Gideon

Hi Elizabeth

Please what is an “E AP program?

My wife stops using Relyvio after 2 weeks she doesn’t Tolerate it

My Darling wife was first diagnosed with Parkinson’s disease, Her hands were shaking, lost her ability to smell and test, after 3 Months waiting for  appointment with Baylor ALS clinic ,We find out she has first stage of ALS .

Help you if you do not reach 65 years old, over 65 they don’t help ( if you are sign in Medicare )

My Wife taking Relyvrio for 14 days now, For the last 3 nights (2 AM) she has a Spasms in both of her legs ( she is completely bedbound and has broken ankles)
And sometimes she has difficulty breathing,
I called Amlylyx and told my doctor they all suspected Relyvrio and told me to stop giving it for one week.

Does Das anyone have this problem?

Greek yogurt mixed with Manuka Honey ( reduce inflation) and tea spoon of olive oil,

I had a conversation today with an Amylyx reg a Capsule not advised to do
They said it is not efficient enough because is need to be in liquid to absorb by the stomach

Totally agree with you

Unfortunately, no one understands what ALS is, when I explained ALS to people I said: is like a three-prong electric cable, The outside is the muscles cover by three neurons, when this neurons get short circuit thy in progress kill the muscles .
It happens so many times that health care, or nurse, don’t have any knowledge what they doing.…[Read more]

https://clinicaltrials.gov/ct2/show/study/NCT04245709 The trial was ended on March 10
Second Trial NO 3rd Trial

Dear Kim
Why are you taking a drug Clenbuteral cost weight loss is illegal in US do to HAZARDOUS health effects
When you have ALS your goal to gain weight! The fat tissue in the body protects your muscle
Did you decide to take it on your own?

We stop going to ALS clinic. My wife and I used to go to ALS clinic,

We find out the the clinic uses my wife as a experimental for NP001, he the Dr refused to prescribe Radiciva for my wife, his opinion is not going to work  for ALS , I  do believe the the main reason is because he was funded by the pharmaceutical company he work for the trial o…[Read more]

Dear David

When my wife first diagnosed with Parkinson  on 2016.I try look for long term insurance, unfortunately I was denied. On 2017 we ask for  a second opinion and unfortunately my wife diagnosed with ALS,  still in I did not believe it we had a dream together, and our dream just lost in the fog,

Unfortunately the health system in this co…[Read more]

My wife’s have extremely hot and cold  feeling  all over her body ,we went to our  neurology, ALS clinic ,and no one know  the answer.

I am caregiver for my wife for over 5 years.

Yesterday was the first time that I had a nervous breakdown , the only thought I had is to end this situation by ending my own life, I am not sleeping as a human being ( 3 Hours a day maybe) Not getting help from her Brothers at all not monetary help or mental help, They never said or ask can we help …[Read more]

Totally agree with you  my wife taking it 3 time a day

Hi

My name is Gideon ,and I caregiver for My wife with ALS

Anger : Ever hour
Grief: every day
Fear: every Moment
Searching/Meaning  : all over the world try to find any want to answer
Guilt: Do I do good enough,
Anxiety: Every day dealing with the health insurance to provide my wife with right care

Which they didn’t have any knowledge about…[Read more]

totally agree

This is Same as my wife