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 Program 3: A Death of One's Own (Page 1)
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| Author | Topic: Program 3: A Death of One's Own |
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elizowen Administrator Posts: 17 |
posted 08-24-2000 09:16 AM
  
"A Death of One's Own" explores the choices surrounding dying, including physician-assisted suicide, terminal sedation, the withdrawal of nutrients and hydration, and the implications for families, institutions and communities. |
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clydia Member Posts: 3 |
posted 09-09-2000 11:58 AM
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clydia Member Posts: 3 |
posted 09-09-2000 12:03 PM
This is a difficult topic because many people believe a person nearing the end of life need nutrients and hydration. In actuality, when people died at home, they gradually lost consciousness and lapsed into a coma-like condition and experienced much less pain. Providing hydration and nutrients via IV's and feeding tubes not only prolongs the death process but increases the amount of pain. Unfortunately, when in a hospital, the doctor always feels as if they must do something, so they order IV's and nutrients and blood work. The general lay person is forced to accept the doctor at his/her word and goes along with whatever is suggested. |
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pasq31 New Member Posts: 1 |
posted 09-11-2000 10:51 PM
I think this is a wonderful program and brings to light many issues with death and dieing. I would like to know though, why is it the medical profession and hospice, do not tell the family that in the quest for pain management, that usually the strong opiates perscribed are what induces coma, and suppresses the respiratory system, so that the drugs is the ultimate cause of death? They are so honest and straightforward about being terminally ill, and saying death is imminent, but this part of it, they really don't like to discuss. Why? Is it because of the legal/ethical complications of this? Isnt this a form of euthanasia? Thank you for your replies. :-) |
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kemp78 New Member Posts: 1 |
posted 09-12-2000 10:54 PM
Having lost my 17 year old son 4 years ago I can fully understand how the dying person wants to die at home with the least amount of pain and with people who love them.Medical people don't hide the name or use of medicine,I feel that everyone who is involved with a dying person has some idea of what each drug is for. The very fact that this topic is on PBS shows that people want to know what to do,how can it be done and what choices we have. There is no greater love than allowing your love one to be in their own home and on there own terms |
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DLRoberts Member Posts: 6 |
posted 09-12-2000 11:12 PM
As usual your 3rd session With Eyes Open touched me profoundly. With the passing of my 47 year old brother this past April 30th I find myself isolating and having to really work through my grief. Our lives changed started to change a few days after Mothers Day 1999 when he was diagnosed with Glioblastoma Multiforme, an incurable brain cancer. From the very beginning I made a promise to him that I would be right by his side through the whole thing. I would stay all night with him periodically in the beginning and finally moved in the first part of April. He never had to ask me to do that...it was just something I knew I would lovingly do. I immediately started to research everything I could on GBM since I had never heard of this disease. I didn't take the doctor's diagnosis of not being able to operate to finding another doctor at Cleveland Clinic who would. One has to become an advocate on behalf of someone who is unable to do that for themselves. In our society too often we just accept what the medical profession tells and we may miss opportunities that might help in some ways. By the time I moved in with him he was in a wheel chair, lost almost all communication, and was dependent on others for almost everything. I was very lucky to have a job that would allow me to take time off work to be with him although there were times I would take him to work with me if something needed to be done. It was the hardest work I have ever done in my life but the most rewarding. To hear other caregivers talking about wanting to just leave and never come back is exactly what I felt at times. Then I would feel guilty about thinking that. I felt guilty because I could talk, guilty because I could walk, guilty because I could find humor in things. The hardest thing was knowing my brother hated all of this attention and his main concern was always me..never himself. He felt guilty because I had to give up my daily life for him. As hard as it was I would do it again in a heartbeat. I miss him terribly and have finally started attending a grief support group for myself. In my family we each grieve differently; but I think the 24/7 time I had with him has left me feeling adrift in a world of knowing I can never see my brother again, until it is my time to pass on to another world. This series is a blessing to me and so many others. Thank you |
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Pat Member Posts: 14 |
posted 09-13-2000 01:05 AM
I am sorry to hear of the loss of your son. I have a very encouraging Bible based brochure entitled "When Someone You Love Dies". It not only discusses the mourning process but also shares a very hopeful view of the future based on your own copy of the Bible. There are scriptures cited for you to look up so that you can see that the information is trustworthy as it is coming from the Bible itself. There is no charge for the brochure and I would be happy to send it to any one who is interested, as I feel it can truly be of comfort to anyone who has lost a loved one in death. Please email me at the above address if you would be interested in reading this.
