ferncohen.com
Reality check!!!! The estimates for this remodeling are coming in at about $6500.00, which is a good $5500 more than I have put aside. One look at my finances revealed that I can’t spend any more money that I don’t have; my monthly charges are higher than they should be already. I have to explore ways to raise funds, and this is all stressing me out, as if ALS wasm’t stress enough. I’ve cancelled Netflix and I just cancelled my audible.com membership. I am trying to figure out what other corners I can cut. I am going to resign from NYC Metblogging this morning, because it is getting harder and harder to write about the city when I can hardly get out anymore. And if I am feeling overwhelmed, I fully empathize with the people out there who have jobs, children, etc. I am totally understanding why people just can’t come around anymore.
My eBay stuff isn’t selling as well as I thought it would. My energy level is going down, down, down. And two of my aides in particular are burning out; and even if they admitted they’ve had enough and want to leave, it would be too difficult to orientate a new person or two. It is I who have to do the training, since there is nobody who is here often enough to know the daily routine. And that is exhausting for me, especially since I can’t speak. Everybody is sick of emptying the portable commode and giving sponge baths. And I still have not found a good way to wash my hair. The dry shampoos and “no rinse” shampoo caps make my hair look like straw. And the local salons want from $30-$40 for a shampoo and blow-dry (nobody just does a shampoo). Inquiries at several local salons showed me that the $32 I paid for the shampoo/blow-dry last month was in the ballpark.
So I don’t see life getting better for a while, if at all. And by “better life”, I mean the luxury of a shower and shampoo!! As much as the aides wash me down well, I never feel really clean. I have been researching government grants, but have come up with nothing. I thought I had something last week through United Cerebral Palsy, but found out it doesn’t apply to Queens. I feel so drained and hopeless.
I went to Haley’s house for Thanksgiving. It was so good to see the family again. But I found myself very emotional when it was time to leave. I could not bring my bi-pap because it was too much for Ellita to carry with maneuvering the manual wheelchair. My dad is still struggling with colitis and the bladder cancer. I should be helping HIM out. I should be doing “aunt” things with the kids. I should not be the one who has to be cared for. I think that was the reason for the tears.
Friday, November 23, 2007
Wednesday, November 14, 2007
RIP Roberto, You're So Vain (You Probably Think This Blog Is About You)
ferncohen.com
We lost Roberto this morning. He had been intubated and it was time to remove the tube, so he chose not to go on mechanical ventilation. The choice of whether or not to have a tracheotomy and live with mechanical ventilation is the decision ALS patients all have to make well before it becomes an emergency issue. I will really miss Roberto. He and his sisters were a big comfort to me. His sister Rachel was his main caregiver until a few months ago when he got home care through hospice. Rachel and Roberto’s other sister Ivette regularly attended both of my monthly support groups. I hope I still get to see them. I am waiting to find out when and where the wake/funeral is.
I had a contractor here yesterday. I liked him and I was excited about having him do the work. But this morning he emailed me, and I realized that he wasn’t planning to take down the wall going into the bathroom, and I need that down so I can get on the other side of the pipe to reach the toilet, and so I can have better access to the refrigerator. Suddenly I’m frustrated again. The contractor who was supposed to call me on Monday, finally called tonight. He’s coming Saturday for an estimate. When it rains, it pours. I just can’t wait to get a little dignity back, with a shower, a shampoo, and even a little food prep. Basic stuff.
