@patknight
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Pat Knight posted a new activity comment 2 years, 6 months ago
Frankie, i hear you and i to am at peace with leaving my body and this disease. You are brave and a good soul! I know this is hard to reach this point but I don’t want my family watching this slow death . Good luck and my thoughts are with you ❤
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Pat Knight posted an update 2 years, 10 months ago
I been on a m x 0 0035 for two months now and have noticed a little help like my doctor said it will be 10 to 20% effective so far so good hope other people are trying it
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Pat Knight posted an update 3 years ago
AMX0035 well we finally found the sodium phenylbutyrate for 1700.00 for a 40 day supply. With the positive research about this new combination I cant believe more people are not talking about it. I’m going to try it better waiting around for NUOWN wich is sad that it’s not getting pushed harder. Anyway I’ll keep you guys informed. THX
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Kathryn F. Kennedy and
Pat Knight are now friends 3 years, 1 month ago -
Pat Knight posted an update 3 years, 1 month ago
@denisehagen Hi I started using forarm crunches and now use a scooter in my shop or yard its better than using your muscles which I found the hard way if you push it you loose it. I can still walk a little with my crutches but prefer my scooter just to save what I have. Good luck
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Pat Knight replied to the topic The impact of having ALS on a spouse in the forum ALS and Relationships 3 years, 1 month ago
I think watching our family go through this is harder for me than actually going through it. Especially my wife now caregiver
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Pat Knight posted a new activity comment 3 years, 1 month ago
So we went to place the order for the sodium phenylbutyrate and then was quoted 5800.00 for a 30 day supply so much for the 1000.00 first quoted I truly try to keep a positive attitude with every obstacle but some days make it difficult. 😊
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Pat Knight posted an update 3 years, 1 month ago
AMX0035 Well we’ve been trying to get the sodium phenylbutyrate but of course the insurance agency’s aren’t covering it so so far I found it for 1000.00 per month my dr. Told us that thay are trying to get help getting it recognized I cant remember with who has any body else been trying?
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So we went to place the order for the sodium phenylbutyrate and then was quoted 5800.00 for a 30 day supply so much for the 1000.00 first quoted I truly try to keep a positive attitude with every obstacle but some days make it difficult. 😊
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Pat Knight posted an update 3 years, 1 month ago
@dagmar-munn Hi Dagmar my Dr gave me a prescription for the AMX0035 trying to get the sodium phenylbutyrate is the problem my wife is going around with the insurance company so far we have found it for around 1000.00 per month.
Has anybody else been trying this?
Let’s hope for the best 🙂 -
Pat Knight posted an update 3 years, 1 month ago
AMxoo35 my Dr. Told me about this new treatment and told me I should try it has anyone else trying this ? You can buy TUDCA on Amazon but I can’t find the sodium phenylbutyrate. My pharmacist tried but we live in a small town . now trying another one .
Thx -
Amanda and
Pat Knight are now friends 3 years, 1 month ago -
Pat Knight and
Dagmar Munn are now friends 3 years, 1 month ago -
Pat Knight replied to the topic Are you getting a flu shot this year? in the forum Living With ALS 3 years, 2 months ago
Hi everyone, yes I got my flu shot I have for the last few years. I know it’s not certain but I heard that even If I get the flu it helps with the side effects.
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Pat Knight became a registered member 3 years, 4 months ago
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Hello Pat, Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010. If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns or even…[Read more]
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Hello Pat,and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us k…[Read more]
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