Diana Belland

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.

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]

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]

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]

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]

Part II:

Websites my husband and I have used for renting mobility devices for cruises (they also rent medical equipment):

https://scootaround.com/en

https://www.specialneedsatsea.com/

A useful website for wheelchair users who travel:

https://wheelchairtravel.org/

Portable folding toilet frame and carrying…[Read more]

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]

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]

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]

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]

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]

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.

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.

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]

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!

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]