I am just so tired of getting emails where people judge me because I write about the emotions that go with this disease. Just because I mourn the things I have lost, it doesn’t mean that I don’t appreciate what I have. When I say that I feel lonely and isolated, it doesn’t mean that everybody needs to send me emails about how they are thinking of me and praying for me. I don’t need to be told that I sound too angry and the anger and frustration may not make for a pleasant read. Nobody twists their arms to read this. They can choose not to. I KNOW there are people worse off than I, children with cancer, people dying. Because I mourn the ability to get in my car and drive, or to talk on the phone, it doesn’t mean that I a not thankful that I can use my hands, for now anyway. I don’t know why everybody thinks I am talking about THEM. “I know you were talking about me in your blog when you said nobody comes to visit. You made me look bad…….etc etc” Feelings are feelings, ALS or no ALS. If I’m angry, I am allowing myself to be angry, disappointed, frustrated. It doesn’t mean I am like that all the time. But sitting here with my aide, TV, and laptop in a studio apartment, where I can’t get into my own bathroom and kitchen doesn’t cheer me up either. Andrea Bryant is coming on Saturday, so I’m looking forward to that.
Anyway, I am totally bummed out about Roberto. But, at the same time, I am blessed to have known him. Evidently, he had a lot of friends, who came to visit him until the end. He was always grateful for that. I’m sure I will meet them all at the funeral.
Sunday, November 11, 2007
National Caregivers Month
ferncohen.com
November is National Caregiver Month! So I am going to talk about caregivers, because the focus is always on the patient, and caregivers are our “unsung heroes”
But first, I ask everybody to keep David Deutsch and Roberto Rosado in your prayers
David was the recipient of an award at this year’s Wings Over Wall Street fundraiser. He was a teacher at Northport High School before ALS. He is in Stony Brook University Hospital with acute pancreatitis.
Roberto has become a good friend, and a big inspiration to me. If you watched the Jerry Lewis MDA Telethon last year, you might have caught Roberto and his two sisters profiled. Roberto was a recipient of an award at Wings a few years ago. He is in Lenox Hill Hospital.
Three women who were also great comforts to me online, have passed on. Edith, RuthAnn, and Cookie were on my “Living with ALS” yahoo group. In some of my darkest moments, their love came through in powerful emails. I am especially sad about Cookie, whom I had the pleasure to meet in person in DC. I am still in shock over her death because when I saw her in May she had traveled with a friend, and was managing with minimal help. A month later, she wrote to me, excited about the wheelchair van her husband bought for her. She was driving herself! And in July she took a cruise. She was full of life and in DC in May, she was talking perfectly!
It is always very difficult for me when another ALS patient dies, but even harder to take when someone dies who was diagnosed the same time as I was, or later. Both Cookie and RuthAnn lived with ALS about as long as I have. But the end can come suddenly, with an infection or, more commonly, with pneumonia. Of course this is true for anybody. So I am reminded all the time how we have to cherish each day, and appreciate the people we lovem because we can lose them in a minute.
Back to caregivers
Giving care to me, and other ALS patients, seems the ultimate in thankless work. Even though I have paid caregivers, the pay is pitiful. I bought each of my caregivers some nice bodywash to commemorate National Caregivers Month, because it was all I could afford. But I wish I could do more. My caregivers do everything for me, right down to the most personal tasks. It can’t possibly be gratifying, either monetarily or spiritually. And especially since I became unable to get in my bathroom to shower or toilet, and can’t even get into my kitchen to get a snack, they have had to work extra hard. I am lucky because I was able to qualify for Medicaid, which covers aides 24/7. I made up my mind at the beginning that I didn’t want to burden family, who have their own lives to manage. I have always been so independent. Few people know what a huge burden it is to care for an ALS patient. I also didn’t want to go to a nursing home until I absolutely had to. So I did what was necessary to qualify for this coverage. When I look at exhausted caregivers at my support groups, I am happy I went this route.
And, by the way, my discussion here does not only apply to ALS. Many of us will be faced with the care of an elderly parent some day. Many people are already in that position.
