Dagmar
Forum Replies Created
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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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I am amazed (although maybe not surprised) by how little promotion of Rare Disease Day I see on ALS social media. RDD is Feb. 29th. BTW
I wonder if it just doesn’t have visibility yet, or ALS community doesn’t see the value, or people don’t understand what it is???What do you think of Rare Disease Day?
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I’m a dyed-in-the-wool “the glass is half-full” person. These were my songs before ALS, and they’re still my go-to melodies now:
Zippity-Do-Dah (although the original movie was controversial, the song is super!)
Singing in the Rain – Gene Kelly
Good Morning – Mikey Rooney & Judy Garland
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Maybe the app doesn’t provide ALL the answers, as in: Keto Diet. Actually, new evidence shows a diet with high-glycemic foods (anti-KETO) slows down progression. There is an online lecture about this coming up:
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Rare Disease Day may be a new event to newly diagnosed ALS patients. They might even ask, “Why should I care?” Well, I’ve learned it matters a lot for us – – we gain more visibility, advocacy, and funding. I wrote a short piece about this annual event here: https://alsnewstoday.com/columns/landscape-als-patients-has-changed-over-years/
Feb. 29th – – wear your purple, pink,, and green… or show your stripes… whatever,…just help celebrate the day!
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Hello Fran, I am pleased to know that one of my postings brought you to our forum. You have a positive attitude – – which you’ll certainly need (!!!) to live with ALS. Yes, most of us are over-informed (“Dr. Google” haha) by the time we are diagnosed. I hope you’ll find our discussions helpful. Again, welcome!
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I have been taking Riluzole for the -past 14 years. When I was diagnosed in 2010, that was the only medication available. Years later, by the time the other “Rs” were approved, I had established my daily routine of Riluzole, exercise, and other lifestyle changes that have been shown to slow progression, I didn’t want to upset my pattern – – and risk possible side effects. Which one has slowed down my ALS? I don’t think there’s one easy, magic bullet. But the combination is working in my favor.
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Has anyone tried the new slip-on sneakers (like Sketchers) to wear with AFOs? Or, even to wear without AFOs?
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More great titles! Keep them coming!
How about – – – “Gravity Wins” …. a science fiction about Earth suddenly having too much gravity. Everyone walks like a zombie. Meryl Streep plays me and Brian Cranston is the evil guy who increased the gravity. lol
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Let’s see, what happened to me in January?
For several months, I had been working off a tablet with a cracked glass. In January I finally bought a new one…. which meant taking time to load in all my favorite apps… which meant I had to look up all the passwords… which meant I didn’t have a record of some of them… which meant I went through the “I don’t remember my password” prompts… all of which resulted in me starting a notebook for recording my passwords. Now that it is February, I finally can use my tablet. 😉 😉 lol -
When I was newly diagnosed my top 3 questions were:
– What is ALS?– How did I get it”
– What is the cure?
….now 14 years later, I’m still waiting for the answers! But, seriously, what are YOUR questions, and how can we help you?
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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. ??
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Emee, may I ask what else are you doing to help slow down your symptoms , besides taking the medication?
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Roman, thank you!
And I agree, the EverythingALS group is very helpful with their relevant seminars and video library. I happen to be in their voice study as well.