Dagmar
Forum Replies Created
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I agree with Jean-Pierre: association does not mean causation.
Unfortunately, many people will read this and have one take: Antibiotics cause ALS. The article is potentially inflammatory to those people fearing medication and antibiotics in general.
These are direct quotes from the article:
1. “Although this was a large, nationwide study, the investigators cautioned that the results are only suggestive, and said more evidence is needed before any cause-and-effect relationship can be claimed.”
2. “[I]t is difficult to disentangle the effect of antibiotics from the effect of the underlying indications for the use of antibiotics, i.e. infections that might be secondary to the underlying ALS disease,” the researchers said.
3. “That means the findings “are only suggestive and cannot prove causality,” they added.”Further, the trend towards using sensationalized headlines (to generate “clicks” or SEO?) show how information can become warped. Many readers only remember the headline and do not take the time to read the full article.
Example:
Title of original research – “Antibiotics Use and Risk of Amyotrophic Lateral Sclerosis in Sweden”
Title of article – “Using Antibiotics May Increase Risk of Developing ALS, Swedish Study Suggests”
Association does not prove causation.
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Yes John, best leave the visuals to our imaginations! 😉
But we’ve all “been there.” It’s good we can all share a laugh… and laugh at ourselves.
Glad my story made you smile.
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In our little town, summertime means slow down and relax. “Snowbirds” or, part-time residents leave for their homes up north. During winter when they’re here, social clubs hold meetings, parking lots are full and there are lots of get-togethers. All that goes on hiatus June – August. Should I mention temperatures go up to 100+ for days on end 😉
This is my time to clean out the closet, dig out unfinished knitting and address all the little stacks of notes surrounding my computer 😉
We do have a trip planned in early September; to Las Vegas for an annual reunion – – of acrobats! My husband and I have belonged to the organization for a long time and this year, I’m receiving a service award for managing their website and social media.
ALS considerations… Even though it’s in September, we’ve already reserved our room: handicap accessible and on the ground floor. I’ll have my scooter and rollator along. It’s only a 6 hour drive for us – – we used to arrive the same day as the banquet, but now plan to arrive a day ahead to rest up. I also take along several of my breakfast smoothies – – frozen in their travel mugs – – so mornings/breakfast at the hotel will be easier. I can drink them in the room or down at the restaurant. I’m sure I’ll be sharing more about our planning as the date gets closer.
Note: There are some good travel resources and tips in another post in this forum, look for: “Travel Tips and Woes” (April 7).
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Hello Diana,
Persistence is the key! I’d love to have a week where I do all my exercise mini-routines exactly when and how I planned them out. But “life” gets in the way – – schedules change, my body feels “off” or I simply lose track of time. However, I do try to at least do “something” everyday and always, listen to what my body needs – – that for me, is the right balance. I’m sure you’ll develop your own “new normal” pattern as well.
As for the tubing… It is a piece of tubing from my husband’s oxygen generator (he uses it when sleeping) every so often, the tubing gets replaced – – I thought, why not re-use it? 🙂 However, similar tubing can be purchased at the hardware store or even the pet shop (aquarium tubing). Just make sure it is large enough in diameter for you to use – – to exhale dynamically through.
I do: 8 slow exhalations (counting to 15 or so each) then, 2-3 fast, strong exhalations. 3-4 times/week.
Hope this helps answer your questions 🙂
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Here is a photo of our shower set-up.
This used to be a walk-in shower with glass door and a curb to step over. We removed the glass; thus widening the entry and use a simple shower curtain. We also had the water control lever moved from being directly under the shower head, to the near wall. This way, a caregiver can turn on/off the water without getting soaked! Bottles are in a shelf with easy access from the chair. Hope this is of help to those planning some bathroom remodeling
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Here is a photo of our shower set-up.
This used to be a walk-in shower with glass door and a curb to step over. We removed the glass; thus widening the entry and use a simple shower curtain. We also had the water control lever moved from being directly under the shower head, to the near wall. This way, a caregiver can turn on/off the water without getting soaked! Bottles are in a shelf with easy access from the chair. Hope this is of help to those planning some bathroom remodeling 🙂
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A good companion article is the one Rick wrote about a year ago. Here he describes how Medicare pays for his 28 hours a week of home health care services. Medicare has specific criteria and hoops to jump through, but Rick is open and helpful with his “how to.”
