Diana Belland

Hello Cate,

I was glad to read that you were considering using a portable shower.  I haven’t purchased one yet but I know the time will come when I will have to give up my upstairs bedroom and full bath and move to the main floor which has only a half bath.

I’m interested to know the name of the manufacturer of your portable shower.   I did a qu…[Read more]

Your attitude is inspiring, Susan!   I do hope you’ll be able to get back to traveling in your camper trailer in the future!

I completely agree with you, Dagmar.   I will continue to be very cautious about where I go, and I’ll make sure to wear a mask and practice social distancing.  Some of my friends are venturing out to restaurants but I don’t feel it’s worth taking the risk at this point.  Cases are still increasing in many states.    I may try to meet up with a…[Read more]

Dagmar, your Assert Lean-in Show Up words were a welcome reminder to me to do whatever I can to stay connected to others and to a sense of purpose during this protracted period of “social distancing.”

One of my favorites is your Always Learn Something.   I find each day goes a little better if I spend a bit of time with an interesting book or w…[Read more]

John,

I love that photo of you on your adult trike!  And what an inspiring and helpful post.

Your advice about “doing all your body will allow” is great, and it’s so true that “fighting back” through exercise, whatever we can manage safely, helps maintain a positive attitude.

Your friendship has been such a wonderful support to me since I…[Read more]

Thank you so much dear pALS for your kind comments.  I am so grateful for this forum and the friendship and support it provides.

My ALS Clinic alternates full clinic visits with a one-on-one visit with my neurologist every three months.   I was due to see my neurologist on March 20 but all in person visits were canceled, so I scheduled a phone call for April 15.  The app my doctor’s office wanted me to download to do Zoom was for Iphone 11 or later.  I have an Iphone5 and…[Read more]

Last Sunday, I reached out to two of the 54 study locations that are located within 80-90 miles of my home city and was pleased to receive replies from each the very next day.  Upon receiving my email with answers to his three questions (1. when did you first notice muscle weakness, 2. what is your SVC of FVC, 3. can you swallow pills and…[Read more]

I’m looking forward most to being able to being able to take my electric wheelchair to local parks to ride the paved trails.   I was a runner and a hiker for many years and always drew strength and inspiration from “forest bathing” before that even became a “trend.”  I’ll still take precautions, though, such as wearing a mask, washing my hands an…[Read more]

I’m trying to keep up with the home exercise routines I’ve been practicing for months which include rolling, stretching and some Pilates moves on my bed, air squats a few times a day and walking with my AFOs and rollator inside the house.  I also love using my little pedal exerciser while sitting in a comfortable chair.  I do thirty minutes of p…[Read more]

I’ve been enjoying phone calls, texts and Facetime with my daughters and with a few friends.  I’m trying to reach out to someone every day and I also make it a goal to learn something new every day.

I’m also enjoying some wonderful courses on The Great Courses Plus such as “Experiencing Hubble: Exploring the Milky Way.”  In the introductio…[Read more]

Hi, Susan,

How wonderful that you live on eighteen acres and can get out safely on these lovely spring days.  I’m glad you and your husband were able to visit your friends—it sounds like you had a great time!    Connecting with dear friends and enjoying a bit of humor together seems so vital now.

What great tips, Dagmar!

Thanks for the link to the listing of museums offering virtual tours.   I’ve started “touring” the Van Gogh Museum.   It’s excellent.  You can “stand” in the gallery and enjoy each painting in detail, free from the ubiquitous “selfie” takers!

As for reading, I love science and biography.  Recently, I finished The Disor…[Read more]

My ALS clinic rotates full clinic visits with one-on-one neurologist visits every three months.  I was scheduled to see my neurologist on March 23, but my daughter, Laura, a geriatrics and palliative care physician in New York City, advised me to cancel so I did.   She is on the front lines in NYC, seeing patients both at a nursing home and a ho…[Read more]

My husband and I returned from a ten day cruise to our home in Ohio on March 6.  We now realize how lucky we were to have made the trip at all and to be symptom free still nearly two weeks later.

These recent news items describe what’s happening in Ohio:

“In the space of two weeks, orders mandated by Gov. Mike DeWine and Ohio Department of H…[Read more]

I’d like to add an item to the list I posted previously.   I recently purchased a:

Drive Medical Folding Exercise Peddler

• It’s a convenient way to exercise legs and arms on days when you can’t get to the Y or gym or if you don’t want to invest in a full size recumbent stationary bicycle.
• It’s best to place the peddler on a mat or rug b…

[Read more]

Hello, Amanda,

This is a great question!

My husband and I have recently returned from a two week vacation which involved staying at a hotel in Ft. Lauderdale for two nights before embarking on a ten day cruise.  I’ll describe the features of our ADA hotel room as well as the ADA stateroom we had on the cruise ship.

Hotel room:

I used a large…[Read more]