Not everybody qualifies for, or wants to do the “spend-down” to qualify for Medicaid. Medicare does not provide for round-the-clock home care, and most private insurance does not, either. And, a fact I just recently learned – long-term care insurance, which is very expensive, will not cover certain illnesses. I met a man recently who paid through the nose for this insurance while he was young and healthy. When he was diagnosed with ALS, he went to activate his benefit, only to find out his policy didn’t cover neurological diseases! If the patient doesn’t qualify for Medicaid, the burden of care falls on a spouse, parent, child, significant other, or close friend. Medicare will only pay for home care if the patient is also receiving a skilled service, such as physical therapy, occupational therapy, or wound care. Those skilled services are usually only for a limited period of a few weeks, and the home aide is usually only authorized for 2-4 hours a day, 2-5 days a week. The exception is hospice aka palliative care for which the patient must be expected to only have six months or less, to live. Hospice will provide home care for 6 hours a day, as well as visits from a doctor, a nurse, a social worker, and a member of the appropriate clergy. The only caveat here: hospice will not pay for equipment such as wheelchair, ventilators, or cough-assist. So the patient has to make sure s/he has all that before getting hospice services.
More often than not, the burden of care falls on the family, I have seen some arrangements whereby a close friend is a caregiver, but this is rare. There is also something called a “share the care” group, in which a team can be formed to split up the care of a patient. This is rare too, and only works if the patient has a very large social network, or belongs to a tight-knit religious community. Family caregivers really suffer. I see spouses of PALS who can’t even go for a salon appointment or just for a relaxing walk or social event, because they cannot leave the patient, I have a friend in New Jersey whose husband is a severely-disabled stroke survivor, and whose parents are both ill. In order for her to go to help out her parents, she has to dress her husband and load him in her van to take him with her. She can’t leave him in the house alone. There is a married couple in my support group – P. and S. P.’s ALS has affected his upper body and he has no use of his hands. Luckily, S. can speak, so he has a program on his computer called “Dragon Naturally Speaking”. This is a voice-to-text program, so he speaks and the computer types. It is the reverse of my Mercury, which speaks what I type. But S. can’t wipe his nose or feed himself. So P. doesn’t want to leave him alone. Lately she has hired an aide out-of-pocket to be with S., and she can finally get out for a few hours a day for “me” time.
“Respite care” or relief of the caregiver is extremely important. One of the nicest things you can do for a caregiver, is to offer to sit with the patient for a while, so that the caregiver can relax. If the caregiver is exhausted, sick, angry, or resentful, s/he is no good to the patient, If the burden of care falls on one member of the family, as it usually does, the other family members, or friends, should provide respite care to relieve the caregiver whenever possible.
And lastly, let me say that “care” is not only personal care of a patient. Beyond bathing, dressing, toileting, and cooking, there are other ways to “care” for a patient. Depending on the abilities of the patient, you can take him/her out for coffee, bring a DVD to watch together, read to him/her, or just sit and talk over a cup of tea. So many people freeze up when a friend or family member gets sick. “I don’t know what to do/say”, they think, especially when the disease is devastating. But little things go a long way. And, when that patient has an unpaid caregiver, a visit can mean the world to that family member or friend who finally has the chance to have some “me” time. If you know someone who is taking care of a loved one, do what you can to brighten their day. If you can offer to visit with the patient for a couple of hours, this would not only give the patient some pleasure, but would give respite to the caregiver. Or maybe offer to do some housework, bring a meal, or watch any young children that may be in the house. Caregivers need care too.
November is National Caregiver Month! So I am going to talk about caregivers, because the focus is always on the patient, and caregivers are our “unsung heroes”
But first, I ask everybody to keep David Deutsch and Roberto Rosado in your prayers
David was the recipient of an award at this year’s Wings Over Wall Street fundraiser. He was a teacher at Northport High School before ALS. He is in Stony Brook University Hospital with acute pancreatitis.
Roberto has become a good friend, and a big inspiration to me. If you watched the Jerry Lewis MDA Telethon last year, you might have caught Roberto and his two sisters profiled. Roberto was a recipient of an award at Wings a few years ago. He is in Lenox Hill Hospital.
