Well summer is at an end. I am grateful for the three outings I had this summer, which was really a hot one. At the beginning of the summer, Louise invited me to the annual barbecue at her church, St. Luke's, in Forest Hills, on a beautiful summer evening. In July, Judy came out and we took Access-a-Ride to the Rockaway boardwalk. It was pretty empty on a Tuesday, and Rockaway is still very depressed, with a lot of boarded-up businesses right next to the beach on Beach 116th Street. It reminded me of my home town -- Long Beach -- before it got the HUD grant which facilitated its revival. There was an SRO right off the beach and therefore some shady characters on the boardwalk. Originally, we were going to go to Brighton and have lunch in one of the Russian restaurants on that boardwalk, but I thought it would be too far, and there is a city bus from Rockaway to my neighborhood in case we had any trouble with Access-a-Ride. But Access-a-Ride was impeccably on time, and I'd forgotten what a long ride it was from my house to Rockaway, along Cross Bay Blvd and through a long stretch of nature preserve. I wish I had gone with Judy's original suggestion of Brighton, which would have taken the same amount of time over parkway. Oh well. But it was hot and the sun was out, and I knew it would be my only opportunity to see the ocean this year, so I was grateful to be there. And Judy is great for having gone with me.
My third and last outing this summer was in mid-August. Jenny Vidoni, who works at MDA in Manhattan and coordinates the MDA/ALS efforts in NYC, came out to visit. I know Jenny from our support group at All Souls Church, which she co-facilitates. I was just so grateful that she came out because Manhattanites hate to come to the outer boroughs. We walked to Flushing Meadows Park, and visited the Zoo. We had a great day. Jenny is used to dealing with all kinds of disabilities, so it was fun, and extremely comfortable.
I was invited to be part of the Consumer Board of Concepts of Independence, Inc. Concepts is the company that runs my Consumer Directed Personal Assistant Program [CD-PAP] This is something that disabilities advocates fought for, along with the Americans with Disabilities Act. The CD-PAP allows me to remain in my home and select my own aides [personal assistants], rather than depend on an agency. Those of you readers who have been following me since the Caring Bridge page I had, know what a triumph it was when I got onto the Concepts program. The agency I worked with before, through which I met 3 of the aides I have now, was less than accommodating, sending all kinds of aides to me who were less than satisfactory. I was robbed of a brand-new digital camera, and plenty of cash. Some of them were so scary, I was afraid to go to sleep at night. Eventually, I got a team of aides whom I could trust. But when any of them called sick, the agency sent strange aides instead of ones I already knew. It's very difficult to keep training strangers about what to do, especially since I can't speak. And some of them were intimidated, frightened, or just plain lazy. I had an assortment of ladies who I am sure were nice people, but they resented being sent to such a "difficult case" and took their perceived misfortune out on me, or just fell asleep, snoring, in my big comfortable chair. My complaints fell on deaf ears, with the agency supervisor often telling me "I have a hard time finding aides who will go to you at all". That didn't make me feel very good, and to top it off, I had a nurse who would come once a week and tell me "I have a hard time finding an agency who will take your case on a long-term basis, because your case is so difficult", which made me feel even worse. The day I switched to Concepts was a happy day.
Tuesday, August 31, 2010
Friday, August 6, 2010
Long-Overdue Update
Once again, too much time between updates. There have been too many things hanging, and too many things changing minute by minute. I didn't want to write about something, only to have it change between the time I typed it and the time I pushed the "publish" button, only to have it change still again after publishing and before sharing the link on Facebook and Twitter.
So, I was having trouble with my PEG [feeding] tube. Since it was replaced in September 2009, at Beth Israel Hospital, it was never right. From the time it was originally placed in September, 2005 until then it hadn't given me a moment of trouble. The only reason I had it replaced 4 years later was that PEGs are usually changed every two years and this one was discolored, and the rubber had weakened. So it was replaced in September of 2009. But when it fell out in March of 2010, I went to my local ER and the tube was replaced by a resident [not GI] doctor. That was when the situation got worse -- the tube leaked stomach acid, which ate through my skin, making the area around the tube angry-looking and very painful. The doctor at Beth Israel insisted everything was okay, but I knew it wasn't. So during my next quarterly visit to the MDA/ALS clinic at NY Presbyterian/Weill-Cornell, I lifted up my shirt for my neurologist, and she was pretty horrified
So fast forward to July and Dr. Crawford at Cornell, GI doctor. He says I am best off replacing the tube in a whole new location. This would mean another endoscopic procedure and going under general anesthesia again. Of course, I freak out, and Dr. Crawford says he feels bad, but it might not be enough to do a simple tube replacement in the same site. Anesthesia is always a risk for anyone, but especially for a person with respiratory issues. When it was done in September, I wore my bi-Pap while I was under anesthesia and all went well, but this is 11 months later and I might not be so lucky this time. But I resign myself because it has to be done.
