Share this article: Share article via email Copy article link. The ALS News Today forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today! The early symptoms of ALS often involve muscle weakness or stiffness. Print This Page. She has experience in social media, worked with several media channels, and has also worked as a freelance photographer and a graphic artist for almost 10 years. Recommended reading. November 11, News by Somi Igbene.
November 10, Columns by Rick Jobus. Pin It on Pinterest. It only gets worse with each passing day with no hope of an effective treatment in sight, let alone a cure.
Why would anyone want to prolong the inevitable pain and suffering any longer than necessary? Not me. It is what it is. I would prefer to end it sooner than later. ALS is a conveyer belt of problems. We are all in the gutter, but we have to continue to try looking at the stars. I fully agree. Quality of life is much more important. I am saying that both as a rapidly progressing patient and prior Physician. Hi Richard. I see no logical reason to prolong the inevitable.
The sooner I leave the building, the better. I totally understand how you are feeling. I guess all we can do is try to cope as best as possible and take care of our mental and physical health. Take care and best wishes. Hi, Victor. There is one last hope I cling to. Hi Kathy. Yes, all we can do is try to get through every day as comfortably as possible and be thankful for loved ones and caregivers who do their best to help us day in and day out.
God bless them. Bill — — Dr. Bedlack found 40 people who were diagnosed with ALS, and, each was able to either plateau their symptoms or the symptoms disappeared. A few were in Hospice, the majority were in the first years of ALS. Varying symptoms. Dr, Bedlack is currently reviewing their files and verifying their original diagnosis… as well as looking at any commonalities among the group.
So far, he has identified supplements. He has chosen Curcumin as the first supplement that he will put through a follow-up group study.
Thanks Victor. I agree. Nothing but suffering in misery for months or years until you die? Makes no sense to me. Hi Bill. Would you know the name of the supplement s that those 60 people may have been taking that had reversed ALS? Only supplements were found to be common among the 40 patients.
However, I do know that these supplements have not stopped or reversed my decline. Here is my supplement list:. A note to our members: this list posted by Richard is only a list.
I feel I have a great quality of life: I walk with a rollator, eat normal food and still can talk — — — I never took any supplements only my daily Riluzole medication for 9 years. Only 2 years ago, after much research and reading Dr.
It is shown to be anti-inflammatory, helps with memory and digestion. Having spent my professional years in the wellness industry, I have learned to be skeptical of what supplement sellers claim. I think that is where his Theracurmin trial originated.
I do take the Theracurmin 90 mg x2 purely on reading Dr Bedlacks stuff. Vitamin, fish oil, B12, magnesium are only other. Who knows if anything helps with ALS but I expect some make us feel better. I mainly concentrate on adequate sleep and enough nutrition to avoid weight loss. I think I need to give my cells enough energy to assist their fight.
All our ALS are definitely different subsets of this beast. Frank and Victor, I too feel the same as you. They talk of trials that sound promising. The webinars are usually interactive, allowing you to ask type questions directly to the Healey Platform Trial Team.
There are no shortages of research articles claiming potential positive results. An ounce of performance is worth pounds of promises. We need a cure now. However, as we all quickly learned, ALS progression is not the same for every patient. Impossible to predict. Both are ambiguous terms depending on who is claiming to know the definition.
Richard — — I disagree with your assumption that Steven Hawking was an anomaly and your assumption that he had little quality of life. And could afford high-level assistive technology. I believe that his total life-long focus on discoveries in space and matter helped drive his longevity.
He lived well — — he was well taken care of and he found meaning for his life. It measures: 1. Negative Emotion, 2. Interaction with People and the Environment, 3. Intimacy, 4. Religiosity, 5. Physical Symptoms, 6. Bulbar Function. The only gap is in our own mistake thinking they are separate. ALS progression is impossible to predict but some doctors tell you a certain number of years you are going to live and tell you to focus on the quality of your life and do things now while you are still able to like going on trips, etc.
