Introducing the ALS News Today Forums, Our Hub for Open Dialogue
Photo by Shutterstock Introducing the ALS News Today Forums.
I have exciting news to share with you about a community addition to this site!
The ALS News Today Forums, which launched today, is a space designed to give readers an easier way to connect , share comments, and ask questions related to ALS. It is open to all in the ALS community: patients, caregivers, family, and friends.
The ALS News Today Forums are a virtual, modern support group
Yes, other online groups do exist. No, our goal is not to replace them, but we can offer improvements.
For example, I enjoy the robust discussions on many ALS-related groups on Facebook. But later on, when I need to find a specific comment or link someone posted, I have to track back through endless linear feeds. More often than not, I give up searching.
Even on the page for my weekly patient column, “Living Well with ALS,” the reader comment section is not conducive to ongoing or in-depth discussions.
Organized by topic, the format of the ALS News Today Forums will be more efficient and accessible. Plus, two moderators will curate the space — I’m honored to say I’m one!
Seven subforums to participate in
Think of subforums as topic areas. As we grow, members can propose new topics where appropriate. To start us off, us moderators have created seven common areas of interest. Currently, we have:
- Living with ALS
- ALS Caregivers
- Diagnosis Information and General Questions
- Teens with ALS
- ALS and Relationships
- Research Topics
- Using Our Forums
We are a community
ALS can be isolating. Patients and their families often find they may be the only ones in their town living with the disease, which makes connecting with other patients a challenge. The progression of ALS symptoms reduces mobility and communication, and it can isolate patients in their own homes.
I hope the ALS News Today Forums will make it easier for readers to feel connected and get needed information.
Please register, build a profile, and introduce yourself to the other members. I look forward to chatting with each of you!
***
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ALS.
About the Author
Comments
John Koten
I think it would be great if you had another category for young adults with ALS.
Dagmar Munn
Great suggestion John! I will see if we can make that addition. Thank you.
Diana Belland
I always look forward to Tuesdays because that's when your latest post appears, Dagmar. I had been thinking this past week of so many questions I wanted to ask you, particularly in the areas of exercise and information you could maybe pass on to us about promising new medical treatments, but I was wondering what the best way would be to do that. So, I was thrilled this morning to find this wonderful new feature, ALS News Today Forums. I deleted my Facebook account several years ago so I've not been aware of other online ALS groups. The ALS Forums are a great way to connect, to know we're not alone, to encourage each other and to share information. Thank you so much, Dagmar, for your work in creating these new forums and for your weekly column. One quick question: I loved your Align, Lengthen, Strengthen e-book and I go back to it often. Do you have plans for a sequel or "second edition?"
Dagmar Munn
Hello Diana, Thank you for your kind words of praise! I would be happy to "chat" :) and answers your questions about exercise for ALS as well as the new treatments on the horizon.
Yes, the new ALS News Today Forums is a great way for us all to connect! Hop on over, register and take a look around. There is already a topic "ALS and Exercise" under the sub-forum "Living with ALS."
Another book? I'm hoping to. Now, if I could only find the time! :) Thanks again, see you in the Forum!
Evangelina Jimenez
I have ALS is there help for dental service , my teeth are hurting from grinding . My teeth are in bad shape and they all hurt . Please help me .
Dagmar Munn
Hello Evangelina, I too had an issue with grinding my teeth (during sleep) - - and my dentist made a pair of hard plastic guards that I wear every night. I can grind away and not hurt my teeth! Do go to a dentist for advice as soon as you can. Your teeth are important and you want to avoid having major dental work later when/if your ALS has progressed.
Do join our ALS News Today Forums here.
Also, here is a helpful piece I recently wrote on the topic of visiting the dentist when you have ALS:
Surviving the Dentist with the New Normal of ALS
Allan Frederick Moore
i select Please register and the page i get indicates i an getting Parkinsons not ALS ?
Dagmar Munn
Sorry you got that link Allan. Try going to ALS News Today and look in the upper right for "Forums." Click it and follow the directions to join.
Patricia
Hi Dagmar, I have two questions:
The first one, I don't grind me teeth but have noticed lately that I am breathing through my mouth during the night, I don't see any reason for it, since my nose is not stuffed up. Now I am waking up constantly with a very dry mouth and need to drink water. Have you any idea what's going on?
Second question. I signed in to the forums but don't understand how it works. I have seen the different topics, and also the help link but they all say you "can't add to this topic".I don't see any place to write or ask questions. Thanks
Eileen Barry
I would like to join the forum. I have bulbar ALS since August 2017. Some days are harder than others.Eileen B.
Dagmar Munn
Eileen - - just go to the ALS News Today site: www.alsnewstoday.com and look on the upper right for "Forums." Click that page and fill out the tabs to become a member.
Rosemary Kutschke
I also have Bulbar ALS...and would like to join the forum. After a lengthy process of elimination I was given the diagnosis at the age of 68..I am now 72. I have great family support...great team of doctors......I appreciate your positive and uplifting insight. Some of the other groups I have joined were just to negative...we must always accentuate the positive just like that lil old ant who moved that rubber tree plant...
Dagmar Munn
We would love to have you join the forum Rosemary! Just use the links in my column, or go to the ALS News Today page and in the upper right is "Forums."
Click that and then follow the directions to join.
Suzanne Groennings
Are there any NurOwn phase 3 trials in England or northern Europe?
Thank you.
Suzanne
Dagmar Munn
Suzanne - - here is a link to the current NurOwn trials: https://www.neals.org/als-trials/search-for-a-trial/ Perhaps you can ask these persons who are listed as contacts: Coordinating Center Contact Information
Ralph Z. Kern, MD / [email protected] / 201-488-0460
Yael D. Gothelf, Ph.D. / [email protected] Israel
Donna Hall
Had EMG done and the Dr. said the test were abnormal. My symptoms are what ALS is. Seems like all the Drs. Want is copays. My symptoms are muscle loss tingling across the top part of my back like bugs crawling. My speech is slurring and I’m drooling and fingers and toes drawling up lost a lot of weight. I can’t use my hands they are to weak and I can’t button my pants and using my hands and arms wears me out. Does anyone on here have those symptoms or does anyone think I have ALS.
Dagmar Munn
Hello Donna - - You are invited to join the ALS News Today Forums. We are an active group of ALS patients, family and friends who share support for each other as well as discuss issues and challenges faced when living with ALS.
http://alsnewstoday.com/forums/
david
when can i get als trials i will try anything.i live in the denver area. nobody cares doctors say go home an die they do not care. i do not belive they want a treatment or cure.i is all about the money, if drug companies saw how much they could profit this disease woud be cured. for 70 or more years we have known about this disease.noboby cares about als patients.
Dagmar Munn
David, this is a good link for clinical trials: http://www.alsa.org/research/clinical-trials/
ALS Association clinical trial search
Jeffrey Brown
L citrulline (amino acid). It's proven to reduce FUS protein aggregation (in the form of stress granules) in the cell cytoplasm. FUS and TDP-43 protein are amazingly similar, almost identical. It's this protein aggregation that is keeping these proteins from re-entering the cell nucleus and combining with STMN2 (gene). TDP-43 and STMN2 have to have each other to work for repair of motor neurons. No TDP-43 (and I suspect FUS) in the nucleus prevents repair from occurring.
Dagmar Munn
Jeffrey - - thank you for the information. I'm not sure where you're going with this information, or if it is more appropriate to post it in another research-related news article. But thank you for sharing.