I came into Dr. Crawford's office this past Monday with my bi-Pap, fully expecting to have the endoscopy, and Dr. Crawford tells me that he has decided to do a simple PEG replacement to see if that works. So that's what he did in the same site. to tilt a bit in order to clearWe are keeping our fingers crossed that this does the trick. If it doesn't, I'm headed for another endoscopy and anesthesia.
My wheelchair is fixed -- for now. Every once in a while, the tilt stops working, but then it starts again unexpectedly. This is a pain when I need to nap, and when I travel in the street, because I need to tilt slightly in order to clear bumps and curbs. I spend as much as 16-18 hours in the wheelchair, so napping and relaxing are very important. So the technician came to my house last Friday and fixed the footrest, which wouldn't stay in the up position. Getting the footrest out of the way is important for transfers. So transfers have been hard on the aides and myself. Ideally in a transfer -- from bed to wheelchair, wheelchair to bed or commode, etc-- the aide and patient work together, with the patient helping as much as possible according to his/his remaining abilities. I have a new wheelchair finally in process, but it's anyone's guess how long it will take for that to happen.
The weather has not been good for someone with compromised breathing, so I have been inside much more than I like to be, and much more than any other summer so far. Judy has come over a couple of times, and we have had to postpone a few times because of the high humidity and poor air quality outside. I was invited to Louise's church's barbecue one evening, which was a very welcome and pleasant outing for me, but we were careful to get out of there when the mosquitoes came out after dark. Ironically, the best place for me is the allergen-free beach, but I don't think there will be an opportunity for me to get to any beach this year. This loss has been the hardest for me to accept.
So, I was having trouble with my PEG [feeding] tube. Since it was replaced in September 2009, at Beth Israel Hospital, it was never right. From the time it was originally placed in September, 2005 until then it hadn't given me a moment of trouble. The only reason I had it replaced 4 years later was that PEGs are usually changed every two years and this one was discolored, and the rubber had weakened. So it was replaced in September of 2009. But when it fell out in March of 2010, I went to my local ER and the tube was replaced by a resident [not GI] doctor. That was when the situation got worse -- the tube leaked stomach acid, which ate through my skin, making the area around the tube angry-looking and very painful. The doctor at Beth Israel insisted everything was okay, but I knew it wasn't. So during my next quarterly visit to the MDA/ALS clinic at NY Presbyterian/Weill-Cornell, I lifted up my shirt for my neurologist, and she was pretty horrified
So fast forward to July and Dr. Crawford at Cornell, GI doctor. He says I am best off replacing the tube in a whole new location. This would mean another endoscopic procedure and going under general anesthesia again. Of course, I freak out, and Dr. Crawford says he feels bad, but it might not be enough to do a simple tube replacement in the same site. Anesthesia is always a risk for anyone, but especially for a person with respiratory issues. When it was done in September, I wore my bi-Pap while I was under anesthesia and all went well, but this is 11 months later and I might not be so lucky this time. But I resign myself because it has to be done.
I came into Dr. Crawford's office this past Monday with my bi-Pap, fully expecting to have the endoscopy, and Dr. Crawford tells me that he has decided to do a simple PEG replacement to see if that works. So that's what he did in the same site. to tilt a bit in order to clearWe are keeping our fingers crossed that this does the trick. If it doesn't, I'm headed for another endoscopy and anesthesia.
