Hi, Is anyone on, or planning to participate in the CNM-AU8 Trial?

I have been asked to participate next month.

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.

“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 information, resources, and tips.  Forum members are invited to comment and share their suggestions on each topic posted. Let’s help each other learn how to live with ALS.

The best resources for finding an ALS drug trial and ALS research opportunities

Many pALS and their families choose to get involved with research either in hopes of slowing down the progression and/or helping find a cure. There are research opportunities for people with sporadic or genetic  ALS. You don’t necessarily have to have ALS to participate! Some studies are in need of people with a predisposition such as a genetic mutation associated with ALS and others need controls to participate. Some reputable sites to help you look for opportunities are below.  

https://clinicaltrials.gov/ is a central database of clinical trials for all conditions, including ALS.

The ALS Association also lists opportunities at

https://www.als.org/research/clinical-trials-for-patients

Specific reputable ALS research organizations include:

https://lesturnerals.org/research-patient-center/clinical-trials-studies/

https://neals.org/als-trials/als-clinical-research

https://www.hopkinsmedicine.org/neurology-neurosurgery/clinical-trials/als-clinical-trials

https://www.miami-als.org/research/

https://www.mayo.edu/research/clinical-trials/diseases-conditions/amyotrophic-lateral-sclerosis-(als)

What else can you add to our list?

First time posting…!

I’m looking for insite as to the exhaustion levels post work out. The level of physical activity is certainly relative to the person, that is understood. But, I can work a low physical day and feel moderately tired. Yet, if my day consists of a work out (no where near like that of the past) the exhaustion leads into the next day, or two. This exhaustion includes mental, physical and incredibly emotional disappointment. The desire to keep physically active is diminishing, causing more mental strain. The fine line is for me to find, diferent for all. Just wanting to discuss this as I’ve learned SO MUCH from this forum already!

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 would apply to someone who trains for half and full marathons on a pretty routine basis? The question is in regards to my daughter. She is 30 and has been doing some pretty intensive running the last 5-8 years.

Thanks for any info. Or if you can point me in the right direction.

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 he would like genetic testing. I agree it would help with future generations. So, I am advocating for him. I have found the ALS Identified program offering free genetic screening and it can even be done from home. The big problem is that he does not have a doctor to order the test. I checked with hospice and they said their doctor would not, and would not make an acception, because genetic testing would be aggressive care.

I would appreciate anyone’s ideas. If you sign up for the ALS registry do they do the genetic testing? Is it a long process?

Thanks everyone

Julie

“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 information, resources, and tips.  Forum members are invited to comment and share their suggestions on each topic posted. Let’s help each other learn how to live with ALS.

Best questions to ask your doctor when you are initially diagnosed

Being told by your doctor that you have ALS can leave you feeling overwhelmed and unable to think of essential questions. Often all the questions come out later at home, with no doctor in sight. Or, the questions don’t come at all. If you have been recently diagnosed with ALS, here is a list to bring with you to your next appointment.

1. Is my form of ALS genetic or sporadic?
2. What medication(s) do you suggest? 
3. Should I enroll in a drug trial?
4. Would any of your current ALS patients be willing to talk (or email) with me to share their experiences?

What additional questions have you asked your doctor?

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.

“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 information, resources, and tips.  Forum members are invited to comment and share their suggestions on each topic posted. Let’s help each other learn how to live with ALS.

Our favorite ALS resources:

So many web pages, and too much advice! It’s easy to feel overwhelmed when searching the internet to answer your questions about ALS. Everyone has a website nowadays, and not all contain current and valid information. Here are a few of our best picks. 

What additional ALS resources can you suggest?

1. Your ALS Guide http://www.youralsguide.com
Improving the everyday quality of life for families impacted by ALS. Trusted information, practical tips, educational videos, expert advice, helpful resources, and more—all in one place.

2. The ALS Association http://www.als.org (and for those outside of the U.S.) The MND Association http://www.mndassociation.org Both organizations provide global research, along with, assistance for people with ALS/MND by coordinating multidisciplinary care through certified clinical care centers and fostering government partnerships.

3. Les Turner ALS Foundation http://www.lesturnerals.org Helping people living with ALS receive the best quality of care and access to the most promising therapies. Online support groups, educational resources, and webinars reach an international audience.