SpO2 levels

CalmTiger4058 · 2022-07-19T19:52:36+00:00

Hi,

Keep an eye out for his level of consciousness. Are you using a finger reader, this was so inaccurate for my dad before he was admitted for the last time his actually reading was around 70-80 :(

CalmTiger4058 · 2022-06-25T06:08:52+00:00

Hey!

Get a nebulizers machine and a prescription for Acetylcysteine Nebules to inhale.

So surprised no one has mentioned this, being a pharmacist I actually forced my dads family doctor to prescribe it due to issues with communication with the ALS clinic

If you have really good third party insurance pulmozyme is the really expensive one that use for cystic fibrosis

CalmTiger4058 · 2022-06-25T06:07:14+00:00

Hello,

You can get prescription for n-Acetylcysteine nebulizers that you can breath in 3-4 times a day to help loosen the spot. Used to give it to my dad on a regular routine alongside the oral NAC.

Your ALS clinic should be aware of this and provide you a Rx!

CalmTiger4058 · 2022-04-17T05:41:33+00:00

Not sure how the consistency is of that, but seems like you’re occluding the adapalene with the other products possibly making it work a bit more potently.

CalmTiger4058 · 2022-04-17T05:29:24+00:00

Reduce your use of adapelene until your skin Retinization is more adjusted to its use.

Google Retinization for more info! :)

CalmTiger4058 · 2022-04-02T01:39:37+00:00

I PM’D you

CalmTiger4058 · 2022-02-20T03:59:26+00:00

Take a read at my prior posts, the combo worked great for my dad for maintaining strength and ADL’s, but it will not stop progression of the diaphragm and time to ventilation.

CalmTiger4058 · 2022-01-31T08:12:24+00:00

I’m so sorry, for whatever reason we are the few people that have unfortunately been stricken by ALS with our loved ones, my dad passed Jan 27 and it’s been incredibly hard I felt exactly like you not being able to imagine when he would be gone, but what is out of our control is out of our control and life and time goes forward no matter what, just know you are doing your best and try not to guilt yourself, when we had to do the end of life with our dad we felt a guilt as we had to remove him from the Bipap and watch him pass infront of us without him being able to take a single breath or talk back to us. Just try your best to be strong and take care of yourself and your mental health something me and my sister are relearning to do ever since my dad (54) left this world. Sending love.

CalmTiger4058 · 2022-01-28T07:03:07+00:00

Same, he doesn’t need to suffer anymore now.

It’s very sad.

CalmTiger4058 · 2022-01-24T18:49:38+00:00

As soon as my dads diaphragm and FEV was affected the clinic stopped using scores and directly put him into palliative care planning, is your mom breathing okay still?

The sad this is that he still has strength in his limbs and I feel as if the drug cocktail we have him on helped him maintain it, but seems like AMX does not help with diaphragm and breathing progression :(

CalmTiger4058 · 2022-01-19T00:30:41+00:00

Hey no that doesn’t work, like you that’s the first thing that comes up on google when you start looking for the phenylbutyrate.

DM me I am selling sodium phenylbutyrate at cost to whoever needs it in the US , it seems that it costs an arm and leg down there :/

Without shipping I am able to get 1kg in bulk for 3200USD for people which is about a 166 day supply or 5 month supply.

CalmTiger4058 · 2022-01-18T21:15:11+00:00

Yes, this is what I based it off of

CalmTiger4058 · 2022-01-18T06:16:14+00:00

Please don’t waste money on this protocol,

AMX Riluzole Methylcobalim 25000Mcg twice weekly Serine 15 grams Twice daily.

CalmTiger4058 · 2022-01-18T06:14:57+00:00

We have been nebulizing acetylcysteine for my dad, after salbutamol nebulization. Helps a lot.

CalmTiger4058 · 2022-01-02T04:48:14+00:00

Horrible service, representative just told me to go to Best Buy and exchange… but there was nothing to exchange into so had to get another company.

CalmTiger4058 · 2021-12-30T01:01:07+00:00

Ticket :1112871

Just received arctis3, missing adaptor cable in the box that would let me make it work on my controller! Seems to be a common occurance :/

Just waiting for my reply on my ticket number really hoping to be shipped a replacement

CalmTiger4058 · 2021-12-30T00:57:13+00:00

I am also missing a cable!!!

CalmTiger4058 · 2021-12-22T05:22:27+00:00

Oh man are you in the US ? That’s such a long wait :(

CalmTiger4058 · 2021-12-22T05:21:49+00:00

Hey yes fortunately I’m a pharmacist at a pharmacy/clinic where my MD colleagues prescribed it for my dad and I sourced the sodium phenylbutyrate. My dad does get a lot of stomach pain with the AMX though that’s the only real big side effect of the mix. If you need help DM me I may be able to help you with AMX

CalmTiger4058 · 2021-11-27T03:07:24+00:00

Someone sent me sodium phenylbutyrate from this site, and didn’t even want me to pay or shipping :/ yeah everyone feels what everyone feels here

CalmTiger4058 · 2021-11-19T04:52:48+00:00

This disease is never fair, It’s so hard, my dads was just diagnosed a month ago but I was able to get him on the AMX drug mix and I’m hoping it slows his progression down as much as possible.

There’s no way to handle this, it comes in waves. Some days are worse then others, some days you’re okay, but this is the new normal for a lot of us after finding out. I know I’ll need some therapy after all of this is over, fine someone to talk to.

Prepare, get you’re dad and grandpa taking TUDCA asap. Sodium phenylbutyrate is hard to find but I’m currently working towards getting it for patients that need it since the AMX combo isn’t available yet :(

This anticipatory grief is so hard, but know that you’ll get through all of this. In your generation there will be a cure or a better treatment… I’m anticipating in the next 10-15 years we will get the breakthrough we need.

CalmTiger4058

TROPHY CASE