[nicole lievano]

Hello Siok Tan, the group I mentioned in the past post, is also asking pALS to send a letter to many congressmen. In their Facebook page you can find the letter and the emails to send it.

[nicole lievano]

I´m sorry you all,  Dagmar you´re right. I´ll try to find the article, but it´s in spanish.

Dagmar,  could I send it to you before so you can read it and see if it can be published?

If so, please tell me where to, email. Thanks.

[nicole lievano]

I´ve been following Nurown for a while because I joined a group in Facebook named World Fight Against ALS, they are fighting for Nurown´s approval by the FDA, even if it only worked for a specific group of pALS. It could be the first treatment for this disease after 155 years and we should be happy for it. Brainstorm is already in active discussions with the FDA and it could take years, this group started a movement  calling for Expedited Approval of this treatment around the world, of course starting by the FDA since phase 3 was conducted in the USA. I signed to back this movement and encourage you all to do the same at https://www.change.org/p/fda-approval-for-life-saving-nurown-for-als-patients

I’m not into the group best favored by this treatment, but ALS has opened my eyes to the meaning of life, it has been an Infinite learning opportunity <span lang=”en”>opportunity towards love and brotherhood. </span>

Changing subject, I recently read about a spanish doctor who is also a pALS, he has done research and tested alternative medicine treatments on his own body since western medicine has not found a cure. A few years ago he tried chlorine dioxide, a mineral substance that has caused controversy since it´s an ingredient for many cleaning products. It improved his condition being able again to eat and swallow without choking, sleeping on a flat bed, improving his speech and movement. Of course all under a controlled protocol because it could be fatal. I don’t think it is approved by the FDA for human consumption, but wanted to share with you all this information,

[nicole lievano]

ALS and every disease in the world originate from an emotional shock. If placebo group got to slower decline, it was because the patients believed they were getting the treatment and not placebo, therefore I believe there should be psychological trials for this because the pharma is clearly lost about ALS. I agree with Dagmar, if Nurown results are not what everybody expected, money should be spent on studying the placebo group.

I have experienced that when I´m stressed symptoms automatically rise.

[nicole lievano]

It happened to me, but it hurted while doing any movement with my legs and even while physical therapy. In my case it was because of lymphatic blockage of the legs. After a few days of massages for lymphatic drainage and drinking a tea prepared with soursop peel (cascara de guanabana) and boiling water,  it was gone.

I hope it helps your friend.