Three women who were also great comforts to me online, have passed on. Edith, RuthAnn, and Cookie were on my “Living with ALS” yahoo group. In some of my darkest moments, their love came through in powerful emails. I am especially sad about Cookie, whom I had the pleasure to meet in person in DC. I am still in shock over her death because when I saw her in May she had traveled with a friend, and was managing with minimal help. A month later, she wrote to me, excited about the wheelchair van her husband bought for her. She was driving herself! And in July she took a cruise. She was full of life and in DC in May, she was talking perfectly!
It is always very difficult for me when another ALS patient dies, but even harder to take when someone dies who was diagnosed the same time as I was, or later. Both Cookie and RuthAnn lived with ALS about as long as I have. But the end can come suddenly, with an infection or, more commonly, with pneumonia. Of course this is true for anybody. So I am reminded all the time how we have to cherish each day, and appreciate the people we lovem because we can lose them in a minute.
Back to caregivers
Giving care to me, and other ALS patients, seems the ultimate in thankless work. Even though I have paid caregivers, the pay is pitiful. I bought each of my caregivers some nice bodywash to commemorate National Caregivers Month, because it was all I could afford. But I wish I could do more. My caregivers do everything for me, right down to the most personal tasks. It can’t possibly be gratifying, either monetarily or spiritually. And especially since I became unable to get in my bathroom to shower or toilet, and can’t even get into my kitchen to get a snack, they have had to work extra hard. I am lucky because I was able to qualify for Medicaid, which covers aides 24/7. I made up my mind at the beginning that I didn’t want to burden family, who have their own lives to manage. I have always been so independent. Few people know what a huge burden it is to care for an ALS patient. I also didn’t want to go to a nursing home until I absolutely had to. So I did what was necessary to qualify for this coverage. When I look at exhausted caregivers at my support groups, I am happy I went this route.
And, by the way, my discussion here does not only apply to ALS. Many of us will be faced with the care of an elderly parent some day. Many people are already in that position.
Not everybody qualifies for, or wants to do the “spend-down” to qualify for Medicaid. Medicare does not provide for round-the-clock home care, and most private insurance does not, either. And, a fact I just recently learned – long-term care insurance, which is very expensive, will not cover certain illnesses. I met a man recently who paid through the nose for this insurance while he was young and healthy. When he was diagnosed with ALS, he went to activate his benefit, only to find out his policy didn’t cover neurological diseases! If the patient doesn’t qualify for Medicaid, the burden of care falls on a spouse, parent, child, significant other, or close friend. Medicare will only pay for home care if the patient is also receiving a skilled service, such as physical therapy, occupational therapy, or wound care. Those skilled services are usually only for a limited period of a few weeks, and the home aide is usually only authorized for 2-4 hours a day, 2-5 days a week. The exception is hospice aka palliative care for which the patient must be expected to only have six months or less, to live. Hospice will provide home care for 6 hours a day, as well as visits from a doctor, a nurse, a social worker, and a member of the appropriate clergy. The only caveat here: hospice will not pay for equipment such as wheelchair, ventilators, or cough-assist. So the patient has to make sure s/he has all that before getting hospice services.
More often than not, the burden of care falls on the family, I have seen some arrangements whereby a close friend is a caregiver, but this is rare. There is also something called a “share the care” group, in which a team can be formed to split up the care of a patient. This is rare too, and only works if the patient has a very large social network, or belongs to a tight-knit religious community. Family caregivers really suffer. I see spouses of PALS who can’t even go for a salon appointment or just for a relaxing walk or social event, because they cannot leave the patient, I have a friend in New Jersey whose husband is a severely-disabled stroke survivor, and whose parents are both ill. In order for her to go to help out her parents, she has to dress her husband and load him in her van to take him with her. She can’t leave him in the house alone. There is a married couple in my support group – P. and S. P.’s ALS has affected his upper body and he has no use of his hands. Luckily, S. can speak, so he has a program on his computer called “Dragon Naturally Speaking”. This is a voice-to-text program, so he speaks and the computer types. It is the reverse of my Mercury, which speaks what I type. But S. can’t wipe his nose or feed himself. So P. doesn’t want to leave him alone. Lately she has hired an aide out-of-pocket to be with S., and she can finally get out for a few hours a day for “me” time.
