lynnm
Forum Replies Created
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Michelle Lorenz has been gathering this information from across the United States for the past year. Below is a link to the Facebook group where we have been contributing our local information, and you can see it by state. I can’t remember if it is a private group or not, but the information is interesting
https://www.facebook.com/groups/als.clusters/?ref=share
Hope this is helpful
Note from the group moderator: Please use care when reading posts by various social media groups ( such as above) that are not affiliated with reliable medical sources.
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lynnm
MemberJune 22, 2021 at 9:50 pm in reply to: Complications with Riluzole and high levels of Vit C and other supplementsI have been taking riluzole for 18 months with no problems. My neurologist checks my liver function (blood test) every 3 moths to ensure the riluzole is not causing any liver problems. I would talk to the prescribing doctor about the nausea and fatigue.
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lynnm
MemberMay 20, 2021 at 3:06 pm in reply to: ALS Association Announces Goal of Making ALS Livable by 2030I found the ALS Association’s of making ALS a livable disease by 2030 is appalling. They have had years to support finding treatments, and they have failed. I find it very frustrating that they spend more on salaries than the do on research and supporting pALS and cALS.
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Richard,
I am more concerned with quality of life than life expectancy. If I live 10 years and 6 are immobile and dependent on someone else, that doesn’t sound like living. My neurologist likes to say it’s about living longer, but for me it’s about having quality not quantity.
This is just my opinion, and I might feel differently if I had young children. -
I use Text To Speech on my phone and iPad. It works great for phone calls and just for conversation. When I’m making a phone call, I always plan ahead for what I want to say and what I think the will ask. I’ve also used it to ask Alexa to do things. The app is free if you allow the ads or a one time charge of $4.99 to go ad free (well worth it to get rid of ads). Something I recently discovered is it syncs my phone and iPad.
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lynnm
MemberJanuary 19, 2021 at 6:24 pm in reply to: Has your State made the COVID-19 Vaccine available to pALS and caregivers?I live in Washington State and the governor just made the vaccine available to those 65 and over yesterday. Until that happened, I didn’t qualify.
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Sorry to hear about your fall, one of my biggest fears.
My Alexa dots can’t understand me so I am not able to use them to make any phone calls. I use an app on my phone, Text to Speech, to tell Alexa what I need, but that doesn’t help if you don’t have your phone. I am also able to use a text feature in the Alexa app, again using my phone, to let my husband know that I need him to come help me. It is set up to broadcast to all the dots in the house and garage.
I purchased an Apple Watch a year ago . If I fall and don’t stop it in a specified amount time (can’t remember how long it is) the phone app will send emergency services to my location and notify the people I have listed as emergency contacts. I listed my husband and also my daughter who lives 3 houses down the road. This has given me some peace of mind when I am alone no matter where I am.
Not sure if this helps.
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lynnm
MemberNovember 24, 2020 at 9:47 pm in reply to: BrainStorm Cell Therapeutics – NUROWN – Disappointing news but…So am I reading this correctly?
”I agree with Dagmar that money should be spent on people who decline slower.”
Are you saying those with fast progression should be put aside and only those with slow progression should be considered for treatment??
I’m sorry, this comment just seems a bit calloused.