Living with Lou: Dudley Clendinen on a Good, Short Life
February 21, 2011 at 8:00 am 61 comments
Dudley Clendinen and Tom Hall in the WYPR studios in October 2011. Photo by Stephanie Hughes.
The Series
Dudley Clendinen, an award-winning author and journalist, was living in Baltimore when he was diagnosed in November 2010 with Amyotrophic lateral sclerosis, or ALS (also known as Lou Gehrig’s disease). A former reporter and editorial writer for The New York Times, Dudley wanted to share his experience with “Lou,” as he called the disease, with others.
From February 2011 through January 2012, Dudley spoke regularly with Tom Hall about the disease’s symptoms, his mental state, and preparing for the end of life. Dudley passed away on May 30, 2012, in hospice care at the Joseph Richey House in Baltimore. He was 67 years old.
The Conversations
6.4.12: Remembering Dudley Clendinen
5.31.12: Dudley Clendinen, 1944 – 2012
4.25.12: A Note on Dudley Clendinen 3.7.12: An Update 1.30.12: I Wouldn’t Have Missed It A full transcript of this conversation is available here.
1.16.12: The Body is Going Out A full transcript of this conversation is available here.
1.3.12: A Conversation That Will Go On 12.12.11: A Noisy Body 11.28.11: The Chance to Tell a Story 11.14.11: To Be Remembered 10.31.11: To Be Honest 10.17.11: To Be Flawed 10.3.11: Dealing with Condescension
9.19.11: To Be Responsible
9.6.11: The Thing That Might Not Work
8.22.11: A Wonderful Life 8.8.11: A Good Death 7.25.11: A Legacy Worth Attempting7.11.11: Living with Integrity 6.24.11: The Idea of Being Compromised6.13.11: The Mechanics of ALS
5.30.11: The Time Leading Up to It
5.17.11: A Professional Background
5.2.11: The Physical Effects of ALS
4.18.11: A Matter of Priorities 4.4.11: The Freedoms of Terminal Illness
3.21.11: Preparation for Illness
3.7.11: Considering Others
2.21.11: Dealing with Diagnosis
About Dudley Clendinen
Dudley Clendinen worked as a reporter and editorial writer for The New York Times. His books included Out for Good: The Struggle to Build a Gay Rights Movement in America, on the evolution of the gay rights movement, beginning with the Stonewall riots of 1969. He’s also the author of A Place Called Canterbury: Tales of the New Old Age in America, which details the story of his mother’s time in the Canterbury Tower in Florida, where the average occupant is 86 years old. He is editor of a book of essays, The Prevailing South, and author of the text for a book of photographs, Homeless in America.
The writer Dudley Clendinen, with his daughter, Whitney, in 2007.
Further Conversations about ALS
7.26.11: A Professional Athlete with ALS
7.25.11: Options at the End of Life
Dealing with Terminal Illness
We also want to involve YOU in the conversation. Are you, or is someone you know, dealing with a terminal illness? What has been helpful to you as you’ve dealt with this? Are there particular books or websites that have been useful? What about organizations? How do you to talk to people about it? Or is it something that you mainly keep to yourself?
We’ve gathered a series of resources below, but we’d love to hear your additions.
Let us know your thoughts at mdmorning@wypr.org, leave a comment below, or give us a call at 410-881-3162.
Books and Journalism
I Remember Running: The Year I Got Everything I Ever Wanted – and ALS by Darcy Wakefield
The Diving Bell and the Butterfly: A Memoir of Life in Death by Jean-Dominique Bauby
The writings of journalist Brian Dickinson, who chronicled his battle with ALS in The Providence Journal
“The Cancer Report” in the Columbia Journalism Review
NPR’s Patricia Neighmond’s series of reports on Archie Harrison, who was diagnosed with AIDS in the late 80s
A Still Life…A Life Still — the writings of two friends, each of whom is caring for a parent with ALS
I Have a Voice, by Baltimore native Barbara Brenner, who has ALS, and uses a technology called NeoKate to communicate. Her essays are periodically broadcast on KQED in San Francisco.
Organizations
The World Federation of Neurology
Entry filed under: Health, On Air. Tags: ALS, end of life care, Lou Gehrig's disease, terminal illness.
61 Comments Add your own
Leave a reply to Rick Shapiro Cancel reply
Trackback this post | Subscribe to the comments via RSS Feed
Maryland Morning with Sheilah Kast 
1.
linda franklin | February 21, 2011 at 11:33 am
Dudley’s great spirit and the deep thoughtfulness behind his writing and his humor came through during this interview. I can’t imagine being so brave and “adult”, but then Dudley is a real adult in the full and best sense of the word, and that allows him childlike wonders and pleasures, and a fully rounded existence. Thank you, Dudley.
