demonswithin1

Diagnosed with ALS in 2017, symptomatic for over seven years. My boys, Alex and Milan, are my 🌞, 🌙 and ☪️. My partner is an RN. My karma ran over my dogma.

[demonswithin1 @demonswithin11]

I would like to advocate on behalf of veterans with ALS. The statistics for this group are BEYOND APPALLING. THEY'RE BENEATH CONTEMPT! I'm new to this, but there's no question this is time well spent. If you are or know of a veteran with ALS, contact me with your story. Ty James

[demonswithin1 @demonswithin11]

@derekgunz This pain...is...so specific TO YOU! There's very little I can imagine that would be more cruel. To have the ambition, determination and drive to physically develop yourself, then have your body say; "F*ck you! We're going in the OPPOSITE DIRECTION!" I have your back! James

[demonswithin1 @demonswithin11]

Where the fear has gone there will be nothing. Only I will remain.” Frank Herbert, Dune

[demonswithin1 @demonswithin11]

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Frank Herbert, Dune

[demonswithin1 @demonswithin11]

@HaterAls @Julia70256353 @DrWoodcockFDA My comment was selfish and COMPLETELY watered down the anger of the original post. I apologise.

[Derek Koval @derekgunz]

#als community will you fight with me. Call tweet harass email. The @US_FDA @alsassociation @SenateDems @SenateGOP please do not stop. #lifeordeath #alstouchesall

[demonswithin1 @demonswithin11]

@HaterAls @Julia70256353 @DrWoodcockFDA Of course. I understand. I was just struggling with my own interpretation. I appreciate your comments.

[demonswithin1 @demonswithin11]

@GValimont @ArtShaky I am so very, very sorry for your loss. Sending you love, strength and peace. I'm here if you need someone. James

[demonswithin1 @demonswithin11]

@Julia70256353 @HaterAls @DrWoodcockFDA I re-Tweeted this impulsively. As much as I appreciate the message, I would NOT WISH THIS DISEASE ON ANYONE! I would prefer to delete the message but don't know how. If ALS were contagious, the first affected in my life would be my partner and children. I'd rather bear the pain.

[Brian Wallach @bsw5020]

This is me.

At 36, I was a federal criminal prosecutor.

At 37, I was diagnosed with ALS and given 6 months to live.

I’m now 41, and have founded a mold-shattering non-profit, @iamalsorg, and a transformational telemedicine company, @synapticure.

So, yeah, never give up.

[demonswithin1 @demonswithin11]

@derekgunz You better believe you're loved! This is TREMENDOUS news! Feel the pride, brother! You earned it! James

[Derek Koval @derekgunz]

Today I did .65 of a mile on the elliptical and got the kids off the bus. Lucky to be alive. And I am loved

[Christine Gilmore RN @KickenALSAss]

@brainmatters10 Amylyx is 2 medications together. Sodium phenylbutyrate and Tudca. I don't recall them doing a study on SBP by itself. But I may be wrong. There is a current Phase III clinical trial with Tudca alone.

[ALS ACCESS @brainmatters10]

I cannot believe this. AMX is just Tudca a supplement you can by on Amazon for 30 dollars. The company is worth 1 billion dollars. Yet we have Nurown and people are fighting for the supplement. Unbelievable #nurown. I want Nurown I will get my Tudca myself

[I AM ALS @iamalsorg]

Gill is recognized by the @boaflouncer today for being an all-around ALL-STAR advocate for #ALS! He inspires us through building awareness for all Vets like him experiencing this disease through the Veterans Team and VA Executive Committee.
#IFlounceMyBoaAtYou #ALSAdvocate

[demonswithin1 @demonswithin11]

Chris Mulholland, Military Times, October 28th, 2021

[demonswithin1 @demonswithin11]

In 2008, the Veterans Administration determined that military service is a presumptive causation of ALS for veterans. As veterans continue to reach the ages commonly associated with ALS, the rate of the disease will continue to increase in this population.

[demonswithin1 @demonswithin11]

Edited from Chris Mulholland's article in The Military Times, October 28th, 2021.

[demonswithin1 @demonswithin11]

In 2007, Brig. Gen. Thomas “Mik” Mikolajcik, USAF (Ret.), testified before Congress about ALS: “If these soldiers were dying in the field we would use the best existing resources to make sure they had whatever they needed to survive.” General “Mik” died from ALS on April 17, 2010