“Respite care” or relief of the caregiver is extremely important. One of the nicest things you can do for a caregiver, is to offer to sit with the patient for a while, so that the caregiver can relax. If the caregiver is exhausted, sick, angry, or resentful, s/he is no good to the patient, If the burden of care falls on one member of the family, as it usually does, the other family members, or friends, should provide respite care to relieve the caregiver whenever possible.
And lastly, let me say that “care” is not only personal care of a patient. Beyond bathing, dressing, toileting, and cooking, there are other ways to “care” for a patient. Depending on the abilities of the patient, you can take him/her out for coffee, bring a DVD to watch together, read to him/her, or just sit and talk over a cup of tea. So many people freeze up when a friend or family member gets sick. “I don’t know what to do/say”, they think, especially when the disease is devastating. But little things go a long way. And, when that patient has an unpaid caregiver, a visit can mean the world to that family member or friend who finally has the chance to have some “me” time. If you know someone who is taking care of a loved one, do what you can to brighten their day. If you can offer to visit with the patient for a couple of hours, this would not only give the patient some pleasure, but would give respite to the caregiver. Or maybe offer to do some housework, bring a meal, or watch any young children that may be in the house. Caregivers need care too.
Thursday, November 1, 2007
ferncohen.com
I am trying to find a contractor for the renovation. If anyone knows a contractor s/he can recommend, send it on. They have to have all NYC licenses. I have the plan drawn out by Antoinette of the ALS Association.
I always get a little melancholy this time of year. I didn’t even put the “Trick or Treaters Welcome” sign on my door and didn’t buy candy. Just couldn’t get into it this year. Some mornings I can’t wait to get out of bed because I have so much to do, and other mornings I think “why bother”. Sometimes I value what little solitude I have, like when the aides go to do the laundry or shopping. And other times, I am agonizingly lonely and count the days to my next support group meeting or my next visit from my Jewish Federation volunteer. Sometimes I can live in the moment, and other times I worry – about whatever holiday is coming and whether I will have to go through it alone, about bills that need to be paid, about the “what ifs”, or sometimes I create something to worry about. Or even worse, I obsess about the “shoulda”, “coulda”, and “woulda”. I am now thoroughly convinced that if I had sold the apartment and moved to an expensive rentals, I would have been consumed by thoughts of “when the money runs out….”. When you own a house, condo or co-op, it’s hard to give up the “owner” mentality and become a renter, especially when the monthly payout of mortgage and maintenance is a lot less than rent, even in this area. It was probably a fantasy I was living out, and I guess I needed to go through it., and get it out of my system.
Twelve years ago, my mom died on October 29, and she was buried on Halloween, which happened to be her favorite holiday. So I get very melancholy this time of year. It always seems like everybody is having a lot more fun than I am. I am finally getting my rubber stamps and other craft supplies that I don’t use for sale on
eBay. I need to get rid of the stuff to make some room, and I also need to raise funds for the renovation.
Every once in a while, I get an unexpected surprise. Two of my former students sent emails. One did a search and found my blog, and the other found me on classmates.com, where I am listed as a faculty member for the
Academy of Environmental Science in Manhattan.
I am trying to find a contractor for the renovation. If anyone knows a contractor s/he can recommend, send it on. They have to have all NYC licenses. I have the plan drawn out by Antoinette of the ALS Association.