My wheelchair is fixed -- for now. Every once in a while, the tilt stops working, but then it starts again unexpectedly. This is a pain when I need to nap, and when I travel in the street, because I need to tilt slightly in order to clear bumps and curbs. I spend as much as 16-18 hours in the wheelchair, so napping and relaxing are very important. So the technician came to my house last Friday and fixed the footrest, which wouldn't stay in the up position. Getting the footrest out of the way is important for transfers. So transfers have been hard on the aides and myself. Ideally in a transfer -- from bed to wheelchair, wheelchair to bed or commode, etc-- the aide and patient work together, with the patient helping as much as possible according to his/his remaining abilities. I have a new wheelchair finally in process, but it's anyone's guess how long it will take for that to happen.
The weather has not been good for someone with compromised breathing, so I have been inside much more than I like to be, and much more than any other summer so far. Judy has come over a couple of times, and we have had to postpone a few times because of the high humidity and poor air quality outside. I was invited to Louise's church's barbecue one evening, which was a very welcome and pleasant outing for me, but we were careful to get out of there when the mosquitoes came out after dark. Ironically, the best place for me is the allergen-free beach, but I don't think there will be an opportunity for me to get to any beach this year. This loss has been the hardest for me to accept.
Sunday, July 4, 2010
Wheelchair Woes and Perspective, Eating Healthy,
YES YOU'VE COME TO THE RIGHT PLACE! Same blog with a new design. I thought we needed a change. Feedback welcome of course. What do you think? I thought this would be easier on the eyes, but I am not quite used to it yet myself. Believe it or not, change is not easy for me.
I am shocked at the time lapse between my last update and now. It is mostly because of wheelchair problems. In mid-June, my wheelchair died. It just stopped driving. So for a few days, my aide put it in "push" [or "manual"] mode and pushed a 386-pound wheelchair with me in it [extra weight of my body undisclosed here] around the apartment until she threw out her shoulder. Then the ALSA loan closet dropped off the best thing they had available -- a wheelchair tailor-made for a 300-pound, 6-foot-tall quarterback, with the seat controls [tilt, recline, and footrest elevation] ON THE BACK OF THE CHAIR. This meant that, all the 30 or so times a day I needed to recline to relieve my aching back, I had to ask my aide to do it.
Well, the wheelchair company picked up my wheelchair for repair and the loan closet received a loaner returned to the loan closet with all the controls on the arm, but with a footrest that didn't work so well, and fanned out at the sides, making it a major obstacle to move around in certain parts of the apartment. And the worst part -- it had no headrest. So if I fell off to sleep, my head would flop off to one side, and I would wake up sore from my neck through to my shoulders.
Finally, after about two weeks [which is actually very fast for a wheelchair repair], I got my own wheelchair back, and I can once again sit at my computer straight and type with both hands. You see, wheelchairs aren't just chairs on wheels. The wheelchair is where a PWD spends all waking hours. They are custom-made for the patients measurements and abilities. Some have controls on the back, if the patient cannot use his hands, and must be operated by an attendant. Some even have controls operated by the patient's head. The seating is also custom-fitted. So a loaner is never quite right, although the lady who runs the loan closet at ALSA does her best to match up the loaner and the patient [she was on vacation when my wheelchair died, by the way]
So the only analogy I can give to someone who isn't familiar with wheelchairs is this: what if you had to send your body to be fixed and, in the meantime, you had to borrow another body until yours came back. The loaner body would be as close as possible to your own, but it wouldn't be quite right and wouldn't work the way your body works.
I have a friend I recently reconnected with, and I am very sad for what has happened to her since we last met. She lost her job and never managed to find another decent job again. It's so hard out there in this economy. But I wonder if she is just refusing to do certain things, or if she is so mired in depression that she is "stuck". Either way, I understand, but I can't help thinking what my mom always drummed into me -- "if you have your health, you can always do something to make money". However, I think she was talking about physical health; loss of mental health is just as debilitating. I listen to this friend and I refrain from preaching, or even giving advice. I empathize. What I can't wrap my head around is mature adults saying they are having "the worst day of my life". When I hear why, I say to myself "that should only be the worst day of MY life." It's all in perspective, and I keep thinking how amazing it is that I have coped with some of the things that have happened. And, yet, I have so much to feel lucky about. There is always someone much worse off than I am.
