A New Paradigm for the Future of ALS
The new year arrived bearing good and bad news. The good news is that 2020 marks my 10th year of living with ALS and I’m still here!
The bad news is that I still have ALS.
And, gosh darn, I thought we’d have a cure by now. But we don’t — yet.
I say “yet” because I’m a positive thinker, and I believe our ALS community has experienced a paradigm shift that is bringing us closer than ever to a cure. Following are a few of the many recent changes in attitude and expectations that I’ve observed:
An explosion of online resources
Social media grew to give patients, family members, and caregivers quick access not only to one another, but also to a wealth of helpful online resources. From websites for newly diagnosed patients to trusted online news sites such as ALS News Today, patients can learn about the latest ALS-related events, treatments, and research. Patients often know more about the status of current clinical trials than their doctors do!
A worldwide expansion of ALS research
Ten years ago, I read about ALS research using zebrafish and fruit flies. Now the pipeline for potential treatments has evolved into clinical trials with ALS patients. International research centers focus on stem cells, identifying biomarkers, and testing innovative treatments.
The term slow progression entered our conversations
When I was diagnosed, I was told life expectancy was two to five years. But that prediction has been challenged by patients living much, much longer.
We now identify patients whose symptom progression is slow, and patients also are taking steps to slow the progression of symptoms.
The ALS Association updated their “Facts You Should Know” section on their website to include the statement: “While the average survival time is three years, about 20 percent of people with ALS live five years, 10 percent will survive 10 years and 5 percent will live 20 years or longer.”
Then there are the patients who ‘don’t have ALS anymore’
Through his Study of ALS Reversals project, Dr. Richard Bedlack, founder and director of Duke University’s ALS clinic, identified 45 patients who had been diagnosed with ALS and now are symptom-free. Eight of those patients spoke at a conference I watched online. That’s when, in my world, “ALS goal posts” moved!
For me, this is the most significant paradigm shift: ALS doesn’t have to be a terminal disease!
I hope I live to see the words rehabilitation and recovery used in every ALS conversation. I hope to live well in a world without any ALS.
And I’m not alone. To paraphrase the ALS Therapy Development Institute: ALS is not incurable, it is underfunded.
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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ALS.
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jeanne
Dagmar,
I would agree with you that things seem to be shifting...although my husband was diagnosed with ALS January 9, 2019 and he passed away Dec 11, 2019. In this last month, I have noticed two things...there were several ALS deaths in December in which the patient did not live for a year, and pertinent research is on the upswing with good results...maybe the fact that there does seem to be many AlS patients now that don't live much longer than a year..it could be creating more urgency. Congratulations on your 10 year Anniversary!
Dagmar Munn
Jeanne, I am so sorry you lost your husband to ALS...my heart and prayers go out to you.
The other point I didn't mention is that now they are realizing how variable ALS is from one person to another. Not one path; no one shares the same journey. It's a combination of neurological issues. So, the prevailing thought (finally!) is to treat each case individually: expectations, medications and emotional considerations.
Mauricio Schaikevich
Dear Dagmar
Before anything congratulations for your articles that help a lot to us. Regarding Dr Richard Bedlack and your article about A new paradigma, I would like to know more about this and to know if this is related with Bodyscience, a spa business in Miami, as a place that show advances with this disease and also others.
I would like to receive your comments
Dagmar Munn
Mauricio - - Dr. Bedlack is collecting the patient files of persons who were diagnosed with ALS, and over time reduced or "reversed" their symptoms. http://www.alsreversals.com/star.html He is a neurologist at Duke University Medical Center.
The Bodyscience spa in Miami, offers an "alternative therapy" for ALS. It claims to slow ALS symptoms through an unproven (by medical studies) diet and series of vitamin injections.
richard fredericks
Thankfully, there is not one true algorithm for the progression of ALS. My symptoms first appeared four years ago. (In retrospect, strange things were happening to leg strength and acuity before that. Aging or ALS?) I am still working online, grooming myself, (admittedly, a bit shaggy), and completing small chores. Most notably, I can brew a pot of coffee in the morning. Still, I don't dare term my progression as "slow". Is that not tempting fate?
My joke is that a cure for ALS will show up about when my term is complete. But my reality is that I'm 67 years old and have had a pretty fabulous life. And it is ironic that I never saw this life as anything other than a progression of linked events. With ALS, I've embarked on a reflective process that provides a much richer context than I had previously. The proverbial blessing and a curse.
I quickly learned that empathy, optimism, and a bit of dark humor were great navigational tools. Best of all, I have discovered a community confronting ALS with a graceful resilience. Stories like yours bring us all together. Many thanks.
Dagmar Munn
Thank you Richard! We certainly share the same attitude and conviction - - and possibly humor?! ;-) May you continue to live well my friend!
WisdomandreasonMike
Dagmar,
Thank you for taking the time to write articles likes this.
Congratulations on 10 years! Stories like yours gives strength to others as well!
Susan
Dagmar,
I am so thankful for your articles! They fill me with hope for a brighter future having been diagnosed just two months ago. I am thankful that I live near the Duke ALS Clinic and will be receiving my care there!