I always get a little melancholy this time of year. I didn’t even put the “Trick or Treaters Welcome” sign on my door and didn’t buy candy. Just couldn’t get into it this year. Some mornings I can’t wait to get out of bed because I have so much to do, and other mornings I think “why bother”. Sometimes I value what little solitude I have, like when the aides go to do the laundry or shopping. And other times, I am agonizingly lonely and count the days to my next support group meeting or my next visit from my Jewish Federation volunteer. Sometimes I can live in the moment, and other times I worry – about whatever holiday is coming and whether I will have to go through it alone, about bills that need to be paid, about the “what ifs”, or sometimes I create something to worry about. Or even worse, I obsess about the “shoulda”, “coulda”, and “woulda”. I am now thoroughly convinced that if I had sold the apartment and moved to an expensive rentals, I would have been consumed by thoughts of “when the money runs out….”. When you own a house, condo or co-op, it’s hard to give up the “owner” mentality and become a renter, especially when the monthly payout of mortgage and maintenance is a lot less than rent, even in this area. It was probably a fantasy I was living out, and I guess I needed to go through it., and get it out of my system.
Twelve years ago, my mom died on October 29, and she was buried on Halloween, which happened to be her favorite holiday. So I get very melancholy this time of year. It always seems like everybody is having a lot more fun than I am. I am finally getting my rubber stamps and other craft supplies that I don’t use for sale on
eBay. I need to get rid of the stuff to make some room, and I also need to raise funds for the renovation.
Every once in a while, I get an unexpected surprise. Two of my former students sent emails. One did a search and found my blog, and the other found me on classmates.com, where I am listed as a faculty member for the
Academy of Environmental Science in Manhattan.
Saturday, October 27, 2007
Emotional Lability AKA Pseudobulbar Affect
ferncohen.com
EMOTIONAL LABILITY aka “pseudobulbar affect” is actually a neurological symptom of ALS. It is uncontrollable fits of crying or laughing. Sometimes the laughing comes after the crying or vice-versa. Or sometimes there is just laughing, or just crying. It can be embarrassing, because sometimes it is inappropriate. But once it starts, it is so difficult to stop. It can be scary too, because it is something you have no control over.
When I get on a crying jag, I sob really loudly and then my breathing suffers. Prolonged laughing is healthier, but it affects my breathing if I can’t stop.
There is medicine, which helps. Mine is a liquid compound of quinidine and dextromethorphan, which is found in most over-the-counter cough medicines. My neurologist says that nobody knows why or how it works. This statement puzzles me because I don’t know how they discover a drug if they don’t know why or how it works. Oh well; however they found it, I’m glad it’s around.
Michael Zaslow, the soap-opera actor who died a few years ago of ALS describes this symptom at length in his book “Not That Man Anymore”. He talks of long and embarrassing episodes of crying, and of laughing in inappropriate situations. It had to be so puzzling to everybody around him to see a man blubbering for no apparent reason, especially since he was out in public so much. There is a very good discussion of emotional lability in Wikipedia at http://en.wikipedia.org/wiki/Emotional_lability
“While not as profoundly disabling as the physical symptoms of these diseases, labile affect can have a significant impact on individuals' social functioning and their relationships with others. In a disease such as Motor Neuron Disease, the majority of patients are cognitively normal; however, the appearance of uncontrollable emotions is commonly associated with learning disabilities. This may lead to severe embarrassment and avoidance of social interactions for the patient, which in turn has an impact on their coping mechanisms and their careers.”
Anyway, just another thing we people with ALS deal with.
EMOTIONAL LABILITY aka “pseudobulbar affect” is actually a neurological symptom of ALS. It is uncontrollable fits of crying or laughing. Sometimes the laughing comes after the crying or vice-versa. Or sometimes there is just laughing, or just crying. It can be embarrassing, because sometimes it is inappropriate. But once it starts, it is so difficult to stop. It can be scary too, because it is something you have no control over.
When I get on a crying jag, I sob really loudly and then my breathing suffers. Prolonged laughing is healthier, but it affects my breathing if I can’t stop.
