[Roman]

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

[Roman]

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

[Roman]

“Living on the edge of the abyss”

[Roman]

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

[Roman]

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. The facilitators have a lot of compassion, as you and Dagmar have with us. I am new in this als community but I feel I have been here since my diagnosis.

Thanks for your great support

[Roman]

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.

[Roman]

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 an IND appoval from FDA, they are working hard to star in US a clinical trial they will not be read this year (2024).

Takes too much time to make decisions while our devasting disease is progressing fast in some of us.

Also is not easy to engage an a clinical trial, I have found a lot of burocracy.

[Roman]

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

[Roman]

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 understand my situation and be compassionate with me.

Really I am Thanksfull with my clinic

[Roman]

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

[Roman]

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 of course put clean water.

Palleative and hospice assistants have to know all about the NIV cleaness

[Roman]

Congrstulstions Amanda. I am happy for you.

[Roman]

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

Thanks

[Roman]

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.

[Roman]

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.

[Roman]

I should include

everythingals.org

Every week has presentation of some experts and innovative trials

[Roman]

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

[Roman]

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

[Roman]

Caroline

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

[Roman]

Good

[Roman]

I totally agree

[Roman]

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.

[Roman]

Excellent. I agree with you a 100%

Thanks for your words

[Roman]

Amada

Excellent, good to hear good news. Blessings