this season of "The Amazing Race" is coming to a conclusion. I am going in May to see the "spasticity guru" as he is called by the Cornell ALS/MDA. He is at the Hospital for Special Surgery. The pollen count is also killing me, but when I feel I have to take an antihistamine, I can count on falling asleep for a few hours. I love spring, but it is a double-edged sword for me. I am comfortable inside with the A/C going. I remember my beloved, now-retired, allergy doctor Sidney Rand telling me "Always take a vacation at the beach and never in the country. Take hikes by the ocean on your days off, and never in the woods." I do always feel best at the beach, far away from pollen and ragweed. I always imagined myself retiring to a beach house to do my collages and my writing. I will have to settle for an air-conditioned studio apartment in Queens. My biggest challenge is the TV soap operas in the background all day. I can't help this, because the aides have to be amused too.
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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.......
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.......
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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.
Tuesday, May 27, 2008
No more lithium, thank you Ted Scott F*** You Too

ferncohen.com
please go to my content producer page at Associated Content, read, or at least click on, my articles.....I need clicks!!
Yikes! I didn't know so much time went by since my last update!
On Saturday, May 17, a few of us went to the first Walk to D'Feet ALS in Manhattan. We really lucked out on the weather. especially since I was out the night before in the pouring rain [more on that later]. I didn't really put together a formal team. I wanted to go also because it was a walk along Hudson River Park, and it turned out to be a beautiful walk.
The night before, I and my aide Lynette went as invited guests to "An Evening with the Stars", thrown by ALSTDI [Therapy Development Institute]. I am going to be an Ambassador for them. I had my training in a videoconference call.
Last week, I met with Jim Presbey from Extra Hands for ALS. This is a program that has been running in the mid-West for years. They run it with a local high school, and match a pair of students with a patient. The students do tasks for us, like chores, or helping do a project, or just go out with us. I figure they can do certain things the aides don't do. Maybe I will even have them paint one of my walls, which is a mess.
I'm giving up on lithium. This was experimental. According to an Italian study, low doses of lithium showed promising signs of slowing progression I am being weaned off. I noticed that I felt weaker since I have been taking it. Also, I was having trouble getting in the extra fluid. So since it was probably making me feel worse, and drop off to sleep several times a day, what's the point?
We lost another of our group. Mark Nurse was 36. He had been a surgical technician and wasn't married all that long when he was diagnosed. In fact, his 3-year-old son was born right before he got ALS. His aunt Sheila, mom Molly and wife Laurian used to come to our group. Last month Mark came with the family and we all knew he didn't have much longer.
Awkward moment at the annual shareholders meeting of my co-op. There was some stupid woman complaining about the automatic door downstairs [the one they installed as a result of my 21-month journey with the NYC Commission on Human Rights] Recently the door was out of service for several days, and you do have to make an effort to pull it shut. Well, this woman yells "What do we need that door for anyway?". Ted Scott, our brilliant [not] board president, must have repeated 5 times "that door was not our choice. We have a lady in a wheelchair who brought Human Rights here, and we had to put it in"...gee thanks Ted! and at one point he added "we tried to fight against the door, but we lost the fight".....am I being totally delusional when I think "isn't he embarrassed to say that? why can't he say 'we put that door in to accommodate our disabled residents"' mind you, i see people being pushed in manual chairs in my building. They need that door more than I do. Have you ever tried to push a wheelchair and hold a door at the same time. And I'm sure the mommies with strollers appreciate the door, as well as people using canes and walkers. I wanted to scream out "if it were you or a member of your family, you would want that door". So when the board president, idiot that he is, singled me out, don't you think everybody turned and stared at me? And if you think one of my neighbors said "you know, that could be YOU in a wheelchair some day", think again. Not one neighbor came to my defense or to challenge our ass of a board president. Thereby solidifying my belief that each of us is truly alone. If we don't fight for ourselves, nobody will.
Monday, October 8, 2007
Walk to D'Feet and Apartment Renovation
ferncohen.com
Antoinette submitted her three designs for the apartment renovation. I am so glad she came, because I would never have known that the floor in the bathroom is slightly higher than the floor in the kitchen, so the flooring needs to be done. That means a contractor, and it also means board approval. I am going to have to get estimates. The guy who did my previous renovation – taking out the tub and putting in a stall shower—will be one of the ones I call. But it’s hard to know who else is honest. I have to ask around. I will have to send Chelsea to board, because she can’t be here with all the banging. And, depending on whether my bathroom will be out of service, I may have to go somewhere too; or at least I have to arrange for my aides to be able to use another bathroom. So I don’t know what I will do. Knocking down walls will create a lot of dust, but I may have to deal with that.
Money is another hurdle. I think a home-equity line of credit will be the way to go, and at the same time, I can consolidate some of the old debt that has been looming over my head, and making it tough to hold onto the $720.00 a month that Medicaid allows me to keep every month.. So this might end up to be a good turn of events in more ways than one.
A last trip into the shower on Thursday was a disaster. It made Lynette late for her day job, since she didn’t want to leave Ellita alone to get me out of the bathroom. So, I really can’t go in there anymore. Sponge-bathing is permanent, until I get the bathroom modified. Since hair-cleaning is an issue I had to order a dry shampoo online. Not the way I wanted to live, but I have no choice. I have had no desire to do much, and I think I am just very depressed. Just a few months ago, I was full of hope to improve my situation, and now reality comes to slap me in the face. I am extremely self-conscious about not being able to take a proper shower and shampoo my hair. When I have to sit on the portable commode in the middle of my living room, it depresses me. And now I am again at the mercy of six people who can hold up, and even stop, any renovation. I don’t know how in God’s name I am going to deal with contractors when I can’t speak, and I am scared as hell that they will take me for a ride because I am disabled and defenseless.
