Dagmar
Forum Replies Created
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This is good news! Scientists are finally unraveling and identifying how cell structure and protein build up contribute to ALS. Now we just need to speed up the time it takes to go from animal models and theory to actual treatment with reliable compounds.
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Quoted from the article:
“Many factors are known to influence outcomes in ALS, including age at disease onset, the body region most affected at onset, delays in the diagnosis, functional test scores, and those impacting nutrition and psychological well-being.”
So, low BMI at diagnosis and rapid weight loss are only one indicator. These can be addressed by focusing on what is causing the weight loss: inability to eat/drink? – – then make food modifications or use a PEG. Inactivity? – – then initiate a physical movement regimine. Low calorie foods? – – then eat high calorie foods.
To me, this study proves that if you don’t do anything to correct the problem – – it only gets worse.
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Yes, Lisa… I agree with all the previous comments! Do keep us posted as to progress and your experiences in the study.
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This sounds like they are truly making progress. Thank you Amanda, for participating in this study – – you are helping all of us!
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This is great news!
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Thank you Diana for sharing your neurologist’s comments about B12. Yes, I have seen both injections and sublingual versions offered to patients with fibromyalgia and B12 deficiency – – it gives a temporary feeling of energy. But also correct that B12 has no direct effect on ALS.
I too was following a healthy diet pre-ALS. In fact, I was a lacto-ovo vegetarian for 11 years! When I was diagnosed with ALS, my neurologist recommended I eat more protein – – I switched to being a meat-eater. Healthy, balanced meals with healthy snacks. I am able to keep my weight, my energy and… enjoy my meals!
I believe the extreme diets and mega-supplements put our bodies and digestive systems under strain – – which added to adjusting to how ALS affects the body, is additional strain we just don’t need.
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While I support the author’s wellness approach (and that we are both yoga and meditation instructor’s), she does not indicate having experience working with or counseling ALS patients.
This article is a nice summary of news articles recently posted on ALS News Today, however… and most important:
…the Deanna Protocol was evaluated by Dr. Richard Bedlack (neurologist at Duke University) in 2014, and determined NOT recommended for ALS patients. No human trials have been conducted; only with mice.
Here is Dr. Bedlack’s review:
https://www.tandfonline.com/doi/full/10.3109/21678421.2013.788405 -
It’s unfortunate that ALS is not one of the 30 core conditions in the screening protocol.
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The ALSFinding a Cure® Foundation, has an eight-part video series that covers basic information about living with ALS. Here’s the link: http://www.alsfindingacure.org/content.php?page=videos
These short films include interviews with ALS patients, their caregivers and family along with the ALS experts from Massachusetts General Hospital.
While individual videos address the typical ALS-related topics of relationships, nutrition, mobility, hygiene, breathing and communication, I especially appreciated the inclusion of a new topic: Leaning In. This video presents the concept of being proactive about the disease; to learn, to plan, to stay true to one’s self and to embrace each stage with a positive attitude.
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This is very helpful Amanda!
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After years and years of only having animal models (ALS mice, white flies and zebra fish) to use a models for possible ALS therapies and medications, researchers now have a new method at their disposal. Patient cells combined with chip technology can better mimic each patient’s unique genetic makeup.
Each ALS patient exhibits ALS in so many different ways, I believe that pursuing personalized treatments will result in better outcomes for us all. Now, we need to push this concept into actual use… to meet needs of people living with ALS today.
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Those are great goals Diana!
Here we are at Friday – – and I’m happy to report that I managed to complete my goals for daily exercise, breathing exercises and 10-min. mediation. yay! I have to say that knowing I’d have to report back at the end of the week kept me focused.
However, I failed at the clean-up goals: magazine/book piles and work table knicky-knacks remain in place 🙁 I will give this a go over the weekend or… make it next week’s priority.
Anyone else have ALS-related goals or activities going on this week?
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Amanda – – my comments don’t really address your question about if anyone is participating in the same clinical trial as your cousin. But… I can’t help but offer some advice regarding his low energy.
I call it Living in the Slow Lane, and we pALS do have to adjust to a new normal in our body’s energy level. One thing he can do is look for how he is unnecessarily expending energy. Examples: walking and pushing the grocery cart rather than using the electric shopping cart. Lifting or carrying heavy items rather than using a walker to transport them (in the home!). Even changing from a hand-held to an electric toothbrush eases tension in the hands, saving them for other use.