2. Heartbreaking, Heroic Radio: Dudley Clendinen On Having ALS | CommonHealth | February 21, 2011 at 1:10 pm
[…] I can’t wait to hear more heroic radio from Dudley Clendinen, but how I wish he didn’t have his amazing material. Listen to him here on the Baltimore NPR station, WYPR. […]
3.
Rob Goldstein | February 25, 2011 at 3:57 pm
ALS is a terrible disease and I was sorry to hear about Mr. Clendinen’s diagnosis. There are more than 50 clinical trials enrolling patients today – and I encourage folks to learn more about those via this link: http://als.net/OurResearch/ClinicalTrials.aspx
or listen to a Podcast from experts on this topic conducted recently here: http://als.net/Podcasts/Default.aspx
4.
Buddy Martin | March 5, 2011 at 12:54 pm
So sorry to hear about Dudley’s illness, but he has a stout soul and a ton of heart, so he will look it right in the eye and prevail.
It was my honor and pleasure to work with Dudley at the St. Petersburg Times for four years. He was, and is, one of the sweetest writers and most competent reporters in the biz.
Good luck and God bless DC.
5.
Linda Ellerbee | March 19, 2011 at 3:32 pm
Dudley has been a dear friend (and hero of mine) since our freshman year at Vanderbilt. He will always be my hero. What a loss his “voice” in the larger sense will be to the world. And what a loss Dudley will be to all of us who know and love him.
My anger overwhelms me. I’m just not sure where to place that anger.
My grief is too deep to describe.
Linda Ellerbee
6.
Molly Brown Koch | April 21, 2011 at 9:07 am
Dudley Clendenin interviewed me for an article about cults in America when he was at the New York Times and I was involved in combating the destructive effects of cults. We spoke on the telephone and I was thoroughly impressed by his thoughtful questions and delightful responses to my replies. There was something wonderful about this man — I loved talking with him and I did not want the interview to end. Ever. Oh, how sad I am to learn of Dudley’s illness.
Molly Brown Koch
7.
Amy Ohm | June 6, 2011 at 1:53 pm
So sorry to hear this news. I am the founder of http://www.treatmentdiaries.com which a site aimed at connecting those living with or caring for someone with any type of illness. We have posted this link on our site for our ALS community and their caregivers. Great info!
8.
Debra Pfeffer | June 7, 2011 at 1:23 am
Thank-you so much for sharing your thoughts and feelings about living with Lou. I’ve been scouring the internet in search of stories of people who have been affected by this disease. I was formally introduced to Lou last month and look forward to hearing how your relationship with him is faring.
9. The Right Kind of Suicide? | Why Suicide Blog | July 10, 2011 at 11:34 am
[…] about his decision to end his life. Compelling to say the least (as are his conversations with Maryland Public Radio). He has ALS, has no illusions about what the future holds, and has no plans to let nature take its […]
10.
Rick Shapiro | July 10, 2011 at 3:23 pm
Dudley gets it. Most of us Westerners don’t.
Death is a part of life; an equal part.
Average life spans are just that.
Most people are so busy being afraid of things, including death, that they never really live their lives, regardless of the years.
Rick Shapiro
11.
kiki | July 19, 2011 at 12:02 am
Do tell, Rick. You’re being rather presumptuous, aren’t you… speaking for “most of us Westerners”? Most of us are Christians and we absolutely believe that death is part of life. And we don’t pick on cultures that don’t.
12.
jane gross | July 10, 2011 at 4:40 pm
dudley, your support and faith in me when i was starting my book made it possible for me to write it. i hope i made that clear to you then, and not only now when i see where you have “disappeared to,” although actually not disappeared but only grown even more inspired and inspirational. i wish for you a rich and easy journey, to the place all of of us are going, which some of us — you —- know more about than others. it is good to know you are surrounded by the people you love, so strong of mind and soft of heart. — jane gross
13.
Ben Harris | July 10, 2011 at 6:02 pm
I am a person with ALS and I have just emailed Dudley the following:
Dear Dudley Clendinen,
I am a participant in a drug trial for ALS that that has caught everyone in the ALS medical and patient community off guard. The drug seems to stop the progression of the disease and improve the condition of those taking the drug. For how many and for how long is unknown but the drug already stands as the single biggest breakthrough in this disease. In some cases the improvements are dramatic. First hand accounts can be found in the ALSforums and PatientsLikeMe discussion groups. I would be happy to provide you with links or excerpts if you would like. There is a small team of dedicated people with ALS trying very hard to raise awareness of this study. Anything you can do to help would be greatly appreciated.