The only defense I have right now with a disease that has no cure and no really effective treatment to stop progression -- is a strong immune system. Recent studies have shown that patients who retain their weight have a longer survival. Well, I have retained my weight, and added some. I am totally disgusted with the way I look. I am the heaviest I have ever been, and heavier than I thought I would ever be in my wildest dreams. If anyone had told me before ALS that one day I would reach this weight, my reaction would have been "shoot me now and get it over with" I was an avid exerciser and walked the city many miles during weekends and vacations. If I had let myself go, and needed to drop 10-20 pounds, I would put my mind to it, and be successful. Anyway, exercise and burning calories is next to impossible with ALS, so I have committed myself to healthy eating. I decided that I was putting a lot of empty calories in my body, and would replace those with healthy calories. I have given up eating red meat and poultry, so I am almost a vegetarian. I snack on healthy nuts like almonds, cashews, and walnuts, reasonable amounts of fruits, and yogurt [preferable plain with fresh fruit]. For meals, I eat a lot of salad and vegetables, quinoa [a whole grain with a lot of protein], a banana every day, a half-can of coconut milk [lots of nutrients and anti-viral and pro-biotic properties], yogurt [probiotic] and anti-oxidant-rich fruits like pomegranate, blueberries, and purple grapes, whole grains, fish [calcium, fish oil, and protein], green tea, and cruciferous vegetables [anti-cancer], and occasionally dark chocolate and red wine. I have cut down on sugar, refused sugary desserts except on my birthday, use agave nectar as a sweetener in my tea, and also cut down on salt and carbonated beverages.
Most of all -- the hardest --I try to stay out of stressful situations. This has meant forgiving people who have made empty promises that they never intended to fulfill, and the people in my life I assumed would be there for me because either 1) I have been there for them in the past 2) they are old friends or related to me. Forgiveness is for my benefit, and not for their benefit. I also avoid contact with people who aggravate me, abase me, or will never accept the way I am. I blog and twitter to raise awareness, but I'm done with trying to change certain peoples' minds. I am there to listen and share in joys and tragedies, but if the connection gets too aggravating or frustrating [and especially if it gets abusive or disrespectful toward me], I walk away faster than I would have in the past. I have to, for my own preservation.
I am shocked at the time lapse between my last update and now. It is mostly because of wheelchair problems. In mid-June, my wheelchair died. It just stopped driving. So for a few days, my aide put it in "push" [or "manual"] mode and pushed a 386-pound wheelchair with me in it [extra weight of my body undisclosed here] around the apartment until she threw out her shoulder. Then the ALSA loan closet dropped off the best thing they had available -- a wheelchair tailor-made for a 300-pound, 6-foot-tall quarterback, with the seat controls [tilt, recline, and footrest elevation] ON THE BACK OF THE CHAIR. This meant that, all the 30 or so times a day I needed to recline to relieve my aching back, I had to ask my aide to do it.
Well, the wheelchair company picked up my wheelchair for repair and the loan closet received a loaner returned to the loan closet with all the controls on the arm, but with a footrest that didn't work so well, and fanned out at the sides, making it a major obstacle to move around in certain parts of the apartment. And the worst part -- it had no headrest. So if I fell off to sleep, my head would flop off to one side, and I would wake up sore from my neck through to my shoulders.
Finally, after about two weeks [which is actually very fast for a wheelchair repair], I got my own wheelchair back, and I can once again sit at my computer straight and type with both hands. You see, wheelchairs aren't just chairs on wheels. The wheelchair is where a PWD spends all waking hours. They are custom-made for the patients measurements and abilities. Some have controls on the back, if the patient cannot use his hands, and must be operated by an attendant. Some even have controls operated by the patient's head. The seating is also custom-fitted. So a loaner is never quite right, although the lady who runs the loan closet at ALSA does her best to match up the loaner and the patient [she was on vacation when my wheelchair died, by the way]
So the only analogy I can give to someone who isn't familiar with wheelchairs is this: what if you had to send your body to be fixed and, in the meantime, you had to borrow another body until yours came back. The loaner body would be as close as possible to your own, but it wouldn't be quite right and wouldn't work the way your body works.
