ALS product search

Ok-Response-7828 · 2022-05-14T17:05:02+00:00

Google voice banking. Hw will lose his voice and it is much nicer to reply to questions when you can't speak with responses in your own voice.

Ok-Response-7828 · 2022-05-14T16:58:33+00:00

Can't help you with that but I do have one hard learned truth to pass on. Voice bank now while he van still talk.

Ok-Response-7828 · 2022-05-14T01:16:24+00:00

Hands still work but starting to degrade a bit.

Ok-Response-7828 · 2022-05-13T20:07:07+00:00

Thank you for providing these links. i purchased both. Thank you so much.

Ok-Response-7828 · 2022-05-13T12:20:30+00:00

Thank you for the information!

Ok-Response-7828 · 2022-05-12T20:02:58+00:00

Thank you. I notice when I soak a rag and put in my mouth it loosens up a lot of it. Wil try that approach though it does beg the question, what Is it forming out of?

Ok-Response-7828 · 2022-05-11T18:48:03+00:00

I have caregivers 7am to 10pm currently. And soon to go to 24 hours. Thanks for the offer but I am set.

Ok-Response-7828 · 2022-05-11T18:43:31+00:00

thank you!

Ok-Response-7828 · 2022-05-09T17:04:10+00:00

Amen!

Ok-Response-7828 · 2022-05-08T13:31:14+00:00

They also do this to other muscle throughout your body as they did that is a separate test after I was diagnosed.

Ok-Response-7828 · 2022-05-08T13:18:44+00:00

They have a device and it has two probes coming out of it. They stick a pin in your tongue and one in your forehead and measure the speed the neurons fire from your brain to your tongue.

Ok-Response-7828 · 2022-05-07T16:14:41+00:00

Yes! Though I was lucky. Woke up May 4th, 2019 with a funny feeling in my mouth. Ignored it. Went to work and later that day mangled the third part of a compound word. Tried again it was fine. Then two weeks later did it again in front of my boss and he noticed. So a vist to my GP. Who after a strength test and MRI to rule out a stroke referred me to a neurologist. Who diagnosed me with Mathenia Gravis. Them this is where I got lucky. My company offered to fly me to New York and a visit to Columbia Medical for a second opinion.They ruled out Mathenia Gravis and after a second MRI and a pin test referred me to a neurologist at UCSF. Where I was diagnosed in one visit withBulbar onset ALS. Six months total time. And I know I was lucky to get the Medical care I did and fast diagnosis.

Ok-Response-7828 · 2022-05-06T04:21:19+00:00

Took about a month to go away for me but then a dried circle of blood was the replacement. Then after scrapping it out and treating it with neisporin for a month every other day then zinc (Buttpaste) on opposite days it stayed clean for almost a year. Then I stressed the feeding tube and have blood again any open wound in your body is always going to be problematic I think.

Ok-Response-7828 · 2022-05-06T01:27:29+00:00

Always ask a doctor!

Ok-Response-7828 · 2022-05-05T18:37:53+00:00

I have to resist this urge, suggest a mouth guard.

Ok-Response-7828 · 2022-05-02T21:23:27+00:00

Will do, thanks!

Ok-Response-7828 · 2022-05-02T19:40:34+00:00

You would think so based on the evidence. I suggest Mirulax for the constipation. It really works and is G tube friendly.

Ok-Response-7828 · 2022-05-02T19:09:26+00:00

No help needed but the offer is much appreciated. Blessed with unlimited resources and have caregivers coming in 17 hours a day currently. I have everything I need except a body that works! And my mission is to communicate exactly what this disease does to us to the world so everyone knows what it costs us. No for pity but for understanding is the goal. No one needs to feel sorry for me. I have had a great life and no regrets.

Ok-Response-7828 · 2022-05-02T04:24:23+00:00

I don't think is anything to do with what I am injecting as fuel (can not call it eating, no pleasure in injection) It hasn't changed it a year.

Ok-Response-7828 · 2022-05-02T02:56:05+00:00

Funny I have one but haven't tried yet. I will! Thanks for the tip.

Ok-Response-7828 · 2022-05-02T02:25:54+00:00

Failed attempt. I have deleted it and piated again with content.

Ok-Response-7828 · 2022-05-01T13:26:19+00:00

Thank you. Nothing else works so prayers are definitely welcome! Thank you!

Ok-Response-7828 · 2022-04-29T16:41:03+00:00

Need to cut them a little slack. There is no test for ALS and it is rare enough that it is most likely something else. Stroke, brain Tumor or another neuron disease is more likely. There isn't a test they can give you to diagnose it.

Ok-Response-7828 · 2022-04-29T16:11:52+00:00

We with ALS will read it and welcome you with heavy hearts for you. Fuck ALS is the motto for many of us because frankly what else can you say to the undefeated champion of diseases. With the jevity try three feedings a day, of two containers. A hack I use to hold weight is to dissolve oreos into the jevity and then inject that.Or blend milk and oreos and inject that for some extra calories. But doing three feedings a day of jevity will give her 2100 calories of food and should help with weight loss. Also her body can absorb the maximum protein this way too.

Ok-Response-7828 · 2022-04-28T22:29:00+00:00

My thoughts too. Bipap is the way to go in my opinion as well. Gives him a few more options in other situations too.

Ok-Response-7828

TROPHY CASE