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Diana Belland replied to the topic Portable Shower in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 9 months ago
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]
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Diana Belland and
Cate are now friends 2 years, 9 months ago
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Maria Berger and
Diana Belland are now friends 2 years, 9 months ago
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Hi, thank you for accepting me. I am 67 years old and was diagnosed with ALS 3 weeks ago. My symptoms, muscle atrophy and weakness, started in my left hand and arm. I was started on Riluzole but declined Radicava for now.
I am very interested in alternative treatments and nutrition to slow down or hopefully stop the progress of this disease. Is…[Read more]
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Danielle Uskovic and
Diana Belland are now friends 2 years, 9 months ago
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Diana Belland replied to the topic ALS Awareness Month Spotlight: Susan Gray in the forum ALS Awareness Month 2 years, 9 months ago
Your attitude is inspiring, Susan! I do hope you’ll be able to get back to traveling in your camper trailer in the future!
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Diana Belland replied to the topic Easing the pandemic restrictions in the forum Coronavirus (COVID-19) and ALS 2 years, 9 months ago
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]
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Diana Belland replied to the topic Let's play the game: “a new definition of A-L-S” in the forum ALS Awareness Month 2 years, 10 months ago
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]
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Diana Belland replied to the topic ALS Awareness Month Spotlight: John Russell in the forum ALS Awareness Month 2 years, 10 months ago
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]
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Diana Belland replied to the topic ALS Awareness Month Spotlight: Diana Belland in the forum ALS Awareness Month 2 years, 10 months ago
Thank you so much dear pALS for your kind comments. I am so grateful for this forum and the friendship and support it provides.
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Diana Belland replied to the topic Remote visits? in the forum Diagnosis Information and General Questions 2 years, 11 months ago
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]
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Diana Belland replied to the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 2 years, 11 months ago
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]
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Diana Belland replied to the topic What keeps you going? in the forum Coronavirus (COVID-19) and ALS 2 years, 11 months ago
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]
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Diana Belland replied to the topic What changes have you made to be active at home? in the forum Coronavirus (COVID-19) and ALS 2 years, 11 months ago
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]
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Diana Belland replied to the topic How are you making the most of being Quarantined? in the forum Coronavirus (COVID-19) and ALS 2 years, 11 months ago
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]
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Diana Belland replied to the topic Tips for Self-Isolation During Quarantine in the forum Coronavirus (COVID-19) and ALS 2 years, 12 months ago
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.
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Diana Belland replied to the topic Tips for Self-Isolation During Quarantine in the forum Coronavirus (COVID-19) and ALS 2 years, 12 months ago
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]
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Diana Belland replied to the topic Are the clinics open? in the forum Coronavirus (COVID-19) and ALS 2 years, 12 months ago
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]
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Diana Belland replied to the topic COVID-19 Check-in: tell us how you are doing & what is happening where you live in the forum Coronavirus (COVID-19) and ALS 3 years ago
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]
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Diana Belland replied to the topic The best appliance (or gizmo/gadget) that I own is… in the forum Living With ALS 3 years ago
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…
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Diana Belland replied to the topic ADA requirements for Hotel Rooms in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 years ago
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]
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