Dagmar
Forum Replies Created
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Hello Nomad, You are not alone in discovering that ALS can zap your energy – – mind and body. It takes a real mindset change to “out-finagle” it. But it can be done. I’ve been at it for 14 yrs now.
What I do: no more solid one hour workouts…. break it up into short segments throughout the day. No more traditional strength training (lifting weights)… take joints through their range of motion (circling, etc.), I do combination movements on the floor with my body weight as resistance. Give yourself a recovery day if you’ve done a lot of exercise movements.
I’ve written quite a few posts about how I exercise. Use this link and scroll down to find “Exercise Tips” https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html
I’m happy to discuss this with you further and answer any questions you may have. “Keep Moving!” Dagmar
alsandwellness.blogspot.com
ALS and Wellness Blog - Index of Articles
ALS and Wellness Blog - Index of Articles
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I’ve only had the past experience of relying on Home Health Aides on a part-time basis to fill in when my caregiver husband was in the hospital for overnight tests. We used an agency that was recommended by my ALS Clinic… Bayada. They had received extra training for ALS. I was very satisfied with their care and even wrote a column about it.
https://alsnewstoday.com/columns/when-i-needed-home-healthcare-aides-they-came-through-me-living-als/ -
Over the past decade, I’ve had to deal with many ALS-related changes in my body. But right now, I’m feeling more fatigued in the afternoon than before. Is it from ALS or part of the aging process? I don’t know. But, I have found that 5-min. of sitting-breathing-focusing-on-nothing resets my brain and energy. …. maybe there’s just too much social media and weird events happening nowadays – – that whoops me out. (ya think???) 😉 😉
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I was fortunate not to have a delay time between testing for and receiving a diagnosis. Although I’ll admit I lived with the symptoms for months thinking they would go away. Maybe I was part of the delay?
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I think (I hope) that nowadays more patients feel empowered enough to recognize when a doctor is not a good fit for them… and seek another opinion. In the past, we used to “grin and bear it” – – but now there is so much information that’s available about ALS – – we should expect our doctors to know what ALS is and how best to treat it. Their personality or bedside manner should also be compatible with ours.
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At my first ALS clinic visit (14 yrs ago), I at the time was a vegetarian. I followed that diet for about 11 years prior to my ALS diagnosis… but at that first visit, my doctor told me I need to consume waaay more protein. I felt I had reached my limit of protein-containing soy and legumes – – blech! So, I switched to adding animal protein to my diet. I gained a few pounds and felt good. The dietician told me to “eat whatever I wanted” – – and don’t worry about calories. But I chose to remain a “healthy” eater- – a mix of veges, protein, carbs, and “fun foods.” It’s been good so far.
Lately, I read about the reports on high-glycemic intake helping to slow down symptom progression. (https://alsnewstoday.com/columns/sorting-out-sometimes-confusing-advice-als-diet/) So, I’m enjoying my cookies and dough-nuts a bit more now 😉
alsnewstoday.com
Sorting out the sometimes confusing advice on ALS and diet
Columnist Dagmar Munn considers the often confusing advice she's heard about ALS and diet over the past few years.
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Sometimes we don’t realize we’re accommodating or compensating for an ALS symptom… that leads us into a negative habit. For example, I have the tendency to sit for long periods of time due to weak legs and ALS-related lethargy. I now try to take a break every 1/2 hr. to bend & extend my legs (5-8 times each leg) and stretch my arms up while leaning back. It’s a new habit that helps me live with my ALS.
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My ALS clinic team and neurologist know that I have read “almost everything” about ALS – – so when I come in, I expect them to help me maintain the level where I am. I expect improvements in the areas that I can control. After 14 yrs. there’s not much new they can tell me.
BTW – I don’t consider death as a stage of ALS. It’s a stage of life.
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I correlate it with the increase of saliva. A parasympathetic system on overdrive.
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… or it could just be age-related memory loss.
But I do like the image of “having too many words stored in my brain” 😉 😉
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Amanda, would you share an update on how the Toferson is helping you so far? We are cheering for you 🙂
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I’m curious as to what our members think about this recent news? Will it be of help, would you consider having your children watch an animated film as part of your discussion with them?
https://alsnewstoday.com/news/short-film-luki-lights-illuminates-als-diagnosis-young-people/
alsnewstoday.com
Short film 'LUKi & The Lights' illuminates ALS diagnosis for young...