Anyway, it was in this spirit that I had to attend the Walk to D’Feet ALS last Sunday. But I had a good team, which consisted of Ellita, Lynette, Debby and Andrew Wolfe, Cassie the dog, Louise, Haley, Claude, Tyler, Rianna and her friend Darie, Jenna, Gino and Donna and their daughter Regina, Michelle and her friend, Michael, Flo, Judy, and Jane. The weather could not have been more perfect, since we are having a weird September and October; as I write this on October 7, it is 79 degrees at 5:37pm! So it was a great afternoon at the park. After we all got back to Queens, Debby, Andrew, Jane, Ellita, Lynette, and I regrouped at the local App;eby’s for dinner; an appropriate choice, since they were a sponsor at the Walk, and provided the hotdogs afterwards.
Monday was my appointment at the ALS clinic at Beth Israel. Dr. Scelsa said I am an unusual case because I progressed rather quickly at the beginning and I am settling into a plateau. He see no change in strength since my last visit in June. So that is good news. The PT suggested that I get an athletic ankle support at a sporting goods store, to stabilize my ankle during transfers. I f that doesn’t do the trick, I can try leg braces. Other than that, the visit was uneventful. I.ater, Louise redeemed her auction prize from Wings Over Wall Street. It was for fish and chips at “A Salt and Battery” and then high tea at “Tea and Sympathy”, both down in the West Village, my old stomping ground (from when I did my masters degree at NYU, studied acting at HB Studios, and then took craft classes at The Ink Pad). So, aside from great food, it was a nostalgic trip down memory lane for me.
Antoinette submitted her three designs for the apartment renovation. I am so glad she came, because I would never have known that the floor in the bathroom is slightly higher than the floor in the kitchen, so the flooring needs to be done. That means a contractor, and it also means board approval. I am going to have to get estimates. The guy who did my previous renovation – taking out the tub and putting in a stall shower—will be one of the ones I call. But it’s hard to know who else is honest. I have to ask around. I will have to send Chelsea to board, because she can’t be here with all the banging. And, depending on whether my bathroom will be out of service, I may have to go somewhere too; or at least I have to arrange for my aides to be able to use another bathroom. So I don’t know what I will do. Knocking down walls will create a lot of dust, but I may have to deal with that.
Money is another hurdle. I think a home-equity line of credit will be the way to go, and at the same time, I can consolidate some of the old debt that has been looming over my head, and making it tough to hold onto the $720.00 a month that Medicaid allows me to keep every month.. So this might end up to be a good turn of events in more ways than one.
A last trip into the shower on Thursday was a disaster. It made Lynette late for her day job, since she didn’t want to leave Ellita alone to get me out of the bathroom. So, I really can’t go in there anymore. Sponge-bathing is permanent, until I get the bathroom modified. Since hair-cleaning is an issue I had to order a dry shampoo online. Not the way I wanted to live, but I have no choice. I have had no desire to do much, and I think I am just very depressed. Just a few months ago, I was full of hope to improve my situation, and now reality comes to slap me in the face. I am extremely self-conscious about not being able to take a proper shower and shampoo my hair. When I have to sit on the portable commode in the middle of my living room, it depresses me. And now I am again at the mercy of six people who can hold up, and even stop, any renovation. I don’t know how in God’s name I am going to deal with contractors when I can’t speak, and I am scared as hell that they will take me for a ride because I am disabled and defenseless.
Anyway, it was in this spirit that I had to attend the Walk to D’Feet ALS last Sunday. But I had a good team, which consisted of Ellita, Lynette, Debby and Andrew Wolfe, Cassie the dog, Louise, Haley, Claude, Tyler, Rianna and her friend Darie, Jenna, Gino and Donna and their daughter Regina, Michelle and her friend, Michael, Flo, Judy, and Jane. The weather could not have been more perfect, since we are having a weird September and October; as I write this on October 7, it is 79 degrees at 5:37pm! So it was a great afternoon at the park. After we all got back to Queens, Debby, Andrew, Jane, Ellita, Lynette, and I regrouped at the local App;eby’s for dinner; an appropriate choice, since they were a sponsor at the Walk, and provided the hotdogs afterwards.
Monday was my appointment at the ALS clinic at Beth Israel. Dr. Scelsa said I am an unusual case because I progressed rather quickly at the beginning and I am settling into a plateau. He see no change in strength since my last visit in June. So that is good news. The PT suggested that I get an athletic ankle support at a sporting goods store, to stabilize my ankle during transfers. I f that doesn’t do the trick, I can try leg braces. Other than that, the visit was uneventful. I.ater, Louise redeemed her auction prize from Wings Over Wall Street. It was for fish and chips at “A Salt and Battery” and then high tea at “Tea and Sympathy”, both down in the West Village, my old stomping ground (from when I did my masters degree at NYU, studied acting at HB Studios, and then took craft classes at The Ink Pad). So, aside from great food, it was a nostalgic trip down memory lane for me.
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