[gideon]

<b elementtiming=”ar-headline”>FDA-approved ALS drug Relyvrio could be pulled from market after failing clinical trial

Adrianna Rodriguez

USA TODAY

usatoday.com

USA TODAY

USA TODAY

[gideon]

I tried to get help for my wife, but unfortunately, all the companies that I hired claimed to be Expert in ALS, but had no experience or knowledge about ALS,

I was so frustrated, As a caregiver I have a lot of health issues I could go to a Dr for more than 3 years, and I am falling apart

Her Family  does do anything, as her brothers said that she is dead ready, there is no need for help,

Thank heaven for good neighbors they go shopping for me

So sad and so mad

 

[gideon]

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 .

[gideon]

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?

[gideon]

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. Or what to do.

[gideon]

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

[gideon]

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?

[gideon]

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 of NP001,  The nurse told on second visit ( my wife was in the  hospital room and they send the Assistant Dr to check on her, we had   very bad experience she the Dr did not give a hoots on my wife condtion )The nurse told me thy on Interesting in patient with first stage of the Disease for research, thy get a million dollars from the pharmaceutical industry sorry for you and your wife. PS any time that we need help with equipment or advise, thy told us you must come in to the clinical, it  look very clear. That money was all about, it is so bad that you have to depend on Dr to refer you to Clinical trial

 

 

[gideon]

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.

[gideon]

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  you ? Do you need anything ? or how do you feel

I feel like  Don Quixote fighting  for my wife medical insurance, Medications, Equipment ,O/T,P/T ,finding the some doctor just gave up on my wife,” put her in Hospice is the best way for you ”

How can I give up on my wife’s who I married for 41 years .

I can’t go shopping for food, only order on line , never get the right items. because my wife don’t like any Home care coming in to help, She doesn’t feel comfortable with stranger. And if I try to reward myself to a treat, she yell ,wtf you need it,

She tries to control everything
She’s keeping score with her husband

So right not EZ when you. 70 years old and disable for more then 15 years

I like to thank everyone for support  this blog. I pray for all of you .

 

 

[gideon]

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 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 the ALS, (98% don’t know what ALS is)

Depression: When sun go down and you just laying in bed and your eyes just looking at the Celling wonder WHY

Loneliness: No Family support  , jut old friend far a way from us,

Confusion: If I am  doing right or wrong

So sad to see love one just disappear in front of you

 

Yesterday my wife told me : I know see thy end ,and I am scared to die

[gideon]

Dear Naomi

The most effective way is to start Radicava in very early off

[gideon]

My Dear friend

I am in the same boat with you

The family just running away doesn’t help at all

PS They are very Wealthy and don’t even offer to help with Medication or stay by their sister to help her husband.

My wife broke her legs when she tried to get up she could not stand on her feet, She is a Bedbund.for 3 years.

My kids are just Waiting to see me and her dead so they will get the Inheritance

My older son Came here to visit with his wife and they got the nerve to tell me what furniture You want”

I told him your Mother and I are not dead yet. what’s wrong with this Generation, They don’t give a crop about the Parents

Friends don’t even understand the need or the Situation, just don’t call anymore ( Try to explain what is ALS, but no one understands)

Tired, fade up, sleep less, in the house 24/7, and on top of all I am Disabled.

Sad Sad

.

[gideon]

Hi Elizabeth

Please what is an “E AP program?

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

[gideon]

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

[gideon]

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

[gideon]

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

[gideon]

Totally agree with you

[gideon]

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 country leave you with no money and no hopes, and day to day struggle .

In Texas if you  sign for Medicaid’s, you have to sign your home bank accounts, land  as a collateral  for careing you love one by the system.

Try to find any organization for help  with equipment, drugs, respite help

We all here to help each other.

Best wishes

Gideon

Caregiver for my love of my life

 

 

 

 

 

 

 

 

 

 

[gideon]

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

[gideon]

totally agree

[gideon]

This is Same as my wife

[gideon]

you can buy it on TheSocialMedwork

[gideon]

She taking all this supplements for 4 years
just this year ALS symptoms getting more aggressive.