Bill
I appear to be one of the slow ones. At diagnosis, my Dr who heads a university ALS clinic, told me I was “slow” and I could be “decades”. I was about 3 years at least with symptoms when I was diagnosed 2 years ago. I do hope it’s true but understand there are no guarantees. . I’m 70, so decades is likely a “normal” life span. At clinic and 6 month Dr visits I continue to be called slow progression. Hopefully advances will allow some quality years.
Keep up the good column!
Wes Sexton
Thank you again for another great article. End of this month will mark 2.5 years after my diagnosis, and I have hope that a cure will eventually be discovered.
John Russell
Dagmar congrats on yr 10! Much food for thought in this article. I think that since slow progression only comprises 20 to 25% of PALS, data have not been compiled and shared on our cases. I can't get any kind of long-term term prognosis in my case (5.5 yrs so far). Also recommendations for fighting via lifestyle don't come from the Dr's, more so from PT'S that work with me and observe on a weekly basis.
Most work is being done with patients diagnosed 18 months or less. I am optimistic that this will benefit slow progression as well.
Interestingly a neighbor 1/2 mi away on the same road was diagnosed after I was and did not last 1 yr. I'm sure this was not because he didn't put up a good fight. I often wonder if we are looking at one disease.
cone
Thank you again for another great article. End of this month will mark 2.5 years after my diagnosis, and I have hope that a cure will eventually be discovered.
dianne barret
Bonjour Dagmar and i too am very happy to read uplifting and encouraging articles on this dreadful disease. I live with my French husband in France and our 37 year old son was diagnosed 18 months ago with "slow moving". We and his sisters and all our family are of course devestated but he is so courageous and is at present just subject to a paralysed arm. There is nothing like these blogs in France and I am sooo pleased to have found all this info to help me keep afloat. Money is short for research projects and I so wish that more money could be made available to enable faster results. s there anything like these blogs in England? I am not sure who to put this question to..... but perhaps you might know?I and my daughters and granddaughters all participate in runs up mountains and around lakes and through the Bois de Boulogne to raise money for research. And I am even trying to write a song and send it to Elton John requesting him to put my poem to music in the hope that it too might help get more money for research. He has so much to live for and his little girl is just 3 years old. Thank you for reading this and for any help and suggestions you might have.
Dagmar Munn
Hello Dianne, I am sorry to read that your son has ALS...my best wishes to him and your family as you all begin this journey. You asked about blogs, forums, etc., and there are a few I will refer you to. Thanks to the internet, the ALS community can communicate with each other much better now!
- Do join the ALS News Today Forum. We have 450+ members from around the world, and discuss a variety of ALS topics: http://alsnewstoday.com/forums/
- The MND Association based out of England, is a good resource. If you contact them, they may be able to refer you to similar organizations in France: https://www.mndassociation.org/
- I will also mention my ALS and Wellness Blog, where I share tips and motivation from my own 10 years of living with ALS: https://alsandwellness.blogspot.com/2015/01/welcome.html
I hope these will be of help. Thank you for your comment and good wishes to you and your family.
Johanne Cooper
Dear Dagmar, can you please tell me what rebounder you would recommend for the home. I'm 90+ years young and would like to replace the one I've used for many years and strong enough for my 6'5" son who weighs around 250#. He will hopefully be using it with me.
I'm so proud and happy for your 10 year survival rate. You will make the cure and rebuild your body, I'm sure. While you are working at the cure, I hope you are careful about the nutritional asppect. Keep up the positive help to all ALS people! God Bless. Love your monthly's! Johanne Cooper
Dagmar Munn
Johanne - - I am hesitant to suggest specific brands. You have special requirements: able to hold 250 lbs., safety bars and ease of off and on. So, there are many retailers who will want to sell you their brand...so you will need to do a web search or visit retailers... but do know that price is dependent on sturdiness and safety features. I recommend one or two safety bars. Here is a link to my personal blog where I write about my rebounder. Good Luck - - Bounce Well :-) and keep in touch!
http://alsandwellness.blogspot.com/2016/03/im-still-bouncing-2016-als-exercise-tips.html
Kenneth
Hello my mom was diagnosed with progressive bulbar palsy which I learned is a type or ALS. She got a prescription of Riluzole, however it is not available in our country (Philippines). Does anyone know where to buy online ? Also, has anyone tried herbal meds or acupuncture? Thanks in advance for the response.
Dagmar Munn
Hello Kenneth, I am sorry that your mom has been diagnosed with ALS. Riluzole is a commonly prescribed drug to help reduce glutamate build-up in the brain. http://alsnewstoday.com/als-treatment/rilutek-riluzole/ You should check back with her prescribing physician for information on where to purchase it.
Herbal treatments and acupuncture are used to help treat symptoms, and are not cures for ALS. I suggest you join the ALS News Today Forums: http://alsnewstoday.com/forums/ where we have 450+ members from around the world who discuss and share information about treating and living with ALS.