I have a friend I recently reconnected with, and I am very sad for what has happened to her since we last met. She lost her job and never managed to find another decent job again. It's so hard out there in this economy. But I wonder if she is just refusing to do certain things, or if she is so mired in depression that she is "stuck". Either way, I understand, but I can't help thinking what my mom always drummed into me -- "if you have your health, you can always do something to make money". However, I think she was talking about physical health; loss of mental health is just as debilitating. I listen to this friend and I refrain from preaching, or even giving advice. I empathize. What I can't wrap my head around is mature adults saying they are having "the worst day of my life". When I hear why, I say to myself "that should only be the worst day of MY life." It's all in perspective, and I keep thinking how amazing it is that I have coped with some of the things that have happened. And, yet, I have so much to feel lucky about. There is always someone much worse off than I am.
The only defense I have right now with a disease that has no cure and no really effective treatment to stop progression -- is a strong immune system. Recent studies have shown that patients who retain their weight have a longer survival. Well, I have retained my weight, and added some. I am totally disgusted with the way I look. I am the heaviest I have ever been, and heavier than I thought I would ever be in my wildest dreams. If anyone had told me before ALS that one day I would reach this weight, my reaction would have been "shoot me now and get it over with" I was an avid exerciser and walked the city many miles during weekends and vacations. If I had let myself go, and needed to drop 10-20 pounds, I would put my mind to it, and be successful. Anyway, exercise and burning calories is next to impossible with ALS, so I have committed myself to healthy eating. I decided that I was putting a lot of empty calories in my body, and would replace those with healthy calories. I have given up eating red meat and poultry, so I am almost a vegetarian. I snack on healthy nuts like almonds, cashews, and walnuts, reasonable amounts of fruits, and yogurt [preferable plain with fresh fruit]. For meals, I eat a lot of salad and vegetables, quinoa [a whole grain with a lot of protein], a banana every day, a half-can of coconut milk [lots of nutrients and anti-viral and pro-biotic properties], yogurt [probiotic] and anti-oxidant-rich fruits like pomegranate, blueberries, and purple grapes, whole grains, fish [calcium, fish oil, and protein], green tea, and cruciferous vegetables [anti-cancer], and occasionally dark chocolate and red wine. I have cut down on sugar, refused sugary desserts except on my birthday, use agave nectar as a sweetener in my tea, and also cut down on salt and carbonated beverages.
Most of all -- the hardest --I try to stay out of stressful situations. This has meant forgiving people who have made empty promises that they never intended to fulfill, and the people in my life I assumed would be there for me because either 1) I have been there for them in the past 2) they are old friends or related to me. Forgiveness is for my benefit, and not for their benefit. I also avoid contact with people who aggravate me, abase me, or will never accept the way I am. I blog and twitter to raise awareness, but I'm done with trying to change certain peoples' minds. I am there to listen and share in joys and tragedies, but if the connection gets too aggravating or frustrating [and especially if it gets abusive or disrespectful toward me], I walk away faster than I would have in the past. I have to, for my own preservation.
Friday, June 11, 2010
Update 6/10/2010: Birthday Meals, Mercury Resurrection, Wheelchair Troubleshoot
Monday June 7 was my 55th birthday. What is the worst thing about turning 55? When I do an online survey or otherwise fill out any form on the internet, there is usually a check-off category 45-54 and then one for 55-64 or -- even worse, and more often 55 or more. I hate this!! Not only do we "55 or more" oldies get disqualified for more surveys, but just the thought of being in a category with people over 75 and even over 100? My dad is 82 and he is a totally different generation, and there is a world of difference between baby-boomers [who can now be as old as 64] and World War II veterans and children of the Great Depression, is ludicrous [and I don't mean the rapper!]!! See? my last parenthetical statement can be understood marginally by someone my age [55], but anyone over 70 would say "huh?". And anyone over 80 would say "what's a 'rapper' -- someone who knocks on doors?" I rest my case.
So, on Saturday before my birthday, I went to lunch with my friends Judy and Louise to Thai Pot in Forest Hills. Then Judy gave me the second part of my birthday present: she accompanied me to Trader Joe so I could do some healthy food shopping. One of my best purchases was a box of red quinoa, which my aide Cheryl cooked up for me [it is cooked like rice or couscous] and it provides a complete protein. If you are a vegetarian, this is a great food, because in order to make a complete protein out of rice, you have to add beans, which are fattening and socially challenging [although the product Beano® is a life-saver].