Quality of life is more between my ears than it is in my suffering. If I let suffrage take over and hold on to the pity party of me having ALS, I miss out on the joy in my heart that makes life worth living.
Who wants to live in a depressed state without any hope? I would hate that more than I could ever hate ALS! I have read many articles about PALS where the writer exclaims an amazement of how our courage and outlook is an inspiration. It motivates me so that I want to emulate that image, and it also shows me that I do not have to surrender to suffering.
I do not need to have a pity party because I still have so much to live for. There are people who love me, and people I love that I want to spend time with. Every minute I have I can be optimistic about because my mind still works. Now there is something that does jinx this entire thing. We, as well as those around us, are going to mourn that we are dying from ALS. Mourning is a 5 step process that must be worked through. Some of us will go from 1 to 5 quickly, while others will take weeks, or months.
My best advice is to learn what mourning is, how it affects you so you have an understanding about what it is doing in your life , and as you learn what it is, you can move through it and get it over with. Once it is done, and you have accepted this lot in life, find joy and happiness to fill your days.
Time is too precious to waste. I agree with you, John. My therapist said that the way doctors communicate things to their patients is very important and she wished that doctors had more training in having empathy and compassion for their patients.
Like you said, acceptance is important and we need to make the most of the time we do have. This can be very challenging but all we can do is try to cope as best as possible and try to stay positive. For me quality is not defined by whether you need a wheel chair or breathing assistance.
I have worked in the disability field for most of my life and maybe that helped. I have friends who have used wheel chairs or communication devices their entire life. They have had full lives. When I was diagnosed last August, I went through a period of panic when a neurologist told me I might have a year. There was so much do and so little time. I have banked my voice, have an effective exercise routine, and use a bipap at night.
I am in the Healy Platform Trial. My symptoms have stabilized. For me, quality of life is defined by being able to connect with family and friends. I am blessed with a wonderful family, a devoted partner, and great friends.
Well said Tom! My Reiki Master recommends accessing all the medical and environmental tools I feel will help me, identify supportive positive friends and family and focus on those relationships. Staying calm and positive will allow my inner body to be open to healing. In addition to physical activity, if you were the type of person who minimized the dependency on others and maximized the dependency of others on you, then I feel it is not going to be a high quality of life for you.
Thanks for your responses. I have always been a physically active person, swimming, skiing, hiking, and biking. I miss this terribly. However, I do not have a choice with my ALS.
The choice I do have is to live life as best I can. Spending more time with loved ones is a gift. Tom, You are correct, live as best as we can. Time is our least renewable energy.
Learn from others when possible. However, rare cases of the disease do occur in persons in their 20s and 30s. Although the cause of ALS is not completely understood, recent research suggests that multiple complex factors contribute to the death of motor neurons. Research published in suggests that smoking tobacco may heighten a person's risk for ALS. Diagnosing ALS is difficult because there is no single medical test for it.
Also, since many neurologic diseases cause similar symptoms, these other conditions must be ruled out first, through clinical examinations and medical tests.
A comprehensive diagnostic workup includes most, if not all, of the following tests and procedures:. Individula doctors will determine which of the above tests to conduct, usually based on the physical exam and the results of previous medical tests the patient has had.
Currently there is no known cure or treatment that halts or reverses the progression of ALS. In addition, there are several promising clinical trials being conducted worldwide that are yielding important information on how to combat this disease.
While the search for an effective treatment and cure continues, multidisciplinary teams across the globe are assisting patients and their families to adjust to the many challenges of living with ALS. These teams of specialists use devices and therapies to help patients manage their ALS symptoms and to allow people with the disease to maintain their independence and quality of life. This multidisciplinary approach has also been shown to prolong survival of people who have ALS.
Many people with ALS and other neuromuscular diseases decide to take part in research studies to help test new medications and treatments aimed at treating the disease. What is ALS? What are the symptoms of ALS? Who gets ALS? What causes ALS? How is ALS diagnosed?
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