Also, I highly recommend that you join the study. The improvements seem to be most dramatic in those with bulbar onset.
I would like to share with you a letter I have recently written to Paul Cellucci, ex Governor of Massachusetts and person with ALS, and Dr. Robert Miller, principle investigator of the NP001 ALS drug trial:
Dear Dr. Miller,
My name is Ben Harris, I am a practicing medical physicist, husband and father of a 6 year old boy. I was diagnosed with ALS in January of 2011, bulbar onset. On June 20th I began participation in a phase II clinical trial for Neuraltus Pharmaceutical’s drug NP001. After only one day of receiving the drug I noticed significant improvements in my condition. I have been in contact with other participants in the trial and it is becoming clear to many of us experiencing the benefits of the drug that it may be unethical for the trial to continue with the placebo arm, and moreover, it may be unethical to discontinue administration of the drug at the end of the trial.
Although this trial like most is ‘blinded’ there is no restriction on participants to share their experiences. The positive effect of this drug is so profound and so immediate that it is becoming clear at the trial sites who is on the drug and who is not. The effectiveness of the drug may be its biggest hurdle as those on the placebo will figure it out soon enough and become disinclined to continue participating. Moreover, it is going to be difficult for the clinicians administering the drug to watch some participants actually improve while others decline in that heart wrenching way that we are so familiar with. The ethical dilemma will soon be a burden to everyone involved. For these reasons I feel it is important that the placebo arm for this trial be converted to a dosage arm, but as I understand it the only entity that can make that happen is the Data and Safety Monitoring Board (DSMB). Therefore I request that the DSMB convene immediately to review the accrued clinical data and take appropriate action. This may require a thorough review of the notes being taken by the nurses, physicians and research assistants and perhaps require additional interviews with the participants.
The trial was not designed to identify immediate and dramatic results, instead, like most ALS trials it has been designed to measure the rate of change in the Functional Rating Score, i.e., slow and long term differences. The trial has been designed to measure subtle effects over the course of a year while I have experienced dramatic effects in one day. Many of us in the trial are worried that the (DSMB) may not identify the remarkable effect of the drug in a timely fashion and it will take years instead of months for the FDA to approve this drug.
If we thought it was hard living with the thought that there is no cure for ALS, we are soon to experience unendurable defeat of knowing that there is a cure but it is just out of our reach. For many patients in this trial a cure is across the room from them in someone else’s IV bag. For me ALS in itself is not torture. Whether by nature or by deity life is a gift, and a short life is still a gift. What makes torture is the knowledge that the assault on your dignity and your life could end if someone so chose. I am convinced that if the DSMB knew what I knew, they would so choose to end the placebo arm, eliminate the 6 month observation period without the drug and urge Neuraltus Pharmaceuticals to offer the drug to participants at the end of the trial.
Thank you,
Ben Harris
14.
MAndrews | July 17, 2011 at 11:30 am
Dear Ben,
My husband has ALS, we are in SF, know Dr. Miller but are no longer his patient. Could you send me more information on how to get in a clinical trial for this drug? Anything would be much appreciated. Hope you are still improving and feeling better. Bless you. -M. Andrews
15.
Ben Harris | July 17, 2011 at 11:35 pm
M. Andrews,
The inclusions criterial is onset less than 3 years, and FVC greater than 70%. The trial sites and the contact for each site can be found at http://www.clinicaltrials.gov/ct2/show/NCT01281631?term=als&rank=27
email me at benwharris@gmail.com if you need any more help or information.
Good luck!!
16.
Roy Woolsey | April 16, 2012 at 4:48 pm
Saw today’s WSJ article mentioning your name. If your ALS is of the non-mutant SOD variety, it may be caused by toxicity of the reduced glutathione (GSH) precursors glutamate and cysteine, and sulfite (a metabolite of cysteine), which accumulate when one or more of the enzymes needed for GSH synthesis are defective. See my wife’s case study published in the Journal of Alternative and Complementary Medicine http://online.liebertpub.com/doi/abs/10.1089/acm.2007.0781. Avoid sulfite (in wines, used as a preservative in many foods such as tilapia, in Vivonex Plus by Novartis, etc.) at all costs!
17.
Ben Harris | April 18, 2012 at 11:38 am
Roy,
Thank you for the information. Has this been posted on any of the ALS discussion forums that you know of?
Thanks,
Ben
18.