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Pat Member Posts: 14 |
posted 09-13-2000 01:06 AM
I am sorry to hear about the loss of your son. I have a very encouraging Bible based brochure entitled "When Someone You Love Dies". It not only discusses the mourning process but also shares a very hopeful view of the future based on your own copy of the Bible. There are scriptures cited for you to look up so that you can see that the information is trustworthy as it is coming from the Bible itself. There is no charge for the brochure and I would be happy to send it to any one who is interested, as I feel it can truly be of comfort to anyone who has lost a loved one in death. Please email me at the above address if you would be interested in reading this.
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Barbara Clark New Member Posts: 1 |
posted 09-13-2000 02:41 AM
Re: program #3 I've been watching the series with rapt attention. Tonight, however, I felt that something was missing for all three of the people you selected to show us. Where was the church community of the wife of the ALS patient? When she talked about missing her church on Sundays and Wednesdays, I felt doubly, triply sad for her. Wasn't there a caring community at church that would have come to help them? There must have been, and why was that not a part of the story? The quality of life for someone dying seems to need a circle of friends in addition to the primary caretakers. |
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kathyharlan New Member Posts: 1 |
posted 09-13-2000 08:41 AM
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kathi53 New Member Posts: 1 |
posted 09-13-2000 09:09 AM
I have watched the first 3 episodes and I thank PBS & Bill Moyers for this series. I only wish it had been available 2-3 years ago. Both my husband & I would have benefited from watching it and hopefully discussing it. Last year I lost my parents and my husband in a 7-month period. I was the primary caregiver for all three. My father died first, he was 92 and had a final heart attack after several years of weakening. Mom had Parkinsons and progressed gradually over the years. A final broken hip put her in the hospital where the surgery was the final straw - she really gave up on life when Daddy died. She was 85. Mom & Dad lived in an assisted living apartment and I took care of their bills, shopping Dr. visits and visited as often as possible. No other family close by. My husband had MS for nearly 20 years and in '97 reached the point of being bed & wheelchair bound. Home health came 3x week to bathe him & change his cathetar, but the daily routine was ours. Our daughter came home to live with her new baby and she cared for him and the baby during the day while I worked or when I was with Mom & Dad. We had to do it all - he was bowel & bladder incontinent, could not feed himself, dress himself etc. He would not talk abaout the future and we were always led to believe that MS is not terminal - he could go on for years like this. We finally reached the point where we had to put him in a care facility, but then his throat shut down - couldn't swallow or talk, into hospital for feeding tube, developed pneumonia and died 3 months after leaving home. Looking back now I would not put the feeding tube in now. He would not and finally could not talk about what he wanted. Daddy died Oct'98, husband died Feb 99, Mom died May 99 and I died a little with each one. My friends were wonderful support for me, their friends disappeared. Is it generally harder for men to watch each other deteriorate? I think we do tend to want to protect others from the dirty little daily duties. We go on pretending that we can do it alone. I think this series could have been a great help in preparing us for what to expect and in seeking out help. Advocates are hard to find in rural areas. Thank you for allowing me to ramble - this episode was just too close to home and brought back all the emotions and tears. The aloneness after losing the caregiver roll is overwhelming. That role so totally defined me for so long that I don't know how to live without it. |
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Boodiemay Member Posts: 2 |
posted 09-13-2000 11:16 AM
I just wanted to tell you that I know exactly how you feel when you say that about the losing the caregivers roll. My sister and I were the primary care givers for my Mother. We bothed lived out of town and had to leave our families to go take care of our Mother. It was an awesome time and we both feel that we were so blessed to be able to do this for our Mom. But when she passed away and we went back home I think we both felt lost. It was so hard to get back to our normal routine of doing things. It is still very hard for us but I am praying after we get through this first year things will get better. I think a lot of our problem is that we got so close to our brothers when we were there, that not only do we miss Mom we also miss being together as a family. I don't know if that makes sense or not to anyone who has not been through this. Anyway (sorry I kind of got off of the subject) I just wanted to tell you I do know how you feel. I am praying this lost feeling will get better.And thanks for allowing me to share some of my feelings with you. quote: |
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Alpha New Member Posts: 1 |
