Daniellem can you share your results to date?

My husband was diagnosed with Bulbar ALS seven months ago. He struggles with dry mouth and tongue at night when trying to sleep (but has excess saliva in the daytime). He has tried various sprays and gels at night but has very little relief. Do other folks with ALS have this dry mouth/tongue issue at night? Thanks.

https://www.massgeneral.org/neurology/als/research/platform-trial Massachusetts General Hospital Healey ALS Platform Trial

This is a great and comprehensive list! I recommend our members bookmark this post so that they can come back and refer to it all year long.

Big thanks Amanda, for compiling this list!

Sounds like you’ve found a good strategy to follow and it is working for you. 🙂

I know of one study that pointed to genetic ALS being triggered by strenuous exercise. But not with sporadic. After ALS diagnosis, both genetic and sporadic benefitted from daily exercise.

I believe that because the sports figures who have ALS are so highly public, we associate their sport as having caused their condition. There have been many studies but no direct link found as of yet – – only assumptions.

I agree.

Hi Leonard,

Glad to know your wife responded well to the CNM-AU8. I would also like to get this medicine and I am 36 months+ after diagnosis. You mentioned this is available from NOVA in Davie, FL. Is there any email or phone number you can share which can help me obtain this medicine?

I believe CNM-AU8 is a gold nanoparticle suspension, there…

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I inherited the gene TBK1 which causes ALS and/or FTD. My mother and 3 of her 4 siblings died of FTDementia. They all lived sedentary lives whereas I was very active throughout my life with hiking, skiing, mountain climbing, and windsurfing. I have ALS. In a webinar, a researcher discussed this possibility that activity tilted the disease to ALS.

I have the same problem. Too much exertion of any type can wipe me out for a couple of days (or more). Unfortunately, I can’t trust my body to tell me when I am overdoing it and so can easily do too much. I can still walk (short distances) and love to do so, but always carry a step counter to make sure I don’t walk too much. I work out…

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“ALS Tips & News You Can Use”

We know that newly diagnosed ALS patients and their families are well “aware” of ALS. Rather, they often ask for help navigating the ups and downs of living with the condition. So, for ALS Awareness Month, our forum moderators have created “ALS Tips & News You Can Use.” It’s a collection of up-to-date ALS… Read more

Hello Nomad,

I’m sure it’s not a miracle solution, but I’ve recently found that drinking more water (than I used to) works very well for me to combat fatigue. Now that I make sure to drink at least 1,5 liter of water (not counting coffee and other drinks) per day, I feel remarkably less tired, I can walk longer and I no longer suffer…

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What Mischa said. Hope you are successful in getting tested and any family members who want to be. My husband was tested at no cost through Biogen.

There may be something in this. The military trains hard. Football, soccer, basketball, and other sports also require hard training. Long-term physical training in some professions has been noted for higher ALS percentages. Are there any published studies on this information?

Julie, it is so caring of you to be concerned in this way. ALS is such a complex disease, and we are learning more about it every day.<div>
</div><div>My understanding, both as a physical therapist who worked with people with ALS, and also a caregiver for my husband, who had ALS, is that being healthy and strong is a good thing. It gives the body… Read more

Hi all- we are at beginning of genetic screening for ALS. My father had ALS and now my cousin has ALS.

I have read on the ALS assoc website, that if you have an effected gene for ALS it may be more likely to be turned in, active disease, in people who participate in certain activities. I think the mention was football, etc. I’m wondering if this…

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I’ve also found that pacing is a factor – – as in, normal workouts (sessions) on day 1 and day 2, day 3 is rest/mild exercises. On day 3 I feel like someone switched all the plugs – – lots of uncoordinated moment… but then the next day everything feels stronger and movements have improved mightily, so it’s a day 1 all over again.

Bottom…

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How about the best questions to ask your physical therapist? Occupational Therapist? Dietician? Speech-Language Pathologist? Others?

Hello Juliez,
There are several options -and some great suggestions have been posted. There is no wrong way to go about it as long as you are comfortable.

There is a study focusing on familial ALS – genetics. I’ve actually been tested 3 times. (As if the results would change LOL). Two for two different research programs I volunteered…

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I saved my voice on acapela.which app is easiest to use with it? I tried T D Talk. But I couldn’t find the phrases that I recorded on it.

Juliez,

There are lots of resources, and just learning how to access them. We too have Familial ALS C9orf72 gene. We have five family members with ALS. My husband did the genetic testing and we paid out of pocket of $1600.00 with AETNA. My daughter and I did her genetic counseiling before she gets tested. UTSW Genetic Counsel Team is ordering…

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Hi juliez,

In addition to a neurologist, a genetic counselor can be a great source of support and a resource for evaluating a family history of ALS. They can order this testing for your family member and help interpret any results. (Many ALS genetic counselors work closely with neurologists as well!)

You can find a genetic counselor near you…

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If you’re in the US you can get free genetic testing, without referral and at home, through Light the Way: https://portal.sanogenetics.com/en-us/study/light-the-way

Scheduled appointment with neurologist they can order a genetic test. At least mine did here is SW Ohio.

Yes! 3/2020

I also asked my doctor about continuing to go to the dentist (yes), continuing annual health screenings – – like mammograms or colon cancer (only if I were at risk), and if I should continue exercising (yes).

Hello Lis, yes – – I agree, ALS changes our lives completely. Have you participated in any of the annual ALS Awareness events? If so, which ones and have they helped you to better accept having the condition? I remember being newly diagnosed and for me, the events were confusing and I had to wait a while before feeling comfortable enough to join in.

ALS has changed my life completely I haven’t been able to take any meds for slowing progression

I was diagnosed last May. My balance and walking hav been affected. And I fight fatigue daily.

If You’d Like to get in touch my name is Lis and my email is irisbloom@gmail.com

Hi everyone,

I’m looking for help. My father died from ALS and now my cousin has ALS. From what I have read we may be at high risk of having familial ALS. My cousin was diagnosed and has since been undoctored. Refuses to go to any doctor. He did end up in the hospital recently after a fall and is now set up with hospice.

My cousin has said…

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My husband has been receiving the CNM-AU8 through EAP for about 6 months now. Haven’t noticed any change. He has fairly slow progression- diagnosed May 10, 2018. Still walks very slow with a walker around the house. Uses a wheelchair for any distance. The liquid has no taste and he just has to go in every 3-4 months to run through questions and…

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“ALS Tips & News You Can Use”

We know that newly diagnosed ALS patients and their families are well “aware” of ALS. Rather, they often ask for help navigating the ups and downs of living with the condition. So, for ALS Awareness Month, our forum moderators have created “ALS Tips & News You Can Use.” It’s a collection of up-to-date ALS… Read more

I’m less than 36 months

I was hopeful of participation. Then realized, this like ALL Healy trials, are only open to those who are less than 36 months from symptom onset. Nice they are finally permitting virtual participation. Anyone else feeling like once 36 months has elapsed you have little hope of anything including seeing ALS as a livable disease?

A few years back, I had the opportunity to work with ALS Golden West. They are a great resource for ALS patients living in California nd Hawaii. Thank you for sharing your experiences with them and, for giving them a shout-out. 🙂

No issue

Also, if you haven’t seen this article yet, it just came out:

Whistleblower Exposes Internal Email Suggesting Pfizer Offered “Separate and Distinct” COVID-19 Vaccines to Employees

https://www.thegatewaypundit.com/2024/05/whistleblower-exposes-internal-email-suggesting-pfizer-offered-separate/