On Sunday, the day before my birthday, my dad treated me and my aide, and the whole family -- my sister, brother-in-law, and my nephew and two nieces -- to dinner at the Outback Steakhouse in Queens Place/Target Mall. I have to say that this Outback is really beautiful and not crazy-busy like other Outbacks. This surprised me because the mall is loaded with people, but I think they tend to frequent the Red Lobster in the same mall.
I had fish, because I no longer eat red meat or poultry, and I was surprised how well a restaurant that is famous for ribs and steaks, did fish. And the salad is the dream of anyone with chewing and/or swallowing issues -- everything is finely chopped!! YAY!! When they brought out the chicken wing appetizers, I ate the celery dipped in blue cheese dressing -- I'm so good......haha!!
My Mercury communication device suddenly died on Friday when the screen went . I emailed the rep from Tobii [formerly ATI] and he said he would come by on Monday to check it out. In the meantime, I went through an entire weekend writing on my board at my two birthday meals, and struggling with bad speech and my own special sign language with my aides. Antoinette from ALSA graciously sent a loaner through UPS to arrive Monday morning.
Suddenly, after going to bed on Sunday night, I was awakened very early Monday morning -- about 3am, to the familiar tune of my Mercury shutting down, I figured it was a part of one of my weird dreams< and went back to sleep. In the morning, I plugged it in again, pushed the "on" button and it went on, as if the last three days had never happened. I emailed the company rep, but he never checked his email and came anyway. When I repeated the story about what happened, he said "if it happens again, just remove the battery, disconnect any cords, and push the 'on' button for at least 20 seconds." If I'd only known that when this first happened, my weekend would have been a whole lot easier. Oh well......
After a recent event with a wheelchair glitch, I decided I would put together a short "troubleshooting" guide for wheelchair users and caregivers and companions, who may encounter a stalled wheelchair. Of course, this only applies to motorized wheelchairs. Manual folding transfer chairs would not have this problem, of course.
1] Don't panic. Relax. Tell other people who may be around, and will be inconvenienced by the stalled wheelchair, that the situation is under control, and you will get moving in a few minutes or less. It is no different from a stalled car, especially with everyone around you blasting their car horns. But understand that wheelchairs and people with disabilities just make people more uncomfortable, helpless and, in some cases, reduce intelligent rational adults to hysterical panic. Once you calm everybody down, proceed.
2] Stop anyone from trying to push the wheelchair. They can make the situation worse by knocking loose a wire connection or inadvertently moving any of the sensitive controls. You would have to be a super-hero to be able to push a stalled motorized wheelchair, especially with a person sitting in it. My own weighs 382 pounds, and with my own weight [which I will not reveal], it weighs -- well -- more than 400 pounds.
3] Many wheelchairs will not move if in tilt, the seat-back is reclined, and/or the seat is elevated. Make sure the chair and the seat-back are in the upright position, and the seat is down. Then turn off and start again.
4] If that isn't the problem, it could be that the lever on one or both wheels might have been jarred from the "drive" position to the "manual" or "push" position. This may happen if someone tries to push the wheelchair. In the latter position, the wheelchair will not go. Try to get someone to check those levers and make sure they are in "drive". Turn off and turn back on and see if it goes.
5] The next thing to check are any cord connections. Again, these can be jarred if someone has tried to push the wheelchair from the back. Turn off the wheelchair and have someone check the connections and push any loose ones into place. Then turn on the wheelchair and see if it starts then.
6] If none of these work, you will have to put the wheelchair in "manual" or "push" mode and have someone push you out of the way, and probably push you onto the bus going home. As a last resort, check your battery display. Did you forget to charge the wheelchair and now the battery is dead? You will still have to get home. Although you don't need super-powers to push the wheelchair in manual, the "pusher" needs to have some strength because it is not easy.
Anyway, if anyone has any other trouble-shooting ideas, let me know.
So, on Saturday before my birthday, I went to lunch with my friends Judy and Louise to Thai Pot in Forest Hills. Then Judy gave me the second part of my birthday present: she accompanied me to Trader Joe so I could do some healthy food shopping. One of my best purchases was a box of red quinoa, which my aide Cheryl cooked up for me [it is cooked like rice or couscous] and it provides a complete protein. If you are a vegetarian, this is a great food, because in order to make a complete protein out of rice, you have to add beans, which are fattening and socially challenging [although the product Beano® is a life-saver].