How Medicare will Cover Home Healthcare
If you encounter resistance from Medicare, then refer to his 2019 column linked in Amanda’s post above.
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Of course, it’s best to avoid stressful situations altogether: plan ahead, have a backup plan and know your limits. But when stress sneaks up on me, I stop and – – notice what I am feeling, identify what was the cause and focus on staying in the present moment and breathing very slowly. If possible share a laugh about what happened – – that helps diffuse everyone involved.
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Todd’s experience points to how important it is to have a correct diagnosis as early as possible, so that appropriate medication and therapies can be initiated.
Unfortunately, when he was diagnosed in 2014, his general practitioner wrote off Todd’s symptoms as due to depression. Hopefully, the many awareness campaigns in the past 5 years have helped make ALS more visible… and recognizable to medical professionals.
General practitioners should refer patients on to specialists asap. Or, maybe we patients need to become more assertive about the “care of our health.”
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Thank you for posting this Amanda!
All ALS patients, family and friends should know that having ALS qualifies for Social Security Disability benefits AND for Medicare benefits.
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John, You are certainly not alone in being challenged (mentally and physically!) everyday by ALS.
I’ve begun to think of it as slow motion DIY counseling – – each new challenge confronting and peeling back another layer of my preconceived notions about “how it should be.” Embracing the “new normal” is not for sissies!
Do share what you learn about the Indeelift, and what your PT recommends.
I am still able to lower myself (holding onto a chair) to the floor, one knee at a time. Once there (we have carpet!) I do 5-min of baby-like crawling – – about 40 hand-and-knee crawls forward, then backward to my chair. While I’m down there, I also carefully roll onto my back and roll-push myself back to hands-and-knees. Finally, I hold onto the chair and push-pull myself to standing (rollator ready for me to grab).
This little (but mighty) routine has come in handy when I happened to fall several months ago (I thought my rollator was locked, but it wasn’t!). I curled up into a ball, rolled over to my hands-and-knees, then baby crawled across the room to my sturdy chair. From there I could pull up to a stand. Hope this experience is of help to others in the Forum. (I learned the skill from the site: OriginalStrength.net …they have great videos)
John, you are doing great! We pALS need to continue to do anything and everything to help us live well and accept the “new normal.” 🙂
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Mary,
The consensus is with what Jean-Pierre stated – – there is no current treatment to “cure” ALS or, “reverse” it – – traditional medicine or alternatives.
Anyone claiming to have a cure is a sham. Unfortunately, there are unscrupulous people who take advantage of our vulnerability just to line their own pockets.
Find a good doctor who is experienced with neurological diseases; ALS specialty if possible. Be open to the advice and treatment options. Traditional medicine is OK.
The side-effects of alternative treatments are the worst: 1. They don’t work, 2. They are a waste of money.
To put things in perspective and maybe, add a smile to your day… here is something (tongue-in-cheek) that I wrote about alternative treatments for ALS: Auntie A. Ellis Gets Cured
Keep asking us your questions, together we can support each other 🙂 Dagmar
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I’m in total agreement Glen. And thank you for sharing your own experiences with Radicava.
It’s always funny when researchers discount placebo – – as the “Placebo Effect” has been proven to be 10 – 90% effective! Here is an interesting explanation of placebo: More Than Just a Sugar Pill
I do take Riluzole (50mg 2x/day) and have been for the past 9 years. Other than that, I’m sticking with what is working for me: daily gentle exercise, good nutrition, positive mindset, practice mindfulness & keep stress low, sleep well and…stay engaged in life.
This forum is an excellent resource for how others are living good lives while living with ALS.
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Awwww…. John, thank you for confirming that Mary Janes (even large ones 🙂 ) look fine! Diana & I appreciate the encouragement!
Add my congratulations as well, for your good strength and respiratory scores! I know well, how good it feels to go home knowing not everything is in decline. It’s like getting a little psychological extension on life – – a boost. Keep at the leg/knee pulls and keep up the good mindset!
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Here is a helpful link from the Hotter site about measuring foot size (be sure to measure while wearing your AFOs) https://www.hotter.com/us/en/info/fit
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Unfortunately, this retrospective look at 3 studies on Radicava is a rehash of earlier reports and findings.
The real title should be: “ALS Therapy Radicava Limits Functional Decline by 30% Only in Patients within 1-2 Years of ALS.” Note: all studies were done on patients of first 2 years of ALS; results are only “predicted” for those further along in the disease.
