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Alan Larrivee replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 days, 7 hours ago
Hi
this may not be the best place but I can’t find it anywhere
my speech is getting worse. Slow and sometimes slurred. Don’t like talking.
It was recommended that I have a card with me that states I have have ALS and it affects my speech. (In case I get pulled over by the police .
Does anyone know more or how have other people handled this issue?
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Alan Larrivee replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 days, 7 hours ago
There is a free app I use on my iPad called Notability. I can use my finger or a stylus to draw words.
Its simple to learn and use and very effective.
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Alan Larrivee replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 3 days, 21 hours ago
Joined A Phase 2a Study of TPN-101 in Patients with C9ORF72 .
Had to promise not to use any of the other drugs. Fair enough. They only promised a slight delay in symptoms.
maybe TPN-101 will turn out to no better but I feel like maybe I’m helping the science move forward.
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Alan Larrivee replied to the topic Newly diagnosed? What do you want to know right now? in the forum Diagnosis Information and General Questions 1 month, 1 week ago
Hey Jerry
you caught my eye with Nuedexta .
Are you saying you take it for Mucas? I can’t find much information.
i would love to know more
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Alan Larrivee replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 1 month, 1 week ago
Folks paying 700 a month, 8,000 a month. 22,000 a year. A drug that costs 150,00 a year??? All this to delay the inevitable.
insurance companies making medical decisions.
imagine what the price would be if they had a cure
I don’t want to bankrupt the people I leave behind.
yes, I am frustrated
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Alan Larrivee replied to the topic Loose bowel movements in the forum Living With ALS 1 month, 3 weeks ago
thank you
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Alan Larrivee replied to the topic Loose bowel movements in the forum Living With ALS 1 month, 3 weeks ago
Not loss of appetite but has anyone else been having an issue with keeping food down?
a lot of times now after eating if I bend over I come close to losing it. Sometimes just turning. Even very small meals.
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Alan Larrivee replied to the topic Speaking Up for Your Healthcare Needs in the forum Living With ALS 1 month, 3 weeks ago
I’m fortunate that my wife and primary caregiver is not afraid of ruffling feathers. She can get things done. With my speech difficulties (coupled with a predisposition not to rock the boat) I can’t always advocate for myself. I am very grateful for her.
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Alan Larrivee replied to the topic Another theory! Causes of ALS in the forum ALS News 2 months, 1 week ago
I live in New England. But my ALS is curtesy of my Italian heritage.
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Alan Larrivee replied to the topic Welcome to the Club in the forum Living With ALS 2 months, 1 week ago
I forgot to say that I am so sorry to welcome you to the club.
I always fall back to Groucho Marx who said I wouldn’t want to be a member of any group that would have me as a member…Amanda, you will be in my prayers
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Alan Larrivee replied to the topic Welcome to the Club in the forum Living With ALS 2 months, 1 week ago
That pesky C9 is what my family passed on to me. The drugs are important to me, I would love nothing more than a cure. But as I got it, so I am passing it on. That makes me saddest. I truly hope that my children and grandchildren get a chance for a cure. That’s why I will fight. Donate. Push for more funding and research. Praise the efforts b…[Read more]
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Alan Larrivee replied to the topic Learning to LIVE with ALS in the forum Living With ALS 2 months, 4 weeks ago
I have a question. It seems now I am far more emotional than I ever was. I can’t believe it but movies and songs can now bring a tear to my eyes. I chock up talking to people and can’t finish my thoughts if it’s an emotional topic. It’s nothing to do with me or my situation most times. I don’t understand.
Has anyone else had this issue? I’…[Read more]
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Alan Larrivee replied to the topic Confused about progression of symptoms in the forum Diagnosis Information and General Questions 3 months, 1 week ago
Diagnosed over this last summer. Started mostly as loss of clear speech. Muscle twitching became regular. Have seen atrophy in the hands. Right side weakness. But still functioning. I swim laps 3 times a week. Have dropped number of laps by a third. Try not to push it, too much and I can get pains in the muscles, but still love the water. Will be…[Read more]
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Amanda and
Alan Larrivee are now friends 3 months, 1 week ago
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Alan Larrivee replied to the topic When did you first hear those dreadful three letters…A….L….S ? in the forum ALS Awareness and Advocacy 3 months, 1 week ago
For some reason the response I posted to you was lost.
I try again. I was genetically tested with C9. When my brother was diagnosed they could only test for SOD 1. He was negative for that. My mom died in 2002 and I don’t think there was any genetic testing being done. At least none was discussed.
Good news though I have been accepted into a d…[Read more] -
Alan Larrivee replied to the topic When did you first hear those dreadful three letters…A….L….S ? in the forum ALS Awareness and Advocacy 3 months, 3 weeks ago
My grandfather died of ALS 5 years before I was born. So I grew up with the knowledge. When my mom was diagnosed in 2000 it was reinforced. That was followed quickly by a sister in law and a then my brother. I couldn’t trip without the thought of ALS sneaking into a conner of my mind.
Then it was my turn. That news came on my birthday last s…[Read more] -
Alan Larrivee replied to the topic Is it a Happy Season? in the forum Diagnosis Information and General Questions 3 months, 3 weeks ago
That was well said Katie. All I want to add is that I treat this as possibly my last Holiday season that I’m near fully functioning. I owe it to my loved ones to do what I can to make this season a fond memory. Happiest of Holidays to all.
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Alan Larrivee replied to the topic How Do you Decide What Medical Interventions are Acceptable? in the forum Living With ALS 3 months, 3 weeks ago
Diagnosed only a few months ago. Bulbar. Voice is getting weaker. From a family of ALS, no one lasted more than a few years. I have no illusions about the future. Have a few advance directives. That said I will reserve the right to override myself if it want. Do not think I will but you never know. My faith sustains me. I feel the love and support…[Read more]
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Alan Larrivee replied to the topic Getting over the Tofferson Fear in the forum Research Topics 4 months ago
Was just informed that I have been accepted to a screening for a Transposon Trial. If I pass the screening there will be 3 spinal taps over the next year. Never had one before. Seen them on Doctor shows. Not comfortable about it but I don’t want to spend my days sitting around waiting for the end. Besides if I make it sound like I had an awful t…[Read more]
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Alan Larrivee replied to the topic Winter is coming! What are your tips for avoiding weather-related ALS symptom aggravation? in the forum Living With ALS 4 months, 1 week ago
First winter. Central Massachusetts isn’t the worst place. Have hyper reflexes. So much to look forward to. Thank you all for the heads up. It’s not something I would have thought about.
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