Recent ALS diagnosis - bulbar issues only so far, ways I've been fighting it and questions:

PrimaVera

New member
Joined
Apr 23, 2020
Messages
6
Reason
PALS
Diagnosis
03/2020
Country
US
State
CT
City
Shelton
Hi Sandy, the path you are on sound exactly like me a year ago. Check out EverythingALS and HealingALS for other things to consider.
 

Sandy14

Member
Forum Supporter
Joined
Dec 20, 2020
Messages
11
Reason
PALS
Diagnosis
07/2020
Country
US
State
NY
City
Westchester
Hi PrimaVera - thank you so much for sharing those websites with me - I'm particularly intrigued by the HealingALS site. Where are you these days in terms of ALS progression? Have any of these "outside-the-box" approaches notably helped you? Funny you're in Shelton, I just had someone mention to me yesterday he was in Shelton too (though I can't recall who). FYI, I started the NAD+ IV drips yesterday and have another one scheduled for later today up in Stamford. Definitely not a pleasant experience, though I did feel much better today than yesterday and even noticed a slight improvement in my speech. Still have 3-5 more doses to go through so I'll gladly keep you updated if you're at all interested?
 

SusieN

New member
Joined
Dec 7, 2020
Messages
2
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
MI
City
Traverse City
Sandy, my sister used sativa tincture through her feeding tube to help with the saliva, and it did. She used indica tincture to help her sleep, which it did.

I would love to get a link to the studies about NADS+ that you mentioned. I have the c9orf72 gene mutations that say I'm going to come down with ALS eventually. I have been taking Elysium Basis (NADS+) for 6-7 years now (claims to slow brain aging), and recently started with their Elysium Matter that is supposed to slow brain shrinkage with age.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,656
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi Susie
are you in any of the longitudinal genetic studies? We are very close to presymptomatic treatments. Sod1 will start its first presymptomatic trial this year. C9 isn’t there yet. We need both a treatment that has been shown to help symptomatic C9 ALS and biomarkers that are reliable predictors for c9 onset. To get the latter we need more asymptomatic carriers to participate
 
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