Gideon

Gideon replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 2 weeks, 2 days ago

https://thesocialmedwork.com/ketas-ibudilast ask your Dr for Prescription
Gideon posted a new activity comment 2 months ago

Dear Julie
Thank you for your information, I am getting help from
Health well Foundation ,For infusion in clinic.
but the problem is Part D Through
(Kelsey Car Advantage)
I ask four company who do Home Infusion, All using part D
for the own Pharmacy,( all in Tx), The total charge
$14000.00 and I have to pay a 30% copay.
$4200.00 for every…[Read more]

View Conversation
Gideon replied to the topic Advice needed on Medicare covering radicava home infusions in the forum Living With ALS 2 months, 1 week ago

Dear John
Searchlight cover you until 65 years ,afther 65 thy don’t cover you
Searchlight drop my wife when she reach 65(Please see the contract from Searchlight)P.S thy send us a letter notified us my wife determinate at 65 when she legible for Medicare
Gideon replied to the topic Advice needed on Medicare covering radicava home infusions in the forum Living With ALS 2 months, 3 weeks ago

Dear Marianne
Thank you for your information, Home infusion company don’t budge. We have a advantage plan with part D, Home infusion copay is about 20% off $14000.00 for each infusion, This is a broken system, same medication in EU is only 570 Euro, I try to get someone to administrate ,but I can’t find anyone todo it.
We need to fight to…[Read more]
Gideon replied to the topic Pain management and ALS in the forum A Forum for ALS Caregivers 2 months, 3 weeks ago

Dear Robert
I wife taking Baclofen.4x a day, Gabapentin (300mgx3)three time a day, CBN+THC+CBD ( CBN 150mg, CBD 150mg, THC 150mg)Help with pain & neurological.
Gideon replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 2 months, 3 weeks ago

My wife taking 500mg Tudca 2x a day, B complex, alpha lipoic acid, THC 50mg 2x day, Taurine 1000mg, NAC 600mg, Riluzole 150mg Radicava and more.
This year my wife ALS turn aggressive afther slow progression for 4 years.
My wife losing her voice, and can’t walk or stand any more. losing her memory.
I praying for all of you.
Gideon replied to the topic Neck drop in the forum A Forum for ALS Caregivers 5 months, 1 week ago

Here’s a resource: Brand: Headmaster
Gideon posted an update 5 months, 3 weeks ago

My wife in last couple months having very hot ( red face) or very cold feeling( , She put the fan on and off al day and night
I like to know if somebody have the same symptoms
Gideon
Gideon replied to the topic Gabapentin, good or bad for ALS? in the forum Living With ALS 5 months, 3 weeks ago

My wife taking Gabapentin 300mg x3 three time a day for about two years.

I try to reduce Gabapentin by 1/3, The consequence was my wife hands start shaking ,

went back to original dose.

P S if you taking pill for depressing , Do not taking it with Gabapentin
Gideon replied to the topic Vaccine on the horizon in the forum Coronavirus (COVID-19) and ALS 9 months ago

The COVID-19 mutated 1000 time .the new virus from UK is 70% more contagious , and today the new COVID-19 from Africa is above 70% contagious. currently AstraZeneca and Pfizer conducting a new test with the current vaccine.

A new data show people with allergy symptoms should be more cautious to the vaccine.

From 200 million doses in 165…[Read more]
Gideon replied to the topic Leg jerks in the forum Living With ALS 9 months ago

Dear Wane

Taking Baclofen don’t make you lose muscle strength.

My wife taking it every four hour ,+ 900mg of Gabapeatin 3x a day .

Side effects of baclofen :

Drowsiness, dizziness, weakness, tiredness, headache, trouble sleeping, nausea, increased urination, or &…[Read more]
Kathryn F. Kennedy and Gideon are now friends 1 year ago
Amanda and Gideon are now friends 1 year ago
Gideon replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 1 year ago

My wife on trilogy noninvasive ventilator and Oxygen most of the time especially at night .She constantly tearing from her eyes . She been using Restasis for years . Does anybody have the same problem? Please let me know.
Gideon replied to the topic What is the hardest thing being a Caregiver? in the forum A Forum for ALS Caregivers 1 year ago

For me is just watching my wife decline every day is a struggle and anxiety, looking at my wife beautiful face put on wife makeup just to help her to look beautiful , Is heartbreaking, and feel so helpless.And grandson who never been able to known her. Wake up every two hours to monitor her oxygen and ventilator. On top of all fight with the…[Read more]
Gideon posted an update 1 year ago

My wife use to get Pressure Point Massage Therapy & Acupuncture after visiting Apple Clinic in Houston methodist hospital Dr Stanley Appel Neurologist and ALS specialist and ALS research , advice us not to do it. just do simple exercises he said .
- Dagmar Munn replied 1 year ago
  
  This is interesting, Gideon. Was your wife getting these therapies in order to relieve pain? Or for something else?
  
  Why don’t you add this comment to the topic we have on Massage Therapy & Acupuncture? Here is the link: https://alsnewstoday.com/forums/forums/topic/massage-therapy-acupuncture-have-they-helped-your-als/
Gideon replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 1 year, 1 month ago

My wife Neck muscles are weak. I call Appel Clinic Dr Stanley Appel. MD and ALS scientist at Houston Methodist Hospital . Thy recommended “Headmaster Collar ” by Symmetric Designs Ltd.( bought on Amazon) You can adjust the distance between the chest and the neck up to 3″.With additional part to support the back of the neck( metal plate). Unf…[Read more]
Gideon replied to the topic Diet and Supplements in the forum Living With ALS 1 year, 8 months ago

My wife use Nutricost Tudca 250mg, 60 Capsules (Tauroursodeoxycholic Acid) – Premium Quality

2 a day for a. she start in 2017 taking 250 mg one a day .
Gideon became a registered member 1 year, 9 months ago
- Dagmar Munn replied 1 year, 9 months ago
  
  Hello Gideon,
  Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010. If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic.
  
  If you have any questions, concerns or even…[Read more]
- Amanda replied 1 year, 9 months ago
  
  Hello Gideon, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us k…[Read more]