Patricia Woolsey | April 22, 2012 at 11:26 pm
Dear Ben,
This is Roy Woolsey’s wife Patty responding to your reply to him. No, as far as I know this has not been on any ALS chat forum. Perhaps you could advise me on what ALS chat forum would be best. Most of the correspondence that I have received on my article has been from outside the United States.
The interesting part about this drug NP001, if it is indeed sodium chlorite, is that sodium chlorite is neutralized by sodium sulfite. It appears to me that chlorite and sulfite neutralize each other. See http://www.water.siemens.com/SiteCollectionDocuments/Product_Lines/Wallace_and_Tiernan_Products/Brochures/WT.085.272.001.IE.AN.0409.pdf
If chlorite and sulfite neutralize each other, then that is an important point if sulfite toxicity is indeed a cause of ALS as I outlined in my article.
On the other hand, I do not know what the long term effects of taking sodium chlorite internally would be, but they must not be too good if there are laws about maximum chlorite concentration allowed in the water supply. Also, it’s possible that the good effects that you have noticed could “wear off” when the sulfite level builds up again.
Sulfite interferes with biosynthesis of ATP in mitochondria (see A Mechanism of Sulfite Neurotoxicity, by Xin Zhang et al): http://www.jbc.org/content/early/2004/07/23/jbc.M402759200.full.pdf
If sodium chlorite neutralizes the sulfite then it would perhaps restore a better environment in the mitochondria for the ATP to be produced at least temporarily. ATP is used to transport energy to cells for biochemical processes.
If sulfite is indeed the problem, then another approach can be to cut down the level of sulfite. Sources of sulfite in our bodies are both from what we eat as well as generated in the body. Use of sulfite on meat is apparently banned, but it is in surprising places such as on vegetables like those cute little bright orange carrots in a bag and other vegetables/salad bars to keep them brightly colored, or on fish such as tilapia and flounder, or in wine etc, with no labels regarding sulfite required. In the ALS case outlined in my article, we discovered the sulfite toxicity after about 9 months of effort (testing, diet changes, supplements etc), and when we reduced her cysteine and sulfite load with diet changes and increased her glutathione with ChemDefense (glutathione buccal), she did not decline further and her tests were normal. All of her food was prepared fresh and tested for sulfite by her husband, but when she would take trips she would use the tubal feeding powder supplied by her neurologist for convenience, and she would immediately know she was declining NOW as she wrote. We checked the tubal feeding powder for sulfite and it was worse than red wine.
You can check your sulfite at home and also order a test to check your glutathione and cysteine and other oxidation measures. Let me know if you would like more information on that.
Best regards,
Patricia B.E. Woolsey, R.Ph., N.C.
Registered Pharmacist/Nutrition Consultant
pbwoolsey@NutritionConsultant.net
19.
UnderRSkins | July 10, 2011 at 7:15 pm
ALS and M.S. share many similar symptoms and a documentary on Netflix titled ‘Under Our Skins’ controversially links both with Lyme disease citing through one physician in Seattle, WA that females with Lyme disease tend to contract M.S. while males tend to contract ALS and that I.V. of I think it was amoxycillin allows elimination of the Lyme spirochete from hiding places in the human body providing cure and relief with regression of symptoms!
Dudley, perhaps there is a chance at stopping the progression of your symptoms if you are able to consult with the Dr. in Seattle mentioned in the documentary?? (Since I saw this at a friend’s and am too broke/unemployed I can’t retrieve the information since I am not a Netflix subscriber.)
20.
Neverne Covington | July 11, 2011 at 9:41 am
I remember you from when I was a freelance illustrator for the Floridian, the magazine for the St Pete Times. Also, I illustrated the 8 booklets anyone gets from the ALS foundation, upon diagnosis. To do that, I had to learn about the disease. Recently, I lost a friend who also worked for the St. Pete Times, named Jim Carnaham. to ALS. I just wanted to tell you how touched I was by your story in the NYTimes. I read it and remembered you and your candor and your courage reached my heart.
21. The Good Short Life « THE WEEKLY LEAF | July 11, 2011 at 11:10 am
[…] and knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in […]
22.
Sue Kirk | July 11, 2011 at 4:46 pm
Thank you Dudley for sharing. My mom also had Lou and the bulpar. It was very interesting to hear your perception, and listen to the tapes you have done. I know what you mean by not wanting to extend your life, my mom also did not want to and I wish there was some way I could of ended it for her sooner as that what she wanted. She died peacefully in her sleep (what is what I hope for you). Your in my prayers. God speed to you.
23. The Good Short Life With A.L.S. | Sacred and Profane | July 11, 2011 at 6:04 pm
[…] and knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in […]
24.
