-
Diana Belland replied to the topic Pratical Tips for Caregivers and Newly Diagnosed ALS in the forum A Forum for ALS Caregivers 2 years, 5 months ago
I agree with Dagmar, Andy!
Your website has a great “uncluttered” look and is easy to navigate. Thanks for sharing your personal experiences with some of the drugs/therapies.
-
Diana Belland started the topic How to Find the Right ALS Clinical Trial for You in the forum Research Topics 2 years, 5 months ago
A very informative and useful webinar was presented today by the N.E.A.L.S. Consortium titled: “How to Find the Right ALS Clinical Trial for You.”
A recording will be posted on the site by the end of the…[Read more]
-
Diana Belland replied to the topic Finding the funny – – even in ALS?? in the forum Living With ALS 2 years, 5 months ago
Dagmar, thank you so much for reminding forum members of your wonderful column, “How to Coach the Coach.”
My husband and I returned two days ago from a ten day cruise which was enjoyable but physically demanding for both of us. My husband is getting over a bad cold, and we are both in “recovery” mode, i.e. exhausted! Misunderstandings have b…[Read more]
-
Nancy and
Diana Belland are now friends 2 years, 5 months ago
-
Diana Belland replied to the topic Travel Tips & Woes in the forum Living With ALS 2 years, 5 months ago
Hi, Cate,
I agree with the points Nancy has made. We have flown several times with rollators, using a Volaris and a Hugo Navigator for different trips, and have always checked them at the gate. They’ve never been damaged.
I love the Volaris for the same reasons Nancy mentions. It’s also extremely easy to maneuver on almost any kind of ter…[Read more]
-
Diana Belland and
Kathryn F. Kennedy are now friends 2 years, 5 months ago
-
Diana Belland replied to the topic The best appliance (or gizmo/gadget) that I own is… in the forum Living With ALS 2 years, 5 months ago
Yes, Kathryn, those are great tips!
I would love to know what type or brand Gel cushion you use.
Some things that have made a difference for me are:
1. Oval 8 plastic finger splints (I wear one on the index fingers of both hands while typing on my laptop).
2. My Hugo rollator which converts to transfer chair mode.
3. My new Air Hawk…[Read more]
-
Diana Belland replied to the topic ALS and Traveling; Sharing Your Tips, Questions & Resources in the forum Living With ALS 2 years, 5 months ago
It’s so encouraging to hear from other pALS/caregivers who are still traveling with manual or power wheelchairs!
My husband and I are set to take a cruise beginning February 25, and I find myself wondering some days if it’s a good idea even though we have made all the appropriate disability arrangements with the airlines and the cruise ship. O…[Read more]
-
Diana Belland replied to the topic ALS and Traveling; Sharing Your Tips, Questions & Resources in the forum Living With ALS 2 years, 5 months ago
Part II:
Websites my husband and I have used for renting mobility devices for cruises (they also rent medical equipment):
https://www.specialneedsatsea.com/
A useful website for wheelchair users who travel:
Portable folding toilet frame and carrying…[Read more]
-
Diana Belland replied to the topic ALS and Traveling; Sharing Your Tips, Questions & Resources in the forum Living With ALS 2 years, 5 months ago
Part I:
Susana, my family and I took a cruise to Alaska in June, 2019. You will have a wonderful experience! I found that all of the ports on the cruise could be enjoyed via standard wheelchair. I saw many people using scooters and small electric wheelchairs as well. The train to Denali National Park has a wheelchair lift and the double de…[Read more]
-
Diana Belland replied to the topic Flight Accommodations Survey in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 6 months ago
Hello, Kevin,
I filled out the survey but I think a question about accessible restrooms should have been included. I sent a comment to Michael Morales about this in a private message.
Planes should ideally have one accessible restroom with grab bars on both sides of the toilet. Airports should have a greater number of “Family/Accessible” b…[Read more]
-
Diana Belland replied to the topic Look What’s New in Mobility! in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 6 months ago
I purchased a Hugo Navigator in September, 2019 after watching the demonstration video by Bob and Brad on Youtube. After an online search, we were lucky to find one on EBay in excellent condition, previously owned for only few months. The Navigator works very well as both a rollator and a transfer chair. It’s a bit wider than my Drive Nitro rol…[Read more]
-
Diana Belland replied to the topic How should ALS be treated? in the forum Research Topics 2 years, 6 months ago
Dagmar,
Thank you so much for your comment.
I have read the entire website built by phillipjax several times. I admire the author’s industry and diligence in researching a number of treatments and therapies. He lists himself as a caregiver, and I am sure his work is much appreciated by his family member or friend who has ALS. But I came aw…[Read more]
-
Diana Belland replied to the topic A Deep Dive into the Issues of ‘ALS and Exercise’ in the forum Research Topics 2 years, 6 months ago
Thank you for posting this article, Jean-Pierre!
I read the abstract and the complete article. This seems to have been a very well structured study; the results should encourage all of us who are trying to follow regular exercise routines. And it points up what Dagmar, a pioneer in the field of exercise therapy for ALS, has been suggesting to…[Read more]
-
Diana Belland replied to the topic Best Advice for New Members in the forum Diagnosis Information and General Questions 2 years, 6 months ago
Great advice, Sheila. I’m still in my first year post-diagnosis (March, 2019) and have to work at maintaining a positive attitude every day. Your comment was really helpful and I will keep your encouraging words in mind.
Thank you for posting.
-
Diana Belland replied to the topic Research, to participate or not to participate in the forum Research Topics 2 years, 7 months ago
Hello, Lea, there is a discussion of RCH-4 on the Forum here: https://alsnewstoday.com/forums/forums/topic/rch-4/
I hope the link works for you. If not, just go to Research Topics and click on RCH-4.
-
Diana Belland replied to the topic Are you getting a flu shot this year? in the forum Living With ALS 2 years, 7 months ago
My husband and I finally got our flu shots on December 23 at The Little Clinic at our local Kroger grocery store. It was easy and quick—no waiting time at all as there might have been had we chosen to get them at our physician’s offices.
I experienced very mild soreness for a day or two at the inoculation site but no other symptoms. It wa…[Read more]
-
Diana Belland replied to the topic Important Announcement for Members — About Our Forum's Holiday Schedule in the forum Using our Forums 2 years, 7 months ago
Dagmar and Amanda, thank you so much for all the wonderful support and useful information your Forum has provided for its members over the past nine months. Enjoy your break and Happy Holidays to you both and to your families!
-
Diana Belland replied to the topic What will move the needle forward in 2020? in the forum Research Topics 2 years, 7 months ago
A press release dated December 17, 2019, has good news about AMX0035: “Amylyx Pharmaceuticals Announces AMX0035 Demonstrated Statistically Significant Treatment Benefit for People with ALS in the CENTAUR…[Read more]
-
Diana Belland started the topic NEALS Webinar, 12/12/19, Offers Overview of of the ALS Clinical Trial Pipeline in the forum Research Topics 2 years, 7 months ago
“Dr. Jeremy Shefner, Barrow Neurological Institute, reviews the ALS clinical trial pipeline and answers questions about the current state of clinical research.”
This webinar provides an interesting and concise overview of promising drugs and therapies currently in the clinical trial pipeline for ALS. I was encouraged by Dr. Shefner’s o…[Read more]
- Load More