On Sunday, the day before my birthday, my dad treated me and my aide, and the whole family -- my sister, brother-in-law, and my nephew and two nieces -- to dinner at the Outback Steakhouse in Queens Place/Target Mall. I have to say that this Outback is really beautiful and not crazy-busy like other Outbacks. This surprised me because the mall is loaded with people, but I think they tend to frequent the Red Lobster in the same mall.
I had fish, because I no longer eat red meat or poultry, and I was surprised how well a restaurant that is famous for ribs and steaks, did fish. And the salad is the dream of anyone with chewing and/or swallowing issues -- everything is finely chopped!! YAY!! When they brought out the chicken wing appetizers, I ate the celery dipped in blue cheese dressing -- I'm so good......haha!!
My Mercury communication device suddenly died on Friday when the screen went . I emailed the rep from Tobii [formerly ATI] and he said he would come by on Monday to check it out. In the meantime, I went through an entire weekend writing on my board at my two birthday meals, and struggling with bad speech and my own special sign language with my aides. Antoinette from ALSA graciously sent a loaner through UPS to arrive Monday morning.
Suddenly, after going to bed on Sunday night, I was awakened very early Monday morning -- about 3am, to the familiar tune of my Mercury shutting down, I figured it was a part of one of my weird dreams< and went back to sleep. In the morning, I plugged it in again, pushed the "on" button and it went on, as if the last three days had never happened. I emailed the company rep, but he never checked his email and came anyway. When I repeated the story about what happened, he said "if it happens again, just remove the battery, disconnect any cords, and push the 'on' button for at least 20 seconds." If I'd only known that when this first happened, my weekend would have been a whole lot easier. Oh well......
After a recent event with a wheelchair glitch, I decided I would put together a short "troubleshooting" guide for wheelchair users and caregivers and companions, who may encounter a stalled wheelchair. Of course, this only applies to motorized wheelchairs. Manual folding transfer chairs would not have this problem, of course.
1] Don't panic. Relax. Tell other people who may be around, and will be inconvenienced by the stalled wheelchair, that the situation is under control, and you will get moving in a few minutes or less. It is no different from a stalled car, especially with everyone around you blasting their car horns. But understand that wheelchairs and people with disabilities just make people more uncomfortable, helpless and, in some cases, reduce intelligent rational adults to hysterical panic. Once you calm everybody down, proceed.
2] Stop anyone from trying to push the wheelchair. They can make the situation worse by knocking loose a wire connection or inadvertently moving any of the sensitive controls. You would have to be a super-hero to be able to push a stalled motorized wheelchair, especially with a person sitting in it. My own weighs 382 pounds, and with my own weight [which I will not reveal], it weighs -- well -- more than 400 pounds.
3] Many wheelchairs will not move if in tilt, the seat-back is reclined, and/or the seat is elevated. Make sure the chair and the seat-back are in the upright position, and the seat is down. Then turn off and start again.
4] If that isn't the problem, it could be that the lever on one or both wheels might have been jarred from the "drive" position to the "manual" or "push" position. This may happen if someone tries to push the wheelchair. In the latter position, the wheelchair will not go. Try to get someone to check those levers and make sure they are in "drive". Turn off and turn back on and see if it goes.
5] The next thing to check are any cord connections. Again, these can be jarred if someone has tried to push the wheelchair from the back. Turn off the wheelchair and have someone check the connections and push any loose ones into place. Then turn on the wheelchair and see if it starts then.
6] If none of these work, you will have to put the wheelchair in "manual" or "push" mode and have someone push you out of the way, and probably push you onto the bus going home. As a last resort, check your battery display. Did you forget to charge the wheelchair and now the battery is dead? You will still have to get home. Although you don't need super-powers to push the wheelchair in manual, the "pusher" needs to have some strength because it is not easy.
Anyway, if anyone has any other trouble-shooting ideas, let me know.