Stephanie | July 11, 2011 at 11:24 pm
The commentary says you are actively collecting websites, blogs and other resources that may be a help to those dealing with ALS or similar chronic and terminal illness. I’d like to share the link for a blog by two women, friends for 17 years, both writers and theologians, both of whom have a parent with ALS, one with bulbar onset (who died 2 months ago today) and one not. The blog, A Still Life…A Life Still, creatively reclaims the “ALS” acronym with each post title, and sheds light on how this disease is, as Mr. Clendinen has found, in some dark and mysterious ways also a blessing, or at least these luminous posts are. http://www.alifestill.com
25.
BREE | July 12, 2011 at 11:57 am
This is the second time within a month’s time I have “met”…become
aware of and been blessed with the wisdom of a person I wish I had had the pleasure of knowing earlier in my life. Thank you
Dudley for allowing me to know you even a little through this conversation about death. It is an imperative discussion I so wish I could have had with my father who could not embrace his terminal diagnosis. I intend, if at all possible, to design my own passing with
grace and good humor. I realize there is beauty and honor and hopein a good death if one has the wherewithal to accept it as part of the beauty and honor and hope contained in a good life. Thank you for your example in life and death.
26.
Patrick B. | July 12, 2011 at 1:11 pm
My Dad died five months after his diagnosis with melanoma cancer. When my Dad died I had been up with him for seven weeks straight. Well not quite, but I had been up two or three times a night with him for seven weeks. In between I slept, sort of, as he slept, sort of. He was dying and I was watching and waiting and, helping him, die. Is there such a thing? Helping means assisting towards a goal. If dying were the goal I would have killed him, as he more or less suggested I do. So not believing that to be my role, I guess I was helping him live. Live with the goal of dying? Wishing for his death without causing it in any way? I just Loved him too much to let him go, and loved him too much not to do every thing possible to help him live through the torment that was his final weeks. So my goals were simple. Give him a shower. Help him to the toilet. Convince him his dreams were not real. Or convince him the truck bed full of salmon he dreamed he caught in Alaska and was outside, had been filleted and frozen while he was sleeping. All is well Dad; we are on top of it.
When I was younger the question was, why are we alive? What’s the meaning? Now I know, we are here to love each other, this whole reality, and ourselves. Now I can’t understand why we die. It seems unfair. Why am I allowed to love someone so much if they just go away? I suppose that’s the gamble, that’s the risk, you gotta give it all away to truly have it in the first place. But it hurts. I hurt. Love hurts.
27.
Maureen Paulson | July 12, 2011 at 8:12 pm
I read your story you may change your mind after reading Bob s Book reviewed in the NYTimes I am married to Bob for 43 years enjoy Maureen Paulson mepaulson@rcn.com
Bob s BLOG. Below
bobpaulsonbook.blogspot.com
http://Www.bobpaulsonbook.blogspot.com
NY TIMES BOOK REVIEW below.
28.
Hartley Lord | July 12, 2011 at 11:31 pm
Dudley; my niece, who lives in Baltimore, sent me the Good Short Life article. She was not aware that you and I had some water under “The Bridge to Nowhere” in Jacksonville, Florida.
Your idealogy on life is remarkable. A simple and proper outlook that is absolutely the only game in town. Just like your St.Petersberg Times columns. Right on target.
Please send your email address.
Hartley Lord – Las Vegas –
cardtel@aol.com
29.
S. Argilla | July 14, 2011 at 1:26 am
Taking one’s own life is not necessary if Hospice Care is engaged to relieve the physical, emotional, and other symptoms associated with terminal illnesses. There may not be a better way to travel the last distance of life as we know it. Mr. Clendinen, please at least see if Hospice could serve your needs with support and medications and with your full participation and control.
30. The Good Short Life | JacquelineJencquel.com | July 14, 2011 at 1:15 pm
[…] and knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in […]
31.
Diane | July 14, 2011 at 10:40 pm
I clicked on the title (The Good Short Life) since it immediately reminded me of my husband, age 49, died of ALS in May. I wish that he had heard your recordings; maybe he did. Your speech is amazingly good considering your bulbar onset and date of diagnoses. Sorry to say I don’t know your work, but I am familiar with what you and your family are experiencing. My husband had limb and bulbar onset simultaneously; was using voice simulation within 8 mos. of diagnoses, feeding tube within a year. Never did assistive breathing/cough assist, couldn’t stand it. Looking back, breathing was the last to go, all else was gone. I can tell you that those who love you and see you regularly will always see you for the person you are inside. You will not be a burden. They will not feel relieved when you die, even if they are your primary care-givers, while trying to run a business, a household and getting a daughter ready for college. Trust me, I know. Like you, we expected pneumonia to be the culprit; I was almost happy about it because I would know what to expect. But in the end, he went to sleep one night and did not awaken the next morning. I was in the next bed, beside him. He could not have suffered, for I heard nothing. Your death will not be messy or painful. You should consider hospice. I hear they are wonderful, although we never made it there (insurance reasons – needed equipment not covered while in hospice and not available until health care reform kicked in). I respect your attitude towards death and am grateful that you’re getting your views out there. God bless
32.