posted 09-13-2000 01:07 PM
Because the death itself for all mortals is inevitable, the human being has the right to live only with the highest life quality that possible. Thus when the life quality deteriorates to constant and continuous suffering, both physical and mental, with a tendency to go in one direction only - worsening every day and with no hope for cure - what is a point to continue such existence? Popular proverb says: when there is life - there is hope. Wrong: when there is HOPE there is LIFE. But what if hope exists no more? Contemporary law supplied in most of the states of USA for terminally ill patients plays a role of an executioner sadistically enjoying in prolongation of his victim's suffering. It's necessary to understand just one thing - it's not a doctor, or any compassionate relative of the terminally ill patient, who, by performing "assisted suicide", kills this patient, but it is a fatal disease that already killed this human being, and the only reasonable thing that responsible people can do in this case - is to participate in delivering or at least do not obstruct patient's efforts to deliver himself out of this infernal torture. And my first-hand experience (with my mother who died of metastatic colon cancer at home) only supports this position in my eyes. |
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jd Member Posts: 3 |
posted 09-13-2000 02:49 PM
Last evenings show made me so sad and depressed for all the suffering these people endured. Since my husband is a terminal cancer patient and is wheelchair bound part of the time I know how difficult it is to lift this equipment and a patient as well. I could not believe that there were not people there to help and support them. I do most of the care taking of my husband but have had many offers from people in our church, the school where I teach, and my family. Believe me you need these people. There is not any good way to die. People have told me we are lucky because we have had time to plan and be together and will get to say good=bye while their spouses died suddenly. Saying good-bye is saying good-bye. I could understand how these people would like drugs to make the process easier and less painful but I would not want to be the one to administer them. Sometimes when I am giving my husband his meds I feel like I am taking his life not helping to prolong it or make it better. You have many mood swings as a caregiver and also as the patient. Life is not easy,nor is death. |
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Beverly Ross New Member Posts: 1 |
posted 09-13-2000 05:00 PM
quote: I had the same questions you did. I can see reasons for the editors/producers to have omitted these questions from this particular program, because they don't directly relate to the question of physician-assisted suicide. However, the three patients' stories demonstrate how the caregivers' lives are so intertwined with the patients', and Sue's story as caregiver is really incomplete when we are not told whether she didn't want to ask for help from her church for reasons like those she gave for not asking for help from her children's families, or their farm was too far away from other church members', or most church members were too frail to contribute to the many chores that needed to be done around the house and farm, aside from the personal care tasks that Sue undoubtedly preferred to do for her husband. |
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Mom Member Posts: 2 |
posted 09-13-2000 06:27 PM
I've watched all three episodes so far and I applaude Bill Moyers and KCET for this program. It's REAL: it's insightful; it's controversail; it's thought-provoking, it's helpful. Having been the main caregiver for my 30 year old daughter in the last months of her life, I now know how very important these issues are for EVERYONE. Please run this series over and over again so that everyone has a chance to see it! |
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Earlyorphan Member Posts: 3 |
posted 09-13-2000 08:34 PM
quote: Four years ago I was immersed in caregiving for my dying father, dying grandmother, dying mother and a dying friend - they all left within 6 months of each other. My heart went out to you reading your posting - it is hard for people who have not lived in the land of the dying to understand how completely and intensely caregiving shapes ones life, and how very huge the hole is when the caregiving ends. Trying to travel back to "normal life" seems impossible after that journey and the terrible grief. I just wanted to tell you that my experience was that the 2nd year after the deaths was actually worse for me than the 1st year - some of the numbness and exhaustion finally wore off I think, leaving more room for pain. If you find things getting worse instead of better, please hold to faith that there will be a time when the pain will allow return from your journey - if not back to "normal life", at least to a place where life no longer seems to be demanding more of you than you can give. Good luck. |
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Kate New Member Posts: 1 |
posted 09-14-2000 06:11 PM