The animated film, which debuts March 22 at Cinema Village, New York, aims to help children cope with the complexities of the disease.
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Nettie, that is an issue I face every day… but I don’t know if it is due to my aging, or what? In my case, because I have difficulty forming some words, my brain has to do a lightning-fast search for synonyms – – words that mean the same thing but are shorter and easier to pronounce. Sometimes, the search is “flashlights in a dark basement!” 😉
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As much as I’d like to support local, family-owned, small restaurants, I’ve found that the “franchise”/big name ones are where I can easily navigate doorways, find accessible seating, accessible restrooms, and handicap parking. Too bad the small ones have too invest so much $$$ in meeting ADA standards. I empathize with that issue.
So, I consider that when voicing a suggestion ( er, complaint?) to the manager.
Even with ADA standards, I’ve found restroom stalls too narrow, doors difficult to open, and seating hosts who don’t understand why I don’t want a table in the far back of the restaurant.
What have you experienced?
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With my “ALS-voice” I find it difficult to realize when others don’t understand what I’m saying. I get frustrated and say it louder – – which doesn’t help at all! I should take a breath and speak carefully and with normal volume. Ha! Why can’t I do that the first time?!
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awww… 😀 Thank you Amanda for that – – we are a team and we both enjoy helping the members of this forum community in any way we can. You are a wonderful partner to have in this endeavor. Congratulations to you too!
6 years is a long time in “ALS years.” I’m grateful that our forum members decided to join – – their voices and opinions add much to our ongoing discussions. Although, I’ll admit to being shocked that we welcome nearly 10 new members per week – – that means 10 more ALS diagnoses – – 10 too many having ALS without a cure yet on the horizon! I am grateful the ALS News Today Forum is a safe harbor for us while we wait.
Amanda and I are always open to your suggestions – – so members, please don’t hesitate to chime in or send a message. I look forward to another year of friendship, community, and pushing for a cure! 😀
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As a pALS who’s lived with ALS for 14 years – – I vote “more & better treatments and even (gasp!) a cure.
We have enough walkers, rollators, power chairs, respiratory devices, feeding tubes, and eye gaze devices. How about something that eliminates the need for these entirely? While I’m on my soapbox 😉 I haven’t seen any improvements in feeding tubes, eye-gaze devices, or BPAPs. Still the same as 10 yrs. ago. So, let’s focus on the cause of ALS and the cure.
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Moving fast….especially when I’m late or people are waiting. It’s just impossible to move any faster than my ALS-slow-motion speed.
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I have that too for 14 years now. In the scheme of things, I consider it to be the least of my problems – – I carry a handkerchief with me at all times. And live with it. 🙂
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Michael L, thank you for sharing that helpful information! Maybe it will motivate our members to seek out and join similar commissions in their communities. You are correct in that nothing will change if we don’t speak up.
I also appreciate learning that there is no so-called grandfather clause… and every establishment must comply with the ADA guidelines.
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I used to think asking for help was a sign that I wasn’t a good enough human to do things myself. Being independent is not an all-or-nothing mindset. Know that others “want” to help you, and giving them the opportunity is helping them too. Struggling is a waste of energy – – I say, ask for help when needed, and save your energy for activities that are important to you. 😉
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Eric – – that is fantastic! I cheer you on! And… I’ve “been there” – – barely lifting one leg…weeks later it clears the floor! … weeks later, two legs…
Keep at it, don’t give up. Progress is slow but it will come. You are teaching your brain and muscles how to communicate with each other again.
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howard-d, you are correct that following a healthy diet, especially if it is tailored to your individual health needs & other conditions, is best.
RE: hypermetabolism – – “normal” or non-ALS patients burn calories at a predicted rate. With ALS- hypermetabolism… the muscles are burning calories at a higher rate.
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Maybe new ALS patients feel so overwhelmed with ALS information that they overlook what the Rare Disease advocacy is doing to help ALS. ??