There is medicine, which helps. Mine is a liquid compound of quinidine and dextromethorphan, which is found in most over-the-counter cough medicines. My neurologist says that nobody knows why or how it works. This statement puzzles me because I don’t know how they discover a drug if they don’t know why or how it works. Oh well; however they found it, I’m glad it’s around.
Michael Zaslow, the soap-opera actor who died a few years ago of ALS describes this symptom at length in his book “Not That Man Anymore”. He talks of long and embarrassing episodes of crying, and of laughing in inappropriate situations. It had to be so puzzling to everybody around him to see a man blubbering for no apparent reason, especially since he was out in public so much. There is a very good discussion of emotional lability in Wikipedia at http://en.wikipedia.org/wiki/Emotional_lability
“While not as profoundly disabling as the physical symptoms of these diseases, labile affect can have a significant impact on individuals' social functioning and their relationships with others. In a disease such as Motor Neuron Disease, the majority of patients are cognitively normal; however, the appearance of uncontrollable emotions is commonly associated with learning disabilities. This may lead to severe embarrassment and avoidance of social interactions for the patient, which in turn has an impact on their coping mechanisms and their careers.”
Anyway, just another thing we people with ALS deal with.
Friday, October 19, 2007
flashback 2003
ferncohen.com
So I have not touched a biology textbook since 9th grade, when I was 13 – I was in the honors track so I took Biology a year ahead, and I skipped a year in elementary school so I was a year young for my grade. That was 39 years ago. And I am on the research committee of Ride for Life, responsible, with about 10 others, to decide where the research funds are going. And, toward that end, Norma is forwarding a bunch of articles on cells, neurons, and viruses. I have learned that there is a subset of viruses called “prions”, which are similar to proteins. Some of the researchers think that prions might be a culprit that causes ALS.
Let’s flash back to 2003. Evidently, it was in the summer of 2003 that I noticed that something was very wrong, even though I had been treated for asthma a good ten years before, had a clumsy accident in 1993 and broke a toe, had another stupid accident in 1998 that resulted in a nasty sprained ankle, and started wearing a mouth guard in 1991 for jaw stiffness which the dentist figured was due to clenching and grinding my teeth at night. But in the spring/summer of 2003, strange things happened way too often. It didn’t take as long as some others to diagnose me. In the end, I diagnosed myself. You see, doctors don’t like to give this diagnosis because they like to be able to offer hope—a pill, a medicine, a surgery, a change of diet or lifestyle, chemotherapy, physical therapy, any therapy, radiation, or any other treatment.
I made it very simple for Dr. Rubin at Weill=Cornell. I had done my research on the internet, so I said “I have ALS”, and he responded with “Let’s hope not. Call me in two weeks when we get the results of the blood tests. Hopefully, something will come back positive, and we’ll find out you have something else.” ‘
“I hope we don’t find out I have something worse”, I said
“There is nothing worse than ALS”, he answered.
In the next two weeks, I tortured myself. I read everything about ALS. I read how there was no cure and no effective treatment. In the 150 years since ALS first identified in France, and in the 60 years since Yankee Lou Gehrig was diagnosed, they have only come out with one drug – rilutek—and that is supposed to have minimal effect.
I was in my school’s computer lab two weeks later. It was January Regents Exam week, so we weren’t teaching; we were proctoring exams, and I was on one of those long breaks between proctoring assignments. I called Dr. Rubin and got the bad news over the phone., despite the fact that doctor’s are advised, I learned later, to never give bad news like this any way other than face-to-face. My blood tests came back negative – negative for autoimmune disease, negative for Lyme Disease, and negative for anything else it might have been. I didn’t have anything better than ALS. The doctor told me to call Dr. Mitsumoto’s office at Columbia to “get into a drug trial”. His parting words to me were “good luck to you”. I remember going into that combination mode of shock mixed with “let’s forge ahead and see what I have to do”, There were other teachers in the computer lab who knew that I had just come off an important phone call, so I turned to them and said “I have a fatal illness. I’m going to be in a wheelchair and then die”, before I walked out.