I think it was about at this time in the series that I started to wonder whether there might have been something about different cultural attitudes about dealing with death. I'm thinking particularly about the Navajo attitude, which is described so clearly in The Scalpel and the Silver Bear by Lori Arvis Alvord and which makes it very difficult for doctors and hospitals to work with the family of a dying patient. Then I wondered about the whole issue of willing one's death (there were a couple people who may have done that in the 4 parts); that is, who know that it is time to die and just do it. I think particularly of the Australian aboriginals, still living in the Outback, who simply walk into the wilderness at that time. But, of more interest in our culture, did the producers see any evidence of this or any of the doctors discuss such phenomena? Perhaps this is one aspect of the idea of "letting go" -- that is, the patient's letting go. There was a hint of this to be inferred once or twice, but no more. Did any of these doctors or hospice people talk to their patients in pain about how they might be able to "let go"? This was an excellent series, and so far the above matters are the only ones that have seemed to me like omissions. Perhaps they seemed appropriate for a different program -- and perhaps the series should have run to five to include them! |
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DSchempp New Member Posts: 1 |
posted 09-15-2000 05:09 PM
This is really a comment on the whole series, so I don't know where it goes. I thought that the third show where people talked about their desire to end their life early was very good, including the discussion about whether or not IV nutrition and hydration were required. However, the main comment I want to make is that I found many people did not watch this series because four days in a row was too much for them to handle. Now, most of these people also recorded the series, so there is the plan to go back and watch it, however, it is not clear whether or not they will. Outside of the emotional issues of dealing with this so intensely, is the fact that for those of us who go to work early, four nights in a row of staying up until 11 pm was exhausting. I would love for this to be reshown on a once a week schedule so that those who did not see it can, and those that gave up can go back to it in a slower manner. I think there would be more conversation if this happened. |
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janmom Member Posts: 2 |
posted 09-15-2000 08:40 PM
Amen! I have been very fortunate in that both of my parents have always been open and honest about death and their wishes. I lost my mother the end of June -- she had a myriad of illnesses (she was only 70), but the final illness was pneumonia. I had a Medical Power of Atty. and was able to, due to years of discussion between my mother and I, express her wishes to her health care providers. Hospice was contacted about 2 weeks prior to her death, but was not as much help as it could most certainly have been. There were issues as to whose "case" it was, and we were switched around about 3-4 times during the 2 week term. They did not let me know when they were coming, and if they did let me know, they never showed up at the alotted time. I feel very honored to have been able to care for Mom for the last 18months prior to her passing. I sold my home, left my job and was fortunate to be able to bring my 2 young daughters here to live and care for her. Not only was I assured that I was able to provide the best possible care for her and didn't have to worry about being 1500 miles away, it also brought the subject of death and dying to all of my children (24, 19, 8 & 5). During our time here, my daughters were able to view dying and loss firsthand. Not an easy lesson to learn for any age, it was much easier to be able to live with Mom and be able to express our love and feelings for one another firsthand. When Mom contracted pneumonia and was in the hospital at first, it was a very scary thing for anyone to watch. I finally said, "Enough!" and demanded that she be released. That is when Hospice (albeit ineffective in my opinion) became involved. The doctor in her case was able to follow my wishes and discontinue all heroic measures and give her plenty of medication to keep her comfortable. About a week before she passed, a week after being discharged from the hospital, she came "out" of it and told us all she loved us. I felt so very blessed. I thank PBS & Bill Moyers to have the insight to bring to light something that is such a taboo in our society. We can talk about anything else -- money, jobs, children and even our personal sex lives, but we cannot seem to address the issue of dying. As none of us (as far as I know)is able to avoid death, it should be a normal part of one's relationships' discussions. Most other cultures don't bury their head in the sand, but I guess because we are so obsessed with looking and being young, we think that we won't have to face it. Nice try, but not reality. We MUST be open and honest with those we love and express our wishes while we can. We must prepare for the final chapter of our lives, as we don't know when it will come. Tell your loved ones what your wishes are, tell them that you love and cherish them and that they are special and valuable to you. Love and laugh with on another, share your joy and life with those you value the most. |
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KMcGuire New Member Posts: 1 |