Dan | November 11, 2011 at 1:18 am
This is an excellent response, and confirms my feelings, especially when you note that he will not be a burden.
I’m sorry to hear about your husband, but I’m grateful for your equanimous response.
Best,
Dan
33.
LRO | July 15, 2011 at 1:12 pm
Thank you for your authentic and insightful article in the NYT and your brave interviews on NPR. My husband of 20 years died of ALS at 46, 10 years ago. Sharing with dignity the progress of his disease and death taught many of our family and friends how to live. I recommend the book, “Learning to Fall,” by Philip Simmons. Bless you.
34.
leebou | July 15, 2011 at 1:15 pm
to Diane: After reading The Good Short Life, which I really found comforting, I saw your comment. Thank you for posting positive feedback and sharing your personal experience.
I’ve had limb onset ALS for 2 years. I’m the same age as Mr. Clerinden.
35.
Sam Wade Sears | July 15, 2011 at 2:22 pm
When I came to the place where I realized that more than half my life was over, I started looking for acceptance of that disagreeable fact. This man’s writing mirrors much of my own thinking and I appreciate it plus the many comments of those who are also dealing with that time of life. It is indeed good for now but I would like not extend into the “bad” for myself and for the sake of those who do not need to see my suffer. Approaching 87 and still grateful to be in the ‘good life” phase. Sam Wade Sears
36.
Ben Harris | July 15, 2011 at 5:53 pm
Dudley, sorry to interrupt you admittedly graceful way of dying but there is a clinical trial for a drug called NP001 from Neuraltus Pharmaceuticals that is the most promising drug for ALS ever. Many of the participants are experiencing reversal of their progression (including myself). Just wanted to let you know.
37.
Robert Orfali | July 17, 2011 at 6:54 pm
Dudley, thank you for your courageous article “The Good Short Life.” Count me among the many supporters on this thread who want to make sure you’ve considered every option—including hospice and NP001. Ultimately, it is your life, your death, and your choice. As you wrote, “I’ve done my homework. I have a plan.” You also wrote, “I have found the way. Not a gun. A way that’s quiet and calm.”
My wife Jeri was 56 when she died from ovarian cancer two years ago. She fought the cancer non-stop for nearly ten years. However, as death approached, she too was looking for a self-deliverance method that was “quiet and calm.” Because of the prohibition against physician-assisted dying in our state, she did not have access to the better euthanasia drugs like Nembutal. The not-so-lethal drugs she found on the Internet required a plastic bag for backup. Jeri did not want to die that way. Also, she did not want me to help her complete the act in case of failure. It would have incriminated me. As a result, she did not have a workable plan.
Because of Jeri’s dilemma, I spent the last two years researching our end-of-life system. I just published a book called “Death with Dignity” that makes a strong case that assisted dying complements hospice. By providing both, Oregon has the best palliative-care system in America. My tribute to Jeri is to make the e-book available for $0.99 which is as close to “free” as Amazon now allows it (see http://www.DeathwithDignityBook.com). My hope is that the e-book will go viral and help legalize physician-assisted dying everywhere. Again, thank you for making it easier to talk about the “quiet and calm death.” It would be wonderful if you would issue a plea to make it a legal option for all terminal patients. Please let me know where I can send you a copy of my book. It clearly explains why this cruel prohibition must be lifted. I hope you can add your powerful voice to this cause.
Robert Orfali, Author of “Death with Dignity: The Case for Legalizing Physician-Assisted Dying and Euthanasia.”
38.
Lee Terry | July 18, 2011 at 12:37 pm
Dudley–
You seem like a thoughtful enough person to consider trying something simple yet untested that might save your life. It probably won’t work, but it might. My grandmnother died of ALS. At the age of 47, after I had emergency appendectomy surgery, I came down with a rare infectioin–a systemic fungal infection. I treated it with medication but it kept coming back. Most disturbingly, the symptoms were markedly similar to early ALS–muscle twitching, general weakness, pain in joints,etc. I spend a lot of time in online ALS chat rooms. I became convinced that ALS and many other diseases where the body attacks the myelin (sp) coating on nerve cells are the result of fungus living on that myelin that the body’s anitbodies are trying to wipe out and they take out the nerves in the process. I also decided that the reason that no one knows this is because it is almost impossible to diagnose fungal infections. They have to take a blood sample and culture it for weeks. And I kept telling them that it probably wasn’t in my blood anyway, at least when I wasn’t really sick with it.