I went into my classroom and called Haley. She called back a little while later and said she had called the ALS Association. I guess there is a certain amount of denial that kicks in. You make phone calls, you go on the internet, you do anything you can. The inevitable is not an option at that point. So when, a year later, I had the bathroom renovated, the tub was pulled out and a shower stall put in, but one day I knew I would not be able to get into the bathroom because I would be totally wheelchair-dependent, and a wheelchair wouldn’t fit. On to renovation #2.
So I have not touched a biology textbook since 9th grade, when I was 13 – I was in the honors track so I took Biology a year ahead, and I skipped a year in elementary school so I was a year young for my grade. That was 39 years ago. And I am on the research committee of Ride for Life, responsible, with about 10 others, to decide where the research funds are going. And, toward that end, Norma is forwarding a bunch of articles on cells, neurons, and viruses. I have learned that there is a subset of viruses called “prions”, which are similar to proteins. Some of the researchers think that prions might be a culprit that causes ALS.
Let’s flash back to 2003. Evidently, it was in the summer of 2003 that I noticed that something was very wrong, even though I had been treated for asthma a good ten years before, had a clumsy accident in 1993 and broke a toe, had another stupid accident in 1998 that resulted in a nasty sprained ankle, and started wearing a mouth guard in 1991 for jaw stiffness which the dentist figured was due to clenching and grinding my teeth at night. But in the spring/summer of 2003, strange things happened way too often. It didn’t take as long as some others to diagnose me. In the end, I diagnosed myself. You see, doctors don’t like to give this diagnosis because they like to be able to offer hope—a pill, a medicine, a surgery, a change of diet or lifestyle, chemotherapy, physical therapy, any therapy, radiation, or any other treatment.
I made it very simple for Dr. Rubin at Weill=Cornell. I had done my research on the internet, so I said “I have ALS”, and he responded with “Let’s hope not. Call me in two weeks when we get the results of the blood tests. Hopefully, something will come back positive, and we’ll find out you have something else.” ‘
“I hope we don’t find out I have something worse”, I said
“There is nothing worse than ALS”, he answered.
In the next two weeks, I tortured myself. I read everything about ALS. I read how there was no cure and no effective treatment. In the 150 years since ALS first identified in France, and in the 60 years since Yankee Lou Gehrig was diagnosed, they have only come out with one drug – rilutek—and that is supposed to have minimal effect.
I was in my school’s computer lab two weeks later. It was January Regents Exam week, so we weren’t teaching; we were proctoring exams, and I was on one of those long breaks between proctoring assignments. I called Dr. Rubin and got the bad news over the phone., despite the fact that doctor’s are advised, I learned later, to never give bad news like this any way other than face-to-face. My blood tests came back negative – negative for autoimmune disease, negative for Lyme Disease, and negative for anything else it might have been. I didn’t have anything better than ALS. The doctor told me to call Dr. Mitsumoto’s office at Columbia to “get into a drug trial”. His parting words to me were “good luck to you”. I remember going into that combination mode of shock mixed with “let’s forge ahead and see what I have to do”, There were other teachers in the computer lab who knew that I had just come off an important phone call, so I turned to them and said “I have a fatal illness. I’m going to be in a wheelchair and then die”, before I walked out.
I went into my classroom and called Haley. She called back a little while later and said she had called the ALS Association. I guess there is a certain amount of denial that kicks in. You make phone calls, you go on the internet, you do anything you can. The inevitable is not an option at that point. So when, a year later, I had the bathroom renovated, the tub was pulled out and a shower stall put in, but one day I knew I would not be able to get into the bathroom because I would be totally wheelchair-dependent, and a wheelchair wouldn’t fit. On to renovation #2.
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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