Wednesday, May 26, 2010
MDA's "Anyone's Life Story", The NYC Walk to D'Feet, My VIP MTA Q60 Private Bus
May is ALS Awareness Month, so every May they dedicate their website to one ALS patient each day from all of their regions. This year, I am their representative from the New York City region and May 26 is my day. Go to Anyone's Life Story for my profile.
So Fern's fighters raised about $2,000 [and still counting] for the NYC Walk to D'Feet ALS alon the Hudson River. It was a beautiful day -- as a matter of fact, the weather was perfect!! We took Access-a-Ride from home to the West Village, and figured it would be easier to just take the MTA NYC bus from the Hudson crosstown to 2nd Avenue and then the Q60 Queens Boulevard bus from East 60th Street and Second Avenue home to Rego Park [it goes down Queens Boulevard]. We figured this would be easier, but we never dreamed HOW MUCH easier it would be.
So Fern's fighters raised about $2,000 [and still counting] for the NYC Walk to D'Feet ALS alon the Hudson River. It was a beautiful day -- as a matter of fact, the weather was perfect!! We took Access-a-Ride from home to the West Village, and figured it would be easier to just take the MTA NYC bus from the Hudson crosstown to 2nd Avenue and then the Q60 Queens Boulevard bus from East 60th Street and Second Avenue home to Rego Park [it goes down Queens Boulevard]. We figured this would be easier, but we never dreamed HOW MUCH easier it would be.
You see, when we reached East 60th Street and 2nd Avenue, where the bus route originates, we boarded an empty bus [me via the ramp of course] and to our utter surprise, the MTA dispatcher told the driver he was running late and needed to get "back on schedule" [you mean there is actually a schedule?]. He ordered the bus driver to put on his "out of service" and not pick up passengers until Woodhaven Boulevard, which is only two stops from my stop -- 63rd Dr. That meant that I and Louise and my aide Cheryl had a private bus for 99% of our journey. For those of you who don't take the public buses, this is a huge time saver, since stopping at every bus stop and picking up/dropping off passengers can take a lot of time. So, a few red lights [Queens Boulevard is pretty well synchronized with traffic lights if you stay at a steady speed], were the only stops we made. And, Queens Boulevard is a six-lane mini-highway with a main express road and a service road, so we got to ride the service road. In short a normally 45+-minute ride was about 20 minutes and we were home in a jiffy. So that was really good transportation karma. All in all, it turned out to be a very successful day. I'm happy to report that, at the starting line I only ate a half-bagel with a cream-cheese smear. At the end point, I only had a few mini-muffins [yeah, I know -- sugar], and a diet coke [yes I know, I know]
On Saturday, May 22, I did a half-day with Ride for Life, a wonderful organization based out of Stony Brook University of the State University of New York [which happens to be my alma mater] in Eastern Long Island. Every year patients ride their motorized wheelchairs, with friends and family members walking alongside, from Montauk to Manhattan. Some people did the whole route and others did parts of the route. Since I really don't have a way to get my wheelchair outside New York City, I do the NYC portion when I can. This year, I met the group at Washington Square Park [West 4th] and we went all the way to Columbia University [West 116th] --approximately 5 miles. Louise walked part of the way and rode part of the way in someone's van [recent knee surgery] and my aide Cheryl walked the whole way!! [yay to both of them!!]. We had refreshments at Columbia and lunch at Washington Square Park. The weather was perfect. Ride for Life is a fantastic grass-roots organization that was started by Chris Pendergast, a former teacher in Northport, Long Island [fellow alum from Stony Brook University]. Each year the Ride, and other smaller events, raises money for research, patient services, and grants for things like respite care and home modifications. And, another important accomplishment of Chris and Ride for Life is the establishment of an ALS clinic at Stony Brook University Hospital. Formerly, Long Island patients had to go to NYC [Columbia, Beth Israel, or Cornell] for their interdisciplinary team care. As parts of Long Island [Suffolk County] can be 70 miles from Manhattan, this was a major hardship. So the Stony Brook facility is a godsend!! Chris has been living with ALS for 17 years and, despite the hardships of living with this devastating disease, still runs Ride for Life year-round, with his wife Christine and a small [but dedicated] office staff and volunteers. Check out their website and see what one man has done despite a disabling illness, and with a team of volunteers and little overhead expense.
Thursday, May 6, 2010
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!
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