At the beginning depresed, but after, I change my mind thinking I can inspire others around me being positive, grateful with my caregivers, and say love more frecuetly. Now I enjoy the Olympics

The doctor give me amitriptyline and atropine two drops a day. It reduces me a lot the phlegms and mucus. I also use cough machine

Clene has an EPA Extensión Protocol Access. I emailed direct to Clene and they answered me there are 2 ways to Access: 1. Healey Platform C 2. Contact synapticure.

It looks good. Thank you for sharing the info

The trilogy (NIV, cough machine and suck machine), electric wheelchair, tobii , electric toothbrush and hospital bed

Of course Amanda

The doctor is internal Medicine. I decide to us it because I review the home page of the device and it is used is some diseases including parkinson

Unfortunately my ALS progresses is pretty fast. Actually I have a lot of phlegms and Sometimes I feel I cant breath. I use the cough machine 3-4 times a day. Also the weakness of my arms is horrible. But anyway Thanks God Iam alive

Today I started neuro estimulation at home. It is 20 minutes electric estimulation twice a day during 7 days, and see results. It was recommended by a doctor. The name of the device is vielight. You can check it in Internet

Excess of saliva and phlegms, recently I have to use 3 to 5 times a day the cough machine if I want to breathe. Really is horrible

Difficult to me is the weakness of my neck (I use always a collar), swallowing problems, speech disturbance, weakness of my arms and hands, but the most difficulty is when I cant breath well, I use the cough machine 2 times a day to extract phlegms from my throat and lungs.

Fortunatelly I am in possitive mind and fighting to continue being alive

Kiko

Comparto contigo lo que dices, a mi también me resulta más lenta la enfermedad con las 3Rs. Desafortunadamente he tenido neumonia, covid, gripe, bajo de peso . Y es ahí, cuando estas débil la enfermedad avanza.

Saludos

“Living on the edge of the abyss”

Ccleland

Im very sorry for your husband. I appreciate very much sharing us your info and experiencies. I believe in the future stem cells will be the cure for ALS. Again Thanks. Blessings

Hi Amanda

In everythingals I have found guests who gave as vía zoom an excellent presentations showing us advances and results of some clinical trials and als topics, such us:

Phase 2 of PARADIGMA (prime C), Radcliff, stem cells, digital biomakers. Nurown, Healey program, and more. When there are no guest we chat and share experiences. …

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Caroline

I have United Health Care insurance (Obama care) also I pay 1,000 dlls/month but it covers radicava and relyvrio

Good

Inner peace. I desagree with my condition but finally I accept it. I need to take out my fears, my anxiety, my why’s.

I want to be grateful for those things I can do, for my family and friends, for my ALS community, for the life

Then I will have the inner peace that I wish.

Also I would like to add that in Israel had a clinical trial in phase 1 and 2 “transplantation of astrocytes derived from human embryonic stem cells” . They obtain good results and will continue with phase 3.

I contacted the sponsor Kadimastem to ask when they plan to have a clinical trial in US, they answered although this spring they received…

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I totally agree

I have 1.5 years using Radicava ORS. Iam sure it helps me to slow the progression of the disease with no side effects.

Hi Caroline

I have severe weakness on my left arm (I cant move it), and my shoulder and neck (always I use a neck collar). My PT hold those weakness areas and slowly move it. I feel how the muscles are moving and make me feel good. I think the important is keeping moving the muscles by yourself or someone else.

I go to clinic every 3 months. In El Paso, TX., its small facilities but the personnel is great. They help me to obtain authorizations of my medicines (riluzole, radicava,relyvrio), also a electric wheelchair , they have records of my Wright, ALSFRS, respiratory values, answer all my questions and always I receive an advice. They…

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Excellent. I agree with you a 100%

Thanks for your words

My physical therapist makes me move muscles that I rarely move, such us neck, Arms, shoulder. I feel little pain. Then she give me a massage. After the therapy I feel with more energy and strengh. For me, moving/exercise muscles is very important

Hi James

I have almost 2 years using NIV. When I receive the NIV therapist only give me general instructions. I learned on the way.

I got a sever infection because the cleaness of tubing system. Is very important clean tubes at least 2 times a week, change filters frecuently. If you NIV has humidifier clean the water container every day and…

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Amada

Excellent, good to hear good news. Blessings

Congrstulstions Amanda. I am happy for you.

I appreciate very much your comments. I have bulbar ALS and I know at any moment of my life I will need trach

Thanks

Excellent discution

Also I have neck weaknes. I use a simple foam neck collar that I adjust with the velcro. Is very simple, lightwear and easy to use.

Is very frustating, I have tried to apply for some trials, and months later receive an negative answer, some other trials not respond. Do they really are interested to help us, or is just another good job for them.

I should include

everythingals.org

Every week has presentation of some experts and innovative trials

For me meditation, read books from Joe Dispenza, Eckhart Tolle, Erick Fromm. The book I love is “living and dying book” (Tíbet filosophy) and more. Watch in youtube spirituallity programs. Is very important be connected with my soul

I believe it was a excellent decision, specially at the beginning of the diagnose. I understand the stem cells take from 3 to 6 months to give results. I think stem cells are our cure in future.

Im very glad the Giostar therapy was good for you. I have some months planning to go to Giostar and your testimony esforcé my decision. Can you share in what location of Giostar you were and how, at this time, the stem cells help you. I wish you be good. Thank you

1. Accept and say thank you to the desease. I have learned a lot from ALS.

2. Love and enjoy people, family, friends, community, all.

3. Spiriruallity is very important

4. Be connected with others

5. Never forget The Hope

In my speech therapy I do some exercises for tongue, creek, jaws, and more, using an Electric stimulation machine. My swallowing has improve a lot.