posted 09-17-2000 10:08 PM
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angela strandhagen New Member Posts: 1 |
posted 09-18-2000 08:50 PM
Your program was very poignant and bless you, Bill Moyer for bringing the issues out to the public. Death is inevitable and we all will come to that point in our lives as was the case of my 17 year old son who was diagnosed with osteosarcoma 4 years ago and lost his battle to this dabilatating disease at the age of 17. He underwent 7 operations, one of which lasted 11 hours. He was in constant pain and taking a variety of drugs to ease his pain. They basiclly governed his life but it also gave him some normalcy to his existance. Towards the end, the everyday medications were not working, and he had to resort to morphine. He was functional up until the end which was 3 days before he died. His wish was to die at home in his own bed and we honored that. He went to bed on Tuesday evening, was coherent for one day; the last two days he slowly surrendered his physical being over to the spiritual realm. All this time he knew of the presence of people and his fate. As we talked to him one by one, his hearing seemed to become more acute as the dying process continued. It was the most difficult time for his sister and brother to witness their brothers death, but he knew that they would be there for him in death as they were in life. Love conquers all! He died Friday at 1:55 p.m. |
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gparker New Member Posts: 1 |
posted 09-18-2000 09:15 PM
my husband is 43 and was just diagnosed with als (lou gehrigs) in january of this year. We watched the program together mainly because he wanted me to know what his last wishes were. I felt like we were watching ourselves on tv, everything said between that couple has been everything my husband and i have said to each other. I applaud Moyers on such an informative show, nobody ever wants to talk about subjects as these and they need to be discussed. I will do what ever my husband wishes when the time comes. I would have wanted him to do the same if it was me. I work a full-time, very physically demanding 3rd shift job and take care of my husband during the day. I get 3 hours sleep a day so I know how frustrating it can be. I don't have the luxury of leaving my job to take care of him, i wish i knew how i could spend all of my time with him. I would appreciate any replies from other caregivers having to continue working. |
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she4313 New Member Posts: 1 |
posted 09-22-2000 07:31 PM
First off, thank you Bill Moyers and PBS. Like others before me, I wish I had seen the series in 1998 - I have even watched the rerun they had on last Sunday. I also want to wish everyone good luck and God bless with their own situations. This is my first time here. I'm not sure which catagory fits my situation. They all sound like what I was going through, and continue to go through. In March of 1998 my Mom first got sick. I am an only child, so there was no help available. She was re-married, had 3 step-sons, but none offered any help. I love my Dad to death, but at age 82, there wasn't much he could do. I'll try and make this as short as I can. Please excuse me, if I get a little long winded. Mar 98: Hospital here in town. Home. Back in 2 weeks later. Emergency tracheotomy(?), put on a resperator. Stayed in ICU for 3 weeks. Apr 98: Transfered to rehap hospital in Atlanta - 60 miles away. After 8-10 hours a day at work, I would pick up my Dad and we would go to Atlanta. This went on until I was diagnosed with Graves Disease, and myself ended up in the hospital. That was the only day we missed seeing her. I still think he blames me for missing that one day. Jun 98: Found blood clots. Did a Vena Cava filter on her. Things were looking up. She started to eat again - she wanted pea soup! Wanted here hair washed, and her nails done. It was great. Then everything went sour. She started talking about dying. Pa and I were not ready for this. Drs. said there was a chance she would be able to come home soon. Even had her weened off the ventalator. One day a week turned into 2 and then by the end of Sept, it was every day. She refused solids, water and would pull out her feeding tube. They were threatening to tie her down. Couldn't bring her home; 24 hour care needed. Besides, the bed wouldn't fit through the front door. To make matters worse, I was getting sicker, Pa was loosing weight - at the present, he is 84 and weighs 106 lbs. On the day before my birth father's 72 birthday, he died of cancer. That was in Illinois. I have also lost my job, by this time. We had a meeting with the staff the 1st week in Oct. The decision was made and the paperwork done: she would get her wish. The vent would be shut off. They came in, started a morphin drip at 11:30 AM Tuesday Oct 13. Gave us a guess at about 5 or 6 hours. Mommy fooled them. She took her last breath at 12:30 AM Weds. Dr. assisted death? Yes. Her choice to dye? Yes. Was it the right thing to do? I don't know. She lived almost 12 hours, after they turned the vent off. I'm still not sure. Will probably never be. But, it's over now. I'm still alive and still taking care of Pa. Have a good job, with understanding people. Couldn't ask for anything more: except for my Mom to be here to see her new great-grandson. Thanks for listening and your time. Sheila |
