Cindy

Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 3 hours, 23 minutes ago

Good morning!! I set up the lumbar puncture (Intrathecal) for the pre-fALS study for October 26th. I’ve opted out of this procedure for the past 12 years of the study, mainly out of fear. It is my understanding that the sample they get from spinal fluid is much clearer than from blood work. Also, since the therapy coming out of this study is an…[Read more]

Amanda started the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 3 hours, 29 minutes ago

Good morning – (Florida time :))

I wanted to do a check in with everyone this week. How are you doing? Are you struggling with anything ALS or non ALS related? How are you dealing with the pandemic? What are you doing to support your mental and physical health?

What is the best thing to happen to you this week?

Amanda

Amanda replied to the topic Research and Alternative Treatments in the forum Living With ALS 21 hours, 4 minutes ago

David, I agree. It frightens me to think about some of the advice being given from people who are not knowledgeable. When I was in graduate school I learned that research has to be examined closely because it can be easily slanted in many cases. You also have to consider the source of information, and look carefully at the details, especially if…[Read more]

Amanda started the topic Research and Alternative Treatments in the forum Living With ALS 2 days, 2 hours ago

On our forum, as well as other ALS related websites, alternative treatments and vitamins are a hot topic. Every pALS, and their loved ones, want to know what will help. What will slow down or stop the progression? What will make me feel better or stronger? We need to be careful when taking any vitamin or supplement because we don’t want to…[Read more]

Dagmar Munn replied to the topic Have you had COVID? Share your experience and thoughts about it here in the forum Coronavirus (COVID-19) and ALS 1 week, 2 days ago

David – – we are so sorry to learn that you have covid. Stay strong… we are sending you wishes for resilience and recovery. Please let us know how you are doing along this challenging journey.

Amanda started the topic Research and information about Biomarkers in the forum Research Topics 1 week, 3 days ago

I’m watching this presentation by Dr. Benatar on possible ALS biomarkers and I thought some of you might be interested.

Amanda replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis Information and General Questions 1 week, 3 days ago

The protein biomarker is still being studied. My understanding is that it is the same protein that is elevated in other diseases and they are trying to determine what level is indictive of ALS and not another disease. Insurance companies will not pay for tests that are considered experimental or not confirmed by research.

Amanda

Amanda replied to the topic Any news from Tofersen phase III clinical trial? in the forum Research Topics 2 weeks ago

Jean-Pierre – is this part of the same study? https://clinicaltrials.gov/ct2/show/NCT02623699

This study, along with the other Tofferson studies, is part of what the University of Miami Pre-fALS study is involved in. There are many other sites (as mentioned in the ling) that also participate in the US and Europe.

Amanda replied to the topic Pegcetacoplan Clinical Trial in the forum Research Topics 2 weeks ago

Silvia, there is some information on the website
https://clinicaltrials.gov/ct2/show/NCT04579666

and on the MDA website

Clinical Trial Alert: Phase 2 Study of Pegcetacoplan in Adults with Sporadic ALS (MERIDIAN)

Amanda started the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis Information and General Questions 2 weeks ago

I think we’ve all wondered why ALS is so difficult to diagnose and in the end, it’s basically ruling out all other possibilities. As a result of this difficulty comes much confusion about motor neuron diseases and often times misdiagnosis. Some of the health problems often considered and possibly the initial diagnosis include:

Primary…[Read more]

Amanda started the topic Caregivers and COVID in the forum A Forum for ALS Caregivers 2 weeks, 1 day ago

Are you still concerned about COVID, and are you taking extra precautions to keep yourself and you pALS safe? What are you doing?

Dagmar Munn replied to the topic Calling all forum members with an ALS-related blog in the forum Living With ALS 2 weeks, 6 days ago

My ALS and Wellness Blog shares wellness tips and motivation for persons living with ALS (MND) and for their caregivers, family, and friends. Because – – I believe that You CAN be WELL while living with ALS.

http://www.alsandwellness.blogspot.com

New posts weekly

Amanda replied to the topic Dude about diagnosis in the forum Diagnosis Information and General Questions 3 weeks, 1 day ago

Goyo,

As other forum members have mentioned, ALS presents differently in every pALS. (patient with ALS). Try to focus on everything that you and your wife CAN do right now and enjoy everything possible. It sounds like you have had second opinions (and more). Have any of the doctors that your wife has seen been an ALS specialist? That might be…[Read more]

Amanda started the topic Hurricane Ida – are you safe and prepared in the forum Living With ALS 3 weeks, 3 days ago

Hello Forum Members,

Are any of you in the areas impacted by Hurricane Ida? If so, how are you? Are you safe?

Are any of you living in the areas of the fires out west? Or in hurricane or flooding prone areas? Do you have a crisis plan? What are your plans in case of an emergency?

Being prepared for natural disasters and other emergencies is…[Read more]

Dagmar Munn started the topic Calling all forum members with an ALS-related blog in the forum Living With ALS 3 weeks, 5 days ago

Do you write an ALS-related blog? We invite you to share the blog title and its link in the comment boxes below.

We want to support our forum members and through your blogs – – know that you can have an impact on someone else’s life.

Thank you for finding the courage, and energy, to share your story and uplift our ALS community!

Dagmar Munn replied to the topic How to Post Topics/Messages/Status Updates in Our Forums in the forum Using our Forums 3 weeks, 5 days ago

Jennifer, we’d love to share your blog! This is a great suggestion… and I will start a new topic asking members who have a blog to share the link with us. Thank you!

Amanda started the topic New Members Welcome in the forum Using our Forums 3 weeks, 6 days ago

Each day Dagmar, Kevin and I check to see if we have any new member request. We work hard to make sure spammers and others with undesirable motives aren’t permitted into our online community. The number of spammers registering is staggering. What in the world are people thinking??? We want to make sure that our online community is made up of…[Read more]