This meta-analysis could only find 3 studies on the drug – – a total of 368 patients, half of them were on placebo. So, the drug was approved by the FDA based on: 184 patients in their first 2 years of ALS experiencing a slowing of progression. No data was shared as to how long the patients had symptoms before being diagnosed, their ALSFRS-R score at diagnosis or, if they were a fast- or slow-progressor.
The cost of Radicava and its delivery requirements are hefty compared to predicted outcome.
You can guess that I am not a fan of Radicava (brought to market too soon, high costs, intense delivery) and from what I’ve read of patient comments, many stop taking it due to not seeing expected results.
Is there anyone in our forum who is on it and seeing results? I’d be interested to read our other member’s thoughts about this drug?
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You are correct Diana. The film does not portray well the profile of a classical pianist – – or the loss felt by one experiencing ALS. I stick by my summation: this film is a good example of “what not to do” when diagnosed with ALS. ….on second thought, the director could have taken that theme and turned it into a comedy instead.
I share your feelings and sense of loss – – my own stemming from a life of dancing and looking forward to retirement and taking dance and movement classes for “me.” I would have loved to explore Flamenco, Tango and more ballroom (even compete!). But my feet can’t dance anymore… so, what I’ve learned these past years of living with ALS is that: we need to accept and honor our ability to reach a pinnacle in a chosen profession…. but then be able and willing to push off in a new direction. To accept that we have more than one dimension of self-expression and intellectual creativity. That, is the challenge. And that, is where being optimistic and open to trying new things comes into play.
Back to movies… I’m planning on watching next: “The Theory of Everything” about Stephen Hawking. Will post my review here soon.
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I agree with you Jean-Pierre in that there are too many sub-divisions of diseases; case in point – – ALS.
It is confusing for not only patients but the public; especially when it comes to awareness and fundraising campaigns. ALS? MND? Lou Gehrig’s disease? – – people wonder exactly which disease they are contributing to. In the end, they are the same.
There is an interesting trend that I’ve been noticing, to group (ALS, MS, Parkinson’s, etc.) under the umbrella term: Rare Diseases. This term is beginning to be used more and more for advocacy and funding purposes. We’ll have to see where it goes.
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You are so welcome Diana! Glad to be of help.
Having that PT who “gets it” is so valuable too. Have fun pilates-ing & in the water 🙂
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A great and highly reputable website that focuses on scams, alternative and off-label “cures” for ALS is: ALSuntangled.
Click on “completed reviews” to see a rating of popular therapies.
Click on “open reviews” to see the scary world of scams, shams and hope-in-a-bottle methods that are advertised in the ALS community.
“ALSUntangled is a social media based tool lead by clinicians and scientists designed to provide unbiased and comprehensive reviews of such treatments and thus allow patients to make more informed decisions about them. ALSUntangled was founded by Dr. Richard Bedlack, Director of the Duke ALS clinic in Durham, NC, and is currently sponsored by The Motor Neurone Disease Association and The ALS Association. Reviews are published as open-access articles in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration and are also available on the ALSUntangled website.”
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Your explanation helped me to better understand this article. Thank you.
Perhaps you are our go-to interpreter of these types of studies. Again, I wish the author of the article would have taken the time to explain (similar to what you provided) what this was about in layman’s terms, rather than repeating sentences from the original abstract.
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Well said, Jean-Pierre!
Taking the easy road: a retrospective study.
Another good website that separates junk from fact is: alsuntangled. Their focus is on checking out scam, alternative and off-label “cures” and treatments for ALS.
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In reading the article and from what I could understand (I wish these reports were written in layman’s language!) – – this study proved that the Mesenchymal stem cells (MSCs) of ALS patients behaved no differently than those of healthy people. Stem cells of both groups were able to control inflammation.
Since ALS symptom progression has been identified to be caused by ongoing inflammation (T-cells)… then it still remains a mystery of how we can stimulate our stem cells to help reduce inflammation.
And still no cure. Just a slowing of progression.
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Mary, thank you for sharing your story and continuing journey towards a diagnosis.
We’ve all played the game “what did I do to cause this?” – – but if it were that easy, we’d be putting a lot of medical experts out of a job 🙂 Better that we, who live with the symptoms, learn to adapt…and focus on family, friends and ourselves. My slogan is, we can learn to live well while living with ALS 🙂