My “cure” is simple, and I encountered it by accident. Sunshine, and staying away from sugar as much as you can (feeds fungus–go with a “Sugarbeaters” kind of diet if you can). You can win the battle against fungus with a lot of natural sunshine. (I found out by the accident of a Mexican vacation.) I don’t know if it is because the body is producing vitamin D or the sun is just killing the fungus the way it would on a piece of concrete. But it worked, and it might work for you if my crazy notion is correct. And if you prove my crazy notion is correct, then you might save hundreds of thousands of lives, including your own. What have you got to lose?
Good luck in any event. You seem like a great person. I hope that you are the first of many ALS patients who are saved. You never know.
Lee Terry
39.
Karen Lynn | July 24, 2011 at 2:37 pm
Read, “Living and Dying”, St. Peterburg Times, July 24. Three years ago, I was misdagnosed (I had a brain homorrhage), and spent two days trying to convince physicians and ER that something was wrong. I now suffer from mistrust regarding the medical profession, along with panic attacks. I have tried therapy, medications, etc. All the medical people can say is “a miracle”. I guess so. But I sure did arrange all of my death affairs; joined Hemlock Society of Florida, Inc.; support Death with Dignity legislation; and checked-out Swiss and Netherlands options. Everyday, I try to focus “hurrah I’m free to enjoy one more day”…if only my sub-conscious would cooperate! Thanks for your insight. Karen Lynn
40.
Bryce Butler | July 25, 2011 at 4:13 pm
Dudley,
I’ve been inspired by your interviews here at WYPR and your writing in the New York Times. Listening to your wonderfully honest interview this morning about your equivocations about pursuing a book or a lovely and fulfilling end visiting with friends, I was sympathetic to your antipodes. But here I have to say, with no right, as an acquaintance or as a writer, the following: I hope you will choose the thornier and less certain path of writing your book, whatever the personal sacrifices you perceive would be made. Our predictions are rarely accurate, and you have a gift of time and circumstance rarely afforded to writers. Whatever you choose, thank you for your courage in continuing your honest interviews and writing.
Yours,
Bryce
41.
Suzanne M. Milliron | July 26, 2011 at 2:09 pm
NYTimes 7/10/2011 article by Dudly Clendinen, “The Good Short Life” – thankfully an opinion about a self-determined good death. I forward this info for Mr. Clendinen – http://www.endoflifechoices.org
1 -800 247.7421 Denver, CO – The Hemlock Foundation for End of Life Choices. Native peoples recognized ‘a good day to die’ and while life is what we cherish most, the quality of a good death is not an acknowledged option. Bravo for Mr. Clendinen, a rare man of courage & insight. I wish you a successful journey.
Suzanne M. Milliron
Saranc Lake, NY 12983
42.
John Blinn | August 25, 2011 at 8:18 pm
Both my partner’s mother and her stepmother died from ALS – deaths 40 years apart but both devastating. Specialty care, the improvements in patient devices and such simple things as lighter-weight wheel chairs and handicapped parking have made enormous positive changes over those decades both for patients and for caregivers. Hopefully someday there will be equivalent improvements in treatment. But until that day arrives one of the largest contributions is from thoughtful and articulate patients and caregivers such as Dudley Clendinen, Dr. Jeffrey Rothstein and Lora Clawson and courageous folks such as those at WYPR “Maryland Morning with Sheilah Kast” and especially Tom Hall.
I could say more – far more – but it would only be redundant of a simple but heartfelt “Thank you”.
John Blinn
Austin, TX 78731
43.
ann mcnutt | September 7, 2011 at 10:15 am
i want to set up an account for dudley at the bank of dudley in georgia so he’ll be able to cash that check. i just called this bank and they said that whoever sets up such an account must finalize it in person. problem is, i’m in paris france at the moment. will be back in baltimore late sept. in any case, it would be extremely inconvenient for me to travel to georgia. if there is a volunteer i could have a check sent to you almost immediately. if you or anyone you know would/could do this for me please contact me at annmcnutt@gmail.com.
44.
Nazzarena | September 7, 2011 at 5:01 pm
I can’t help with the Bank of Dudley… much more modestly I can contribute few seats for The Daily Show. Jon Stewart and Garrison Keillor are also favorites of mine, and I happen to have 4 tix for the Sept 29th taping, which I’m happy to share, or give entirely.