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laura New Member Posts: 1 |
posted 10-07-2000 11:38 AM
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The biggest problem we encountered was the lack of home health aid (HHA) assistance. We were only given 1.5 hours a day of HHA help! Medicare / Hospice would not give us any more time. The nurse only came once a week, until I complained and then we got a nursing visit 3X a week (1-2 hours per visit). This meant almost 22.5 hours a day was on my shoulders. It was exhausting and frustrating, knowing that Medicare could (and should) be providing much more to this American family, which was accompanying a loved one as he died. This is why I had to leave work: there was no one else to care for Dad. The taxes and Medicare he had paid into for 50 years of his professional, working life was totally inadequate. My husband, brother, my colleagues at work, and I were all affected and stressed by this situation, not just Dad. Dad did not want to go into a nursing home and I would never place him in such an inhumane place, so that was never an option. I have seen firsthand the abuse and neglect that goes on in American nursing homes. But, Medicare would have paid for him to be in a nursing home for 24 hour a day care. At home we got 1.5 hours...in an institution he would get 24 hours. The nursing home would "care" for Dad for 100 days...and then they would begin the insidious process of bleeding Dad's family resources dry to pay for additional "care" within their institutional walls. So, if the average Hospice stay is 6 months, the nursing homes get reimbursed (guaranteed!) by Medicare for 3 months and then they get to tap the family bank accounts for the remaining 3 months. And the private pay rate and reimbursement to them from families is a heck of a lot higher than the per diem Medicare rate. Nice business proposition for these big, for profit businesses, don't you think? Somebody developed a great business plan for them...at the expense of American families. Why are we, as Americans, allowing this intolerable situation to continue? We need to demand that Medicare reverse its reimbursement policies: money that the nursing homes are getting should be taken FROM them and given TO Hospice and Home Care so family caregivers and the person who is dying can get adequate Home Health Aid coverage. Families need help with bathing, dressing, cooking, toileting, laundry, transferring from bed or wheelchair and respite. There is NO reason, given the millions (billions?) of dollars in the Medicare system, that these public dollars cannot be diverted from institution care into home care. Or, is the reason this continues because these nursing "homes" (institutions), these for-profit businesses, have incredibly powerful and well-funded lobbies? And they are able to sway funding streams down in Washington? As a daughter who has been there while two parents died, I am testifying to the absolute need for those of us caregivers who survive to demand our elected officials to change this. Give US the dollars for home care and take it away from nursing institutions. Our families want and need to die at home, and a nursing institution is merely a convenient place to house someone...without love or care, and assuredly with neglect and abuse ...until they die. And these corporations and their CEO's are watching their bottom lines and smiling. Is it any wonder that Physician Assisted Suicide is gaining a foothold in America? Who would want to spend their last days upon earth being forgotten, abused and neglected in a nursing "home?" We have found a convenient way to "reduce the surplus population" in the USA. If people in pain, people with disabilities, or people who are dying were actually given the Home Care they needed would they ever even consider Physician Assisted Suicide? I think not. And the price we each pay -- every daughter, son, mother, father, who faces disability and death -- is the loss of compassion, love, support and dignity... the loss of basic human rights. And, these same nursing "homes" are smiling at the new "trend" (PR paid for by the nursing homes?) for families to purchase long-term care insurance. Again, tap into the family pocketbook so WE pay for long-term care. The nursing homes get to keep their Medicare reimbursement and WE pay for our end-of-life care. And most long-term care insurance policies have superior coverage for, guess what? Nursing home care. Do they cover home care? Not usually, and definitely not the amount of hours you really need. Heaven forbid we should take dollars away from the nursing institutions and use THAT to fund long-term care insurance for Americans who are elderly or disabled so we can live in our own homes. Nursing Home CEO's and Comptrollers, you've done a good job. You have spent your PR dollars well. My contribution, a gift as a result of my Dad's dying through Hospice, will be to continue to speak out about this. I will try to invest other caregivers who have survived a loss to -- one-by-on -- do grassroots advocacy to change Medicare and longterm care funding so it goes where it belongs...to Hospice, to the American family, and to the family hearth and home. |
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