As far as having trouble getting up from chairs – – he should try to keep his leg muscles strong and moving. Perhaps share with him my column Be Willing to Do Just One.
His participation in the clinical trial is to be applauded. Your cousin is helping our ALS community become closer to discovery of a cure.
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Hello Stacy – – I applaud you for taking on the caregiving responsibilities for your father. You are right, that every person with ALS follows a different journey. Your goal to “stay one step ahead” is admirable but with ALS, it is difficult to take a systematic approach. Symptoms vary widely as well as pace of progression. Plus, your father’s age, general health and existing conditions at time of diagnosis all affect the course of the disease.
Blood clots “may or may not” be common. I have never experienced them and I’m in my 9th year. Although, patients who are sedentary or bed-bound may have more risk of developing them.
My advice is to be a “generalist” – – have a good understanding of what ALS is, and, the possible directions it can go. Develop a good relationship with your ALS Assoc. coordinator; they will be very helpful. Attend a caregiver support group: ask questions, meet others you can email or call.
https://alsnewstoday.com/what-is-als/
https://alsnewstoday.com/als-symptoms/
And finally, do post your question here in the ALS Forum. There are many caregivers here and we can support and learn from each other. You are not alone. 🙂
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A “good day” for me, is when I accomplish all my scheduled exercise mini-breaks, do my breathing exercises and fit in a 10-minute meditation. Lately, life’s distractions and busyness over the past three weeks have interfered and I’ve only accomplished 1 or 2 items. A trend I need to change!
So, this week, my mighty goal is to do all of them (exercise-breathe-meditate) every single day! whoo hoo!
I’m also planning to continue the goal of clearing excess clutter around me (I wrote about what got me started here: Chasing Down My Someday-itis ). This week, I am attacking misc. mini-stacks of magazines & catalogs plus culling down the “knicky-knacks” crowding my computer/work area.
I have a daily checklist for the above goals – – here’s to a good week ahead!
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This is a great link Amanda!
I took a quick look at the webinars on this ALS Assoc. site – – these are good for our newly diagnosed patient members and their caregivers.
I’d be interested in learning which ones our members watched and recommend for others.
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I agree! Biomarkers for ALS are at the top of the list. I am constantly amazed at how challenging this seems to be for the researchers to do.
Thank you Amanda for participating in this study – – you are helping us all!
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Yes, better design of the study: match ages, health condition, symptom time prior to diagnosis and more…. I always feel disappointed when research dollars & time are wasted on useless results and information. 🙁
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I agree with you Jeanne-Pierre… this article contains questionable information and conclusions.
It is true however that “ALS patients show low levels of vitamin D, probably due to different factors: age, the presence of chronic disease, physical inactivity, reduced sun exposure, and malnutrition.” This can be true as well in non-ALS people.
What I found interesting, were the two studies mentioned. 1) showing the benefit of vitamin D for ALS patients
https://www.ncbi.nlm.nih.gov/pubmed/23815870 and 2) showing no benefit
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5505528/
Perhaps the function of adequate levels of vitamin D for the ALS patient is simply one component of managing daily health of the body and thus avoiding vitamin D deficiency related health issues – – rather than evaluating vitamin D as the “holy grail” of slowing the progression of ALS symptoms.
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Bambi – – this is a medical issue… and the best advice is for you to contact your pALS’s physician as soon as possible to discuss your concerns.
Your bio shares that your pALS is currently in the ICU…so, please consult with the medical staff assigned to his care. We all understand and can empathize with your concern about a loved one – – but for issues such as this one, it is best to rely on his medical team. My thoughts and prayers are with you and your pALS.
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I agree with you Mirella – – we need a faster track to discovering treatments for ALS.
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Bravo John! I am so happy to read that these 2 PTs are helping you with moving!
They seem to be following the fundamental movements (rocking, rolling, twist, crawl, etc.) that I have found helpful through the Original Strength format. I think, I hope, you will begin noticing your body going through these movements easier each time/week, plus, feel better after each visit 🙂 Yay!
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Need a little more motivation to begin using a shower chair? Then read:
I’m Learning to Heed My ‘Aha” Moments
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Bravo! She applied a systematic and proven strategy towards raising awareness and it worked!
Raising awareness of rare diseases – – one country at a time… helping patients receive medical treatment and furthering research to discover cures.