Doug Frazier

Fred:

I agree about the metal tubes. The only way you could sit down is if you had custom foam cushion made with a slot cut in it but I don’t know if that would work either.

I ordered one because I can still walk and I want to try and continue that until it becomes unsafe. My right arm is going so some time this year my lack of arms will make…[Read more]

Luke: Great reply. Thanks.

If I understand your description correctly, it sounds very similar to the device at stopheaddrop.com. Click on products.

The inventor is an ALS patient.
Would you look at that and let me know if it sounds similar?

Someone suggested this to me but I have not tried it yet. I showed it to my OT this past week at…[Read more]

I don’t claim any great planning. More like dumb luck. My company offered it when I was 35 years old. It was so cheap I simply said why not. I don’t remember even giving it much thought. Now, 35 years later it will pay off. I haven’t used it yet but it won’t be long.

In the last decade, they offered chances to increase coverage for an increas…[Read more]

Robert:

My doctor confirmed that you (and the Mayo site) were right and that my bottle label was wrong about not taking Riluzole with food. So, thanks for taking the time to reply initially.

The site also said not to chew the tablet which I was doing because of difficulty swallowing. My doctor then prescribed the liquid form. It is much more…[Read more]

For Riluzole, my instructions are only twice per day, with no mention of food timing but I checked on Mayo’s site and you are correct. I will check with my doctor and let you know if the directions I received were on purpose or not and let you know.

George:

Thanks for the advice. I will pass the direct approach tip to my wife. Luckily, she is not the shy type and will have no trouble with this.

I agree with your vacs approach as well. I had to do that with my own brother. He still wouldn’t get vaxed so I met him on the back porch, separated by a long distance, wearing masks but I think we…[Read more]

To everyone that replied:

Thanks so much for taking the time to reply. Even though I have read about and know what is coming, the aspect of being a burden on others has been haunting me. Hearing all of your details from real life have really made a difference. I think it moves it from theoretical future stuff category to concrete details. The…[Read more]

Bill:

That is just what I needed. I was fearing sitting at the table doing nothing and maybe making the whole thing awkward. Or group meals are usually so fun that I didn’t want to bring things down. Hearing your comments reinforce that I just need to chill out and go and they will understand.

I will definitely be asking the doctors about the…[Read more]

Elizabeth:

Thanks for the thoughts. Very helpful.

Doug

Carolyn:

Thanks for the additional thoughts. These kinds of details were just what I was looking for.

Thank you

Bill:

1. At a larger family dinner (family, their spouses, etc.) do you sit at the table with the others and not eat? Does the conversation flow as usual? I guess if I tell them not to feel like they need to draw me into the conversation they would, of course, respect that. With me I think there is this subconscious desire to not be the reason…[Read more]

Carolyn:

Establishing practical time limits and combining the visits on days with other commitments are great ideas. I need to realize they will understand and just relax.

Thanks

Maggie:

I think what bothers me subconsciously is the thought of altering the usual flow of a group dinner because I can’t keep pace for whatever reason but you are right, my friends / family will completely understand and want to do what’s best for me.

I do need to keep reminding myself that my friends will fully understand the situation no…[Read more]

Dagmar:

I appreciate the details. I am a newcomer to ALS. It was nice to see your normal diet having such good results for you.

Doug

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Duane:

I was having stomach issues with Riluzole. What finally eliminated all the stomach issues was two things:

1. Eating half my meal, taking the Riluzole, then eating the other half of the meal. It also seemed that some amount of grains in the meal was important. For example, if I ate only vegetables, fruit and nuts but no grains, I could…[Read more]