Nazzarena
45.
Tom Hall | September 17, 2011 at 3:10 pm
Nazzarena:
Thanks so much for writing, and for your generous offers. Dudley would like to contact you to explore the possibility of the Daily Show tickets. Please send me your contact info (thall@wypr.org). Thanks again.
Tom Hall
46.
nazzarena | September 22, 2011 at 12:12 pm
Thank you, rather, for the great show, Tom. I just replied to Ms. Withney directly.
47. Living with Lou « our lives our choice | September 8, 2011 at 7:29 pm
[…] Click here to listen to Conversations with Dudley Clendinen Eco World Content From Across The Internet. Featured on EcoPressed College Campuses Ban Bottled Water Share this:EmailTwitterFacebookReddit Categories News, Stories […]
48.
Mary Ita O'Connell | September 15, 2011 at 10:41 pm
Blessings, blessings, and thank you again for being here and
for sharing the process.
49.
Ben Harris | September 22, 2011 at 1:49 pm
Just an update for everyone. I have been in the NP001 trial for over 3 months. My ALS progression has stopped and I am in a better physical state today than I was before I started the trial. I am one among many with the same story.
It pains me to see so much press about esoteric gene research and ALS fundraisers when it is clear that a cure for ALS is surfacing. And no one seems to give a crap.
50. September Editors’ Roundtable No. 2: The New York Times on facing death – Nieman Storyboard - A project of the Nieman Foundation for Journalism at Harvard | September 29, 2011 at 2:59 pm
[…] wondered whether Clendinen speaks the way he writes, so I listened to some of the wonderful interviews he mentioned, from the “Maryland Morning” program on Baltimore’s main NPR station. Listen to […]
51.
Sally Miller | January 30, 2012 at 11:20 am
I have been following the interviews with Dudley all year on NPR and was fortunate to hear his last interview with Tom Hall this morning. His insight and courage is inspirational. He has set the standard educating us on every aspect of living with ALS. A remarkable man who should be highly commended for his bravery. His words, written and spoken, are and will be a valuable tool for helping others deal with this incurable disease. Thank you Dudley and NPR for broadcasting this incredible series. Sally Miller
52.
Annette Powell Sale | January 30, 2012 at 10:59 pm
Bravo, Dudley.
53.
Annette Powell Sale | January 31, 2012 at 4:45 pm
This inquiry is from a cousin of Mr. Clendinen’s. Friends have asked if it is possible to purchase CD’s of all of the conversations you have had with Dudley in this series.
If these are available, we have a sincere interest in them. If you have not thought about such an offering, I can assure you that your survey would surprise you. Please advise. See ID below:
54.
Annette Powell Sale | January 31, 2012 at 4:46 pm
This inquiry is from a cousin of Mr. Clendinen’s. Friends have asked if it is possible to purchase CD’s of all of the conversations you have had with Dudley in this series.
If these are available, we have a sincere interest in them. If you have not thought about such an offering, I can assure you that your survey would surprise you. Please advise.
55.
Robert Orfali | January 31, 2012 at 5:09 pm
Dudley, thank you for the conversations. You’ve been a great teacher. The book is next. Thank you my friend.
56.
lou « why? why not? | February 9, 2012 at 1:16 pm
[…] and knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in […]
57. 4-20-12: An Update on Dudley Clendinen « Maryland Morning with Sheilah Kast | April 20, 2012 at 7:50 am
[…] can listen to all of the series in “Living with Lou: Dudley Clendinen on a Good, Short Life” at this link. Like this:LikeBe the first to like this […]
58.
Sherry chew | April 22, 2012 at 6:25 am
Is Dudley still alive,?
What a wonderful and brave soul!
I lost my twin sister to ALS three months ago.
Never in my wildest dreams did I imagine anything do horrible could come between us.
She was my best friend, my soul mate, my better half. And now shes gone.
This is a mean and vengeful disease, she fought it hard until she had no fight left.
I think of her every minute of every day.
I hope Dudley is fighting a good fight and finishing his book.
Sherry chew
59.
Unique | May 19, 2012 at 12:11 am
I am a singer and would like to meet Dudley and sing for him. I normally sing at funeral however I want to give him his roses while he is still alive to receive them. Please contact me at http://www.Godsmusicwithwisdom.com or call me at 202-328-6002.
60. The good short life – an essay | November 26, 2012 at 6:44 am
[…] knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in […]
61. Enough is enough | ALS 'n Stars | September 18, 2013 at 8:55 pm
[…] and knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in […]