Alan Larrivee

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?

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.

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.

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

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

thank you

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.

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.

I live in New England. But my ALS is curtesy of my Italian heritage.

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

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]

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]

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]

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]

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]

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.

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]

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]

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.